Once upon a time, there was a little girl. She dreamed of one day growing up and accomplishing many things. She wanted to be a writer, a singer, an actress, a concert pianist, a soldier, and a lawyer. Somewhere in the nether regions of her mind, she knew she probably couldn’t do all of those things, but she sure was going to try.
But when she became a teenager, her parents stopped permitting her fanciful imaginings. They said the church taught that what she was supposed to do was get married and have children. They told her that all her goals and dreams and desires were selfish because they would distract her from what God wanted her to do. She was taught that goals and dreams and desires were for men, not women. But they reassured her that she would still be very happy because when women did what God wanted them to do, they were always happy. But if they did not do what God wanted them to do, he would think they were worthless, and they would go to hell.
This made the girl deeply sad, and a little bit confused, but she trusted her parents so she did what they said. Although she went to college, it was only so she could find a husband. She never pursued a single one of her dreams. She wanted to, but she was worried that if she did, God wouldn’t love her anymore.
After she got married, she was very excited that she was finally doing what God wanted her to do and that now she was going to be happy. Her new husband told her that he would provide everything for her, so she let him put her in a box, the way her mother had been put in a box, and her grandmother because she trusted that that was where she would be the happiest. After all, her new husband knew best, just like her father had known best, and her grandfather.
In that box, her husband told her how beautiful she looked. He entered often and made love to her, telling her she was everything he had ever wanted, that her body was his greatest pleasure, and that she meant everything to him. This made her very happy. She loved having her new husband with her inside her box. But when he was done spending time with her, she stayed in the box and he got to leave.
When he left, he filled his life with wonderful things- a career, friends, hobbies, and interests. He let her come out of her box sometimes and experience those things with him, but when they were through, she went back into her box. Occasionally, she would peek her head outside of her box and share an idea with her husband, but he would quickly reassure her there was no idea that he hadn’t already thought of, and so she would swallow her words and go back into her box.
Over time, the children came and they lived with her inside her box. They were wonderful and she loved them with all of her heart. But she started feeling a gnawing emptiness inside and she couldn’t figure out where it was coming from, after all, she was doing all the right things that she’d been promised would bring her happiness. She was pleasing her husband, she was raising their children, she’d made all the necessary sacrifices– she knew God had to be pleased with her life, so why did she feel so sad all the time?
“It must be me,” she thought. “The only explanation is that there is something wrong with me. I must not be righteous enough. Maybe despite everything I’ve sacrificed, I’m still not worthy.”
But in time, those thoughts stopped making sense to her and her feelings of unhappiness grew. They grew so big that they outgrew her fear of not being good enough. She started wanting- not just the joys of her husband’s life- but the joys of her own life. She wanted more education, her own goals, and her own dreams. She wanted a career, friends, hobbies, and interests of her own.
When her husband learned of her discontent, he said, “No, don’t you see? You have everything you could possibly want. I’ve already accomplished all of those things for both of us.”
“But I’m still unhappy,” she said.
“You have no reason to be,” he replied.
She looked around her and said, “But I do have a reason. I think… I think it’s because I live in a box.”
“But that’s where you’re supposed to live,” he explained. “I need you in your box so you can be available to meet my needs and fulfill my desires. If you left your box and I needed you, what would I do? It’s your job, your place. There isn’t anything you could possibly need that I haven’t provided for you, so you need to stay in your box.”
“But,” she said, “what if I don’t like living in my box? What if I want more?”
“More! How could you possibly want more? Look at this beautiful house I’ve built for you. Do you know how many women would love a house like this?”
“It is beautiful. I love it. I truly do, but… but I still live in a box,” she said.
“Look how perfect we look at church! Can’t you see how admired we are?”
“But, I don’t care about being admired if it means I have to live in a box.”
“But look at all the vacations I’ve taken you on! Do you know how many families wish that they could vacation like we do?” He asked.
“But those weren’t the vacations I wanted to go on, and… I still live in a box.”
“But look how beautiful our family photographs look!” he said.
“I know, but I still live in a box!”
“But look at the things we’ve accomplished and the dreams that have come true!”
“But they were your dreams!” She said, “Your goals! What about mine?”
“We’re a team! My dreams are your dreams, didn’t you know?”
“No. I didn’t know,” she said. “I thought my dreams were my dreams. I thought your dreams were your dreams. I thought we were two separate people.”
“No, I’m a separate person,” he said. “You’re my helpmeet. Just like the Bible says. Right?”
“Right…” She said, “Wait– no, I don’t want to be a helpmeet. I want to be a person. I thought… I thought I was a person.”
“Well, you see, Sweetheart, that’s where you’re mistaken,” he said. “You’re not a person. You’re a woman. You’re here to support me. And you’re doing a great job! I’ve done everything for you. I don’t understand how you could possibly be unhappy.”
“I live in a box,” she said. “It’s because I live in a box.”
“But it’s such a great box!” Her husband insisted. “Look at how great our kids have turned out. Look at the retirement account and the missions we’ll get to serve and the places we can visit.”
“But what about my dreams?” She asked.
“I told you, I’ve already reached our dreams. It’s all taken care of.”
“Then why do I feel so empty inside?” She asked.
“Gratitude. You just need to be more grateful, Sweetheart.”
“Is that what’s wrong?” She asked
“It is. Let’s count our blessings. We have so many.”
“No.” She said, “That’s not the answer. Yes, I have many blessings. But I still live in a box. I’m leaving now.”
“Wait, what? You can’t leave? But I’ve given you such a great life! We’ve made covenants. We were married in the temple!”
“But it wasn’t the life I wanted! I wanted to be a person! Not an appendage.”
“But that’s not your role. That’s not what the church teaches!”
“Then maybe I can’t be in the church anymore,” she said with a broken heart.
“How can you say that? You’ll go to hell!” He exclaimed.
“No,” she said through her tears. “That’s where I’ve been living.”
So she opened the door and left her box, and everybody judged her for it. They said she had broken her covenants. They said she betrayed a good man. They said she’d abandoned her faith. They said she was a lost soul.
But she just couldn’t stay. She knew if she did, it would be the end of her. She had tried it their way and she’d become a shadow. But now she was free. She could have her own thoughts and her own feelings and her own dreams and her own aspirations. She could be a person. A real, live, living person.
Before I even understood what Capitol Day was, Dr. Penni Sweetenburg-Lee, Director of the Partners in Policymaking Advocacy Training Program, asked all of us new students to write to our elected officials and invite them to attend. I felt completely out of my league. Not only did I not know what Capitol Day was, but I also didn’t know who my elected officials were. I quickly figured out how to look them up, used the form letter provided by my instructor, and printed and mailed each of my representatives an invitation- one to Delegate Wendy Gooditis and one to Senator Jill Vogel.
To be honest, I was really uncomfortable sending those letters. I felt unexceptional as a person and hated the thought of bothering such busy and important public figures. Surely, they wouldn’t want to hear from me, let alone be invited to an event where I would be speaking. And to be even more honest, I have to admit that I secretly hoped that they just wouldn’t respond. Yes, I had joined an advocacy training program, but I still hadn’t moved beyond wanting it to be somebody else’s responsibility to make positive change in the world- not because I didn’t want to do my part, but because I was afraid. Just plain afraid. Clearly, I hadn’t caught the vision of what Partners in Policymaking was all about. But despite my trepidation, writing those letters was a requirement for the class, so I sent them off anyway.
Next on the agenda, I had to pick an advocacy topic. Each of us in the class, as someone with a disability or the parent of someone with a disability, had heavy concerns weighing on us. As we discussed possible topics, Dr. Penni counseled us, “Whatever keeps you up at night, that is your advocacy topic.”
I knew immediately what mine would be.
My youngest daughter was ten years old and she had both Charge Syndrome and Lennox-Gastaut Syndrome. I had been her primary caregiver for her entire life and it had prevented me from being able to successfully work outside my home, which made things difficult for our family financially. We had a series of wonderful attendants who came into our home over the years and got paid to help me care for my daughter through the Virginia Medicaid Waiver, but I was never allowed to get paid myself, even though I was doing exactly what they were doing. Until the pandemic hit, that is…
When COVID-19 swept the globe and the United States Government put the Public Health Emergency in place, they also authorized states to use what’s known as Appendix K, a series of Medicaid flexibilities that help vulnerable populations during such emergencies. One of those flexibilities was that parents could now be paid to care for their own children with disabilities.
The money made a difference immediately. But we knew from the outset it was temporary, scheduled to expire six months after the Public Health Emergency ended. The first date we were given was August of 2021. Then it was extended to October. As that date neared, it got pushed back again, this time to April of 2022. I didn’t want the pandemic to go on forever, but every time that date got pushed back, I breathed a sigh of relief.
And so, as Dr. Penni counseled us to select an advocacy topic that kept us up at night, I knew that this would be mine. It was hard for me to believe that, within the context of a training class, I could actually make a difference, but I committed to myself that I would at least try.
So, after selecting “Making the Appendix K flexibilities a permanent option” as my official advocacy topic, the next item on my to-do list was to schedule appointments to meet with my legislators. For me, this is when it got real. If I had felt nervous about inviting them to Capitol Day, you can only imagine how I felt at the thought of having to speak with them one on one.
But again, it was a requirement. There was no passing this course without following each step, so on September 22nd, I sent an email to the offices of both my elected officials, and two days later, I received an email from Mariah Bowman, Chief of Staff for Delegate Gooditis, thanking me for reaching out, acknowledging that their office had received my invitation to Capital Day, and asking when a good time would be to schedule an appointment.
Crap. She actually wanted to meet with me. Well, her Chief of Staff anyway. Just as intimidating. So, I took a deep breath, emailed her back, and made an appointment to connect via Zoom the following week.
Later that day I received a response from Jenna Moon, a member of Senator Vogel’s staff. She said she would be happy to set up an appointment for me to meet with Senator Vogel, but wondered if I would be willing to tell her a little bit about my concerns. So, I sent her a long email and explained in detail how imperative it was for my family that Appendix K be extended permanently. Jenna responded enthusiastically, thanked me for my detailed explanation, and said she would get back to me soon.
On September 29th, I met with Mariah Bowman. Because I was so nervous, I asked if I could read a prepared statement that we could then discuss. She was very gracious and sat and took notes as I spoke. When I was through, it was clear her interest had been piqued. She asked question after question, trying to understand what Appendix K was, how it affected our family, and what I thought could be done to make it permanent. She admitted that prior to our conversation, she had been completely unaware of Appendix K and its impact on families, and was confident Delegate Gooditis hadn’t heard of it either. As we concluded, she thanked me for educating her and she promised to relay all of the information I had shared with Delegate Gooditis. She also promised that she would delve into research and get back to me soon regarding whether or not she thought they could help.
As I got off the call, I was, quite frankly, amazed. I hadn’t known it was that simple. I didn’t know that what I thought and experienced in my life mattered to my elected officials. I knew in theory that they were there to serve me, but I had always considered it to be in an arbitrary way- not personally- not in a way that might affect the daily life of my family.
So that was my first major lesson of this experience. My elected officials are there to serve me. I have a right to reach out to them and ask for their help. And if I’m brave enough to put myself out there, I might be the one to educate them.
In the early days of October, I continued to do research and sent any information I found over to Mariah Bowman. Each time she thanked me and filled me in on what she was doing on her end.
Around that time, I received an email from Meghan Ashburn, a fellow parent advocate in the Partners in Policymaking program. In one of our previous PIP meetings, she had taken note of all the parents who were advocating for the permanent extension of Appendix K, and she wondered if we all might want to work together. She, Catherine Rey, Kate Oppe, and I (as well as several other parent advocates who ultimately chose other topics for their legislative project) exchanged emails and had zoom conferences periodically to share ideas and research, and to offer support.
Having those three moms in my corner was imperative to my ability to navigate the system and gain confidence that I could make a difference. We were all beginners, but as we shared what little information we had with each other, our cache of knowledge and resources grew.
I think we all felt like little Davids up against a giant Goliath. Parents had been asking DMAS (the Department of Medical Assistant Services) to allow them to be paid caregivers for their own children with disabilities for years. We were not the first to advocate for this, and surely, we wouldn’t be the last. None of us was under the illusion that we could perform miracles, but we knew we had to try.
We were fortunate in the following weeks to have several important people willing to engage with us in conversation. Lucy Cantrell, from The Arc of Virginia, advised us regarding the importance of using accurate and precise language in our advocacy work. And Teri Morgan, Executive Director of the Virginia Board for People with Disabilities, counseled us regarding timing.
“I do think that it is a good time to advocate for the continuation of allowing parents of children under 18 to be the paid attendant,” she said in an email. “In Medicaid terms, this is called… ‘legally responsible persons’… Virginia Medicaid is able to allow this due to the approved Appendix K application. But, to make it permanent, DMAS would need to amend its waiver applications with the Centers for Medicare and Medicaid Services….”
“There are many varying opinions about parents of minors being the paid attendant. I think there’s a case to be made based on the direct care workforce crisis — which isn’t going to get better soon…. A lot of education would need to be done about why this is good for families. Sometimes a parent is not able to work outside of the home because of the supports their child needs — this option can add stability to the family unit, both in terms of services provided and financial stability. [But] it will be a big hurdle to overcome the policy concerns of Medicaid and others….”
She then helped us strategize, “In my opinion, the combination of personal story… with data and… policy recommendations is most effective. I think speaking to how you and your family have benefitted from [Appendix K]… is an important perspective to share. And… speaking to the impact it may have on… your family’s stability.”
I took the information I was learning and applied it to the writing of my Capitol Day speech. Since my initial confusion, I had learned that Capitol Day was an event where our elected officials were invited to form a mock legislative panel and listen to us students in the Partners in Policymaking program deliver our three-minute testimonies on our chosen advocacy topics. The purpose of the event was to give advocacy trainees practice advocating in front of real elected officials.
In my testimony, I planned to share a brief explanation of both the nature of the Appendix K flexibilities and the challenges my daughter faced which prevented me from working outside the home. And then I planned to focus the bulk of my testimony on the plight of single parents and how impossible it was for them to earn an income and care for their vulnerable children. I planned to argue that “if the Department of Justice [had] indeed expanded the understanding of [the Supreme Court ruling] Olmstead v. L.C. from getting people out of institutions, to assisting people to remain in their homes, then allowing parents to be their own child’s paid caregiver [had to be] part of that assistance. For some parents, it [was] the only way to earn an income and keep their children in their own homes.”
Few people knew, but in the Fall of 2021, I was about to go through some difficult changes in my own life. My marriage was on the verge of ending, and as my involvement with Partners in Policymaking began, I felt very uncertain about what my future would look like. But I was confident I was making the right choice and as I tackled this speech advocating for parents to be paid caregivers, I knew I had to think of the single parent. After all, I was about to become one.
In the meantime, all tidbits of information I came across, either through my own research, or that which was being shared by my fellow advocates, I sent over to Mariah Bowman in Delegate Gooditis’ office.
In mid-October, Catherine shared with our group that she and Kate (who lived in the same senate district) had a joint meeting with their senator, Senator Hashmi, who suggested to them that it would be wise for all of us to testify at the next Virginia Disability Commission meeting which would be held the following month. That, to me, sounded like the most daunting thing to date. Testify? As in, actually, testify? In front of a real legislative commission? I couldn’t wrap my head around it. But of course, I told Catherine I’d be happy to do it, and then went back to focusing on my mock testimony that I was preparing to deliver in front of our mock legislative panel on Capitol Day.
As the first weekend of November commenced, our entire PIP class was ready for our big day, but we were all on edge. Neither of my elected officials had accepted my invitation to attend, which initially was a relief to me, but at the last minute, I received an email from Mariah Bowman telling me that she would be happy to attend in Delegate Gooditis’ stead, so I found the link and sent it to her.
Capitol Day ended up being one of the most moving days of my life. As I listened to my fellow advocates speak about issues that not only kept them up at night, but that felt like life or death to them, just like my issue did to me, it was difficult not to become emotional. I, of course, was especially moved by the testimonies of my little team of moms, Meghan, Kate, and Catherine. Their stories were so similar to mine, yet with their own pain, and their own frustration, and their own heartache. The details may have been different, but the resulting anxiety and sleepless nights were the same. I found myself becoming more and more emotional as the day proceeded.
And I wasn’t the only one. After Kate gave her testimony, something unusual happened in that her delegate, Delegate Robert Bell, stopped the proceedings and took the time to talk to Kate about her circumstances with her son. Delegate Bell then shared with the class his own experiences being the father of a now-adult child with autism, and he basically promised Kate, and the rest of us, that he would do everything in his power to make the flexibilities allowed under Appendix K a permanent option for parents. He said he thought it was ludicrous that it had taken a pandemic to get parents what they needed, and he wanted to make sure this option was not taken away from them.
We were stunned. This was supposed to be a mock legislative panel. Not a real one.
But the testimonies weren’t over, and so the rest of us continued. By the time I spoke, I was so overwhelmed by the power of all of our collective voices, that when I opened my mouth to speak, my emotions came out instead! Was I crying? I couldn’t actually be crying! This was Capitol Day! I had been practicing this speech for weeks! How could I possibly be crying?
I reassured my fifteen-year-old later when I was recounting the story that I hadn’t ugly cried. I just had a very emotional voice as I spoke. She was still horrified on my behalf. But, I explained, I just pushed through until I got all my words out. Thankfully my fellow advocates reassured me later that my emotions made my testimony more powerful, not less, and in fact, when Mariah Bowman followed up with me that afternoon, her words confirmed their reassurances. She told me that my testimony was “moving and powerfully delivered.” And she said she looked forward to our continued collaboration on “this important issue.”
Several other people in attendance that day would prove to be imperative to the remarkable events that occurred in the following months. Senator Adam Ebbin sat- mostly quiet- but listened intently to each word that was spoken, taking notes, and making several encouraging remarks throughout. And Tonya Milling, Executive Director of The Arc of Virginia, also attended that day.
Prior to Capitol Day, The Arc of Virginia, arguably the most influential advocacy organization serving the disability community in the Commonwealth, had already drafted its Legislative Agenda for the 2022 General Assembly Session. But after Capitol Day, they decided to go back and add our issue- that of Parents as Paid Caregivers- to The Arc’s agenda! Because of what we had said! Our little group of moms! So, following the event, Tonya Milling got directly involved with our little team of advocates-in-training and helped us with our efforts surrounding Appendix K. Her guidance and support proved imperative to the rest of us knowing what we should be doing as we moved forward.
Thankfully during this time some of our anxiety was eased when we learned that the Public Health Emergency had been extended yet again, which meant Appendix K was also extended, this time through July of 2022. We all breathed a collective sigh of relief knowing we had just been given a few more months. But we knew it wasn’t enough. We had to figure out how to make it permanent. So, we all went back to our elected officials to try to drum up support for Delegate Bell.
I sent an email to Senator Jill Vogel’s office, who I had not heard back from in the two months since our initial communication in September. “Hello Senator Vogel,” I began, “I wanted to follow up on our previous thread and make you aware that Delegate Robert Bell is sponsoring a bill to make permanent the temporary measures granted through Appendix K that allow parents of children with disabilities to be their own child’s paid caregiver. I’m writing to ask you to add your voice to his and help get this bill passed. It would mean so much to so many Virginia families who not only carry the burden of caring for their disabled loved ones but who are also unable to be gainfully employed because of it. It makes no difference to the state Medicaid budget if a hired caregiver is getting paid to care for a child with disabilities, or if a parent is getting paid. And in light of the state-wide carer shortage right now, it is imperative that parents be allowed to take on that paid caregiving role. Thank you in advance for any support you can offer Delegate Bell on this important issue.”
It was mere minutes before Jenna Moon responded. “Susannah, I am so happy to hear this! We still have not gotten together to discuss our bills for the upcoming session, but I am adding this to our list to discuss soon. What is your phone number? I have information on the current law that I had asked for in September from legislative services and will get that to Senator Vogel along with your request. I will also have her reach out to Delegate Bell to discuss what language he is putting in.”
This was another important lesson to me during this process. It was easy to assume when I hadn’t heard back from Senator Vogel’s office in September, that they simply were not interested in this issue. But what this exchange taught me was that it wasn’t that they weren’t interested, it was just that they were busy! And they were all too happy to hear from me again and to be reminded of how important this issue was to me.
Another important lesson came from Jenna Moon’s acknowledgment that I had just provided them information that they previously did not have. Before this experience, I assumed that elected officials somehow knew what other elected officials were up to. But of course, that’s not always possible. As it turned out, the information I shared with Senator Vogel’s office was imperative to their ability to help me. I learned how much impact I could have on the process simply by keeping my elected officials informed regarding the issues that I cared about.
On the evening of November 16th, The Arc of Virginia held their Legislative Rally, and it was thrilling to hear Tonya Milling tell the hundreds of virtual attendees from the various disability communities throughout the Commonwealth of Virginia that, due to the advocacy of current students in the Partners in Policymaking Advocacy Training Program, that they had added ‘Parents as Paid Caregivers’ to their official 2022 General Assembly Legislative Agenda!
Just two days later, on November 18th, the Virginia Disability Commission meeting was finally held. All of us had prepared to speak, but because the date and time were announced just days before the meeting, some in the group had conflicts and couldn’t attend. It ended up being just Kate and me, as well as another advocate, James Shea, who was not part of the Partners in Policymaking program, but who had heard about our efforts through Catherine and decided to join our group. James’s daughter Lydia, who had had disabilities, had recently passed away, and he wanted to advocate on behalf of other families regarding Appendix K as a way of honoring his late daughter.
The night before the meeting, Tonya scheduled a Zoom call with us to strategize. Kate shared what she’d learned from a recent phone call she’d had with Delegate Bell, and Tonya shared that The Arc had heard from Delegate Bell’s office as well and were informed that this would likely not be a bill, but a budget amendment instead. The processes were different, she explained, but had the potential to be just as effective. I shared with the group that Senator Vogel would soon be reaching out to Delegate Bell’s office to add her support. Tonya was thrilled and explained how vital it was that we get support in both the House of Delegates and the State Senate. She hoped that perhaps Senator Vogel would be a good fit for patronage, along with Senator Ebbin.
The next day, Kate, James, and I testified before the Virginia Disability Commission, and those who were unable to attend submitted written comment for the committee to later review. Our hope, as counseled by Tonya, was to help shape the direction the committee chose to go in their choice of legislation to back for the upcoming General Assembly. Thankfully, the response we received from them was positive. Several sitting members addressed us directly after we spoke, but I’ll always remember what Chairwoman Kaye Kory said directly to me. She thanked me for helping them understand the urgency of this issue, and then she said, “Don’t stop fighting for this until you get it.”
That was powerful. It drove home two important points. One- that even though elected officials have a lot of power, they don’t have total control, and there is no way they can predict beforehand if a piece of legislation will pass. And two- never give up. Ever.
The week of Thanksgiving, Mariah Bowman reached out to let me know that their office had requested a bill draft for the changes we were advocating for and that they expected the draft to be back by early January. She confirmed that Delegate Gooditis planned on carrying the bill as well!
Wow! It was official. My delegate was co-sponsoring the budget amendment for the Virginia House of Representatives along with Delegate Bell. My delegate! Mine! Someone who hadn’t even heard of Appendix K two months prior until I contacted her office and educated her on the issue. I did that! Me! Unexceptional me!
I quickly responded and said, “Mariah! I cannot tell you how much this means to me!!!! The words THANK YOU are so inadequate. I am profoundly grateful. Please express my gratitude to Delegate Gooditis. This is such fantastic news…”
When you are that grateful, all professionalism goes out the window.
And as if I couldn’t be any more excited, three days later I received the following email from Jenna Moon, “Susannah, Sorry for the delay. We have put on a placeholder and are awaiting a draft on a bill. I will make sure it mirrors Delegate Bell’s bill. I am not sure if it will be submitted or we will sign on to his. It is still early in the stage, but wanted to keep you in the loop. Senator Vogel will call you with any questions. Thank you for your patience and I am praying your situation is remedied.”
Speechless. Now my senator was also drafting a bill on my behalf, someone who, again, didn’t know about Appendix K until I told her about it. I was simply stunned.
Tonya Milling was thrilled to hear this news and promised to reach out to Senator Vogel’s office to coordinate their efforts with their other potential senate patron, Senator Ebbin.
In the midst of this, Tonya gave us a great education regarding the importance of honoring legislative relationships: “We have contacted Vogel’s team to let them know another Senator was in play with us before them, they are cool with it. It can get tricky, but we want to “protect” our patrons and not cast too wide a net. We want to avoid duplicative legislation in the same house, and we want to protect the “win” for our patrons. Now, of course, there may be other reps that put something in because they heard from their constituents and that is fine, but we just don’t want to “shop” our bills when we have a patron secured. Also, whatever bill is with our patron is the one we put on our agenda and do the groundwork with… We can set another meeting of our internal group prior to session to prep, let me get more ducks in a row after [the] Ebbin meeting. Thanks!”
On December 7th, Tonya sent us the following update:“Hi All, Met with Sen. Ebbin this morning, he happily agreed to submit this Budget Amendment. We shared with him that Vogel also supports, so Ashley (The Arc’s lobbyist) has reached out to Vogel’s office to see about co-patronage. Ashley will coordinate between their two offices. Also, reached out to Bell for language, but we do not yet have language, which is not unusual since the deadline for Budget Amendments is after session starts. So, we are in good shape. Thanks!”
We were all very eager throughout December to keep advocating, but Tonya encouraged us to sit tight. She said the legislators were hard at work behind the scenes, and just because we couldn’t see anything happening publicly, didn’t mean important work wasn’t being done behind closed doors.
I did finally hear back from Delegate Gooditis’ office on December 22nd. Mariah confirmed what Tonya Milling had already told us, that this would be a budget amendment, rather than a bill. But then Mariah asked if I might be free the following week for a brief phone call from Delegate Gooditis who would like to speak to me about my advocacy work. I told her I’d be honored.
On December 30th, Tonya reached out to encourage all of us to sign up to speak at the House and Senate Finance and Appropriations Committee Public Budget Hearings which would be held on January 5th. She said, “Since this effort is a budget amendment I think this is an important place for you all to testify… We are planning to have strong speakers at each hearing, then have our membership email and call the day of hearings to create a flood of outreach. Session starts officially the 12th… Ashley will keep us all posted on opportunities as we go. Let me know questions thanks and Happy New Year!”
Unlike the Virginia Disability Commission, speaking at the Public Budget Hearings was much less personal. There were over sixty people signed up to testify at the Northern Virginia hearings and I had to sit on Zoom for several hours listening to others testify on various topics before it was finally my turn. I knew in advance that no feedback would be offered, but I was glad to know that both Senator Vogel and Senator Ebbin would be in attendance at my particular hearing that day. The various members of our little advocacy team were in constant communication with each other, even though we were all speaking in different regions. “Kate and I have gone! You got this, Susannah!” Catherine e-mailed me about halfway through the session.
I had now testified before three legislative panels in the course of two months, and I realized as I concluded my testimony at the Budget Hearings, that all of the pent of fear and anxiety I had experienced the previous September when I had embarked on this advocacy journey had evaporated. I, quite simply, wasn’t afraid anymore. I realized there was a power in using my voice that I’d never tapped into before. Just the sheer act of speaking up and advocating for a cause that was important to me had power in it- regardless of the outcome.
This was brought home more fully the next day when I had the opportunity to speak one on one with Delegate Wendy Gooditis. First, she thanked me for my “relentless” advocacy work, and then she asked me all about my family. We spoke a bit about her family, and then she shared how important it was that I keep advocating for this budget amendment because, despite all our hard work, there was still no guarantee it would pass. It was lovely to talk to her. I felt honored that she’d taken the time to call.
But the most important part of that conversation for me was that when we got off the phone, I knew I was her equal. We were just playing different roles in life. She had power and authority that I did not have, however, she worked for me! I had the power of influence amongst her constituents and could help or hurt her ability to get re-elected. The Partners in Policymaking program taught me that my voice mattered, too.
On January 12th, Delegate Bell’s office finally distributed the exact language for the budget amendment. It was very meaningful to me that they asked for our feedback, and when there were several points that the four of us moms didn’t like about the language, we proposed edits, and they actually listened! They didn’t give us every edit we asked for, but they changed the few things we had major issues with, and the amendment they ultimately submitted was much more aligned with what each of us was comfortable with.
On January 20th, the final version of the budget amendment, sponsored by Delegates Bell and Gooditis in the Virginia House of Delegates, and by Senators Vogel and Ebbin in the Virginia State Senate, was made public. The amendment read as follows:
“Pending CMS approval, the Department of Medical Assistance Services (DMAS) shall allow legally responsible individuals (parents of children under age 18 and spouses) to provide personal care/personal assistance services and to be paid for those services when circumstances prevent an individual from being cared for by a non-parent caregiver. Any legally responsible individual who is a paid aide or attendant for personal care/personal assistance services shall meet all the same requirements as other aides or attendants. DMAS shall promulgate emergency regulations for the continuation of parents/spouses as personal care/personal assistance providers.”
We were thrilled and watched eagerly as the various patrons presented the budget amendments during the General Assembly Sessions. But the question still remained, would the amendment get enough votes?
On January 25th, I had the opportunity to sit down with Khalilah Jones, a fellow PIP Advocate, and the Outreach and Public Relations Coordinator for Moms in Motion, and talk about my experience as a caregiver for my daughter with disabilities. Additionally, she gave me the opportunity to talk about my advocacy work surrounding Appendix K, and to ask for continued support from elected officials throughout Virginia. The interview, which she posted online, ended up getting several hundred views and was used as an advocacy tool amongst my fellow PIP advocates to further convince those in power to support this amendment. But the most important part of that experience for me personally was that, besides a few notes I’d jotted down in advance, I was able to speak entirely off the top of my head. My thoughts were clear, I was confident in my perspective, and I didn’t feel nervous at all.
As the weeks passed, we knew we were getting close to the end. Tonya Milling sent the following message to our team on February 8th: “Hey all, this week is final week to have real influence over what ends up in the budget… where parents as providers needs to be. This weekend the budget committee for House and Senate will meet, and they will continue meeting all next week to finalize their budget. The budget will come out Sunday 2/20… Now through Friday the 11th, I suggest emailing the full money committees, if you have limited time, prioritize the HHR members… I will send them The Arc budget list again Friday. Reminder you can attach our agenda if you would like and please refer to items 304, 41s, 23h, 58h.”
So, I spent the entire afternoon emailing a long list of Delegates and Senators.
Dear Senator McClellan…
Dear Delegate Brewer…
Dear Senator Hanger…
Dear Senator Barker…
Dear Delegate Rasoul…
“I am the mother of a child with severe disabilities here in the Commonwealth of Virginia. The Appendix K flexibilities allowed under the Public Health Emergency have drastically benefitted my family as they finally allowed parents to be paid caregivers for their minor children with disabilities. Due to the hard work of Delegates Bell and Gooditis, as well as Senators Vogel and Ebbin, we now have the chance to make permanent these measures which allow parents, many of whom cannot work elsewhere due to the burden of their child’s needs, to continue to be paid caregivers for their children on a permanent basis. You have the ability to make a difference with your vote and influence in the General Assembly. Please support Items 304, 41s, 23h, and 58h. I cannot emphasize enough how this would benefit my family and help to alleviate the financial burden we currently carry. Thank you, Susannah Taylor”
And with that… we waited.
Day by day… each one getting us closer to the 20th. And as that Sunday afternoon came to a close and I flipped open my laptop to browse through my e-mail, what I found was one simple line from Tonya Milling:
“Hello all. The approval of Parents as Providers is in both the House and Senate Budgets, making final approval very likely. Great work, congratulations to everyone.”
And that was it.
I sat at my computer and I cried.
We did it.
We actually did it.
I couldn’t believe what we’d accomplished. All because four moms of children with disabilities, who felt like they were at the end of their rope, carrying the weight of the world on their shoulders, decided to use their voices to speak up and ask their elected officials for help.
When I thought back over how afraid I had been the previous September- so much so that I actually hoped my elected officials wouldn’t respond to me… When I thought back over the statement I’d prepared to read to Mariah Bowman because I’d been too nervous to attempt talking off the top of my head… When I thought back over all the parents who had been asking DMAS to allow them to be paid caregivers for years, even decades, with no response… And when I thought back over how improbable a miracle had been… I had only one thought come to my mind.
What if we hadn’t tried?
With little hope of success, against all odds, with no indication there was any chance we could accomplish what we were attempting, we had still tried.
And in the end that’s all that mattered.
We still have to wait for the House and Senate to reconcile their budget amendments and for Governor Youngkin to sign the bottom line, but for all intents and purposes, we can now say that, with a lot of help, we successfully got a piece of legislation passed through the Virginia General Assembly before we had even graduated from our advocacy training program.
To all those who helped us along the way: Delegates Robert Bell and Wendy Gooditis, Senators Jill Vogel and Adam Ebbin, Mariah Bowman and Jenna Moon, Tonya Milling, Lucy Cantrell, Ashley Wright, and everyone else at The Arc of Virginia, Delegate Kaye Kory and all the members of the Virginia Disability Commission, and to all the PIP Advocates, especially Meghan Ashburn, Catherine Rey, Kate Oppe, and Khalilah Jones, as well as our non-PIP Advocate James Shea, and of course Teri Morgan, Dr. Penni Sweetenburg-Lee, and all others at the Virginia Board for People with Disabilities and the Partners in Policymaking Program: Thank you. This could not have been accomplished without all of your help. We are truly grateful.
But most of all, to all the parents who offer relentless care to their children with disabilities, who never get enough sleep or time off, who constantly worry about money and services, who often feel isolated and alone, and who fight and advocate for their children day after day with no end in sight, but who, if given the choice, would choose this child and this life all over again, we hope this change in the Medicaid system helps to alleviate the financial burdens that you carry, at least in some small way, for many years to come.
There’s a strength that comes from listening to your child cry for hours on end knowing there’s absolutely nothing you can do to help her.
There’s a strength that comes from lifting a ten-year-old in and out of bed, in and out of her feeding chair, in and out of the shower, in and out of her car seat, and in and out of her stroller.
There’s a strength that comes from managing the ophthalmologist, cardiologist, audiologist, endocrinologist, neurologist, geneticist, special educator, mobility specialist, physical therapist, occupational therapist, speech therapist, hearing therapist, vision therapist and feeding therapist.
There’s a strength that comes from developing ninja-like reflexes to avoid a scratch, a hit, a bite, a hair pull, or a kick in the face.
There’s a strength that comes from loving a child with such intensity you think it might actually burst your heart open knowing that that child could not live if you did not do what you have spent ten years developing the strength to do.
And there’s a strength that comes from accepting that this is what the rest of your life will look like and being at peace – 100% okay with it – but not just okay with it – profoundly grateful because without all of the personal sacrifice, you wouldn’t get to have her – your darling girl, your heart, your soul, your everything.
But as that strength develops hour by hour, day by day, month by month, and year by year, you get to the point where you are no longer willing to tolerate things you have always tolerated…
From the earliest moments of my childhood, I was taught that it was my place in the world to please – to please my parents, to please my teachers, to please my religious leaders, to please my siblings, to please my neighbors, to please my friends, to please my husband, to please God…
And I was taught that my Value depended upon how successful I was at doing that — that sweet girls, nice girls, agreeable girls were the most valuable kind.
So when I had an opinion that differed from somebody else’s, I buried it. When I had a goal that got in the way of what other people thought I should do, I buried it. When I had a feeling that might inconvenience someone I loved, I buried it.
And the message was continually sent that by burying my thoughts and feelings and goals and desires and hopes and dreams that I was aligning my will with God’s and earning my place in heaven.
It was ingrained in me that humility, submissiveness, meekness, long-suffering, patience, kindness, and turning the other cheek were the qualities that mattered – the qualities that made a girl worthy.
This pursuit of worthiness, and its sister message “Your worth is conditional” shadowed my thinking for nearly four decades, but little by little these last ten years as I have advocated for a little girl who could not advocate for herself, that shadow has shifted and the Revolution Brewing in My Soul has Surfaced.
For the first time, I can see the truth staring me right in the face, and that is that living my life focused on pleasing other people did not make me more Worthy, it made me more Vulnerable to Men who were raised in a world built By Men, For Men, who claimed to love me but who didn’t know how Real Love behaved and who believed that because I was a woman, my job was to please.
I was raised by such a man.
And then I married one.
Like my mother before me, I have experienced inequality in my marriage at every turn, from the first moments of its conception until today and it is killing me.
Too often I have been told that the Girl in Charge was sent to me because I was special. But I have come to believe with a conviction more firm than words can express that no, in fact, she was sent to me because I was broken.
I was broken because I was raised watching my father emotionally batter my mother. I was broken because I was raised in a religious culture steeped in patriarchal dominance. I was broken because I was taught that my value depended upon what men thought of me. I was broken because deep down I believed that I Didn’t Actually Matter – that what I wanted, how I felt, what I needed, what I hoped for, what I desired, was immaterial – my job was to please.
I was, after all, just a girl.
For the past few years, I have been living in a place of in-between – smiling on the outside, but dying on the inside – trying to keep the peace for my kids – trying not to rock the boat, but knowing I couldn’t go on like this forever. Everything on the outside has looked the same, but I am not the same.
And the time has come…
I can no longer stay silent about the inequalities I have experienced within my marriage. I can no longer stay silent about the policies in my religious tradition that at the very least have propagated, if not promoted, the inequality of the sexes. I can no longer stay silent about men, who, within that religious framework have been abusive and oppressive to their wives with zero accountability from the very leaders who claim to have the best interest of those women at heart.
I can no longer stay silent.
The time has come for me to use my voice to speak up and speak out, for myself, and for my children.
My family is broken.
My religious culture is broken.
And they will not be whole until women are treated as equals.
What caring for the Girl in Charge has taught me these last ten years is that I don’t have to take it anymore. The way she demands autonomy has transformed my thinking and given me permission to do the same.
Watching A GIRL – MY girl – the Girl in Charge – A Fierce Warrior Princess – Unapologetically Own Her Own Worthiness has Healed My Soul. She has taught me that my job is not to please, my worth is not conditional, my boundaries should not be crossed, my opinions are valid, my goals are important, my feelings do matter, my dreams are not an inconvenience, my voice should be heard, my existence makes me worthy and that like Her, I have and have always had the right to be a Girl in Charge.
Throughout most of history, people with disabilities lived on the margins of society. They were most often destitute, begging on the streets or wasting away in poor houses. Social reformers in the mid 19th century began to believe that with some education, children with disabilities could grow to contribute to society in a positive way. Training schools were opened to offer pupils advancement in motor and sensory skills, basic academic education, and lessons in self-sufficiency. The goal was to prepare students to return home and interact in a positive way with the rest of society. For those with mild disabilities, these schools proved to be a great success, giving families hope and assistance for the first time. And as word spread, more and more training schools opened around the country.
But with the economic downturn in the late 1850’s and the outbreak of the Civil War, focus on training children with disabilities diminished. These children began to be seen by society as a financial burden, rather than a population that needed to be helped. The educational focus of the training schools quickly turned into a custodial one. Parents were told there was little that could be done for their children, and it was best to place them in these institutions where at least their physical needs could be met. Because it was difficult for physicians to tell the difference between mental illness and developmental disability, these two populations were often intermixed within the same facility. They were called ‘asylums,’ meaning ‘secure retreat,’ and the residents were now referred to as ‘inmates’ rather than ‘pupils.’
It didn’t take long for the expense of such institutions to drain available public funds. Efforts were made to economize and to make the institutions more self-sufficient. Despite their limited resources, many facilities attempted to maintain their integrity as places of compassionate care. But over time, most were not successful.
In some locations, higher functioning children were used as free labor to work in laundries and farms. But as overcrowding increased, supplies still ran low and children within these institutions suffered from neglect. Stories were told about children sleeping on floors, rarely being bathed, seldom going outside, having inadequate nutrition and clothing, and spending almost every day in the same room.
Many children also lived in daily fear of their caretakers. Overworked and underpaid, it was not uncommon for members of staff to take out their frustrations on the children, abusing them both verbally and physically, and, in some cases, sexually. Visits from family members were discouraged and at times, outright denied. There was little oversight, and what went on inside the institutions became shrouded in secrecy.
Segregating those who were different was common practice in society during this time. Unless a family was wealthy enough to care for a disabled child at home in private, parents were pressured to place their children in these institutions- physicians and government officials insisting it was the best place for them. These placements became standard practice by the late 1800’s and continued for many decades into the 20th century. Many children grew up in institutions, never knowing the love of a family.
In the 1920’s, reform movements began to form in small disorganized groups around the country. A few educators noticed that some of their mildly disabled students benefited from one-on-one attention, and the seeds for special education began to be planted.
Some parents of children with disabilities, traumatized by the separation, began to organize in hopes of supporting each other. Many wanted to bring their children back home, but their biggest hurdle was the lack of community services and their inability to financially meet their children’s medical and educational requirements. All state funding at this time went directly to the institutions.
Another roadblock parents ran into was the misconception that they themselves were responsible for their children’s disability. It was a common belief that children were born disabled because of the moral failings of their parents. The concerns and wishes of parents were rarely taken seriously and doctors continued to encourage institutionalization.
An unexpected breakthrough came during WWII when many of the male members of staff at these institutions were drafted into the war. In some cases they were replaced by conscientious objectors, who subsequently conscientiously objected to the conditions they discovered inside these state run facilities. They were outspoken, and were able, for the first time, to raise public awareness about the circumstances in which these children were living. After being invisible for decades, the plight of people with disabilities was finally the focus of public attention again.
After the war ended and the United States began to enjoy an economic boom, people were able to refocus on social reform. Parents began to organize with new fervor and demand better services for their children. Many of them started their own services in their homes and neighborhoods, but they still lacked funding and support from society at large.
Two courageous mothers made a huge impact on public opinion during the 1950’s when they published books about their disabled children. One was Pearl Buck, the Pulitzer and Nobel Prize winning author of The Good Earth. And the other was Dale Evans, the wife of American singer Roy Rogers. Public opinion swayed against state run institutions in response to these books, and funding for parent organizations began to pour in from private donors. More and more parents formed their own organizations and demanded better services for their children. By the end of the 1950’s, national parent organizations were gaining strength and lawsuits were being filed to force states to recognize the rights of people with disabilities.
During this time, politicians began getting involved and making public statements in support of disability rights. Governor Youngdahl of Minnesota said, “… the retarded child is a human being…. He has the same rights that children everywhere have. He has the same right to happiness, the same right to play, the right to companionship, the right to be respected, the right to develop to the fullest extent within his capacities, and the right to love and affection….” These words took the world by storm. Nothing like it had ever been said about a child with disabilities before, and for the first time, some of the prejudice against children with disabilities and their parents began to wane.
President John F. Kennedy further bolstered the movement when he spoke publicly for the first time about his sister, Rosemary, who had disabilities. Another sister, Eunice Kennedy Shriver, wrote an article about Rosemary that appeared in the Saturday Evening Post, which further alleviated some of the shame and stigma surrounding having a family member with disabilities.
President Kennedy took it one step further when he organized the “President’s Panel on Mental Retardation” which, after much research, wrote a report that led to new legislation that authorized funding for extensive research on the diagnosis, treatment, and education of children with disabilities. For the first time the federal government had gotten involved in finding solutions for the challenges faced by these children and their parents.
Over the next decade, the movement continued to gain steam, and in 1975, the United Nations signed the “United Nations Declaration on the Rights of Disabled Persons,” which inspired laws that would eventually be passed in many countries around the world. In America, PL-94 142: The Education of All Handicapped Children Act was passed, which guaranteed a free appropriate public education to each child with a disability.
But despite the progress being made on the national and international scene, many children still lived in institutions. The national attention hadn’t trickled down to substantive change for individual families. Community services and mainstream education were still not available for most children with disabilities. And many in authority insisted that because of better funding and efforts at reform within these institutions, they were still the best place for these children to be.
But in 1973, an organization called the Children’s Defense Fund noticed that 750,000 children appeared on the U.S. Census as not attending school. Upon further research, it was discovered that these children had disabilities and were not being educated by the public school system. The Pennsylvania Association for Retarded Children used this data in their lawsuit against the U.S. Department of Education. The Federal District Court ruled in favor of the children, which led to the passing of federal law mandating that all children, regardless of ability, should be educated by the public school system- something that had never been possible for children living in institutions.
Over the next fifteen years, this legislation led to even more congressional acts being passed that protected the rights of children with disabilities. Thanks to the Katie Beckett Medicaid Waiver, as well as other legislation, parents were finally given the choice to keep their children at home and seek newly established community services for their support, rather than place them in state run facilities. More and more of these institutions began to close, a process that is still ongoing today- yes, today, there are still institutions open in America.
In the end, more than twenty congressional acts were passed in consequence of lawsuits filed by parent organizations before President George Bush finally signed into law the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) in 1990.
But these laws are not the end all. They are the first of many necessary building blocks that must continue to be put into place to protect the rights of people with disabilities, and to keep them out of institutions. In 1999, the United States Supreme court said in a decision called Olmstead v. L.C. that persons with disabilities who live in, are “at risk” of living in, or are eligible for placement in facilities or institutions, have a right to live in the community. The court said that, under the ADA, “it is a form of discrimination to isolate and segregate persons in institutions when they can live like other people in the community and enjoy the benefits of society.”
But even more federal initiatives have been necessary in recent years to further promote equality and integration. President George W. Bush passed the New Freedom Initiative in 2001, and in 2009, the Department of Justice Civil Rights Division launched an aggressive effort to enforce Olmstead. Through a series of system-wide settlement agreements, the DOJ has expanded the understanding of Olmstead obligations from getting people out of institutions to assisting people to engage in community life.
The advocacy of thousands of people in the past have led us to where we’re at today with the Home and Community Based Services (HCBS) final regulations, which is designed to “ensure that individuals receiving services and supports through Medicaid’s HCBS programs have full access to the benefits of community living and are able to receive services in the most integrated setting.”
There are no words to describe the depth of my gratitude for those who have come before me who have exhausted themselves in relentless advocacy for this vulnerable community- work that has blessed my life and the life of my daughter, who suffers from both Charge Syndrome, which includes blindness, deafness, and overall developmental delay, as well as Lennox-Gastaut Syndrome, which is a severe form of childhood epilepsy, in countless ways. I truly stand on the shoulders of giants.
But the work is not yet done. Supports must continue to be put into place that will allow children with disabilities to remain in their homes and adults with disabilities to remain in their communities. There are still those in positions of power who believe that people with disabilities belong in institutions, and because not all institutions have been closed, there is a ready system still waiting there to absorb this population back into the clenches of the hell that advocates have worked for decades to eradicate them from.
One important factor that few people seem to talk about, but which continues to make this population vulnerable to re-institutionalization, is the financial burden that families of children with disabilities carry. It’s one thing for the Supreme Court to rule that children with disabilities should be allowed to live in their homes, but it’s another thing for those parents to be able to actually afford to take care of their children.
There are many factors that go into this burden such as the cost of medication, medical supplies, adaptive equipment, accessible architectural features in their homes, and the need for adequate insurance coverage for therapy and medical bills. There are state funded services in place already that assist with many of these things (although much could be said about the web of bureaucracy that parents have to navigate in order to gain access to these services) but one of the most burdensome factors that families face is the need for daily care. Many children with disabilities, including my ten-year-old daughter, need constant daily care in order to survive.
Thankfully there is much discussion in the world today about the economic value of caregiving and how it should be more fully recognized. Melinda French Gates’ recent article in Time Magazine, organizations such as Bronwyn Hale Dearden’s Economic Equity for Moms, and books like Riane Eisler’s The Real Wealth of Nationsall address how undervalued caregiving has been in our culture, and how important it is that policies are put into place that better support families when they face the inevitable: the birth of a baby, a difficult diagnosis, or an injured family member. Much emphasis is being placed on the need for a National Paid Leave plan in order to help employees keep their jobs in these circumstances, which efforts I wholehearted applaud, but there is a unique circumstance that many parents of children with disabilities are currently facing that is not getting national attention. And that is, for many parents their children’s caretaking needs prevent them from getting a job in the first place.
When my first child was born in 2006, I chose to become a stay-at-home mom, but intended to go back to work after my last child started kindergarten, never anticipating that she would be born with severe disabilities. The emotional and physical toll of her care delayed those plans, but I did take a job as a substitute teacher in 2017 when she was in first grade. However, that was the year signs of her epilepsy started manifesting themselves, which rendered me just about the least reliable substitute teacher my school district had likely seen. I would accept positions well in advance only to have to cancel the day of because of my daughter’s medical needs. She had a full-time Medicaid Waiver funded respite worker, but she was scheduled to work evenings, not days, and had other obligations that prevented her from dropping everything to care for my daughter so I could go to work.
During those years when I thought I’d be working again but wasn’t, and money became tighter and tighter for our family, I often wished that my daughter’s Medicaid Waiver allowed parents to be their own child’s paid caregiver which would have allowed me to make an income while still being home to care for my daughter- which is where I was anyway, because despite having a full-time caregiver in place, the unpredictability of her medical needs prevented me from being even part-time gainfully employed.
I was thrilled this past year when I was informed that, due to the pandemic, temporary measures had been passed in the state of Virginia which finally allowed parents to be their own child’s paid caregiver. And it has made all the difference for my family financially. Despite the wage being significantly lower than what I could be earning elsewhere, the extra money I have been able to earn has significantly reduced the financial burden my family carries.
But I am speaking from the perspective of someone with a spouse who has steady, reliable employment. What about parents who don’t have a spouse’s income to rely on? Their children are the population that are most at-risk of being re-institutionalized. They are the population who the Supreme Court has said have a right to live with their families, but whose families are financially unable to support them. This is the reason why parents of children with disabilities must be given the option of being their own child’s paid caregiver on a permanent basis- not only in the state of Virginia, but nationwide.
The primary fact that should get the attention of legislators is that making this policy permanent would not cost even one more dollar. It makes no difference to the state budget if a hired caregiver is getting paid for a child’s approved Medicaid Waiver hours, or if the parent of that child is getting paid. But it would allow families to make the choice that best fits their needs and circumstances as they vary from year to year.
We cannot allow these children to fall through the cracks and, because of food, housing, and employment insecurity, end up back in institutions. If the DOJ has indeed expanded the understanding of Olmstead v L.C. from getting people out of institutions to assisting people to engage in community life, then allowing parents to be their own child’s paid caregiver must be a part of that assistance. For some families, it is the only way to keep their children out of state-run facilities. It is the only way for them to earn a wage and still be there for their vulnerable child.
I have found myself thinking lately about a really difficult experience I had several years ago when I was trying to get insurance to pay for some equipment that the Girl in Charge needed. I had arranged a meeting with a representative from a medical supply company so he could determine whether or not she qualified for the very expensive adaptive stroller I was hoping to get for her. She had to be evaluated by a physical therapist of their choosing, so we were meeting in the offices of a medical therapy clinic that was housed in a building on the campus of our local hospital. But because my daughter was unfamiliar with the physical therapist they had chosen, and likely wouldn’t feel comfortable around her, I had arranged for her regular physical therapist from school to meet me there so she could give her input while offering my daughter some familiarity, and also so the two professionals could coordinate with each other.
The meeting felt like life or death to me. We couldn’t afford the stroller on our own and I really needed the Girl in Charge to qualify, so I wanted everything to go perfectly. Normally I would bring my respite worker with me to appointments like this, but she wasn’t available that morning, and my husband was traveling for work, so he, too, was unavailable. But I had successfully tackled countless other appointments on my own so I just made sure that everything was planned out with precision. I made arrangements for my older two children to be at a friend’s house all day. I double checked the time of the appointment in my calendar (the appointment was set for 10:30am and I planned to leave by 9:30am because it would take 30 minutes to get there and I wanted to give myself an extra 30 minutes in case I needed it). I made sure there was plenty of gas in the van. I touched base with her physical therapist to make sure she would be there. I pre packed her bags the night before, and I made sure to go to bed early so I would be alert and well rested the next day. I had done everything I could think of to be prepared.
But as these things go, the Girl in Charge ended up having a really rough morning. Among her many other challenges, she suffers from sensory processing issues, and for whatever reason, that morning, she had a complete meltdown. When that happens, I have no choice but to wait for her to calm herself down and because of this, everything took longer than I had hoped it would. In fact, she never actually calmed down, but I had to make this appointment, so I put her in the van still upset and hoped for the best. As I pulled out, the clock said 10am exactly, which gave me no extra time to get there. On top of that, it was a horrifically hot day- one of those days when you start sweating buckets the moment you walk outside. The van was super hot because, along with everything else, I hadn’t had time to start it early and cool it off before we got inside, and so the heat of the van didn’t help with my daughter’s sensory overload.
About 5 minutes down the road, I remembered that my husband had taken the stroller we were currently using out of the back of the van because he’d needed the trunk space for something recently. I knew that beforehand and had planned on grabbing it from the garage on my way out, but because I was so distracted by my daughter’s emotional state, I had forgotten, and had pulled out without it. I was kicking myself, but I didn’t feel like I had time to turn around and get it. I just thought, “Oh, well. I have my handicap tag and can just park up close and carry her inside.” I knew I would have to carry her in my arms with her backpack of heavy supplies on my back, but I thought, “I’ll just get through it, it’ll be fine.”
But then another 10 minutes down the road as I kept looking at the clock, hoping we didn’t run into traffic, the thought occurred to me that we had gone somewhere recently in my husband’s truck with the whole family and so we had taken the handicap tag out of the van and put it in the truck. In a panic, I reached over to check the glove compartment and sure enough, there was no tag. So now I not only had to carry the Girl in Charge and all her heavy supplies, but I had no idea how far away I would have to park or how long it would take to get there. But I was still trying to be optimistic. The Girl in Charge used to receive her medical therapies in that building so I was very familiar with their parking lot and so I reassured myself that I would just park in that little section off to the side where I always used to be able to find parking 2 years earlier, and I kept convincing myself it would be fine.
I would be fine.
Everything was going to be fine.
Even though my stress level was increasing with every mile.
So, I finally pulled off the highway and as I came around the bend and was about to pull into the parking lot, I had to slam on my breaks because the entrance was blocked off. Then I started to look around and realized that a huge half-built parking structure was to my right (I had been so focused on getting there that I didn’t notice it from the road.) So I drove further down the street and pulled into another entrance and attempted to backtrack to the building I needed, only to discover that the entire parking lot in front of my building was completely torn up.
I sat there feeling completely defeated. I looked down just in time to see the clock turn over. It was 10:30am on the dot. I was already late. So I frantically started looking for parking. I drove down every row praying for a spare spot. But at every turn, no luck. A few minutes later, I finally found one in front of a building that was 3 buildings away from the one I needed. Because of the construction, every parking lot in front of each of the medical buildings was packed. So, I had no choice. I pulled into the first available spot, hurried and put the heavy backpack on my back, and then lifted the Girl in Charge out of the van (she was probably 5 years old at the time) and into my arms, and then began to run as fast as I could across three parking lots toward our building. It took me forever. We were probably parked at least ½ mile away, if not more. By the time I got into the building and up to the 5th floor, we were a solid 15 minutes late. I was absolutely dripping with sweat, the Girl in Charge, who had never quite calmed down from her earlier meltdown, was screaming, and everyone was looking at us like we were crazy. I could barely catch my breath, but I checked in with the lady behind the desk, and sat down out in the hallway because the waiting room was full.
And we waited.
I knew we were 15 minutes late, but I prayed that the appointment could still continue. And I hoped that they wouldn’t be too annoyed with me. But my anxiety grew each minute I continued to wait, wondering what was taking so long. Finally, someone came out and informed me that unfortunately there must have been a misunderstanding. According to their records, the appointment had been at 10am, so I had missed my appointment completely and would have to reschedule for another time.
I was stunned.
This could not be happening.
I tried to protest and ask if there was any way we could still meet, but she said that everyone had been there waiting for me but by 10:25am when I had not shown up, everyone had left and the physical therapist that worked there was already in another appointment.
I literally couldn’t believe my ears. How had this happened? I had planned so carefully. I had checked and double checked the time. But somehow, months earlier when I had made the appointment, I must have written the time down wrong. That was the only explanation that made sense. If, by chance, I had been successful that morning at leaving at 9:30am like I had planned, maybe I still could have squeezed into the meeting in time to make it successful. But I hadn’t. And here I was, after all that exhausting work, being told to go home empty handed.
In the meantime, I was so exhausted that I no longer had the strength to hold the Girl in Charge in my arms. I had tried to get her to sit next to me, but balance is an issue for her, and if she’s having sensory problems, she needs to lay down. But there was nowhere for her to do that. And she was still so uncomfortable from her earlier sensory issues, and now so hot and sweaty from our run, that she was lying on the dirty floor at my feet screaming. Not just a sweet baby cry, but screaming with such intensity that her cries reverberated down the hallway and into each of the medical offices on either side. People up and down the corridor were sticking their heads out their doors to find out what was going on and everyone who happened to walk by looked down uncomfortably as they passed. It was so loud, I could barely hear the person talking to me and she was less than 2 feet away. But no matter how much I pleaded and told her I didn’t want to put my daughter through the stress of an appointment again, the answer was still the same. The meeting would have to be rescheduled.
So, feeling completely defeated, I picked the Girl in Charge back up, put her heavy bag back on my shoulders, and got back on the elevator where everyone continued to avert their eyes awkwardly, and I carried my flailing 5-year-old back out into the heat where the sun beat down on us relentless, and we proceeded to walk the 1/2 mile back across all three parking lots to the van. The wind was blowing so hard that my long hair, which was soaked with sweat, would whip around my already sweaty face and stick across my cheeks and my forehead. I could barely see, but with a heavy, screaming child in my arms, I couldn’t quite reach around to pull my sticky hair off my face, and so I just walked that way all the way back to my van. Everybody who passed looked at me uncomfortably. My back felt like it was breaking. The strain on my arms was so painful. But I just kept trudging one foot in front of the other. Waiting at crosswalks was agony. But finally my van was in sight. It was at this point that a nice lady in a mini-van circled around and pulled up next to me and offered me a ride to my car. I was so touched by her kindness. But there was little use because my van, at this point, was only 10 steps away. So I said no thank you.
When I finally got the Girl in Charge back into the van and buckled her in, I got into the driver’s seat, shut my door, and burst into tears. I sat there and cried for a long time. At this point we were crying together. I had planned so carefully (or so I thought), but all the things that were normally in place (the stroller in the van, the handicap tag in the glove box, the usable parking lot, writing down appointment times correctly) things that I usually didn’t have to worry about, had not been in place, and so despite my best efforts, everything had gone wrong. When I finally got home, I left the Girl in Charge in her nice, cool, quiet, calm, air-conditioned bedroom to self-sooth, and I went into my room, crawled into bed and slept for the next 2 hours.
Even retelling that story makes me emotional, and exhausted. It was such a difficult day- one of those days that wipes you out and leaves you feeling completely alone. I wanted to pretend it had never happened. It was hard to understand why things had gone so wrong when I had tried so hard to plan everything out perfectly, especially when so many things in my life were already so hard. It felt so unfair. It WAS so unfair.
So, I’m not entirely sure why I have been thinking so much about that day lately. I think partly because this past year, 2020, has been so hard that I have found myself reflecting back on other hard experiences I’ve been through. And perhaps for some of us, that’s part of the answer to what we’re going through right now.
It’s so easy to get discouraged when we look at our lives and when we look at the world around us. There’s so much uncertainty. Will the economy rebound? Will our kids ever have a normal school experience again? Will we get to be with our friends and loved ones in large groups again? Will our favorite cultural events like concerts and plays and sporting events ever resume? Will racism and bigotry end? Will our country ever be unified?
I don’t know the answer. I truly don’t. But I choose to hope. As a country we’ve been through hard things before. We’ve been through economic depressions, and pandemics, and world wars, and civil unrest. Our parents and grandparents and great-grandparents lived through a lot of personal and cultural turmoil. But they never gave up, and we won’t either. I truly believe in the resiliency of the human spirit. I truly believe our kids are going to be okay, and if anything, they will be better for what they’ve been through. More grateful. More hopeful. And I truly believe there are good years yet to come for all of us. Today is not the end of our story. It is just a chapter. We have reason to hope.
By the way, I did end up rescheduling that appointment. And it went perfectly. I got there on time. I had what I needed. Our physical therapist met us there a second time with a smile on her face and forgiveness in her heart. The Girl in Charge did qualify and she got the stroller she needed, and now we use it on a daily basis without a second thought.
But on occasion, when I pull it out of the back of the van and buckle her into it before school, I think about what it took to get it. It was hard. So so very hard. I would never want to go through that experience again. But I can’t begrudge it. It makes me appreciate the stroller so much more. And if that’s the experience I needed to help me learn a few things about myself and to be better prepared in the future so that I could help my Girl in Charge live her best life, well, then, it was worth it.
One of my favorite movies is the 2006 film Amazing Grace, which is about William Wilberforce and John Newton. Wilberforce was the British MP who, in 1807, was finally successful, after an almost twenty year long struggle, at getting legislation passed which abolished the slave trade in the British Empire. And Newton was his old preacher, who, as a younger man, was a slave ship captain who had transported tens of thousands of kidnapped human beings from Africa to the Carribean as part of the Transatlantic Slave Trade. After a deep spiritual conversion, Newton surrendered himself to the life of a clergyman and spent the rest of his days allying himself with abolitionists and ministering to young, impressionable minds like Wilberforce’s, teaching them the value of every human life. In 1779, he penned the words to “Amazing Grace”, a hymn that would become an anthem to those seeking freedom from oppression for hundreds of years to come.
In this movie, two conversations take place between this preacher and his now grown former student. The first one happens when Wilberforce is young, healthy, energetic, and is eager to engage in this battle to abolish the slave trade, and he goes to his old preacher for help. Newton at first refuses, saying, “I am not strong enough to hear my own confession… I can’t even say the name of any of my ships without being back on board them in my head. All I know is that twenty thousand slaves live with me in this little church. There is still blood on my hands.” He goes on to plead with the young MP, “I can’t help you, but do it, Wilber! Take them on! Blow the dirty, filthy ships out of the water!”
The second conversation takes place almost twenty years later when Wilberforce is exhausted and suffering from an illness brought on by years of overwork, stress and discouragement. And to make matters worse, he still has not been successful at his quest. But he can’t let it go. He believes this is his life’s work. So, tired and sick, he goes back to his preacher for moral support. But this time, Newton is ready. Wilberforce finds the old man, feeble and blind, dictating his memories to a young scribe. When Wilberforce asks him about it, he says, “This is my confession. You must use it. Names, ship records, ports, people. Everything I remember is in here… You must publish it. Blow a hole in their boats with it. Damn them with it! I wish I could remember all their names. My twenty thousand ghosts. They all had names. Beautiful African names…”
The way this movie portrays John Newton’s story has always touched me. Even though he had abandoned his life as a slave ship captain and devoted his remaining years to doing good, he still could not bring himself to directly acknowledge what he had done. He was not strong enough to hear his own confession. He couldn’t face his own complicity in the oppression of other human beings. But deep down, he knew he would never find peace until he did.
The death of George Floyd re-ignited the flames of racial tension in our country in a way that I have never before witnessed. My initial reaction was to feel deeply sad and to pray for those who were suffering. But beyond that, I just quietly observed from the safety of my home and did my best not to judge either side and trust that the situation would work itself out. But the longer the racial unrest continued, and the more I heard what was being said, the more I came to understand that my hands-off approach might actually be part of the problem. That my “I will pray for them in private” approach just wasn’t good enough. But I had no idea what I could do.
I have friends who became very outspoken on social media on every side of the issue- condemning George Floyd, condemning the police, condemning the rioters, condemning the justice system, condemning Black Lives Matter. The madness affected me deeply and I decided to shut off social media. I didn’t know how long my break would be, I just knew I needed one. And during that time I became very self-reflective. Something deep inside of me was bothering me and it lingered. But I couldn’t put my finger on it. I pondered it daily to try to figure out what it was that was making me feel so uncomfortable.
And finally, after much contemplation, I realized what it was I needed to do. I needed to repent. I needed to stop claiming that I had nothing to do with race relations in our country. I needed to seriously evaluate if I had ever been part of the problem. I needed to stop claiming that I have never been a racist and take a hard look at myself to figure out if that was true. I needed to stop claiming innocence.
In Matthew 26, we read about how Jesus told his disciples that one of them was going to betray him. And rather than deny, or defend, or point out evidence to prove their innocence, each of the disciples humbly asked Jesus, “Lord, is it I?”
My break from social media turned out to be for about a month, and it was very good for me. But one of the last things I saw before I shut it down was an interview where a very upset black woman said, “White people need to stop sharing their opinions. They need to stop talking and start listening.”
And so as I became reflective about my own complicity, I also started to listen. I asked myself, “What is it that I, in my middle-class white world, am not hearing? What about the black experience do I not understand?” I prayed that God would give me ears to hear and eyes to see. I also prayed that I could shed from my heart all desire to defend myself. I wanted to be accountable to God, if to no one else, for the ways in which I had failed to love as He would have me love those who are different from me.
The first thing I felt like I should do was to educate myself. So, I did my best to throw away all of my preconceived notions about race relations and I started absorbing everything I could get my hands on, from the famous to the obscure, from the serious to the satirical. I was determined to start seeing things from other people’s perspectives. I watched interviews with black political activists like James Baldwin in the 1960’s and Michelle Alexander in the present. I read books from Stamped From The Beginning by Ibram X. Kendi to Me And White Supremacy by Layla F. Saad. I listened to a wide range of political podcasts and I watched every civil rights related documentary I could get my hands on: Klansville, U.S.A., The True Story of Mississippi Burning, LA 92, I Am Not Your Negro, The Uncomfortable Truth, Spies of Mississippi, Birth of a Movement, Mr. Civil Rights: Thurgood Marshall and the NAACP, Freedom Summer, February One: The Story of the Greensboro Four, 4 Little Girls, Ken Burns: The Central Park Five, The Untold Story of Emmett Louis Till, Two Black Men a Week, 13th, Jim Crow of the North, etc.
And I walked away from that experience with a cavity in my soul filled with pain. Such deep, devastating pain. I realized in a broader way than I ever had before that the America I had grown up in was not the America that so many other people had experienced.
In my faith tradition, as a member of the Church of Jesus Christ of Latter-day Saints, repentance is very important. And it comes with 6 components: Faith that God can help you change, sorrow for what you have done, confession of your sins, abandonment of your sins, restitution where possible, and a renewed commitment to righteous living.
As I contemplated the prompting I received that I needed to repent, I started to think about the portrayal of John Newton I mentioned above. He had done everything possible to change his life, but ultimately his repentance was not complete without his full confession. I, too, have not, up to this point in my life, been strong enough to hear my own confession. I have never wanted to think of myself as complicit in the oppression of other human beings. But my conscience will no longer allow me to claim innocence.
And so here it is.
This is my confession.
I didn’t know.
I truly did not know.
But before I move on, I want to clarify. On the surface the statement “I didn’t know” sounds like a claim to innocence. But it is not. It is part of my sin. I have been so comfortable in the America that I lived in that I never took the time to know.
I didn’t know that twelve of our first eighteen U.S. Presidents owned slaves, eight while serving as president. Eighteen of the first thirty-one Supreme Court Justices also owned slaves.
I didn’t know that Abraham Lincoln ascended to the presidency with no desire to abolish slavery and believing the white race was superior. He went on to emancipate the slaves and is rightfully considered a civil rights hero today, but it took great inner turmoil and a long, bloody war to change his way of thinking.
I didn’t know that after the Civil War, vast numbers of recently freed slaves, before they had a chance to build their own lives, were arrested for crimes as minor as loitering and vagrancy and were put to work on chain gangs to rebuild the economy of the South, thus being forced back into a state of forced, unpaid labor, and that a loophole in the 13th Amendment itself made this practice legal.
I didn’t know that the state of Mississippi didn’t ratify the 13th Amendment until 2013.
I didn’t know that from 1880-1968, roughly one person per week was lynched in the United States. That is the recorded number. It is, of course, unknown how many lynchings went unreported.
I didn’t know that white families packed pic-nic lunches and brought their children to watch lynchings. And that after the lynchings were over, photographs were taken of the dead bodies and made into postcards to be sent out to the perpetrator’s friends and relatives who had missed the event.
I didn’t know that within a year of his election, Woodrow Wilson made the federal government a racially segregated workplace. He was the first president elected from the South since the Civil War.
I didn’t know that from 1917-1921 in Chicago, the home of a black family was bombed on average every 20 days for 5 years straight to punish black families for moving into “white neighborhoods”.
I didn’t know that in 1921, city officials of Tulsa, Oklahoma conspired with a mob of its white citizens to attack the city’s Greenwood District- the wealthiest black community in the nation. Thirty-five square blocks were destroyed, leaving 10,000 black people homeless, and upwards of 300 dead, with property damage in the millions.
I didn’t know that at its peak, 5 million white men belonged to the Ku Klux Klan.
I didn’t know that Birth of a Nation, a film celebrating white supremacy, was given a private screening in Woodrow Wilson’s White House.
I didn’t know that the demographic geography of the United States was shaped by the activities of the Ku Klux Klan when thousands upon thousands of African Americans fled to northern and western cities, not because they were seeking economic opportunities as is popularly believed, but because they were refugees from terror. And that because of this terror, many black families, to this day, live within the bonds of generational trauma with very few resources to get the emotional and psychological help needed to overcome it.
I didn’t know that in 1935, the Home Owners Loan Corporation drew color-coded outlines around neighborhoods on maps of 239 cities across America, marking these neighborhoods according to how financially safe each neighborhood was to invest in. Green = Affluent, Blue = Still Desirable, Yellow = Declining, Red = Risky. These maps were then used by government and private financial institutions to determine which neighborhoods would be extended mortgages. Black neighborhoods were almost exclusively marked in red, regardless of the financial viability of its residents, thus creating a system of black ghettos across the country where no intergenerational wealth could be built through property investment. In 2013, the networth of white people in America was still 13 times greater than black people.
I didn’t know that when the Red Cross first started their blood bank, they refused to accept donated blood from black people.
I didn’t know that Secretary of War Henry Stimson purposely put rigid literacy requirements in place during WWII “to keep down the number of colored troops.” His plan backfired when the War Department realized that many northern black men were better educated than many southern white men.
I didn’t know that after WWII, black veterans were systematically prevented from receiving their rightful benefits from the GI Bill. Of the 67,000 mortgages insured by the GI Bill in New York and New Jersey, only 100 went to non-whites.
I didn’t know that Emmitt Till was only 14 years old when he was dragged from his uncle’s house in the middle of the night and beaten to death. His body was found three days later at the bottom of a river, bound with barbed wire to a 70 lb cotton gin. His tongue had been choked out, his left eye was missing, all but two of his teeth had been knocked out, his ear was gone, his genitals had been cut off, and there was a hole in his head so large that daylight could be seen through the other side. He was so unrecognizable that he could only be identified by a family ring he wore on his finger. His crime had been whistling at a white woman.
I didn’t know that at least 18 other civil rights activists were assassinated prior to the death of Martin Luther King, Jr.
I didn’t know that because of contracts with private correctional companies, prisons currently have a financial incentive to keep prisons full and that many poor people remain in prison, sometimes for years, awaiting trial for minor crimes simply because they do not have the money to make bail. 80-90% of all people sent to prison for drug related offenses are black, despite the fact that black people use and sell illegal drugs at the same rates as white people – that for white people, the drug epidemic is largely treated as a health crisis, but for black people, it is treated as a crime crisis.
I didn’t know that there are more black people under the criminal justice system today than were enslaved in the 1860’s, which means those people can now be used for free labor, and that major corporations such as Walmart, McDonalds, and Victoria Secret have prospered on the backs of this free labor.
I also didn’t know about the role Christianity has played in the oppression of black people. Theories were put into writing as early as the 5th and 6th centuries that Cain’s curse for killing his brother was black skin, despite the fact that nowhere in the Bible does it actually say what Cain’s curse was. These theories, along with obscure biblical passages, were used by early American Christian denominations to justify slavery. And then once slavery became illegal, those same theories and scriptural passages were used to justify the continual oppression of those former enslaved persons and their descendants.
White churches, by and large, left no room in their pews for the participation of black people, leading Martin Luther King, Jr. to observe that, “It is one of the tragedies of our nation that 11 o’clock on Sunday morning is one of the most segregated hours in Christian America.”
My own religion has not been immune to racism. From 1852-1978, black people were not allowed full privileges of membership. They could be baptized, but could not hold the priesthood or participate in our temples. In my own home, and from what I understand thousands of other LDS homes, Curse of Cain and other theories were taught to me as justification for those discriminatory policies. And although such racism has been unequivocally denounced by my church and efforts have been made in recent years to make amends, form alliances with, and donate money to groups such as the NAACP (which I wholeheartedly applaud), there is still much work that needs to be done amongst the lay members of my faith in regard to racism.
It is difficult for me to grapple with what my conscious tells me now about what’s right in regard to race, and what I was taught as a child in the name of religion. The God I love and believe in is the author of diversity. He loves all people for who they are. He created each of us to be different on purpose, in part so that we would have the opportunity to learn to love people who are different than we are – so that we could learn to see things through other people’s perspective. But what many white Christians like myself have been taught is that God views us as superior because we are white. And it is just not true.
Isn’t embracing people who are different than we are the center of what Christianty should mean? Didn’t Jesus, in the Garden of Gethsemane, take upon himself the different perspectives of other people – the agony that each of us would experience in our lives so that He could understand us fully and help us through the difficulties of our lives? When we kneel down in grief to pour our souls out to our Savior, isn’t it the Atonement, that greatest of all acts of empathy, which allows Him the ability to succor us and heal us? Aren’t we the most Christian – the most like Christ – when we learn to see things from other people’s perspectives like He did? When we embrace and seek to understand and empathize with those who are different from us? Whether they be black, white, gay, straight, disabled, able-bodied, or any other identifier that differentiates us? Isn’t the number one thing Jesus has asked us to do is love? Can we really do that when we go through life filled with a sense of our own superiority? Whether that superiority is based upon race or religion or a sense of our own righteousness? Isn’t pride the father of all sin?
Embracing difference – in other words, loving everyone despite our differences – is the central idea of Christianity. That doesn’t mean we applaud sin- cheating is still wrong, lying is still wrong, adultery is still wrong, hurting other people is still wrong. But differences in skin color and culture have never been wrong. And those of us who come from a culture where our race – people of our skin color – have historically oppressed those who are different, we are the ones who need to look inward and ask ourselves if we have inherited prejudice – if we are now, or have ever been, part of the problem.
Which leads me to Part Two of my confession.
I have said and done and thought racist things.
Typing those words brings me so much pain because I don’t want it to be true. I want to be innocent. I want to be free of prejudice. I want to view people through the lens of equality at all times and in all places. But I would be lying if I said I have always done that. I have made many mistakes in my life and because of the privileges afforded me by virtue of being born with skin that looked white, I have, at times, failed to see my black friends and neighbors as equal. I have, at times, failed to care enough to see things through their perspective.
I think of my friend Nikisha in high school. We sat by each other in French class every single day. She was my favorite person to talk to in that class and we got along really well. We joked together, laughed together, shared candy with each other, did group work together, helped each other with our work. And I genuinely liked her. But I made absolutely no effort to be her friend outside of class. I never went to her house. She never came to mine. She had her group of black friends, and I had my group of white friends, and we rarely acknowledged each other in any other setting outside of class.
I think of the guy in college I met while working on a play. He was really attractive and we got along really well. We were both LDS, he had served a full-time mission, and he expressed an interest in going out with me sometime. But I never took him up on it. I told myself it was because I wasn’t that interested, but looking back, I have to admit to myself that I was interested. But deep down I knew he would never be accepted in my family because he was black, so I said no.
I think about the conversation I had with friends prior to my husband and I moving to Los Angeles. I was worried about moving to such a big city and finding the right place for our family to live. I remember saying out loud in a crowded restaurant that I didn’t mind moving to a neighborhood with diversity, I just didn’t want to be the only white family. Nowhere in my consciousness at that time did it occur to me what a privileged statement that was. I never considered what black families face every day in America as they contemplate moving to all white neighborhoods seeking better schools for their children.
And I think about the time that a friend came to me with an open heart, asking faith based questions, and as part of that conversation, I repeated the Curse of Cain theory to her, telling her afterwards, “at least that’s what some people believe.” I remember the feeling of darkness that came into my heart afterward, as though God was severely reprimanding me. I remember the look of concern on her face, and I remember knowing afterward that that theory should never, under any circumstance, be repeated. That not only was that theory wrong, it was evil, and had been used to propagate some of the greatest acts of terror against a group of God’s children that the world had ever seen. And I have carried that shame with me for years, that even though I myself didn’t believe that theory to be true, I was thoughtless enough to repeat it to an impressionable mind.
After reading this, there are some of you who may think my admissions are rather tame. It will be easy for you to want to come to my defence, claiming that what I have said and done can hardly be counted as racist. But subtleties and omissions are not without consequence. We like to tell ourselves that we are innocent of racial bias because we have never done anything overtly racist, but it’s oftentimes the undertones of superiority, rather than overt racism, that oppress our black friends and neighbors the most.
And it’s especially harmful when we respond to accusations of racism by saying, “Well, I didn’t mean it that way,” when the truth is that it doesn’t actually matter what we meant. We don’t get to decide if what we say is offensive. White people are not the ones who have been historically oppressed in our country. We need to stop talking and start listening to those whose voices and feelings and opinions have been discounted for so long. If they say what we are saying is derogatory or offensive, then it is. And it is the least we can do to change our use of language to show more respect than we have in the past.
I have come to realize that I have benefited my entire life by the privilege I inherited from being white. I have had opportunities granted to me because of the color of my skin that my black friends and neighbors have not. But I couldn’t see it. I was blind to it. And I am deeply, deeply sorry to anyone I have ever oppressed with my words, overlooked with my ignorance, or disregarded because I wasn’t aware enough to listen. I haven’t mourned with those that mourned or comforted those who stood in need of comfort, because I never took the time to see their pain in more than an arbitrary way. I have been blind. So very, very blind. But I can no longer claim ignorance. Nor innocence.
I pray that God will never let me forget that I have a responsibility to change my own attitudes- to check myself on a daily basis and make sure feelings of superiority or innocence never again sneak into my subconscious- to struggle every day against my natural inclination to claim supremacy over another race of people- a supremacy I have been conditioned to claim by the culture in which I was raised.
This process – this repentance process – has given me new eyes to see, and yet I realize that I do not see, and that I never fully will. Because I am not black. I do not know, nor will I ever know, what it is like to be black in America. I have never experienced discrimination because of the color of my skin. The only thing I have experienced that comes even close is discrimination because I am a woman. But even then, there is a difference. And I recognize that difference and that no matter how hard I try, I will never know what it is like.
But what I can do is listen. And feel. And mourn. And comfort. And sit in my discomfort. Then what I can do is speak up. And speak out. And reach out in compassion. And empathy. Most importantly, I can lay aside all inclinations toward judgement, and I can assume the best of people’s intentions when they respond – even if that response is angry or violent – from a place of hundreds of years of hurt, trauma, and terror passed down in their cultures, communities and families.
It isn’t my place to judge. It is my place to love.
Amazing Grace, how sweet the sound that saved a wretch like me. I once was lost, but now am found; was blind but now I see.
When she was in high school, her family moved to a new area- a place that held new opportunities for new friends, new fun, and new experiences. But as she began to attend school and church, she was disappointed in her reception. There was one particular girl named Winnie Boyce (all names have been changed, of course) and she was the prettiest, most popular girl at school. She also went to the same Latter-day Saint ward (church congregation) as my mom. Everybody LOVED Winnie Boyce and everybody wanted to be her friend.
Unfortunately, Winnie didn’t want to be everyone’s friend. And when my mom moved into the neighborhood, Winnie decided that she most definitely didn’t want to be HER friend. So when my mom went to school, Winnie and her friends ignored her. Or worse, made fun of her. And when she went to church youth activities, Winnie would say to her friends in a loud voice, so everyone would overhear, “Good grief, why did SHE have to come.” My mom said that each time she left for church, she thought to herself, “I don’t know why I’m even going. Nobody wants me there.”
And on one particularly terrible day, my mom walked into a school function and sat by herself at the end of a row of bleachers, unaware that Winnie and her friends were sitting on the other end. Winnie noticed however, and very loudly proclaimed that she and her friends would not sit on the same row as “that girl” and they all got up and found somewhere else to sit, leaving my mom alone on the row surrounded by people who had witnessed her public humiliation.
They were difficult years with many more incidences than the ones I mentioned- experiences my mother still doesn’t like to talk about.
But thankfully high school doesn’t last forever and my mom graduated, went off to college, found nicer friends, got married, and moved halfway across the county, leaving all of the high school sadness behind her. But what she didn’t leave behind was the conviction in her soul that kindness matters.
So when I was a teenager – she didn’t give me a choice. When somebody new showed up at church, it was my job to introduce myself and invite them to sit with me. At school, I was expected to be kind to people and include them in my circle of friends. My mom engrained it in me that I had the power to either build someone up, or tear someone down, and that she expected me to be a builder. I was a typical teenager and often rolled my eyes when she, yet again, was asking me to reach outside of myself. But the lessons she taught me about inclusion eventually shaped the person I would become.
Fast forward a few years- I chose to attend a university in the same city where my grandparents still lived, although they had since moved across town to a different neighborhood. Initially, I lived close to the school, but I wanted to get out of the craziness of downtown, so I found an apartment about 20 minutes down the road in a more residential area. After I told my mom the address of my new place, she said, “That’s funny. That’s the neighborhood where I went to high school.” At the time, that information didn’t mean anything to me.
I started attending the local Latter-day Saint Singles Ward (a church congregation exclusively for young adults between 18-30 years old) and after about a year, I was asked to head up a committee that focused on compassionate service. In family congregations, a compassionate service committee made sure the sick and elderly and the families with newborn babies were well cared for. But in a singles ward, we faced different challenges. Our committee focused on friendship and inclusion – making sure that everyone who walked through the doors had a friend and felt welcomed at church. After I was given the assignment, the girl that suggested my name told me, “I just noticed how nice you were to people.”
So, one day a few months later, a girl walked into church that I had never seen before. She seemed quite young, fresh out of high school probably, and very shy. Looking overwhelmed and intimidated, she snuck into a seat way over in the corner, and she didn’t talk to anyone. After the meeting, I went over and introduced myself and tried to get to know her. She said her name was Daphne White, but after a few one word answers, I realized her shyness would prevail and I didnt get much out of her.
But I didn’t give up. Each week when I saw her, I went out of my way to say hello, to make sure she had people to sit with and that she was making friends and feeling comfortable at church. With time, she started to smile more. She looked people in the eye and said hello. She seemed happy and comfortable and started gaining confidence. The best moment of all was when she started befriending other people and welcoming them to church.
Then one day, we had a meeting with some of the women from other area congregations. A woman introduced herself and said, “My name is Winnie White. My daughter Daphne attends church with you.” We engaged in a brief conversation, and that was it. But her name stuck in my head. Winnie. I’d never met anybody with the name Winnie before. The only Winnie I’d ever heard of was… was the girl that used to be so mean to my mom… and I was living in the same neighborhood where she went to high school.
It couldn’t be.
It couldn’t possibly be the same person.
I thought about it all week. Then the next Sunday, Daphne approached me to say hi and ask me about something and just as she was about to walk away, I summoned the courage and said, “This is going to sound like such a funny question, but… what is your mom’s maiden name?” “Oh, it’s Boyce,” she said cheerfully. I smiled and said something like- “Silly of me to ask…” and then she walked away. After church that day, I went straight home and sat on my bed. Stunned. Winnie Boyce was Daphne White’s mother. Winnie Boyce was Daphne White’s mother! How could Winnie Boyce possibly be Daphne White’s mother?!!!
And then the last few months seemed to scroll across my mind. How many times had I said hello to Daphne and asked her how she was doing? How many times had I smiled at her and told her I was glad to see her? How many times had I told her how cute her shoes were, or how much I liked her hair? How many times had I tried to build her up?
And how many times had her mother bullied mine?
My protective instincts aroused and all of the typical reactionary emotions surged through me. Anger. Hatred. Disgust. A need to give her a piece of my mind and to find some way of humiliating her in return!
But as my emotions calmed, I realized that my mother had taught me better. I would never confront Winnie. And I would never treat Daphne any differently. I would forgive. Just like my mother had done before me.
Now, I don’t tell you any of this to pat myself on the back for being a particularly kind person. In fact, I have a lot of room for improvement. But if I am a kind person- 100% credit goes to the woman who could have turned bitter, but instead turned to God, and discovered the eternal nature of her worth. And then in turn, she trained her children in charity. And by so doing, turned something terrible into something beautiful, that in the end, blessed Winnie Boyce herself.
So, in honor of Mother’s Day, Mom, I want to say thank you. Thank you for being the beautiful, tender, caring person that you are. And most of all, thank you for teaching me how to be kind.
Earlier this week, I attended the IEP meeting for the Girl in Charge- virtually of course- and, because it has to be reviewed and discussed during each of these annual meetings, I had a chance, once again, to read through her official diagnosis.
Her IEP includes some of the following statements:
“[The Girl in Charge] is a student who is considered Deaf-Blind secondary to a condition called Charge Syndrome. She has a mild-moderate hearing loss in her right ear and a profound hearing loss in her left ear. Similarly, she has minimal vision in her right eye, but can see shapes out of her left eye, such as to find her cup of water.”
“[The Girl in Charge] has right microphthalmia, bilateral optic nerve colobomas, and is missing some retinal tissue.”
“Print does not seem like an accessible or functional learning media at this time and the IEP team has agreed to continue braille instruction combined with real objects.”
“[The Girl in Charge] has a seizure care plan and seizures, when witnessed, are tracked daily.”
“[The Girl in Charge] has a cleft palate.”
“[The Girl in Charge] demonstrates difficulty with global reasoning and cognitive skills, adaptive and communication skills, orientation/mobility skills, vision skills, and fine and gross motor skills.”
“[The Girl in Charge] continues to display a profound communication impairment. She is nonverbal with limited visual ability and limited motor ability. She is able to make vocalizations, but not functional speech sounds. There has been no imitation of sounds observed or spontaneous words.”
“[The Girl in Charge] struggles to access her environment. She is currently not moving around her classroom independently. Due to health and mobility needs, she requires a very high level of adult assistance in order to engage with her school environment and maintain safety. “
“There is always potential for injury or falling at any time. She is an unsteady walker who struggles with balance and should always have an adult within very close proximity to ensure safety when she is sitting, standing, or walking.”
When I think about the insurmountable obstacles the Girl in Charge has to overcome in order for her to someday become an independent, full functioning adult, it is enough to cause me deep despair. And of course, I know that she will never be an independent, full-functioning adult. I know that I, and my husband and other caretakers, will be caring for the Girl in Charge for the rest of her life.
So what does this mean for her? What does this mean for her potential as a human being? Is this all there is? Will she never be more than all those medical and diagnostic terms listed above?
Now, of course this isn’t all there is to the Girl in Charge. Her IEP also states the following:
“The [Girl in Charge] is a very sweet and joyful student. She enjoys spending time with familiar adults, peers and family. She enjoys exploring sensory materials and engaging in musical tasks. She also enjoys spending time laying or sitting with her favorite purple pillow near the large window in her classroom. She enjoys gentle arm and foot massages, and strolling outside on a warm day with the breeze blowing through her hair.”
The Girl in Charge is quite literally the joy of our lives. She brings a sweetness to our existence that is indescribable. She has taught her big brother and big sister a level of empathy I never could have taught them. She has taught my husband and I patience and faith and hope and compassion and resilience. She has been the most extraordinary gift to our family and I am unendingly grateful- not only that she is a part of our family, but that she is exactly who she is, with all of her challenges. Because without them, we wouldn’t be who we are as a family and as individuals.
But even still, all of that is not enough. Because when I look at my sweet girl, I see someone who has a mind, who has a heart, who has feelings, who has thoughts and opinions, and she cannot express any of them. When I look at her, I desperately wish I knew what she was thinking. I wish she could use words to tell me what brilliant ideas I’m confident are found within that beautiful head of hers.
When I look at her, I know with certainty that this cannot be enough. This cannot be all that there is for her. She has too much potential for this life to be all there is.
And that’s why Easter means so much to me.
For me, Easter is the promise that the Girl in Charge will someday be made whole. It’s the promise that because Jesus suffered in Gethsemane, died on the cross, and then rose again three days later- his body renewed and perfected- so will she. Someday all of the things the Girl in Charge is not able to do with her body, will be restored to her.
Someday the Girl in Charge will see with perfect vision. Someday she will be able to listen with perfect hearing. Someday she will be able to comprehend even the most complex ideas. Someday she will be able to run and jump and swim and play with all the agility of a typical functioning person. She will drive a car and play the piano and ride a bike and ace her math tests and have simple, ordinary, everyday conversations with all the people who desperately wish we knew what was going on inside that extraordinary brain of hers.
I truly believe that because Jesus rose again on the third day, that someday my little girl will be made whole. Someday, Sunday will come.
Nobody else can see it, but I feel it every moment of every day.
It is indescribably heavy, but I will try to describe it anyway.
I want you to imagine that your eight-year-old child starts screaming one day. Not the normal playful screaming that all children do, but the blood-curdling scream that tells you that she is in extreme pain or dire distress or discomfort.
As a parent, what do you do? Of course, you drop everything, run to your child, your heart pounding, and you do everything in your power to save her from whatever it is that is causing the pain/duress/discomfort.
But let’s say your child can’t talk and doesn’t understand enough about basic communication in order to tell you what is causing that pain. What do you do then?
You start guessing. You check her entire body to see if she’s hurt. You offer her food in case she is hungry. You turn on the fan in case she is hot. Or put on a sweater in case she is cold. You make sure her bathroom needs are met. You do everything you can possibly think of to fix the situation.
But let’s say nothing works and all you can do is watch helplessly as she screams for hours until finally, she is able to calm herself down. And as you watch, your Momma heart breaks over and over again with the sheer helplessness of it all.
And then let’s say that after taking her to countless doctors, you are told that the condition is untreatable, and that the only thing you can do is to do your best to prevent the episodes from happening in the first place – to make sure your child’s every need is met before those needs even arise.
What would you do then?
I know that every mother who is reading this is now going through in her mind the anxiety-ridden task of cataloging every exhausting detail of her child’s day and figuring out how to pre-emptively meet every uncomfortable need her child has.
Are you tired yet?
Do you feel the heaviness?
I want you to now multiply that heaviness by roughly 3000 – representing the 3000+ days my precious Girl in Charge has been alive. And then add another roughly 18,000 – representing the 18,000+ precious days ahead of us where I get to have my sweet girl in my life.
I wake up each day knowing that every moment of her daily needs has to be anticipated. Her schedule is not just a schedule. It is a lifeline for my sanity. And even then, I do my best to plan into that schedule enough time for her sensory system to have a complete meltdown at any given moment of the day. And some days, it works, and we get through it with many peaceful, happy moments. Other days, it doesn’t work, and we still get through it… just a lot more emotionally depleted.
This weight… this 2-ton weight I carry on my shoulders is called Constant Anticipation. It is heavy. Some days crushingly so.
I have asked the Girl in Charge’s doctors and therapists what causes her sensory system to start on fire. They said it’s different for every child and because the Girl in Charge is non-verbal, she can’t tell us. So it could be anything. But some guesses are the temperature, the feel of her clothes, indigestion, fatigue, noise… really… it could be anything.
I also asked them what it might feel like for her physically when she is in a full-blown sensory melt-down, and of course, they don’t know that either. But they have offered me some guesses based upon what their verbal patients who have sensory processing issues have told them. They said it’s possible that what she is feeling is intense pressure in her head or body that grows and grows until it feels like something will explode, or it could be a dull ache everywhere that feels like it will never go away, or it could be as bad as extreme, over-all pain as though a thousand needles were being poked into her body over and over again….
When I put myself in her shoes and imagine that that’s what she’s feeling, as a mother, I have no choice. I have to do everything in my power to ease her suffering. Better yet, to prevent it in the first place.
It’s such an inadequate word.
The reason I took the time to describe all of that is that I have a friend who has asked me to meet her for lunch 3 times in the last few months, and I still haven’t responded. And I feel the need to apologize to her publicly. Most importantly, I just want to make one thing clear…
It’s not because I don’t love you.
It makes me very very sad to think that she might take it personally and that she might be left feeling hurt and confused. It breaks my heart. It really does. Because that is not at all how I feel and that is not at all how I want to make the people I care about feel.
So… this is me saying I’m sorry, I am so terribly terribly sorry.
But it is also me, as gently and as lovingly as I possibly can, setting a boundary. I am sorry… but I need it to be enough.
The bottom line is, I only have so much to give. I’m only human. And that invisible weight I carry is so exhausting- emotionally, physically, mentally, spiritually- yes, all of it. There is no part of my being that doesn’t get completely wiped out by it. And on some days, I just don’t have anything else to give. On some days it takes every ounce of sheer willpower to get through the day without falling apart – and for me, falling apart looks like taking out my negative feelings on the people that deserve it the least – My Mini Me and My Mini Man and my husband.
Thank goodness for my respite worker who alleviates the constant care the Girl in Charge requires, otherwise her older siblings would get very little from me- or worse, the worst part of me. As it is, when I don’t have help – and sometimes I don’t – their needs are put on the back burner and they’ve grown up with that reality that sometimes Mom just doesn’t have anything else to give them.
Early on in the Girl in Charge’s life, when things were so overwhelming, I reached a very dark place because I didn’t have the ability to keep up with everybody’s expectations of me. Most people didn’t know what was going on in our lives, and the constant demands of friends and church associates didn’t let up. I tried and tried and tried to keep up with everything everyone else expected of me while dealing with devastating news about my new baby and I found myself sinking into a deep hole of despair where I actually questioned my worth. And it took the sweet whisperings of a loving Savior who told me, “It’s okay to say ‘no’ to other people, Susannah. You are enough. You are not failing.”
But even still, it took me a long time to get good at saying ‘no’- to say ‘no’ firmly and without guilt. But sometimes, even today, saying the word ‘no’ takes too much energy. Sometimes, admittedly, I don’t even respond.
That doesn’t mean you shouldn’t reach out and invite me to lunch. Please do. And if I am up for it, I will totally be there, and I will enjoy every single minute of being with you. But if I say no, or worse, don’t respond, this is me in advance asking for your forgiveness. Please don’t feel like it’s a reflection of my love for you. Sometimes I just don’t have it in me. And I’m sorry. So terribly terribly sorry.
But I need it to be enough.
I’ve had many people over the years tell me that I make it look easy. When they see me out and about with a smile on my face, teaching an acting class or running a summer camp or putting on a play or making a costume (or 168 of them) or hosting a political event or bringing someone dinner or teaching a church class or, yes, meeting a friend for lunch, they say to me, “Susannah, I don’t know how you do it all. You make it look so easy.”
So, let me apologize for that, too. I’m sorry I gave you the wrong impression. I’m sorry you thought that because on some days, after hours and hours and hours of mental and emotional preparation, I could give of myself to my friends and community, that you got the impression that all of that was easy for me. I’m sorry you didn’t see me in my weak moments when I yelled at my kids, or slept through my alarm, or binged a tv show because it was easier than facing reality, or failed to love my husband in the way he deserved to be loved, or any number of endless things I do so poorly in life, and so when I couldn’t bring myself to meet you for lunch, you thought it was because I didn’t care about you…
Please know that for every ounce of energy I expend doing all those things that I love doing out in the world with wonderful people like you, my body and mind and spirit require an equal amount of emotional, spiritual, physical and mental recuperation time at home. And then some… because of the added weight of the constant concern for my Girl in Charge.
The scales of emotional energy demand justice. They demand to be balanced. When I give other people my time and energy, my family gets the leftovers- the stale, day after, sour, slightly moldy time and energy. Or I get less of me. And it’s okay if that happens once in a while, my family understands. And I can take extra care in the following weeks or months to rebalance my mental state. But sometimes, I just plain have to say ‘no’ to things. So… please forgive me if I have ever not reached out or returned calls or if I have canceled plans. I did it in the name of preserving my energy so I could be the best mother to my big kids possible.
I’m sorry if I have ever not found time for you. It doesn’t mean that I don’t love you. Please forgive me.
A few days ago, I checked in with my new respite worker, who started working for me at the beginning of this month, to see how she was feeling about the job. Taking care of the Girl in Charge can take its toll and there’s no guarantee when I hire someone new that she will find that caring for a disabled child is a good fit. I was so grateful, and relieved, when my new respite worker just shrugged her shoulders and said with a smile, “She is wonderful.”
I thought it was the sweetest response. And she went on to repeat that phrase several times during the conversation, and later I found myself thinking about that word.
It’s a simple word. And not particularly profound. In fact, it’s rather commonplace. But that word has stayed in my head for several days.
The Girl in Charge… is wonderful.
After looking up the definition, I was reminded that the word ‘wonderful’ means “amazing, astonishing; to arouse wonder.” And the word ‘wonder’ means “to be filled with admiration, amazement, or awe.” It also means “to marvel.”
And then I realized that perhaps the word ‘wonderful’ IS profound- perhaps it SHOULDN’T be commonplace. And perhaps it is the most perfect word in existence to describe the Girl in Charge.
Last summer, I engaged in a little research project amongst my friends and family who knew the Girl in Charge personally and I asked them to share with me their feelings and impressions about her. As her parents, my husband and I are often too close to the situation to really see things with perspective. And I wanted to get a sense of who the Girl in Charge was through other people’s eyes- the impact, perhaps, that she had made in the world in ways that I couldn’t see.
One of my former respite workers said, “Before this job, I felt like I might do something wrong around [disabled] children, so unfortunately, I avoided interaction altogether. [But now], I am more confident with those who are different from me, especially others with disabilities. Once, while living as a missionary in France, a family let us into their house and one of their young daughters was nonverbal and had special needs. Immediately, I felt drawn to her and touched her hand and chatted and played with her before teaching the family. Afterwards, my companion remarked how I had interacted with her with such ease. As a result, this family seemed to really be touched by us. So, I am able to understand the nature of unconditional love more, and feel like I have been able to feel more comfortable with people of all abilities.”
A good family friend and former neighbor said, “[The Girl in Charge] is a teacher…. [She] teaches some fast track lessons so those who care for [her] and her beautiful kind may learn faster than the rest of us what to let go of…. [She] makes me aware of how spoiled I am to walk away and do whatever I wish with my body, time, and energy. [She] makes me nervous that if it were me tasked with caring for her, I may not be able to do what Susannah and her family do. But I see her. I see her sweetness, and the love she has planted in the hearts of those who love her. I sense my limitations when I am near her, and it pushes me to consider those limitations, and also helps me appreciate my own. Easy to think we should all be prettier, more perfect, more able, and then to be impatient with ourselves, hard on ourselves. I’ve been nothing in this life if not hard on myself. The Taylors and others like them remind me to just love…. “
A dear friend from my husband’s childhood neighborhood said, “[The Girl in Charge] is an example of how we should be… she is not swayed by the things of this world. She is not concerned with status or material things. She is happy when surrounded by those that love her. Her hugs are genuine and free. Her emotions are real, with no ulterior motive. She gives others the opportunity to be their best selves…. She enables us to give and receive love. She teaches me to be grateful for small things. I feel connected to [the Girl in Charge] and not just because she is the daughter of our friends. It is more than that. [The Girl in Charge] allows you to see beyond yourself. I have felt incredible joy in celebrating [her] successes. I remember watching the video of her first steps and then seeing it in person. It was an incredible moment – an obstacle overcome. It was triumphant for those watching. I cried, I cheered…. My time with [the Girl in Charge] is priceless as she brings a feeling of incredible love with her wherever she goes.”
My sister-in-law shared that, “About two years ago, we discovered that my daughter has a 51 degree curve in her lumbar spine. Living with scoliosis, and a brace, and impending surgery, has not been easy for [her], but I think she has gained insight and perspective from [the Girl in Charge.] We have had several conversations where [my daughter] has said, ‘It’s not fair that I have to go through this…’ and I have asked her, ‘Is it fair that [the Girl in Charge] and her family have to go through what has been placed on their shoulders?’ And [my daughter] has come to realize that while life is not always fair, it can still be beautiful and meaningful and so good.”
My sister-in-law also said, “[The Girl in Charge] gives the best hugs! And when you get a hug from [her], it feels like pure love. There is no guile or expectation. Just a sweet girl who can somehow break down the walls that people put around themselves.”
Another former respite worker who worked for us for 2 years while she was a graduate student studying occupational therapy, and who also lived with us for some of that time, said, “I take [the Girl in Charge] with me every day. I carry her around in my heart space and when I’m sad, stressed, angry or overworked, all I need is to think of her laugh- the sweet sound of that giggle and nothing seems so bad. That giggle has given me strength, hope, and purpose…. A video from miles away when I need it the most can bring me to tears and remind me what’s important… In every way, she is my foundation for being a good human. My values, core beliefs, standards for change are based on my time with her. She was two when I met her. But she changed everything. I owe my successes, my triumphs, and my hopes and dreams to [the Girl in Charge]. There is no one like her and without having met her, my world would be colorless and much more selfish.”
My dad said, “Having a granddaughter with special needs is deeply life-changing. It makes one very introspective about the value of life…. Knowing about [God’s plan for us] is the key to loving others in general and adoring children with special needs. These special souls have come to earth just to obtain a body. They are not here to be tested like the rest of us. They have not only passed the test already but likely have excelled way beyond a 4.0 GPA…. But any human being, with any maturity at all, who associates with a special needs child has to be filled with the noblest of human emotions such as love, charity, empathy, and gratitude. The desire to help is overwhelming and the willingness to stand with the parents is powerful…. I know I am a better man because of her influence…. Having a special needs granddaughter makes me feel kind of special myself.”
And another former respite worker, who lived with us for a year, told this sweet story, “I remember on one occasion when we had to put [the Girl in Charge] in her room because she was really upset. Those were hard times because the instinct was to cuddle and comfort her. But those instincts actually made her more upset, so we had to let her self-soothe. After she had calmed down, I went into her room to check on her. I can still see her, even now, standing at her window in the sunlight. She had one hand up and was staring at it while she wiggled her fingers back and forth. She liked to do that, to see the difference in light and shadow as she wiggled her fingers. She was so peaceful and calm when moments before she had been distraught. I knelt beside her and called her name. She smiled and giggled, and then collapsed onto me in a headlock/hug. I felt peace and pure love emanating from her just as sure as I felt the warmth from the sunbeams in the window.”
“This is just one of many special moments I had with [the Girl in Charge] and these are the moments when I was taught the most important lessons. Not so much in words, but in feelings. [The Girl in Charge], and children like her, are examples of how to enjoy the simple things in life and to embrace the wonder and delight of exploring the world we live in. They are also the best examples of pure love without motives or agendas. How many of us sit and contemplate the shadow and the light? How many of us remember how good it sounds and feels to hear our name spoken gently and with love? How many of us recognize that as acute as our pain can be in times of adversity, our peace and joy can be just as fierce and powerful?”
“I can honestly say, without a shadow of a doubt, that [the Girl in Charge] taught me to be a better human being. She taught me to have patience for myself and others. Life doesn’t always go the way I want it to and people don’t always behave conveniently to me. But I can accept that, and I can instead show compassion for myself and others. I can react with sympathy and empathy rather than with annoyance and anger. These are memories and experiences without which I cannot be myself, and I certainly cannot imagine who I would be without her.”
I cannot imagine who I would be without her either. The joy and peace she has brought into my life, far outweigh the heaviness of the burden of her care. And I’m so grateful that so many others have had the opportunity to be touched by her.
My new respite worker is absolutely right and chose the perfect word to describe her.