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.
Vigilance.
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.
Wonderful.
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.
Wonderful.
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.
It didn’t take long after the Girl in Charge was first diagnosed at 6 months old for me to learn the hard truth- that there was very little I could do to alter the trajectory of her life.
Yes, I could care for her and love her. I could take her to her doctors’ appointments and arrange her medical therapies. I could create charts and follow protocols and be vigilant regarding her care every moment of every day… but beyond all those things that any mother is willing to do to ensure the best outcome, I had very little control over what that outcome would be. I had to submit her life into God’s hands, whilst loving her through the hard stuff I couldn’t fix.
Like Autism, Charge Syndrome has a spectrum, and each child born with the syndrome can be found anywhere on that spectrum. No two children with Charge Syndrome are exactly the same, so there’s no real way of knowing what challenges your child will face.
There’s a high mortality rate amongst babies with Charge Syndrome. Many of them are born with heart defects, collapsed nasal passages, and kidney failure. For those who are blessed with the miracle of survival, many go on to overcome hurdle after hurdle, learning to walk and talk and read and write. Some even learn to drive cars and are able to go to college. Their lives are not easy- the syndrome is always with them, but many of them thrive.
But my Girl in Charge lives life on the other end of that spectrum. Yes, she is medically mild- we are so grateful that in her first year of life she didn’t experience a single one of those medically frightening symptoms. But she is developmentally severe. At 8 years old, she has limited hearing and sight, cannot talk, cannot read, cannot write, and has very few ways of communicating.
But over the years, I have always reassured myself with the fact that at least she wasn’t medically fragile. At least she wasn’t in and out of the emergency room all the time. At least she wasn’t on a long list of meds- in fact, she wasn’t on ANY meds. It was amazing.
I knew, in the back of my mind, that all of that might change once she hit puberty. But for now, I was grateful to have my medically mild child, whose health wasn’t one of the many things I had to worry about.
But that all changed about a month ago when I stood in the doctor’s office and heard his words come barreling down like a sledgehammer to my heart.
Epilepsy.
I heard the word over and over again in my mind, as though my psyche was trying to place it in its correct context.
Not only does she have Charge Syndrome, but she also has epilepsy.
The truth is I wasn’t surprised. I had suspected for several months that she was having seizures. But it was hearing the actual word – Epilepsy- that rocked me. I could no longer hold on to hope that I was wrong.
Many people hear the word seizure and envision a grand mal seizure. But that kind of seizure is the rarest form. Most people with epilepsy don’t have them. Most seizures are much more subtle. And some are hard to spot at all.
I know now that my daughter’s seizures started about 2 ½ years ago. They didn’t look like seizures back then, it looked like she suddenly was losing consciousness. She would be sitting upright and then suddenly drop to the ground. It happened mostly when she was sitting, but occasionally when she was standing. And it was scary every time. She would just lose complete control of her body and she would hit the ground.
Right after these episodes started, I took her to the cardiologist and the neurologist, both of whom ordered every test in the book – EKG, EEG, Ultrasound, MRI, etc. The tests took the better part of 3 months to schedule and administer. And then a month afterward, we finally got their collective opinion which was that she had vasovagal syncope.
In other words, she faints.
That’s what they said. They said she likely had chronic low blood pressure which caused her to faint, and that she simply needed more fluids and more salt in her diet.
So, despite the fact that it was such an inconclusive answer, we followed their protocol. For over two years, we’ve been pushing the water and putting extra salt in all her food. But nothing seemed to help. Despite our best efforts, she would still faint.
But then a few months ago, her fainting spells started looking very different. Not only was she losing consciousness, but her eyes would roll back, her face would contort, her body would stiffen and sometimes, it even looked like she was shaking.
I knew exactly what I was seeing, but I hoped that I was wrong. And I clung to that hope for weeks while I waited to finally get the Girl in Charge into the seizure specialist. But he confirmed my fears with that horrible word.
Epilepsy.
I didn’t start crying until I got to the car. I do that. I have emotions of steel when I’m standing in front of the doctor, but it’s later when I try to think of the words to use to tell someone I love, that it all becomes real.
Fittingly, we were in the middle of a torrential downpour. I had to push the Girl in Charge in her adaptive stroller through the deluge and race to get her in the van before either one of us was completely soaked. But once we were both in the car and I was waiting for the windshield to defog, I imagined myself telling my husband the news and that’s when I could no longer hold it together. In that moment, I felt as though the heavens were weeping with me.
It broke my heart that I had to tell my husband (who, once again, was out of town- the poor guy always seems to hear about the big ones over the phone) that our sweet little girl, who already deals with so much in life, has epilepsy.
I managed to drive my girl back to school and put on a brave face long enough to get her inside. The next day, after my emotions had calmed, I notified the school staff of the new diagnosis, and they immediately started a seizure log and have been wonderful about watching for signs and keeping her safe.
The Girl in Charge gets meds twice a day and we do what we can to manage it. But I know the truth. Epilepsy rarely goes into full remission. And as children age, the seizures usually get worse. I now know that epilepsy occurs in about 40% of children with Charge Syndrome. We’ve been lucky in so many ways, until now. And again I am reminded that there is very little I can do to alter the trajectory of my daughter’s life.
Once again, I must tell God, I submit.
I can’t fix this. I can’t control this. I can’t cure this.
I submit.
The one side effect that her meds have is that it makes her irritable- even more irritable than she already was. Will she lash out at me? Pull my hair? Scratch at my face? Try to throw herself out of my arms? In moments of desperation, will I scream a prayer to God to give me the physical strength I need to keep her safe? Yes. I know all of those things will happen because they already have.
I submit.
Will her seizures get worse? Will they threaten her life? I don’t know…
But, I submit.
She is in God’s hands. She will have the level of health and well-being that is only His to give. I am nothing but an instrument in His hands. I cannot control this. Thy will be done, God.
I’m about to do something I know My Mini Me does not want me to do, but I feel I must do it anyway. And that is… write about her in a blog post.
My Mini Me turned 13 years old this month, and I would be remiss if I didn’t acknowledge the remarkable human being that she is.
When she was born in October of 2006, like most moms, I had grand ideas about the kind of life I was going to offer her. But little did I know that not 5 years later, we would welcome a second daughter into our home that would prevent me from being the kind of mom, and offering the kind of life that I had anticipated would be possible those 5 years earlier. But what I didn’t see then, that I so clearly see now, is that the life I thought was so ideal would have lacked many important lessons. And that it would only be through their association with their little sister, that My Mini Me and My Mini Man would become the best version of themselves.
One of the first things My Mini Me learned from her little sister was compassion. I will never forget the day my husband and I sat her down and told her the hard news. We explained to her that we had just learned that our new baby girl was going to have some extra challenges in her life- that she couldn’t see very well and that she couldn’t hear very well. We explained that her body wouldn’t be able to do a lot of the things most children can do and that there were many challenges our family was going to face that most families don’t have to.
My Mini Me, who had spent the previous 6 months cradling and fawning and cuddling and kissing her new baby sister gently on the forehead each night before bed, looked up at her mom and dad with big, sad four-year-old eyes. We then asked her if she thought she could be a special helper to her little sister- help her to do all those things she couldn’t do for herself. And those big, sad eyes, turned into wide, excited ones and she nodded emphatically up and down and said, “Yes! I can help her!” as though it was the grandest idea she had ever heard.
And that is what My Mini Me has been doing ever since.
She immediately started getting me bottles and diapers and wipes and fresh clothes. She helped me to feed her and bathe her and put her to bed. But at times her enthusiasm got ahead of her. I remember one night before bed, she asked me if she could change her little sister’s diaper in the morning. I was surprised, but said, “Sure!” But when the morning arrived, My Mini Me came out of her room and said, “Mom, I’ve been thinking about it. I still want to help. But why don’t I do the strappy thing, and you do the wipy thing.”
But now, years later, My Mini Me whips a new diaper onto her little sister without a thought. Back then the Girl in Charge was 2… now she’s 8. I don’t know many 13 year olds who are changing an 8 year old’s diapers. My Mini Me is pretty much a rock star.
And when the Girl in Charge accomplishes something new, My Mini Me is her biggest cheerleader. Just this month, after years of trying, the Girl in Charge, who eats only pureed food, actually ate three Cheerios. I wish I could have recorded the joy in My Mini Me’s face when she shouted with glee and hugged and congratulated her. She feels her little sister’s accomplishments deeply, as if they were her own. My two girls have an indescribable bond in that way.
One of my favorite things is that sometimes My Mini Me will go into her little sister’s room and just hang out. She just wants to be with her. The Girl in Charge is non-verbal so no words are exchanged, but from the very beginning they weren’t necessary. The communication between them is pure and direct. It is an electric current of pure light.
Love.
Just so much unassuming, unconditional, unfiltered love. No guile. No expectation. Just love. And I know that the Girl in Charge can feel that love. When her big sister walks into the room, she lights up and giggles and reaches out and touches. She is always happier when her big sister is near. The bond between them is to the core. And it is eternal.
But it has also been tremendously difficult. My husband and I have had to structure our family life very differently than we otherwise would have. My husband travels a lot for work and we don’t always have respite care. We’ve missed school events, not joined clubs, celebrated birthdays at home, and not gone to more playdates than I can count. I can only imagine the number of times My Mini Me has felt second best, or… with a younger brother also on hand… even third. We’ve also, at times when we did have help, been fortunate enough to participate in those things, and for that I am grateful! But the sacrifices I’ve seen My Mini Me and her little brother make for their baby sister time and again are enough to make this Momma’s heart weep.
And I have. Many times.
She spent the afternoon at a friend’s house recently and after she got home she told me about how her friend’s mom had taken them to the craft store to get supplies for a fun activity they wanted to do. She said, “It was amazing, Mom. We just got in the car and went. We didn’t have to pack extra bags and see if everybody was happy and doing well first. We didn’t have to wait for a respite worker or make a plan for later in the week when we could go. We just went. We don’t ever get to do that here.” And I said to her, “Yep. That’s called spontaneity. It’s a luxury that you and your brother rarely experience.”
She didn’t know it, but in that moment, I loved her with a renewed intensity. She doesn’t even see it. She doesn’t see how amazing she is. She has no idea what she doesn’t have. She has no expectations. She just lives in this place of constant self-sacrifice and has never experienced life from the other side to know it.
I do know it. I didn’t grow up with a disabled sibling. I know what childhood is like from that other side. I know what she doesn’t have. But she doesn’t. Because she’s never known anything else. And she embraces her roll of big sister to the Girl in Charge with complete acceptance and contentedness.
But even as I pour out the adulation, I realize when she reads this, it will create in her another layer of expectation. “My Mom thinks I’m amazing, therefore I have to work even harder not to let her down.” When the truth is that if My Mini Me had a complete meltdown, refused to help, threw a fit, screamed and ranted on the floor like the Girl in Charge does all the time, I would say, “It’s okay, Baby Girl, we all need to do that sometimes.” But thus far, she never has. And I suspect she never will. Because that’s not who she is. She and I have a good cry together once in a while, but for the most part, she takes everything like a champ. She’s tougher than I ever was at 13. Heck, she’s tougher than I was at 25! She has more experience in her 13 years with empathy and sacrifice than many people have in a lifetime. The Girl in Charge has created in her big sister a measure of resilience that astounds me.
And I think ultimately, that’s the point. As much sorrow as our situation has caused me, looking back, I can’t regret it. It’s almost like God looked down on me and said, “Oh? You hope to raise your eldest daughter to be an extraordinary human being? Well then, move over Susannah, and let me take the wheel on this one. I’ll send your daughter a disabled little sister, and that will create in her a level of compassion and thoughtfulness and selflessness that you could never instill in her on your own. At moments in this journey, you will look back and worry that all the times you had to say no must certainly equal some level of neglect on your part, but really, that is how I will create in your daughter the ability to soar. Because it is only through developing those noblest of traits that we can become the best version of ourselves.”
The trials My Mini Me has borne has made her into that exceptional human being. There is an ability to love and empathize embedded into her soul that I didn’t place there. The Girl in Charge is raising her big sister to be somebody I never could.
If you are reading this, My Mini Me, please forgive me for writing about you in my blog. I know you hate the attention. But I just wanted to, once again, wish you a happy birthday, and to tell you how remarkable I think you are. When I grow up, I hope I can be just like you.
This blog, for the most part, is about the Girl in Charge (obv). And I love writing about her. But as much as I love it, I do have other interests. And so this is going to be my first “and other stuff too” post where I talk about something else besides the world that revolves around Little Miss Princess.
Something I love almost more than anything else is Family History Research. I’m not a great researcher, but I love the stories that I am able to find about my ancestors. Every little detail fascinates me and whenever I have a few minutes, I go online and browse. I often hit brick walls because my research ability (and my time) is so limited, but thankfully my dad is big into genealogy, so he is my go-to source when I have questions. And I also have a good friend who is a professional genealogist and she has been endlessly generous with her time.
Well, recently, our family made a discovery that I have literally lost sleep over. Two nights ago was one of those nights. I just couldn’t fall asleep because my mind was racing with this new information. Our discoveries are both exciting and heartbreaking at the same time.
It all started several years ago when my dad took a DNA test. Now, keep in mind, that we are a family with European heritage. Exclusively European heritage. We are as white as white can be. Boring, I know. No cultural diversity in our family at all.
Or so we thought…
But when my dad’s DNA test results came back in, we were shocked to discover a thread of DNA that made absolutely no sense to us. It said that he was 4% West African. You read that right. West African. My dad, Mr. Caucasian, had African blood…
WHAT?
Now, before you go thinking that we all originate from Africa (as some geneticists believe… so what’s the big deal?), I’m not talking about that. That was so long ago that that heritage no longer shows up in a modern-day person’s DNA. No… 4% is a lot for someone who thought he was exclusively European. That 4% had to come from a much more recent ancestor than several millennia ago.
And it specifically said West African- not Northern African. There was a lot of mixing between the Northern Africans and the Southern Europeans, especially when the Moors invaded Spain in the 700’s. But even that was too long ago for 4% of my dad’s DNA to be African. Besides, his test didn’t say Northern African, it said West African. The DNA pointed to deep Africa. And we couldn’t help but think that it had to be connected to the Transatlantic Slave Trade.
It was fascinating, to say the least, but was it true? Could it be true? (Please tell me it’s true! That would be so amazing!) But how could it possibly be true? Our family was as white as white could be. And we had researched generation upon generation of our family history and had never found even a whisper of information that would make us suspect we had African heritage.
And so, despite our eagerness, nothing came of it. We had zero leads. We literally sat on this information for several years just scratching our heads, questioning its legitimacy.
But still, I browsed. I couldn’t help myself. This piece of information fascinated me beyond any other we had discovered, so I moseyed on over to my dad’s family tree on occasion and just looked. I knew we had ancestors who came out of the South and I knew of several families who owned slaves. And so I wondered if that was where we would find the connection.
But it still didn’t make any sense to me. If one of our white slave-owning ancestors had had a child with one of his female slaves (insert expletive to describe the man here…), that would most likely account for European DNA being found in a modern-day black family, but it most likely wouldn’t account for African DNA being found in a modern-day white family (in theory, of course… there are so many variables that there’s no way to list them all). But somewhere a black person had to have had a child with a white person, and that child had to have grown up to have a child with another white person, and so on and so on in order for our family to be under the misconception that we were exclusively European and yet still carry African DNA in our blood.
But who was that person? And what was the explanation? We didn’t know. And my browsing got me nowhere. We were stumped.
Then one day, I had a breakthrough. I was watching Finding Your Roots (thank goodness for Henry Louis Gates – that man is a genius) and on this particular episode, he was interviewing Richard Branson. About halfway through the episode, Dr. Gates revealed to Mr. Branson the results from his DNA test. Amongst all of his very European heritage, Mr. Branson learned that he was also 4% Indian. And then the show went on to reveal a fascinating story about one of his ancestors who had worked for the East India Company, and while he was in India, he had a child with an Indian woman. After both parents died, the young child was brought back to England by British relatives to be educated, and then ended up marrying an English spouse and every generation afterward also married an English spouse. So by the time Richard Branson came around, that family story had been lost and no one knew about this Indian heritage. When Mr. Branson asked how far back that ancestor would have lived, Dr. Gates told him that 4% Indian DNA indicated that either Mr. Branson’s 2nd or 3rd great grandparent was full-blooded Indian.
As you can imagine I was thunderstruck. Second or third great grandparents could equal 4% DNA! That was how much West African DNA my dad had! But could it be? We knew who all of my dad’s 2nd and 3rd great grandparents were and none of them was African!
I was so confused. But I pulled up his family tree anyway and I started hunting. I combed over every single detail of every single one of my dad’s 2nd and 3rd great grandparents. And then I looked at all the photographs that we had of them and tried to view them through different lenses. Could this person I’m looking at, born back in the early 1800s, possibly be black?
But I got nothing. Ancestor after ancestor was just as European as I had previously suspected them to be. Until I got to Caroline… the very last person in that generation on his family tree… his mother’s mother’s mother’s mother.
Caroline
I couldn’t breathe. Could the answer have been staring me in the face all of this time? I had seen this photograph before, many times. But it never occurred to me to wonder if she was anything other than a white woman. I just thought (if I thought about it at all) that either she was an olive-skinned white woman or the photograph was poor quality and everything in it – her skin, hair, clothes, etc – looked darker than it actually was. But the truth is, I never even thought about it! It never occurred to me that someone so closely linked to my father generationally could be anything other than white. All of my browsings had taken me back into the 1600s and 1700s in Tennessee and Virginia because that’s how far back I had to go to find ancestors that owned slaves. But this line of my family had come out of Montana in the mid-1800s. It never occurred to me to look in this direction.
But was I seeing what I wanted to see? Was this woman really of African heritage? Was I crazy? I had no idea. All I knew was that through my new lenses, my 3rd great grandmother Caroline looked black.
So I started combing through her information. And I was gobsmacked. She was born in Kentucky in 1836 (a slave state!) and she married a white man named Hezekiah in Montana in 1865 (the year the Civil War ended! Prior to this year, if she had been a slave, she legally couldn’t have gotten married!), but was it just a coincidence? Was I seeing evidence simply because I wanted to? Was she simply an olive-skinned white woman born in Kentucky in 1836 and happened to get married when she was 29 in Montana the year after the Civil War ended? Possibly…
But my heart was racing. I felt like I had stumbled upon something that, deep within my soul, I knew to be true. I could feel it in my bones. My 3rd great grandmother Caroline had been born enslaved.
For months I mulled over the idea in my mind. Because of the Girl in Charge and just the general busyness of motherhood, I had very little time to do real research- five-minute increments on my phone whenever I had the chance. But I just couldn’t get Caroline out of my mind. I had to know, but I had absolutely no idea how to find out. I mentioned it to my dad and to my pro genealogist friend, but neither one of them got very far because there simply wasn’t enough information about where Caroline had come from. We hoped her death certificate would list the county in Kentucky where she was born so perhaps we could browse through their slave schedules. But it didn’t. It just said “Kentucky”. (And there are 120 counties in Kentucky! I couldn’t possibly go through them all.) On top of that, in the 1870 census, she was listed as white! So that contradicted everything I suspected.
The one thread of hope I had was that on Family Search, it said she had a brother named Moses, and in the 1870 census, Moses was listed as mulatto (an olden day term for being partially black and partially white) which would have strongly supported my suspicions. But in a later census, Moses was listed as white. So… did the 1870 census taker have really messy handwriting, and was that ‘M’ really a messy ‘W’? I didn’t know… And we had no actual evidence that Caroline and Moses were even brother and sister. We were relying on information that somebody else had put on Family Search, and it was unsourced. I was grasping at straws to support my theory and nothing was panning out. It was very possible that I was barking up the wrong tree… or the wrong branch if you will.
So we just sat on it. We didn’t have enough information to dig any further. I couldn’t support my theory with hard evidence. So we did nothing. For a long time.
But I still couldn’t help myself, occasionally, during those five-minute searches on my phone at the doctor’s office or waiting at piano lessons, I would go back to Caroline’s profile page on Family Search and just look at her. I would go over her information again and again just to see if I could find a clue that I hadn’t noticed before. I knew it was a long shot, but again, it was that feeling in my bones. I just felt sure that she was our connection to Africa.
Genealogy has always been very important to my family. I grew up hearing stories from my parents about the people that we come from. They engrained it in us how important it was to honor those who have gone before by remembering them and their stories. Patrick and Mary came over from Meath County, Ireland to escape the Potato Famine. Joseph, a skilled silversmith, and his wife Penelope came to America from Birmingham, England. Thomas, an impoverished shoemaker, emigrated to the United States from Newbury, England (which is right next to Highclere Castle! You know! Downton Abbey! I fantasize that one of my ancestors was a scullery maid or a footman for the Carnarvon Family (the real Crawleys…)). Then there was David and his daughter Margaret who emigrated from Paisley, Scotland where David was a skilled paisley weaver. There was Samuel who’s family became religious refugees after they were driven out of the state of Missouri at gunpoint, along with countless other ancestors who became Mormon Pioneers and crossed the plains to evade religious persecution. There was James who was a frontiersman in Tennessee and who lost his life after a battle with the Native Americans. Pierre sailed to Canada from France as part of Louis XIV’s army and his descendants moved south to America. Gregory was an indentured servant in Jamestown, Virginia. Mary was a 13-year-old girl who sailed over on the Mayflower. And there are more Revolutionary War veterans in my family tree than I can count!
My family roots in America are deep, and they are deeply European. The stories I have heard my whole life are stories of courage and resilience and optimism and hope. They are stories about people who have overcome tremendously difficult circumstances – stories that I never tire of hearing and which inspire me to this very day.
But none of those stories included the tales of men and women ripped from their husbands and wives and children and homes and cultures by force and sold into bondage, and were locked away in the bottom of a ship for months on end, where they were crammed together in tight, filthy spaces and suffered in a manner no words can possibly describe, and then forced into slavery on tobacco or sugar plantations, in mines or rice fields, and in domestic servitude in an unfamiliar land for the rest of their lives where they were considered to be merchandise with no rights, their relationships unrecognized by law, their religion and culture denied, forbidden to be educated, their lovers and brothers and sisters and children were torn from their arms and sold away from them never to be seen again, they were beaten, tortured, bound in chains, starved, whipped, raped, used as pack mules, hunted with bloodhounds, branded with hot irons, worked to the bone, denied medical treatment and then died young only to be replaced by another slave, and then another, and then another, many of whom were bred by the slave masters and overseers themselves through violent assault.
Those stories also didn’t include the tales of their beautiful native African culture, their religious beliefs, traditional medicinal practices, the stunning artistry and craftsmanship, and the transcendent power of their music and dance. They didn’t include the stories of their courage and fearlessness, their ability to maintain hope where all hope seemed lost, their determination to educate themselves in secret, the ingenuity it took for many of them to attain their freedom, and the personal sacrifice they were willing to undertake to risk it all and go back and help rescue their loved ones.
None of the stories I heard growing up included even a hint that that heritage ran in my veins as deeply as did my European roots. But according to my dad’s DNA, those stories belonged to me too. And it was heartbreaking to me to think that because of the culture of the country that I love, somebody along the way had decided not to pass those stories along, but instead decided to hide them in shame. He or she considered it to be a family secret that must be buried so far in the ground that nobody would ever find it. What that person didn’t recognize was that it wasn’t dross they were burying, it was treasure. And because of that person’s choice, that treasure – the names, the dates, the places, the stories, the songs, the traditions, the culture – was lost to our family. Maybe for forever.
But I was determined to reclaim it. I had to know. Whoever this ancestor was, he or she and their ancestors deserved to be honored for their courage and their optimism and their resilience and their hope with just as much enthusiasm and respect and open-mindedness and acceptance as those whose stories had been passed down openly. I was determined to find out who this person was, and embrace them proudly and boldly and with open arms.
But with no new leads, all I could do was occasionally stare at Caroline’s Family Search profile and wonder.
And then four days ago, while I was sitting in my children’s school cafeteria waiting to pick them up at the end of the day, I pulled up Caroline‘s profile again and almost screamed out loud right in front of all the other parents. Down at the bottom of the page, a note section had been added and it said this: “Former slave owner emancipated Caroline” and then it listed the name of the slave owner.
I was stunned. After all this time, somebody out in the big wide genealogical universe had found this piece of information- that had been so unreachable to us- in a county history where Caroline had once lived in the state of Iowa and uploaded it to Caroline‘s Family Search profile. And it was academically sourced!!!!!! Hallelujah!!! Not only did we have confirmation that Caroline had been born enslaved, but we also had the name of her slave owner!!!!!! Shouting for joy (internally) I started texting my dad and my pro genealogist friend and with excitement, they both went to work.
And this is the story they uncovered…
(Keep in mind that all African American research contains conjecture because most people who were enslaved were not named in the records. And we have been at this less than a week, so some of our initial impressions may end up being completely wrong.)
In Kentucky in the early 1800s, there was a man named John who was married to Milly and they had a large family of 15 children, including their oldest son Thomas and a much younger son named Harvey. John must have believed in the law of primogeniture because when he died, he left everything to Thomas- all of his property, including one enslaved male named Webb and two unnamed enslaved females of childbearing age. No other enslaved people were listed. Within 10 years, on the 1840 census, the enslaved male named Webb was gone from the record, but the two unnamed enslaved females of childbearing age were still listed. In addition, there was an unnamed enslaved male child and an unnamed enslaved female child, both under the age of ten. Caroline was born in 1836, and Moses was born a few years before her. We are confident these two children listed are Caroline and Moses and that one of those enslaved adult females is their mother (it’s possible each one of the women had a child, its also possible these children were acquired elsewhere, but its a safe conjecture that these children were born to one of these two females. Sadly, no name has been found for either woman, so we may never know the name of Caroline’s mother.)
Now, the question is paternity. It’s possible that Webb was the father. But those three slaves lived together in John’s household previous to them being passed on to Thomas, and no children were conceived during that time (that we know of) so it’s unlikely that that kind of relationship would have developed between them later. It’s also possible that another man from the area was the father. But it’s also a real possibility that Thomas himself, the slave owner, fathered those children. No other man is listed on the census in that household. It’s not a sure thing (the only way to know for sure is if we found a descendant of Thomas and compared his DNA to ours to see if there was a match), but its a solid conjecture. It’s also possible that another male member of John’s family became the father while visiting Thomas’ household. We may never know.
A year later in 1841, Thomas sold his land in Kentucky and moved the entire family (his family and slaves, his brother Harvey’s family, their widowed mother Milly, and surely others) to the state of Missouri. They settled on land in the north of the state close to the Iowa border. At some point in the future (we’re not sure when), the family was informed that they did not actually reside in the state of Missouri. They had settled too far north and they were living in Iowa. This was a problem for them because Iowa was a free state. If they remained, their slaves would automatically become free. So, Thomas picked up and relocated his family several miles south in Missouri so he could keep his slaves. Harvey, however (and this is fascinating), didn’t move south! He and his family remained in Iowa! We know he didn’t inherit slaves from his father, but he was a grown man of his own and one would think that if by this time he was going to own slaves, that he would have. But thus far we haven’t found evidence that he did (we may end up being wrong, but this is what we know so far.) And the fact that he had no problem remaining in a free state tells me that, quite possibly, he felt differently about slavery than his brother.
We haven’t found a ton more information about the family over the next twenty years. But the 1860 census was very enlightening. On this record, Moses is listed by name as an enslaved mulatto in his twenties living in Thomas’ household in Missouri. Caroline is also listed by name as a mulatto in the 1860 census but she is living in Harvey’s household in Iowa. And get this! She is listed as a family member!
Mind. Blown.
We can only speculate how national events were effecting the family in 1860. The Civil War had broken out and I’m sure there was plenty of uneasiness to go around. But Caroline’s world became even more unstable the next year because, in 1861, both Harvey and his wife passed away. Of course, we don’t know specific details and can only do our best to guess, but it appears that Caroline had a tough choice to make. She was a black woman on her own in a free state in the middle of the Civil War. The Fugitive Slave Act would have allowed anyone to capture her and sell her back into slavery on a whim. The white people who had considered her a family member, and therefore were protecting her, had died (we don’t have details about where Harvey’s adult children were as of yet), and her closest living relative was her enslaved brother who lived a few miles down the road in a slave state!
The initial note I saw in Family Search said that Caroline had been emancipated by her slave owner… but here’s the clincher. It said the slaveowner was Harvey, not Thomas. We discovered after the fact on our own that this is a mistake. There’s no evidence that Harvey ever owned slaves. But perhaps assumptions were made by other people in the community who thought that because Caroline lived with Harvey and his wife in a free state, that he had previously owned her but had then emancipated her and then those people recorded it in the official county history. (A side piece of evidence that makes me think that Caroline had good feelings toward Harvey and his wife is that Caroline, later in her life, named one of her children Elizabeth- which was Harvey’s wife’s name. Again… conjecture… but you’d think if she hated the woman and was being held in de facto slavery illegally in their household that she never would have given one of her children that name.)
We don’t know exactly what happened during the months and years after Harvey and Elizabeth died. Did Thomas see the writing on the wall and simply let Moses go? Was there any familial concern in that regard? Or did Caroline return to Thomas’ household and then she and Moses conspired together to escape north into a territory that was not yet part of the United States rather than wait and risk the South winning the war? We don’t know. I hope we can track down more details someday, but it’s possible we may never know.
What we do know is that sometime during that next year, Caroline and Moses show up in an obscure mining town in Montana. And in 1865, Caroline entered a mixed-race marriage with a white man named Hezekiah. It was recorded in the town records that Hezekiah and Caroline’s first child was considered to be the first “white” child born in that town (considered “white” because he was not a Native American), and on the 1870 census, both Hezekiah and Caroline claimed to be white. Moses, however, who is recorded as being a farm laborer, was listed as mulatto. But by 1890, he was also claiming to be white on the census.
From there we know that Hezekiah and Caroline had 7 children together. Their daughter Margaret married a white man named Elijah who was estranged from his family in Utah and who had come to Montana to work in the mines. At some point after their marriage, they moved to Idaho, where, in 1906, Margaret died at the age of 36, leaving her 5 children motherless. At some point over the next several years, Elijah’s family got wind of his circumstances and reached out to him. Rather than stay in Idaho, or return to Montana, Elijah decided to take his light-skinned mixed-race children and move them down to live in his extended family’s very white community in Utah. And I strongly suspect that that was the day the beautiful African heritage of Elijah and Margaret’s children was lost forever.
Elijah and Margaret’s Children
But the thing that I can’t stop wondering about is how that information was suppressed. Did Elijah instruct his children to never speak of their African heritage again? If he did, that is soul-crushing. That level of shame, the kind that develops when a person has to bury who they are, permeates to the core of a person’s identity. Its tentacles wrap around every part of a person’s emotional development and it doesn’t go away on its own. It gets passed down generationally, and is especially damaging to future children and grandchildren because they don’t know where this feeling comes from of being ‘other’ or ‘different’ or ‘less than’ or ‘inherently worthless’. And to be honest, that’s the most enlightening part of this entire journey for me. It explains a lot about why my family is the way it is.
But as sad as it makes me, I can’t bring myself to judge Elijah harshly for that choice. It was probably a decision made out of love for his children. Those were tough times in America to be anything but white. But it still makes me deeply deeply deeply sad that that was a choice he felt he had to make.
And so, their family history was never spoken of again. One of his children, Caroline (named after her grandmother), was my great-grandmother. And by the time her daughter Amy (my grandmother, whom I knew very well growing up) was born, there wasn’t even a whisper that her maternal line led directly to Africa. That piece of information was long gone, buried deep underneath the racial tension that existed in America at that time.
My Grandma Amy in 1945, the year she graduated from high school
Words cannot express how grateful I am for modern technology and for the wonders of the DNA test. AND for that mystery researcher out there that posted the new information on Caroline’s profile. Because of it, our family has been able to shine a light on a part of our family identity that never should have been considered shameful.
There is still so much more research to be done. So many more nooks and crannies that can be opened up and dusted off- archives in Montana and Iowa and Missouri and Kentucky that haven’t even been touched yet. And I am hoping that at some point we will be able to find out what Caroline‘s mother’s name was, and if Thomas was actually her father.
But even if we are unsuccessful, I am glad that at least now I don’t have to look at my father’s family tree with bewilderment, wondering where that elusive African DNA came from. And as I strive to pass on family stories to my children, I can be the first generation to include Caroline’s in the mix. I can tell my children that here’s a woman who endured the horrors of slavery for the first 25 years of her life, but who, when presented with the chance, embraced freedom on her own terms and set her own course in life, and didn’t let the world she lived in tell her she had less of a right to that pursuit of happiness that all Americans are promised. I am inexpressibly proud to be Caroline’s 3rd great-granddaughter. And my hope is that now that her story has been redeemed, that my children and grandchildren and great-grandchildren will celebrate this remarkable woman for many generations to come.
I never knew until I had a child with disabilities that it was possible to be the center of attention and invisible at the same time.
Taking the Girl in Charge out into public can be a very lonely experience. Because of her non-existent proprioceptive system, she is constantly seeking sensory input which causes her to move her body in unusual ways. She also makes loud, unintelligible noises. She cannot speak but she still likes to hear the sound of her own voice. So, when she enters a crowded, public setting, she, and therefore I (or our family, if we are all together), become the center of everyone’s attention very quickly.
But that overt focus from the strangers around us doesn’t last for long. It doesn’t go away, mind you, it is just no longer overt. Most people in the room continue to very much pay attention to us, but what happens in the few seconds after everyone notices us, is that they quickly look away. They haven’t stopped paying attention to us, they just refuse to acknowledge us. And this happens everywhere- in restaurants, in libraries, in museums, in school hallways…. It is a common experience. And it is isolating. At times, painfully so.
I don’t entirely know why people look away, but my guess is that there are several reasons.
For some, I think they just outright feel uncomfortable. There are still those in the general American population who feel keenly uncomfortable in the presence of people with disabilities. I wish this wasn’t the case. But it just is.
Then there are those whom, I assume, are disinterested. When they look away, we aren’t the center of their attention anymore because they quickly refocus on their own lives- which I actually think is great. I have no issue with those who live and let live. I don’t actually want us to be the center of people’s attention when we walk into a room.
But then there is another group of people who I completely relate to because… well… I used to be one of them. They look away because they think it is the polite thing to do. They’ve been taught their whole lives that it is impolite to stare and so when they notice people who are acting in a different (maybe embarrassing) way, they don’t want to be rude, so they look away. But what this group of people doesn’t realize is that looking away doesn’t come across as polite. It comes across as the exact opposite. And it is very isolating for those who are being avoided.
Going out into public is difficult for people with disabilities and their caretakers for so many reasons. Despite the ADA and other such laws, many places aren’t as accessible as they need to be. And many people with disabilities depend on the kindness of strangers to get them through their trip to the grocery store, or in and out of a restaurant. So when other people refuse to acknowledge them out of a misguided sense of politeness, it makes life outside the safety of their own home very difficult to navigate.
It took becoming the mother of a severely disabled child for me to come to realize this. And it took experiencing this public isolation for me to discover for myself what the solution is. And it is really quite simple. The first thing the disabled community needs from their able-bodied neighbors is acknowledgment. Simply put, please don’t look away. Instead, TRY to make eye contact. And then once you make eye contact, do one simple thing: Smile.
Just smile!
It’s so simple. Or better yet, say “Hello.” Even better, ask them, “How are you today?” Most public interactions need not be any more complicated than that.
Most people with disabilities and their caretakers are really quite self-sufficient. We’ve learned to plan, predict, and accommodate for our needs very well. But it’s that sense of being invisible that makes everything out in a public setting just that little bit harder. So in most cases, just a simple acknowledgment from those we come in contact with makes things that much easier. It gives us an idea of who we can turn to for help if the need should arise. It gives us that basic sense of community, the reassurance that even though we may be a bit different, we still belong. It’s as though our fellow citizens are saying, “I see you, I’m here for you, I’m happy to help.” And when you are on the receiving end of that acknowledgement, it makes all the difference in the world.
“And how did little Tim behave?” asked Mrs. Cratchit.
“As good as gold,” said Bob, “and better. Somehow he gets thoughtful, sitting by himself so much, and thinks the strangest things you ever heard. He told me, coming home, that he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk, and blind men see.”
I’ve been thinking a lot lately about this passage from Charles Dickens’ A Christmas Carol. Tiny Tim is so at peace with his lot in life, and his only hope is that his disability might bring other people unto Jesus Christ.
I don’t entirely know why God allows disability to affect some people’s lives. But I do know that the challenges I face with the Girl in Charge have brought me to my knees many times. So I can only assume that bringing me unto Jesus Christ is one of the reasons why disability has affected my life. I am completely inadequate to carry this burden alone. And no other source of assistance or community support, even that which comes from family, has ever compared to the peace and the strength that I find from laying my burdens at my Savior’s feet.
I have often had people tell me that “God only sends special children to special parents.” I know that comment is well-meaning, but it really gets under my skin. Because it simply isn’t true. Do you know how many disabled children are in foster care? I have no idea the number, but it’s a lot. God doesn’t only send special children to special parents. He sends special children. Period. Only the lucky ones have parents who sacrifice everything to give them the best life possible.
But it is hard. Strenuously so. And, as I’ve shared before, a day doesn’t go by that I don’t wish things could be different. But I can’t deny the good – the irreplaceable good – that has come into my family’s life because of the challenges we face with the Girl in Charge. We are people we never would have become if our lives had been easier. My Mini Me and My Mini Man are kinder, and more compassionate than they otherwise would have been. They know how to sacrifice something they want for the benefit of someone they love. They accept people who are different from them and they don’t judge.
My Mini Me and My Mini Man
And my husband and I can relate better to people who suffer significant disappointment or loss or medical challenges. We are more willing to be directed by God to lift the burdens of others. And isn’t that what it’s all about? Isn’t that what Jesus wants from us in the first place, to forget about ourselves – like He did- and to lift up the people around us?
So… I don’t think God sends special children to special parents. I think He sends special children to those who need the most help in becoming better people. More selfless. An advocate for the downtrodden. Patient. Someone who is willing to love everyone, even those who at times are difficult to love.
I think if the Girl in Charge could speak, she would say the same thing as Tiny Tim, that she hoped when people looked at her, they would be reminded of He who has the power to heal all things, whether those disabilities be physical, spiritual, mental or emotional.
I know that has already happened on at least one occasion. A few weeks back, a sweet friend handed me a note after our own church services. She said, “As I saw your family sitting in Sacrament today, my heart just filled with love and happiness. I loved seeing [the Girl in Charge] and her love for her dad. She has such a special soul and I love watching the love shared between all of you.”
That note was healing to me. And it is what caused me to think of that passage from A Christmas Carol in the first place. That day in church, I was worrying about how noisy the Girl in Charge was being and whether or not I could grab her hand in time if she tried to pull the hair of the lady sitting in front of us. But what my friend witnessed was love as our family skillfully carried out a silent cooperation with each other to meet the needs of a little girl who could not meet those needs for herself.
I think that through my friend’s note, God was trying to remind me for the 1000th time, that He is in charge… not, as I like to joke, my 8 year old daughter. And that even though He can make lame beggars walk and blind men see, more importantly, He can make the spiritually lame walk and the spiritually blind see, and He often does that through the humility we gain as we bear the burdens He asks us to bear.
I am not humble. My pride tells me everyday I deserve to have it easier. But I am grateful for the precious nudges God gives me on occasion to remind me that I am in His hands and that through this experience of being the mother of the Girl in Charge, He is actually making me into a much better person than I could ever become if my life was as easy and self-fulfilled as I would choose for it to be.
One of the deepest desires of my heart is to be a writer. No, not just a blogger, but a real, published novelist. Several years ago I was able to complete nine chapters of a novel that I still very much want to finish. But the level of attention (read: mental and emotional energy) my family, especially the Girl in Charge, requires, makes it difficult to focus long enough to make much progress these days.
My inability to be creative in the area that means the most to me is something that causes me deep heartache. So, sometimes to compensate, I do writing exercises. I choose subjects that are more immediate- things I actually experience on a daily basis so no research is required.
The following is one such exercise. It is based upon many real-life experiences compiled into one.
Her hand lashes out quick as a lightning bolt. Before I have time to protect myself, her long, slender, silky smooth fingers are entwined in my hair and she is pulling with all of her might. The familiar pain, sharp and exact, garners the response I suspect she is hoping for. I cry out in pain. But even as I do so, I know that help will not be on its way. I am at home alone. My twelve-year-old and ten-year-old are out with their dad- not in the next room available to come to my rescue as they so often do when their little sister lashes out at me in frustration.
Both of my hands instinctively go toward the source of my pain and I attempt to disentangle her vice-like grip from the strands of my long hair. But as I do so, her other hand reaches out and takes a hold of the hair at the back of my head. I try to pull her thin, wiry arms toward my head to lessen the pain. But again, I know this is a strategy that has failed me many times. I can’t disentangle her double-fisted grip while holding her wrists. So I let go of one of her hands and allow her to pull the hair at the back of my head with full force while I attempt to untangle her other hand. As the pain grows more intense, tears stream down my face over my bruised cheek where it came in contact with the heel of her foot three days ago while I attempted to put her shoes on for school. I close my eyes and wince as I feel strands of hair being pulled from my scalp at the root.
Her fingers are wiry and strong, and prying them open takes all my strength. I hesitate, worried I’ll hurt her. But I force her fingers open anyway because my pain becomes excruciating. It’s impossible to open her fingers all the way, so once they’re open just enough, I slowly pull her hand through my hair until it’s almost free. At the last minute, she clamps down hard on my hair again and I can hear some of it ripping as finally, I pull her hand free. I look down and see a clump of broken strands of hair protruding from her tight fist. I pull her arm down and secure it under my leg, and then go to work on the other hand. After many minutes of arduous work, slowly, painfully, I’m able to extract that one as well.
I hurry and push myself back, out of arms reach, and lean against the wall. Taking deep breaths, I massage my scalp where the skin still feels like its on fire. My hair is messy and I let it hang long in front of my face as I rub the most painful spots. When I finally raise my head and pull my hair back, what I see is my sweet, innocent child lying on her back with her hands underneath her, one knee bent, seeking sensory input by wiggling her bottom back and forth, and staring out the window through the top left-hand corner of her peripheral vision, where her eyesight is the best.
I hear my phone ping and pick it up to see pictures my husband has sent me of the big kids. They are at Mt. Vernon with cousins who are visiting from Utah. I smile as I scroll through the cute shots of all the kids with Martha Washington, and the fife and drum corp, at the stables and old slave quarters, and a beautiful one with the Potomac River in the back round. I put my head back against the wall and allow myself the indulgence of being taken away. I imagine the warm breeze flowing through the rich green trees, the smell of the fresh spring blossoms, and the sound of gravel underneath my tennis shoes as I walk along the immaculately kept grounds of the grand old estate. I imagine the laughter of my three able-bodied children as they run ahead with their cousins to pet the horses and chase the chickens. I imagine the Girl in Charge not being in charge, and simply walking over and pulling on my arm until she gets my attention so she can ask for a snack. I imagine a life of togetherness, where being left behind to manage my daughter’s sensory processing issues is something we never have to consider. I imagine… I stop. I can’t do this. It hurts too much.
So, I sigh and refocus on the pale pink bedroom of my eight-year-old daughter, and slide back over to ask her once again if she wants to eat, this time being careful to keep my hair out of arms reach.
Although this may be a writing exercise, everything in it is 100% true. I, and many others, have experienced this painful situation many times.
My Mini Me simply wanted to hug her little sister. But the Girl in Charge had other ideas. You can’t quite see it in the pic, but My Mini Me is getting her hair yanked pretty hard on the other side.
My Mini Man doesn’t usually get his hair pulled, but on this day, he was unlucky. I had just been snapping pictures of how cute they were together, so I happened to catch this pic on accident. In the photo, he’s still smiling in surprise, but within seconds, he was in tears.
Worst of all was when our former respite worker asked the Girl in Charge to be the flower girl at her wedding. The night before, we attended the rehearsal dinner. The bride-to-be looked stunning with her professionally styled hair. But then, you guessed it, the Girl in Charge decided a restyling was in order. I was mortified. But true to her nature, our former respite worker kept saying, “It doesn’t matter. It’s just hair. The only thing I care about is that she’s here.”
And about 6 months ago, this happened. See that chunk of hair missing?
That was the day I was forced to accept that having long hair just wasn’t realistic for me anymore. After that, I tried shoulder length hair for a while, but one day while buckling the Girl in Charge into her car seat after picking her up from school, she was particularly agitated from sensory overload and lashed out at me with both hands. I found myself in the school parking lot, with my head stuck inside the car, attempting to disentangle my shoulder length hair, while the Girl in Charge screamed in frustration. It took (what felt like) an eternity to finally pull myself free. In tears from the pain, I resolved in that moment that it was all coming off. Long hair, of any length, just wasn’t practical for me anymore. It took me a few weeks, but last Thursday the chop finally happened.
I would say “Short hair, Don’t care” as the saying goes. But it’s not true. The truth is I do care. Very much. I would love to still have long flowing locks. But like my dream of being a published novelist, it’s simply not in my reality right now.
Two things happened this past week that brought me to a place of deep contemplation and study.
The first is that I had a conversation with someone who sits on the board of directors for a children’s hospital. She shared with me that there are still individuals in health care and state government who believe that children with disabilities should be placed in institutions.
The other thing is that my new state-funded respite worker arrived.
The opposite nature of these two things has caused me to reflect upon my good fortune with a renewed sense of gratitude. I have been reminded, once again, that I am standing on the shoulders of giants.
From the moment we learned that the Girl in Charge was going to be disabled, we were inundated by state and local early intervention services who contacted us, eager to offer the support we needed. And after we moved, our new state offered generous services for her as well, including respite care paid for through her Medicaid Waiver. So for the past six years, I have been blessed to have a respite worker in my home several hours a day, several days a week, giving me relief so that I could attend to the needs of my other children. This program has provided the Girl in Charge with the one-on-one care she needs while at the same time saving my sanity. I simply do not know what we would do without it.
These are the extraordinary women who have come into my home and treated the Girl in Charge like one of their own. I am forever in their debt.
But knowing there are still those in positions of authority who believe children with disabilities should be institutionalized is, at best, baffling to me, and at worst, horrifying. This knowledge has driven me to re-educate myself about the history of disability in this country and I have been reminded in the most sobering way that if our daughter had been born 100 years ago, her life, and ours, would look very different.
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 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 financial 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 the disabled child 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 disabled children.
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 happpiness, 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 disabled child, 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 disabled sister, Rosemary. 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 disabled family member.
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 disabled 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.
But despite the progress 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 disabled children. 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 were disabled 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.
Three of the phenomenal educators who work tirelessly to instill autonomy and self-respect into the Girl in Charge and her classmates. We have never not had special education services readily available to us.
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 institutions. More and more of these institutions began to close- a process that continued well into the 1990’s.
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.
This history is humbling and awe inspiring to me. I can’t imagine the heart ache parents went through for generations as they fought against a system that denied them and their children their basic constitutional rights. Knowing that there are still people in positions of authority today who believe children with disabilities should be institutionalized, is unbelievable to me.
The thought of placing the Girl in Charge in an institution is the stuff of my nightmares. Imagining that we might never have known the sound of her giggles when her dad comes home, or how it feels when she throws her arms around you and gives you a million-dollar hug, or the way she sings musical scales in her bedroom at 2 am, or how she wiggles her little bottom back-and-forth when she’s frustrated, or the way she squeals with joy when she’s about to get into the bathtub, or how she puckers her lips when you go in for a kiss, or the way she collapses in on herself when you tickle her and does that little growly giggle…. Imagining a life without all of her unique beauty and joy is absolutely devastating to me. All of that would be gone if she was in an institution. In fact, none of that would have developed in the first place because children in institutions do not thrive. Period.
Knowing that thousands upon thousands of parents before me never knew the joy of their disabled child, is soul crushing. Not to mention the rampant neglect their children endured in their absence. It is unthinkable. Those are the parents I have been mindful of this week- the ones who didn’t have state funded in-home respite care. Those are the parents who suffered beyond anything I can imagine.
But those are also the parents who changed the world.
From the darkest corners of their agony, they rose up and fought. They are the giants on whose shoulders I stand. And to the day I die, I will be profoundly grateful that because of their determination, hard work, and sacrifice, each night I get to go into the quiet, peaceful bedroom of the Girl in Charge, kiss her gently on the cheek, and tell her how much I love her. It is a privilege so many of them were denied.
The words Thank You are so inadequate. But they are all I have. To all those who fought for my daughter’s right to get an education and live at home with her family, from the bottom of my heart, Thank You. I owe you everything.
I need to tell you about September 14, 2011. It’s the day that changed my life forever.
When the Girl in Charge was about 2 months old, we started noticing something different about her eyes. Up until that point, we thought she was a completely normal child. But when her eyes started opening up more fully, one of them didn’t seem to want to open all the way. It was a bit smaller than the other one. Finally, at her 3 month check up, I mentioned it to the doctor and she said she didn’t think there was anything wrong, but “why don’t you get it checked out, just in case.”
So, she sent us to a pediatric ophthalmologist. I still remember that the appointment was set for September 14th at 10:30 a.m. (funny the details that still stick out all these years later). The crazy thing is that I almost didn’t go to the appointment. The Girl in Charge was my 3rd child, and to be honest, I kind of felt like a pro. I didn’t freak out about every little thing like I had with My Mini Me. My in-laws were in town and My Mini Me and My Mini Man, who were 4 and 2 at the time, were excited to spend time with their grandparents, and the entire thing (the appointment) felt like a complete inconvenience.
Several days before the appointment, I even had the thought that maybe I would call and cancel. I was POSITIVE there wasn’t anything wrong. It was just one of those little cosmetic abnormalities that would give her face character. At least that’s what I kept telling myself. But I forgot to cancel the appointment, and by the time I remembered about it again, it was too late to back out without getting charged the cancelation fee.
So, I reluctantly planned the appointment into that day’s events. We were going to go do something fun afterward and I didn’t want to drive all the way home to get my big kids and my mother-in-law when I was through, so they all came with me.
I had everyone sit in the waiting room while I took the Girl in Charge back to the exam room. We did the whole routine where the doctor does the initial exam, then the eyes are dilated, and then we wait half an hour, then we go back in and he examines them again. Internal eye appointments are long (I didn’t know it at the time, but this was the first of many such exams), so you just take a deep breath and get through it. At this point, I was still focused on our fun outing (funny… now I don’t even remember what our plans were… because we never went), and I just wanted the doctor to hurry up and get us out of there.
So, finally, the doctor finished jotting down his notes and scooted his little roller chair up close. I expected him to say, “Well, I don’t see anything wrong. Her eyes just have a unique shape. Have a great day!” But that is not what happened. Instead, he just looked at me for a minute. I waited, not at all worried. Finally, he spoke, but his words were very hesitant.
“Have you been to see any other physicians? Any other specialists?”
I said, “No.”
He said, “No other doctor has told you there’s… anything wrong with your daughter?”
I said, “No.”
He was silent for a few minutes, and then spoke softly. “I’m not usually the doctor who breaks the bad news. I… I tend to be further down the list than this.”
I said, “What do you mean?” … still not feeling worried. Just curious. Again, I was so confident there was nothing wrong.
He said, “Well, I… I feel awful to have to tell you this, but your daughter can’t see.”
It’s difficult to explain how it felt hearing those words. It took a few beats for my feelings of impatience to fall away and for my new feelings to surface. But it’s hard to explain what those new feelings were. It was a mix between curiosity and disbelief. Like… he couldn’t possibly have said what I’d heard, so I just needed to get clarification.
“What do you mean? Like she’s blind?” I asked.
He kind of toggled his head back and forth lightly, still hesitant. Looking back, I really think the doctor handled it like a champ. I worked with him for many months after this, and he ended up being just an absolute star of a doctor. He had the best bedside manner and was so supportive. But at this point, we were new acquaintances. “I don’t know that I would say blind,” he emphasized the word. “Perhaps… all but blind.”
Those are the words I have remembered all these years. “All but blind.”
And that’s when my curious disbelief turned to shock. I felt my throat start swelling and my eyes start burning, but I pushed through. I started asking questions like a … you know… one of those tennis ball machines that spits the balls out in a steady rhythm no matter how bad the person is at hitting them back. I think the doctor could barely keep up with me. I kept telling myself, “Don’t fall apart, Susannah. Whatever you do, do not fall apart. Now is the time to get answers,” so I just kept spitting out the questions. I addressed every detail I could think of. And every answer he gave that was even mildly ambiguous, I would seek clarification. I heard phrases like “her retinas have holes in them” and “her optic nerves aren’t aligned correctly.” But I just kept asking for clarification, over and over and over again, until I finally sat there looking at him, with nothing else to say.
After a moment, he followed up with, “I will tell you… I have a feeling that this isn’t the only problem you’re going to discover. My gut tells me that… well… that she has a lot of other challenges ahead of her.” And then he gave me a long list of specialists I would need to contact.
(I later learned that in the original medical report the ophthalmologist – who, again, was the very first specialist to examine her- sent over to her team of geneticists, he put a note at the bottom of the report. It said, “I suspect Charge Syndrome.” It took that team of geneticists 3 more months of pouring over their own results and the results from countless other specialists – neurologists, cardiologists, ENT’s, audiologists, etc. – before they were able to determine definitively that that ophthalmologist’s hunch had been spot on. I remember being really impressed that he’d suspected Charge from the beginning, even though it’s such a rare syndrome. We’ve been blessed with such amazing physicians all along the way.)
And at that, I had nothing more to say. I didn’t know what I could say. Other than, “Well… thank you.” And I gathered our things and walked out.
That’s when it got hard. When I walked down the hallway toward the waiting room, everything was spinning. My mother-in-law, who was so patient to be entertaining my big kids all that time, smiled at me, and said, “All set?” And I must have mumbled, “Yep,” or something like that. We put the Girl in Charge back in her stroller and walked everyone out the door.
We were waiting for the elevator when my MIL asked innocently, “So, what did the doctor say?” I took a deep breath and said, “He said…” but that was all I could manage. I couldn’t talk around the lump in my throat. I just looked at her, trying to think how I was going to tell her. And then I completely fell apart. I started sobbing. Just… total annihilation. I was standing outside an elevator in a medical office building, with people coming and going, with My Mini Me and My Mini Man looking up at me with concern and confusion, and I was absolutely sobbing. My MIL guided me over to a bench and she put her arms around me and kept telling me, “It’s okay. It’s going to be okay.” And she didn’t even know what was wrong yet. But she just kept saying, “It’s okay. It’s going to be okay.”
Finally, the words formed in my mouth and I was able to tell her the doctor said she was blind. “Not blind, but all but blind,” I said.
It’s interesting how the color fades out of life. Driving to the appointment, we were excited about our day. The sun was shining. The weather was beautiful. The palm trees were vibrant and green. But the drive home was gray. The kids didn’t understand why we were going home, rather than on our outing. The trees were colorless. The ocean wasn’t blue. The sun was dull.
I remember catching sight of my MIL in the rearview mirror. She was sitting in the back next to the Girl in Charge, just looking down at this little 4 month old in her car seat. She was holding her finger out, so her baby granddaughter’s little fingers could wrap around hers. Something she had done countless times, but now it must have held so much more meaning. I could tell, as she looked down at her granddaughter, that she was trying so hard not to cry. I think she was scared- not for the Girl in Charge- but for us. But by then I was done crying (at least for that day). All my tears were gone. I just felt numb.
Besides the phone call I made to my husband, who was out of town for work, I can’t remember what happened between that moment and about 4 hours later. I think I walked around the house in a daze, doing the bare minimum to meet the needs of my children. It was around dinner time that I found myself alone for the first time since hearing the devastating news. My in-laws were in their room, My Mini Me and My Mini Man were playing in the backyard, and the Girl in Charge was sleeping in her Pack N Play on the other side of the family room. I was standing in the kitchen thinking about all the to-do’s on my list. I had at least half the list of doctors appointments I still had to make and my children still needed dinner. But I couldn’t bring myself to do any of it. I was just standing there. Frozen. Paralyzed with grief.
Up until that point, I hadn’t thought much about God’s part in all of this. I was just existing, the shock having hijacked my mental state. But for the first time that day, as I stood there, I started thinking about my relationship with God. Part of me wanted an explanation. I wanted to say, “Why didn’t you tell me? How come you didn’t tell me this was going to happen?” Like I had somehow been betrayed by Him. But those words never formulated in my mind. Instead, the words that came were simple and desperate, “What am I going to do? How am I going to care for a child who is blind?”
And that’s when the heavens literally parted.
I think God was just waiting for me to turn to Him. Because as soon as I did, he gave me an experience that I will never forget for the rest of my life.
As I stood there, I physically felt God’s presence come over me. I experienced a level of peace so complete that it defied understanding. Peace. Pure, undeniable, indescribable, all consuming peace. It is a moment I will never forget. If I had ever wondered if God knew me, was aware of me, loved me, up to that point in my life, all my doubts were gone. God was real. And everything truly was going to be okay.
And then He started to tell me things. Not in words. But pure knowledge flowed into my mind. I knew that this wasn’t a mistake. I knew that this was all part of God’s plan for me. He even told me that I had agreed to it. And that the Girl in Charge had agreed to come to earth with a body that didn’t work.
But the most surprising part of all was that what I was feeling didn’t feel new to me. It was almost like God allowed me to have a memory. He didn’t tell me new information, he just unclouded my mind long enough for me to remember what I already knew deep in my soul. I found myself saying in my mind, “Oh, yah! I remember this. I knew this… once. But forgot….”
And then the feeling faded away and I was back in my kitchen with all my to-do’s and dinner still waiting to be made.
And so it began. For the next three months, we took the Girl in Charge to more specialists than I can remember. And all we got from each of them was more bad news. She was also deaf in one ear and hearing impaired in the other. She also had facial palsy and a narrow nasal passage. Her proprioceptive sense did not exist, nor did her vestibular system. She also had cranial malformations and irregular inner ear canals. And the list went on. Ultimately, in December of that year, we finally got the official diagnosis: Charge Syndrome. And with it, we were told we should expect a lifetime of multi-sensory impairment and over-all developmental delay. Our lives would literally never be the same.
And they haven’t been.
My feelings about having a disabled child have gone up and down over the years. Some days I think she is the most amazing thing God ever created and her existence has given me such purpose and direction in life. On those days, it’s easy to remember that amazing spiritual gift I was given on the afternoon I learned she was “all but blind.” On those days, I have no doubt that I am living the life I was always meant to live.
But on other days I don’t feel that way. In fact, on most days I don’t feel that way. On most days it’s really hard walking into her room in the morning, knowing that when I whisper, “Good morning, Sweetheart. How did you sleep last night?” that it will be met with non-stop crying, and that for the next 30 minutes, I’ll be screamed at and kicked. That basically, I will have to wrestle a 7 year old… now an 8 year old… to get her diaper changed, get her dressed, brush her teeth, comb her hair, put her shoes on, and finally her jacket. Some days, I lie in bed after my alarm goes off knowing that that daily routine is waiting for me, and I Just. Don’t. Want. To. Do. It.
In fact, for this very reason, I have pondered that moment of pure spiritual knowledge countless times in the last 8 years. It’s the knowledge that I chose this that is sometimes hard to swallow. Did I really? How could I have? And if I did, what was I thinking?
And what did that moment look like? Did God sit me down and say, “You can have this amazing person in your life, but she’s coming disabled, are you willing to accept that?” Did I go to God and say, “I want a sure thing. Give me whatever trials I need in my life to guarantee that I will be humble enough to make good choices so I can return to live with you?” Did He send me a tiny disc that said, “Your mission, if you choose to accept it…” before it self destructed?
I have no idea. What I also don’t know is this. What did I understand then, (that would cause me to choose such a heavy burden), that I don’t understand now? What have I forgotten? That is the question I have asked myself so many times. What did I understand then with such certainty, that seems to be lost to me now?
If you’re expecting me to share some grand insight, some divine answer I’ve received after years of faithful ‘search, ponder, and pray’ -ing, I’m sorry to disappoint you. Because I’ve got nothin’. At times, the peace I felt that day has resurfaced in powerful ways and sustained me in very dark moments. And for that, I am extremely grateful. But not most days. Most days what I experience is raw, gut wrenching struggle.
I have heard such beautiful words from people all of these years. Words that I genuinely appreciate. “Your family is so blessed to have such an extraordinary spirit in your home.” “Just think of all the amazing things you’re learning that other families aren’t blessed to learn.” “Think of how your Mini Me and Mini Man are growing up to be such empathetic people.” “You are so lucky to have an angel in your presence every day of your life.” “Your home feels so different. You can tell that a celestial being lives here.”
I get it. I’ve heard (and felt, and appreciated) all of it. All of it! In my head, I know all of the right answers. But it doesn’t change the fact that right now, as the Girl in Charge has just turned 8, and I find myself facing the next 50+ years experiencing the same struggle, but with increased intensity as each year goes by, it’s hard to feel comforted by all the kind, well-meaning comments. I can’t lie, if I was given that choice again, I wouldn’t choose this. I wouldn’t.
I would choose vacationing as a family of 5 without having to leave one parent back at the hotel with the Girl in Charge while the big kids and the other parent go to Disney World. I would choose, “Hey, lets go to a movie,” and we all pile in the car 20 minutes before the show starts and race to the theatre. I would choose My Mini Me and My Mini Man complaining to me that their little sister won’t stop annoying them. I would choose the Girl in Charge begging me to take her to the playground after school. I would choose to have to tell her not to eat so many Goldfish Crackers right before dinner. I would choose reminding her for the 1000th time to practice the piano. I would choose having to tell her to slow down on her bike so she doesn’t crash like last time. I would choose to hear her say, at least once in my life, “I love you, Mommy.”
I would choose freedom. I would choose spontaneity. I would choose normalcy. I would choose to have three children who are able.
Now, please don’t misunderstand me, I’m not arguing the validity of what God told me that day. If He said I chose this, then I must have. And I’m confident there was something then that I understood that I don’t now remember. And I trust that one day I’ll be eternally grateful that I agreed to, and then endured, this overwhelming struggle. But today? Today is not that day. Today, I love the Girl in Charge with more intensity than I could possible put into words. But I still wish things could be different. I still wish with all of my heart that she could be normal. I still wish that September 14, 2011 had not been the day that changed my life forever.
The Girl in Charge 