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. 

Thank you for being you. 

And thank you for being mine.

•