It’s hard to believe that eight years ago you were born. I’ll never forget that day. I’m sure eight years feels like a really long time but it feels like a blink of an eye for me. I write this letter to you today knowing that you won’t read it, at least not anytime soon.
I wanted to write to you to say that I am sorry.
When I first found out that your sister Caroline had a disability, I read a lot of articles online written by parents and experts. I distinctly remember one of the articles recommending that parents of a child with a disability should have another child. That may seem a little crass to some people, but I understood what the author meant. Of course, when I had you I was just beginning to feel something in my gut that told me that something was going on with Caro. The timing wasn’t great because I had no idea what hit me by having a toddler and an infant, let alone a toddler with behavior problems and an infant.
Your first days and years on this planet were equally beautiful and terrible for me. I took so much joy in watching you grow and develop, in some ways, because you were very different from your sister. Caro took her time to walk and become active. She was always very passive in meeting developmental milestones. I relished, and took a great deal of pride, in watching you as you so quickly learned to sit up, stand, walk and then run, in less than a year of life. Yet, those fast-paced moments of your development were clouded with worry about Caroline and why she wasn’t developing at a rate that experts would call ‘normal’. While you were sitting up tripod, tossing a ball, making eye contact, and taking your first steps, Caroline would tantrum for hours on end and for so long that it would make her throw up and then completely forget that it even happened to her, despite being exhausted with herself. While all of your pieces were coming together to create the puzzle that is you, I was encouraged by teachers and medical experts to determine what pieces of Caroline’s puzzle were missing.
The doctors visits, the tests, even a surgery; it took years to piece everything together and meanwhile you were with me, in tow, for just about all of it. I’d pack your diaper bag, strap you into the car seat and off you and I would go with Caro, on 2-3 hour long car trips to hospitals around the state. If I had the mental and physical stamina, I tried to squeeze in a zoo or playground visit to give both you and your sister a break from being sequestered in a white-walled room with nothing but one of those tables with the weird paper on it that crinkled and ripped when you climbed up-and-down on it while waiting, waiting, waiting.
You were too young then to know that you were being tacked on to whatever was the particular focus of Caroline at that moment. In spite of my parenting, you started to develop an amazing personality. By the time you were 4, you had a distinct voice of your own and you were not afraid to use it. I’ll never forget the day that we were playing with friends and, while sledding, Caro got into an argument with one of the other children. I watched as you pulled the other child aside and whispered to her that your sister was missing a body part called a chromosome, a body part that you can’t see because it’s inside her body, and that body part makes her different. You asked the friend to give your sister a break and promised that she would be better in a few minutes. I was amazed at your ability to articulate something so complicated and at your empathy for your sister.
However, as the years have gone by, you continue to observe and also use your voice to share how you feel. You have felt frustrated. You have felt like your sister gets everyone’s attention all of the time. You have felt embarrassed by your sister’s behavior. You have felt overshadowed. I have done my best to balance out these feelings. Your dad and I took you away on a trip just for you. I’m trying to find more time in our busy lives to do things that are just for you, since it so often seems like we’re either doing things as a family or one parent is with both children while the other parent works. I’m trying to help you find things that are just for you that don’t include Caro. I’m trying to get you to understand that you have a unique and special opportunity, just like your dad and I have, being a family member of a child with special needs. But, you’re not an adult, and you don’t have our perspective, and I cannot tell you how you feel now or will ever feel about having a sister with a disability.
After reading the book Wonder, and learning that a movie had been made about a boy with a disability and his family, I was excited to take all of you to the movie theater to see it. I thought: Hey, this isn’t exactly our story but maybe something will resonate with everyone else, because it definitely resonates with me. The boy has an older sister, who struggles with her brother, yet continues to be supportive of him despite her own frustrations. As we ate our popcorn and watched the big screen, I looked over at you and I watched your face and your expressions. I thought I would see connection and understanding but instead I saw anger and your body stiffened. After the movie your body continued to be closed off and, as we walked out of the theater, you turned and looked at me point blank and said, “I am not that sister. That is not me. That is not us.” You were mad at me for trying to make that connection. I learned that day that you will come to your own conclusions in your own time and that your conclusions, like my own, will shift and change as we all grow as people and as a family.
Subliminally, one of the reasons I wanted to have two children was because I have always desired a close relationship with a sibling. It’s no secret that my brother and I are not best friends and over the years, we have learned to tolerate one another. I’ve seen my friends have really special and unique relationships with their siblings and selfishly, I thought maybe I could create that for my children if I didn’t have it for myself.
Yet, just like my mom was unable to control my relationship with my brother, like all things with kids, I cannot control your relationship with Caroline or how it will develop over the years.
So I just want to say I’m sorry that I’ve sometimes pushed you to take on the role that you aren’t ready for, nor may ever want. I respect you for whatever path you choose with her.
I also want to take this opportunity to say thank you. I’ve noticed, over the years, that maybe you’re not going to be Caroline’s keeper like I hoped. yet I’ve noticed that you have taken on the role as my keeper. You are always watching, observing, and listening. You know when I’m sad and when I’m happy. You know how to cheer me up and you always know when to give me the perfect compliment. I am in awe of your empathy and intuition when it comes to me. You make me coupon books offering to help me with chores around the house, you give me a back rub after a long day, and you do little things just to help me out. You told me, last week, that you wanted to make pancakes at night so that the morning would be easier since your dad was away and I was alone.
In a world when I feel like I am the scaffolding holding many things together, often going unnoticed despite my supporting role in so many lives, you see me. In a few short years your mind and emotions will force you to turn your attention inward and you will focus on yourself most of the time, and may even resent me at times, and I will learn to be OK with this. I will hope that, after your prefrontal cortex closes up and your hormones even out, you and I will find our groove yet again.
Char, you may not know it because life is really hectic and yes, Caroline requires a lot of attention and I work a lot but, just like you see me, I see you and you make me so proud. You are my mini scaffolding, helping hold me up while you learn to hold yourself up. Thank you.