A birthday wish for the sibling of a child with special needs
A parent pays tribute to her neurotypical daughter on her 12th birthday
As a parent of a child with special needs as well as one who’s neurotypical, I have a lot to juggle and balance. Our firstborn, Cammy, has Rett syndrome. She was 20 months old when she was diagnosed, and at the time I was eight months pregnant with our second daughter, Ryan. I knew then that having two profoundly different children would prompt conflicting feelings.
Ryan hit every milestone early. Most were milestones Cammy never reached. Celebrating those achievements alongside Cammy’s situation was gut-wrenching. Yet both daughters were siblings to each other. Ryan attended all of Cammy’s therapies, and Cammy attended all of Ryan’s sporting events. Ryan went to all of her sister’s medical appointments, while Cammy went to all of Ryan’s theater performances.
Ryan turns 12 this week. As I reflect on these years with her, my feelings are all over the map. Ryan had a laid-back disposition from birth, as if she’d felt all of the stress in utero and wanted to be independent as soon as she could, mature so as not to cause her parents additional pressure, and silly so she could provide comic relief in our complex world.
Birthday wishes
The following are some thoughts I’d like to share with Ryan for her birthday:
As submerged in the special needs world as I am, there are things I’ll never be able to understand about your life, such as what it’s like to be the sibling of a child who requires 24/7 care. While I wonder about your life so far, I have wishes and hopes for you.
I wish that you, as a sibling of a child with special needs, didn’t have to grow up so fast. I wish you didn’t have to attend all of those therapies and appointments. I wish you didn’t need to learn lifesaving emergency responses. I wish you didn’t have to witness how fragile life is on a daily basis.
I wish you didn’t know as many medical terms and acronyms as you do. I wish you didn’t have to simply accept the amount of time and attention your sibling requires. I wish you didn’t have to see all of the machines in your sibling’s room. I wish you didn’t feel guilt for being the neurologically typical child. I wish I could take away all of your pain.
I hope you know that you saved my life. I hope you know that your sibling thinks the world of you. I hope you know that your sibling is so incredibly proud of you, for being a kind human and for all that you do.
I hope you know that we see you, we hear you, and we love you. I hope you know that much of your love, compassion, and kind heart comes from living with your sibling.
Happy 12th birthday, Ryan. You’re loved more than I could ever express.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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