The other day at work, when there was a lull in the phone calls of the health care call center I work for, a co-worker and I began to discuss being a parent of a child with special needs who may need care after you’re no longer able to give it. She has a relative with a child with Down Syndrome and that child’s mother is often asked about this, as if it’s not keeping her up at night already. Kids with birth defects like Congenital Heart Disease and who are affected by genetic conditions like Down Syndrome are living longer and longer (thank goodness). It is our hope that Dolly will live a very long life. There may be points though when she needs to stay in the hospital, or have someone in her home helping her as she recovers from yet another surgery.
I worry about who will do this when I’m too old. People ask me all the time about this scenario in relation to Mighty. Wrong kid. He likely won’t need help at all. Give that boy a step stool and he can conquer the world. There is no reason to think he will need someone to care for him. In fact, someday, he will likely be slightly hurt that people ever thought that. He will probably go on to have a career, a family and a completely independent existence. I will feel the same pain and joy that every parent feels watching their child become independent. Had this not been the case though, we would have still adopted him. Even if he had needed us for a lifetime, he would still be ours.
We adopted Dolly knowing her future was uncertain. Often people will remark how lucky she is to have all these siblings who will be her village when I can’t be. That’s a double edged sword for me. I am thankful for her village, but as a mom, I feel guilty that I made that choice for the village. I will sometimes look at Dolly and think ‘what I’ve done here isn’t fair’ and ‘how could I ask this of them?’ in relation to her future.
On Friday, as I sat in the call center yet again, FPD texted me these photos.
A fussy three-year-old sister who refused to take a nap and a sister who fell asleep next to her in the book corner after reading. I thought back to the conversation I had had in that call center just a few days prior, and I realized that they have made the choice for themselves. They make it every day. She needs them, and there they are.
I imagine that it will always be like that, just naturally. My siblings and I are geographically close, but at different spots in life. Emotional closeness with them isn’t what it is in this house right now amongst my children. Life changes. Relationships ebb and flow. But if I needed them, if my life depended on it, I like to think they would help. I know there isn’t anything I wouldn’t do for them if they needed it. Dolly has even more people than I do who can help, usually without even being asked. A burden? Maybe sometimes. But the very best kind of burdens. The kind we all carry because we choose to, because that’s the very definition of family.
–FullPlateMom, who knows the kids will be alright, simply because they have each other.