The Grief of a Special Needs Parent
Heather McCain
It's so early that it's still dark outside. My husband wakes our son up and lifts him over the rail of his bed. He begins to change his diaper while I gather his outfit and medication for the day. We then feed him breakfast, and let him practice eating finger foods. Then we brush his teeth, clean his face, and dress him.
My husband then begins to walk him to the car, but my son decides he doesn't feel like walking and plops on the ground, refusing to budge. So, my husband lifts him from the ground, carries him to the car, and straps him into his carseat. I double check that his stroller is in the trunk and then run back inside because I realize I forgot the bag with his diapers, change of clothes, sippy cup, and toys.
My husband then begins to walk him to the car, but my son decides he doesn't feel like walking and plops on the ground, refusing to budge. So, my husband lifts him from the ground, carries him to the car, and straps him into his carseat. I double check that his stroller is in the trunk and then run back inside because I realize I forgot the bag with his diapers, change of clothes, sippy cup, and toys.
You probably think I'm talking about my infant or toddler by now, but I'm not. My son will be fourteen in just a few months. Getting him up and ready for the day has been a daily routine since he was born. My son depends on my husband and I for nearly every need. Since he is non verbal, we have to be very aware of his cues that he needs or wants something - facial expressions or actions that we have learned mean specific things.
The other day, I got together with a friend who's son is just a few days older than mine. Her son is outgrowing his parents, and he is a football player. I enjoyed hearing about what he is up to, and was so proud to hear about his accomplishments. That night as I diapered my son and then wrapped my arms around his tiny frame I couldn't help wondering, though. Would our boys have had sleepovers and been great friends? Would my son have played football, or any sport? He loves balls of all kinds, maybe he would have played basketball, or baseball...
The other day, I got together with a friend who's son is just a few days older than mine. Her son is outgrowing his parents, and he is a football player. I enjoyed hearing about what he is up to, and was so proud to hear about his accomplishments. That night as I diapered my son and then wrapped my arms around his tiny frame I couldn't help wondering, though. Would our boys have had sleepovers and been great friends? Would my son have played football, or any sport? He loves balls of all kinds, maybe he would have played basketball, or baseball...
Then, I pull myself out of it. I wonder sometimes, but ultimately I always know that he is exactly who he is supposed to be. There is no other version of my son - there is only the child I once imagined while he was doing flips inside of my belly - the healthy version - and the child that IS. Because, of course we don't imagine our children being born severely disabled. We don't even want to think about our child suffering, much less imagine it.
This is the grief of a special needs parent - the quickly passing moments when something, or nothing, makes us wonder, what if? What if my child could talk? What if my child could walk? Most heartbreakingly, for some, what if my child had lived?
And that's okay. Its alright to wonder. It's alright to grieve. Because once that moment passes, we look at our child, just as they are, and wonder how in the world we got lucky enough to be their parent. That is the joy of a special needs parent.
This is the grief of a special needs parent - the quickly passing moments when something, or nothing, makes us wonder, what if? What if my child could talk? What if my child could walk? Most heartbreakingly, for some, what if my child had lived?
And that's okay. Its alright to wonder. It's alright to grieve. Because once that moment passes, we look at our child, just as they are, and wonder how in the world we got lucky enough to be their parent. That is the joy of a special needs parent.
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