My child is disabled. She’s only two years old, and she’s severely disabled. I can’t express into words how hard it is to say that sentence. When we had Madison’s first MRI done post meningitis and saw the damage that awful disease did to her brain, we knew then and there she would never live a normal life. It’s some of the worst news you can receive as a parent. The brand new baby you had prayed for your whole life; the baby that passed every test in the book during pregnancy; the baby that was born healthy; is now not and never will be. Every hope and dream we had, stolen. Life would never be the same.
But at the time, those fears almost didn’t matter. What mattered was her survival. I remember so vividly sitting in the hospital praying every minute of every day that Madison would make it. I knew life was going to be very hard with her, but I didn’t care. The thought of leaving the hospital without her was not an option. And so I begged God to let her stay and promised I would do whatever I could to make her life okay. And that’s where we are.
We started her in therapy right away, and have added more as time has passed. We’ve bought lots of toys and props to help make things easier for her. And finally, we’ve started getting adaptive equipment! Two weeks ago we picked up her very first piece; a wheelchair. Well, it’s sort of a stroller/wheelchair/seat all in one, but regardless had me quite emotional.
Madison sits okay in her regular stroller, but she really needs the additional support for sitting at home and during meals. The thing is, once we start using this outside of the home it will be the first time it’s very apparent to others that she is disabled. It’s an overwhelming feeling and yet, something I know is in her best interest. I know she needs the support, and eventually will be too big for her stroller and even advance from this seat to a more typical wheelchair, but it’s hard to mentally prepare yourself for that as a parent.
Right now, at least at first glance, most bystanders probably don’t even recognize that Madison is disabled. It’s not until we hold her and you see that she doesn’t make eye contact, or move her extremities too much, or hold herself up for that matter that you might think something is off. But once she’s out and about in a large piece of equipment, it will be apparent from the start.
A common premise thrown around in the special needs world is that in order to embrace and accept this life we’ve been thrown into, we need to grieve the loss of the one we thought we’d have. I think this idea is completely accurate. I absolutely agree that I need to grieve the loss of the life I thought I would be living to better embrace all of the complexities and unknown of this one. But two years in, and I’m still not there. I wish I was. But I’m not. It’s really really hard to accept that your life will never be easy. It will never be “normal.” My child will never do a lot of things. I’ll watch her have seizures every single day likely for life. I’ll watch her struggle. Hospital stays will be common and life threatening. I won’t hear her call me mama. I’ll watch her be looked at, maybe even bullied or made fun of. My future children will grow up around things far more heavy than they should ever have to witness. But this is my reality.
When we have a slew of good days I get really close to letting go of the dream of my life, and accepting the one I’m in. But on bad days I cry and curse this world for hurting my baby so, and it takes me two steps back. Seeing her in her first wheelchair was hard, but also wonderful. She sat so tall. She was eye level with me. I watched her sit comfortably and correctly for the first time. And now we’ll hopefully see her tone improve as well. As parents we always want what’s best for our kids. We want them to succeed. We want to give them all the tools they need to be their best selves. And for Madison, these tools are very different. She needs tools for the most basic of human function, but those tools will hopefully give her a better quality of life.
It’s hard to accept her fate, but I promised God in that hospital room 2 years ago that I would do whatever I could if I could keep her earthside with me. And so that’s what I’m doing. And while this wheelchair may seem like not such a big deal, to me it’s a huge step in the right direction for her development. We’ve faced a lot of obstacles with Madison, and we have a lot more to go. Every day is an obstacle in some way or another, but we keep on moving forward the best we can.
I can’t wait to see how adaptive equipment betters Madison’s life. We also ordered a stander for her, which I’m super excited for, but unfortunately it was denied and we’re having to appeal. (You wouldn’t believe the amount of insurance hell medical parents go through!) So here’s hoping we can get that taken care of and continue to provide Madison with everything she needs. Here’s also hoping more places become accessible for people like her! And most of all, here’s hoping we all raise our children to be kind to those that are different. Using adaptive equipment is gonna take some getting used to, but I will say, the fact that Madison looks so damn cute in it, certainly helps to make things easier! 😉
November 2, 2019
You guys are amazing parents!!!!