Category Archives: HIE
True Life: I have a Disabled Child
March is National Disability Month as well as National Cerebral Palsy Awareness month with Cerebral Palsy Awareness day being March 25. A few weeks ago the reality finally set in that I have a disabled child. Super Mighty Max is a year and a half old (18 months old). The reality of him making progress to be a “normal or typical” child has finally set in. From hospital stays, choosing therapy services, going through the process of getting granted Medicaid and disability, to now going through the interview process for having an in home nurse. This process has not been easy nor fun, but I have finally realized Super Mighty Max is atypical. Everyone has a grieving process they go through in their mind about the expectation of their children. I, like you, if you have children expect your child to do great things. What we expect them to do, be like, have, grow, and learn ultimately no one expects to take care of their children for life. I have finally faced the reality that I have a disabled child.
I know you are thinking like really, Erica? You are just getting IT? But, you have been writing about Super Mighty Max for months and have been transparent about this process. You started a blog and have written about your thoughts here and here. I know. I know. I really do know. I like to think I’m optimistic (although pessimism sets in sometimes). I think all the while in the back of my mind I have been waiting, hoping, praying that Super Mighty Max would wake up and change just like that. That he would grow out of this diagnosis called Spastic Quadriplegic Cerebral Palsy. That he would start doing those things that kids his age do. That God would do something miraculous and he would be a bodacious into everything toddler.
But the Good News is (as my husband says often in his sermons), I have a Disabled Child.
Cognitively Super Mighty Max is a 18 month old. He cries when he wants attention. Loves being held and sleeping under you in your bed. Loves watching TV, but sometimes dislikes therapy or play time. But physically he is more of a 3-6 month old if I’m honest with myself. There are so many things I wish he could do right now. How much those things would make life easier. But then I digress and remember that its not my fault. That God made Super Mighty Max in his image and he has purpose on this earth no matter his ability.
I saw a post on Instagram that stated if you “Put a Go in from of DISABLED. It Spells: God is Abled.” See the picture is below.
God is abled. I know what he can do. I have prayed that God uses Super Mighty Max as a vessel to others, and that his disability would be a testimony.
Stay Super, Make Mighty Moves, and Be Blessed!
Developmental Milestones and 3 Reasons Why They Don’t Matter!
Now that Max is 1 year old (14 months to be exact) I constantly receive the same developmental questions from acquaintances, friends, and even some family members who may or may not know that Max had a brain injury at birth. His brain injury has lead to a cerebral palsy diagnosis which effects and delays his gross and fine motor skills for all four limbs of his body. They ask questions like “is he crawling?” Or “is he walking” or “how is his appetite?” Or even “is he saying mom, dad, yes or no?” I always answer back stating what he does rather than focusing on what he doesn’t do, but can’t help to think why do these developmental milestones matter? Will he not be a child because he does not do these things? Would I love him less because he is not saying mama? What if there’s not just one path? What if there’s not just one set of milestones? There are many, many paths on the road to adulthood, and Max is taking the road less traveled. It’s a road with bumpier, less familiar milestones, but it’s still a road.