Diagnosis and Acceptance
When we moved into our “new house” 15 years ago. We had less than zero desire to befriend the new neighbors. When you want to hear God laugh… It turns out that particular plan was side splitting to God! Dan, Michele, Danny and Kristine have become far more like family than neighbors. In a time when I was learning to manage the anxieties of a small child, Michele taught me to let go of the little things and that being present was what really mattered not how much of the house was cleaned how often. On the other hand, Dan and Mark *caused* quite a bit of my anxiety. And Danny and Kristine have turned out to be half mine, I swear! We’ve been through so much together. Michele was the first to suggest my pregnancy with my youngest and the first person I told. Together we’ve lost and supported each other through the loss of three fathers and my uncle who was like a dad to me. We’ve raised kids and cattle together—which is exactly as insane as it sounds.
We were also lucky enough to get to know, and more importantly, to love their families as well. The whole lot of them! Grandmas Carol and Anita Aunt Vikki, Uncle Lar, Aunt Kim and Uncle Jim! They account for so much of the Davises tribe it can be attributed to nothing less than an absolute blessing. Dan’s brother Jim and his wife Kim have two sons, Nathan and Mathew. Nathan and Danny are the same-ish age and Kristine and Mathew are the same-ish age. Mathew has Cerebral Palsy and is so smart and so fun and has taught me so much about special needs children and parents than I’ll ever be able to explain.
When Sass (my youngest) was two, she climbed on everything, EVERYTHING! She was driving me nuts one evening and Kim pulled me aside and gently explained what she’d give for Mathew to be driving her nuts. It completely shifted my perspective. These trying two’s left me exhausted but grateful. Always grateful.
Here is the beginning of Mathew’s story in the words of the woman who shows more dedication than anyone I’ve ever known. The woman who is determined to give her child the very best life has to offer and has taught me to appreciate motherhood in a way that only a special needs mom can.
From Kim: On November 7 2000 we welcomed our second baby boy. He appeared to be perfect and everything was typical at this point. Things started out as you would expect with a newborn but then Mathew became extremely fussy. He cried all the time and he never slept. Definitely not a fun maternity leave this go around (Kim is a registered nurse). Initially we assumed it was colic and kept giving him colic drops, but to no avail.
At almost 4 months old we were admitted for a reflux work up. He was prescribed new medications but we brought home a still miserable baby. We were then referred to Pittsburgh Childrens hospital for further management and received another round of new medications and increases. Mathew eventually started to feel more comfortable and we all settled in. Not too long after that though, I began to notice he had very poor head control and wasn’t grasping for things as babies do. So I called back to Pittsburgh and his doctor there sent us to a developmental specialist and an MRI was ordered.
BOOM! There it was. I received the phone call while I was at work giving me the results of the MRI. She used all kinds of words I hadn’t ever heard of at that point and I all I could think was ‘what does this all mean.’ Then it all started to sink in. It was like being hit by a truck.
Now I always say “never think it can’t happen to you.” It can and it does happen to anyone. I mean, I thought I did all the right things: I ate well, I never smoked and I never ever touched a drug. Not only that but I was healthy myself. I remember, in the past, looking at children with disabilities and thinking that would never be me and feeling sorry for them. Well that was a stupid thought. In that early time, I used to think well that this is my punishment for having a pretty easy life. I have since realized that he is a true blessing in our lives and has given us more joy than we could have ever imagined.
When I first heard the words “Cerebral Palsy” I was devastated. We had no idea how affected Mathew would be or what his limitations would be in the future, the unknown is *very* hard. Receiving that first wheelchair when he was seven was another slap in the face– making it painfully real. Fast forward: we don’t even see the wheelchair; we just see Mathew.
Over the years, we had many appointments, tests, and surgeries it could have overwhelmed anyone. We were once told by a physician, that Mathew wouldn’t amount to much and that the stress of care giving would cause marital problems. He felt we should start marriage counseling. Boy did we prove him wrong! Jim and I have been married for 24 years and are still committed, loving partners throughout every hurdle life has given us.
We’ve never found out the true cause of his developmental brain abnormalities, just that it happened in utero during brain development. We began to accept this and didn’t need to know why, it didn’t matter. This is where we are.
I joined a support group, which was a blessing to me and what I really needed. The very best thing is to talk to other families who have similar situations so you don’t feel so alone. You find out a lot of useful information that professionals do not tell you. There is a poem “Welcome to Holland” by Emily Kingsley that describes exactly the experience of raising a child with a disability. I’ve discovered a whole new community with many beautiful people. Mathew has given us many friends that we would have never had. These families all know what we are going through and are so supportive. We no longer grieve what he could have been or what he can’t do. Don’t get me wrong there are times that is still there, but we have accepted Mathew for who he is and couldn’t imagine him any other way. He has taught us to slow down, not take anything for granted, celebrate the small things and keep smiling. Also, to always presume competence. While Mathew is nonverbal, we have learned though, that he is very smart. Once you around him enough you will figure that out. I wouldn’t say it has been easy, it hasn’t. It is very challenging, but we’re thankful for friends, family and our community for helping us through.
