Most parents rarely have the need to have their child assessed, but for the special needs mom assessments become a regular part of the rotating specialist/doctor regimen. We endure assessments in therapy (often times over and over for each of the different kinds of therapy), at the pediatrician’s office and usually with a follow-up clinic or developmental pediatrician, as well. In my son Bryce’s case, that can easily amount to a dozen assessments per year.
There was a time this past fall that we hit an unlucky scheduling patch and had three assessments in a single week. Sometimes they aren’t bad, especially if it’s being conducted by a therapist or other regular care giver who you’ve been working with for awhile. But, more times than not they seem to be awful, grueling appointments that we have to talk ourselves into not canceling, drag our already knowing selves to and then endure so that we can be given a grim medical report that confirms our worst fears.
As if that weren’t all bad enough, we then have to gather up our precious little one, with a forced smile on our face while inside we’re falling apart, so we can go home and cope with the emotional turmoil this all creates. Of course, like anything, some days it’s easier and some moms are better at this. In my case, though, I always feel like I want them to give it to me straight; I want to be as knowledgeable and realistic about Bryce’s progress and development as possible so that I can prepare for the battle of trying to help him catch up.
So I end up going home with one or more medical determinations that in reality have very little to do with who my son is or who he will someday be. Emotionally, it feels like I’m losing. Like despite all of the therapy, the research, the worrying and the hard work that goes into raising a special needs child – I’m failing him.
You see, my son Bryce was born at 24 weeks gestation in our home. My husband and I gave him CPR until EMS arrived and took over but we will never know how long his brain went without proper oxygen. And a lack of oxygen to the brain kills those cells forever. Bryce later developed grade III and IV brain bleeds, struggled with proper oxygenation for weeks – even while on a ventilator – and endured multiple, rigorous rounds of steroids, known to cause long term developmental delays, in order to survive.
Today Bryce is almost three-years-old and testing on most levels between that of a 12 and 18 month child. He doesn’t talk and has only recently begun walking some with the use of a pediatric posterior walker. I wouldn’t change any of the life-saving decisions we made, nor would I trade him for anything in the world. That doesn’t mean that I don’t still want the best and most for him. No matter what the prognosis or how dire the circumstances, at the end of the day all parents simply want the best for their children.
We want them to be able to enjoy life, to love and be loved and sometimes we even let ourselves dream of them growing out of the worst of their impairments to one day live independent, fulfilling lives. So, how do we balance our desires with the reality of disappointing assessments?
I don’t have the answers but I know that I’ve found, for me, I have to allow myself to grieve. Some days I struggle to deal with wanting my son to say he loves me or to walk independently, but other days his sweet smile seems enough to fulfill me forever. I’ve learned that it’s impossible to be okay every day, but if I allow myself my pits and valleys then my peaks are so much higher. Sometimes just being honest with myself, letting myself be frustrated or disappointed allows me to accept it for what it is and move on. Ultimately, this special needs mom journey is a long, long, long one – so for me, just figuring out a way to get from one day to the next can seem like a God-send.