Special needs parents are usually ready to hear any news. Most of the time we get horrible news from multiple people, more often than great news. The more severe the conditions the less good news you tend to hear. You learn to take it in stride. You know from the specialist you are seeing most likely what you will be hearing. For neuros – the MRI was not great, the EEG shows increasing seizure activity. From pulmonology you might hear that your child does indeed have sleep apnea and you need another machine. We take these things in stride and almost expect them. It comes with the territory and the endless hours of anticipating the multiple outcomes for any given appointment. You research, you talk to other parents who have been there or are currently dealing with similar situation. You take notes and you compare notes. Its how we make it through the days and the weeks of endless waiting rooms, medical charts and doctors visits.
The one thing that I wasn’t prepared for was the overwhelming ‘typicalness’ of the 18 month checkup. I knew he was getting shots, and I knew I had a list for the doctor of prescriptions that needed to be filled/renewed, paperwork that needed to be completed. But what I never could have prepared for was the beginning of the appointment. I have been through many of these appointments having a daughter who is soon to be 6. Many. I know the paperwork that needs to be filled out, the checklists, the consent forms. I have done it before, even for Superman.
Like every appointment, they handed me a clipboard. I was expecting it to be the insurance form I have to fill out EVERY time. I would assume they would keep a copy on file but apparently not. Instead of the usual paperwork I saw the Texas state consent forms for the shots and a few other pages. As I muddled my way through them, the vaccine form, checked off the usual boxes. Head trauma/brain injury – check. Seizure activity – check. The one surprising one I got to say no to was the blood transfusion. We have officially reached over a year since his last blood transfusion. I was feeling pretty good at that moment.
Then I got to the very last sheet. The 18 month developmental checklist. I read the first paragraph and I could have never prepared myself for what happened next. My eyes literally welled up with tears and I couldn’t control it.
I know my son is behind. I know he doesn’t do things neuro typical children do. I am not blind and I am not under any delusions or denial. I have acceptance. But to see it on paper, to hold those words in my hands. Asking me to answer no to the things he should be doing, then the paper saying if I answered no to any, please ask the doctor to refer your child for a hearing test. Which is ironic because that is the ONE thing he does have, he hears extremely well.
I managed to blink away the tears before any of the other people in the waiting room saw. Because I do this everyday. I don’t fall apart in waiting rooms. Secretly in my car? Of course. In my bathroom? Absolutely! In the waiting room of a pediatrician’s office? Never. They wouldn’t understand.
It’s never happened to me before. I accept my son for everything he is, and for that which he is not. Because that is what gives him his superpowers. If he had everything, he would have nothing to overcome and that act of overcoming will be what builds his strength and character and will show the world the power of miracles.
But today I was simply a mom, faced with the overwhelming reality of what challenges face her child. Being given the golden ruler and in black and white being shown that her child in no way measures up to the statistical norms. These are the days that my heart breaks into a million pieces for the life that he faces. I know he doesn’t know the difference as he has never lived anything but this life, but I feel the pain of those challenges, and the reality of what could have been. And today I stared it down. I answered those questions. I managed not to shed a single tear until tonight as I write this.
People often praise special needs parents for their strength in adversity, their diligence and their insane ability to keep going when everything is stacked against their children. But just know that is usually the face we put on. For lack of a better analogy call it our ‘game face’. But sometimes, when the lights are out, the day is done and the fight is over – there is nothing left but tears. Sometimes tears for joy, many times tears of pain/sadness/anger/fear. Behind that face of strength is usually a parent that needs a hug, or a glance of understanding.
Tonight, I held Superman in my arms after he ate and he snuggled against my chest and grabbed my shirt with his hand, and I looked at his content, sleeping face. All the worries and the fears washed away and so for that I cry tears of joy and content because I know that no matter what tomorrow holds, I will be holding him and together we can all be stronger.
And tomorrow I start an email to a congressperson to let them know that for a child that has stated multiple disabilities and documented brain damage, its just cruel and unusual punishment to mandate that parents even have to look at that form. Just cruel.