I have a child with special needs. I am that guy; we are that family. The ones you see at the park and you think, “I wonder what is wrong with that kid.” That is us.
I knew nothing about people with special needs until I had one, a child with brain injuries, a kid with “special needs.”
I hate all these terms: special needs, disabled, brain damaged. All these terms seem like dirty labels, and the words fall out of my mouth like chewing on dry sand. It seems stupid that we have to label anything that is different with a term deemed politically correct, yet each term is nothing but another way to let people know my daughter is “different.”
I like the term “a different kind of perfect.” My daughter has cerebral palsy and she is a different type of perfect.
People tell us we are amazing for what we do for our daughter. They say we are strong and she came to the right place. They say these things when we catch up with friends or family, usually on a day when we are having a good day. That is the only reason we left the house (could leave the house).
They see her when she is ok, when the pain is under control and she is happy and smiling. When she is like this we have a moment to catch our breath, be normal.
What they do not see is the times when I am not strong, when it is all too much and I want to scream at her to stop: “Please can you just stop and be normal, please.”
They do not see her when she has screamed for hours, days, or sometimes weeks. They do not see the times when we can just hold ourselves together and we are not strong. I am tired, I am having a bad patch, and I am unsure if I want to scream, get drunk, or most likely just pull myself together and get on with it.
That is why people think we are strong, because we just get on with it; we have no other choice. Keep going, just keep going. I have no time for self-pity and I do not have the luxury of having time out. I have no choice but to take a deep breath and keep going.
I wonder if they notice how we have changed. Do they see that behind our eyes there is a deep sorrow? A sorrow that has been there so long it is impossible to comprehend being the people we once were. Sometimes it feels like the light inside us has gone and we just stumble from one day to the next waiting to see what type of day awaits us.
I worry about her, I worry about my partner and I worry about me. How long can we do this, is this forever? How can people do what we do and not go insane? Years and years facing the impossible and fighting to get through today knowing the same awaits tomorrow.
We cling to the good moments as much as we can. These moments are sometimes so fleeting and rare but when we have them we see a glimpse of what could or should have been. When she smiles or laughs, when we can open the windows in our house on a hot day.
On bad days the screams are so loud we are scared the neighbors will hear. No one understands the pain and the sorrow we have for our children; they will never understand what challenges we face everyday.
We are not strong or awesome, we are just people who have to do whatever it takes to get through today. We yell, we say awful things in whispers or under our breath, too scared to say them out loud. Moments when we just wish our kids were normal and we are not those people with the kid with special needs.
I try to forget she is different. At home, in our own space it is easy to believe this. As soon as we venture out past our gate these illusions are shattered. Every time we see other kids, other families doing normal things, a little part of me aches and I wish that we were not the ones with a child with special needs.
If I was strong, I would not have bad days. If I was strong, I could deal with the emotions in my life. I don’t. I bury them and pretend they are not there. I am not amazing, I am grumpy, I am tired, I am scraping through one day to the next. I am just a person that became the parent to a different type of perfect child and sometimes I wish I wasn’t.
Sometimes I wish things were different, that my life was how it was supposed to be (or is this how it is supposed to be for me?). People say God has a plan and he never gives you anything you are not strong enough to deal with. If there is a God, I want to talk to him as I have a few things to tell him about his plan.
I wonder what today will bring. Will we have a good day? I hope we have a good day.
One good day can carry me through a week of bad days. As long as we have a good day I can regather myself, take a deep breath and start again. Who knows what we will face today, tomorrow or forever. Only time will tell.
Our daughter has taught us many things. It is important to keep positive and seek for the joy when you can find it, as that can be the only thing keeping your head above the water.
I am that guy at the park with the daughter with special needs. I am the parent to a beautiful daughter who is a different type of perfect.