I knew almost nothing about people with special needs until I had one, a child with a brain malformation, a “special needs” kid. I hate all these terms, special needs, disabled, brain damaged. I like the term “a different kind of perfect.”
My daughter has a rare disease 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 she is not exhausted from therapy 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, when I think “Please can you just stop and be normal, please.” They do not see her when she has screamed for hours or days. They do not see the times when we can just hold ourselves together and we are not strong.
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.
Our daughter has taught us many things. It is important to keep positive and seek for the joy when you can find it, and that can be the only thing keeping your head above the water.
That is why people think we are strong, because we just get on with it. Keep going, just keep going. 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 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 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 beautiful daughter, a different type of perfect child.