Every Thursday, I have the privilege of watching young to old special needs individuals play basketball. Marissa is the youngest one of this bunch. Each Thursday, it seems that a new caregiver or provider sits next to me and we begin to talk about the story of our kid. Most of the individuals are at least ten to twenty years older then Marissa. Tonight, I was sitting next to a lady who has a 28 daughter with CP. She has been on the waiting list to get a waiver since her daughter was 14 years old. All she wants is for her daughter to have day support. She applies for grants to pay for the program and stated that she has had numerous case managers over the years and no consistency in her services. She looked at me and said, "all we do is fight". I took a minute to think about what she was saying. How true that statement is. We fight with the schools to get the best and appropriate services for our kids. We fight with society to accept our children as they are. We fight with doctors to make sure our kids get the proper medical care. We fight with our government to get services. We fight with our kids when they are having a rough day. We fight just to survive in a world that no one seems to understand, but us. We fight to keep our kids alive and our spirits alive to make it through another day.
If you drive by my house, you may see that it looks nice from the outside. The yard is groomed. A UNC garden flag hangs proudly. Flowers bloom in the spring. You might wonder about the family who lives there. But, once you walk through the door you will get a very different idea of what it is like to live in my home. Where every move I make has to be structured. Always have to make sure that we do things in the same order each time, one wrong suggestion, could end in a melt down. There are times that all I want to do is cry because I feel like a failure of a mom. I feel like I am the only one who understands this. Sometimes, I even ask, "why me, Lord". Of course, there are the good times, but unfortunately those days are few and far between. You learn to cherish moments in a very different way then most parents.
I was talking to a parent the other night about her three year old playing with his poop. Not normal three year old behavior. She is frustrated. She feels hopeless. Always planning, always thinking, always trying to do something new that may help her son be better then what any one thought he could be. She is starting to see the differences now between her precious three year old son and the "regular" three year old. I just patted her on the arm, chuckled and said, "its going to get worse". Each milestone that we see a child go through that is age appropriate- we grieve. Each child that we see in public and we wish our child could be like that- we grieve. Sometimes, we mask our tears and other times they flow like a river.
I know that God has put all of these circumstances in my way, so that I can help cultivate change. I have the passion, the intellectual ability and knowledge of the system to make my voice heard. I have hope that I can climb this mountain and make things better for our kids that struggle with special needs.
So, I urge you that if you are out in public and you see a caregiver with a special needs child, make sure you say something nice to them. Tell them they are doing a good job. Give them a smile or a pat on the back. It goes a long way in giving them the strength and energy to face the day. Because in the end....we fight... we grieve, but we never lose hope.