I think the hardest part about being a Special Needs parent is not something that you can write down in words or explain to the fullest extent. You try to find the words, yet it doesn’t come out right. All the feelings and emotions don’t sound as deep and as painful. When you begin to read what you wrote down or what you have spoken, it doesn’t seem as bad. But in a sense it truly is as bad or worse.
This week has been full of emotions. Some days, weeks, months … are better than others and this week just wasn’t one of them.
We went to the Pediatrician on Wednesday because Aislin was falling all over the place and she was also running into things like poles. When we got to the hospital all I could think is what is next? What more do we have to endure, more importantly how much more does she need to endure? Why is it that every time we are having a good day or she has learned something new does she have to have a setback? What does all of this mean for my beautiful little girl? Is she going to be ok? Am I strong enough to deal with what is about to be thrown at me? Am I going to like what is being thrown at me?
Talking to the pediatrician, I felt as though they really do not know what is going on with my kid. It’s always the same… They never give us an answer. It is so frustrating and disheartening. Is my daughter so unique that they have never seen anything like this? Are we overreacting?
We eventually were told after a hour and a half at the hospital that they would be putting in a referral to a neurologist and A may need a MRI. They believe it may have something to do with her Central Nervous System. Great. Just another thing to worry about as I am sitting up late at night wondering if she is going to ok. If she is going to live a long, healthy, beautiful life that her father and I always wanted for her.
You see the thing is, when you have a special needs kid and you have some answers but not all, your head goes to this dangerous place. This place where you are ashamed that you even thought of it. A place that is so dark and dreary that once you snap out of it, you think to yourself… I can’t think like this, I have to be strong for her… for us. I can’t let the what ifs ruin my time with her. I can’t let the what ifs ruin my life. But they are still there… and they are still so very real.
The other part of all of this is the feeling of being alone through all this. Let me reiterate that, I am not technically alone. My husband is wonderful. He gives me strength when I break down. He sends me texts just to tell me he loves me and that he is thinking of me. He lets me know that we are in this together. Without him, I don’t know if I could do this with anyone else. And yes, I have some fantastic friends that are always a lending ear when I am down in the dumps.
Alone… alone to me means no one truly understands unless they have actually been through it. No one gets how painful it is to watch your kid struggle in every day things that come so easy to most. No one understands your two year old falling and looking up at you with tears in her eyes like why can’t I walk right? No one understands holding your child down so that they can get blood samples so you can get genetic testing done. No one understands the countless doctor appointments and EI appointments. No one gets that there seems to be always someone in my house trying to help her. No one understands that I can’t communicate with her, that I never know when she is hungry, thirsty, sad, scared, etc… No one knows the real fear of losing their kid. No one gets how scary it is to be told that there may be something wrong with her. Like seriously wrong. They can empathize and for the people in my life that do, I am beyond grateful. For the people that actually sit and listen to me and let me cry, thank you.
For the others that I thought would be my biggest cheerleader and have not stepped up to the plate, I am just disappointed in you. Especially the people that really need to be there. Not physically but mentally. The people that are so wrapped up in their own minuscule worlds that they fail to hear me. They fail to be there for me in the most trying time of my life.
Being a Special Needs parent has taught me so much in the last two years. It has given me emotions and feelings that I never though possible.
It has also given me a sense of people and who is real and who isn’t. Who really cares and who really could care less. Who will be there for me when I am at the lowest of lows and who won’t be.
Being a Special Needs parent also has taught me that I have to be patient. Not because I want to but because I have to. Nothing comes fast or easy and everything is a waiting game and a guessing game. It has taught me that I can’t do anything about the situation.
I can be her biggest advocate and fight for her, but I can’t physically force tests to come back sooner. I can’t force doctor appointments to happen quicker. I can’t force answers that are just not there. I have no control in any of that and for someone like me that is torture. I have always been in control, always have had most things together. This unfortunately is not something I can control or maybe even fix. I can’t just make it magically become better. I have to just wait and try to understand why it is happening to us. Why it is happening to her.
So we will wait. We will try to make the best of the situation. We will pick her off the floor when she falls and hug the crap out of her telling her she is going to be ok.
Because that’s all we can do.