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Sunday, December 18, 2011

My Glass Is Half Full...In My Eyes

As a mom of two children with special needs I find that sometimes I feel jealous and envious of other parents. The parents that can go out to eat dinner without a scene or have a huge family dinner filled with laughter. I envy the parent whose two year old speaks and even the baby that smiles back at you when you smile. I envy it because it is something I have missed out on with some of my children. I have four children and they are all different and very special. I love them all and while I do not wish to change them I still find it hard seeing my boys around NT boys their age. I see the differences and it hurts. It is kind of like rubbing pure alcohol on a fresh open wound. I try to pretend that it doesn't but sometimes I find myself watching another child and if the parent says anything I will blurt out,"Enjoy that cause some of us don't have that!"

I don't want to be that parent with resentment built up. I do accept my babies and love them even with their flaws. I think it is normal to want what you don't have and also to not realize how much you do have. This week has been really hard and almost impossible to place into words without a lot of thought. Chucky went to the doctors about the muscle atrophy on Thursday!! It was a really tough day. I knew they were going to do blood work and I had prepped Chucky for that. Actually he loves blood work. Go figure!! He was having a tantrum on the floor because they were not calling him in fast enough! We had to talk to the doctor before drawing the blood. 

She did a full physical and asked many questions. She spoke about the PT and asked what my concerns were. I explained why I had not complied with the genetic testing back in March and she reassured me that no matter what the results are it is not my fault. I did not choose his genetic composition and I guess she is right. Then came the crushing news about what exactly they were considering for my son. I wanted to plug my ears and sing fa la la la laaa. I didn't want to hear the words. I didn't even want to think about it and what was even scarier was that I didn't have much knowledge about it. Muscular Dystrophy...... all I could think was WTF is that. Why, and it isn't fair. She did say though that they have to run tests in order to figure it out or in my mind, Rule It Out!!!! Then she gave us scripts for the blood lab downstairs and off we went.

I was a bit shocked and scared. I was eager to get home and do a ton of research. I needed to know facts. I needed to find a way to rule out my son having this. I needed more answers different possibilities, and I needed them fast. But first, blood work....gotta find the elevator and get downstairs. Chucky was so excited to get his blood drawn. He was begging for them to give him a needle. It was actually kind of humorous. What happened next was a bit shocking even for me.  The lady came out, to a child willingly throwing his arm at her, with 14...yes, 14 vials!!! I was mortified!!! As she started drawing the blood, another nurse came out with two more        tubes and said the doc said to rush this. Wouldn't that make you nervous?? I was very nervous.  

Chucky was a trooper and did wonderful. He barely cried until he had sat there for too long and tried to move and get the needle out. The nurse yelled No don't move and hurt his ears. He cried the rest of the time. I informed her he was autistic and she felt really bad. She said sorry so many times to him. After it was done mommy and daddy needed to have blood drawn too!! My son dropped to the floor and fell asleep. He was so pale and I was very worried. He was ok though and after a half hour we went home.

The next day he had to go back and have two more tubes drawn which was much harder than the first time. He screamed and fought but it didn't help that they couldn't get any blood. They had to dig for a deeper vein. I felt horrible. So, all the blood work is done and now we get to play the waiting game. Of course, I went home and did research and got very deep in sorrow. Sorrow that doesn't need to be. I don't have any answers but he does fit the bill which is very scary. The types he fits into could cause him to be in a wheelchair. I was so crushed, confused and angry. 

After having a few days to think and consider things, I have decided not to drown myself in what ifs and how I will manage. I am going to enjoy the very things that have bugged the hell out of me. I will smile when I see him jumping and pacing in a line. It is OK if he is spinning in front of the TV or walking in circles around me. I am OK with him being under my feet because I realize now that those things are a gift. They may not always be that way and with one single diagnosis, his life may change forever. I can not think about how I will feel because it will be worse for him. So to enjoy these moments is the best I can do to get through the weeks until the test results come back. I am honored to be his mom and I will always be there to help him through whatever trials he has to endure. 



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2 responces:

Charity said...

Oh my dear friend, what a hand you have been dealt in this life. You  are an amazing loving mother and you are not alone. Our children are here to teach us as hard as this journey is there is an ultimate purpose for it. You are stronger than you give yourself credit four. And the doctor is right, it is not your fault. With or without genetic carriers people have children with genetic complications everyday. It's just part of life. You have chosen to embrace your life with courage and love, I have a huge amount of respect for you. Don't let it bring you down, even amongst the trials there are triumphs focus on those. 

Michelle said...

All I can say is, you don't have to worry on things to much. You kids are great and everything will fall in place if you believe. Believe and everything will follow. 

Michelle of Famous Women in Business