December 29, 2013

The Unique Grief of Special Needs Parents

So a friend of mine shared a blog with this title. You can find it HERE.  I read it and realized that while I go through a lot of the things she describes in this and my life reflects a lot of this. But at the same time I don't even have a clue what she is going through. But I have a lot of respect for families that live this life, and especially single parents with a special needs child.

While I am not a single parent. I am currently going it alone while Papa Bear is deployed. So I am experiencing the single parent life a little. The hardest part for me lately is not getting a break at all t re-charge my batteries so that I can be the best Mama I can be. I do not have family and friends nearby that can help. So it is a struggle sometimes when all I want to do is hide and cry.

My little man is high maintenance. He is not only a two year old with energy, but a hyper active Energizer bear two year old. This kid never slows down. And I mean NEVER. He is kind of like a bouncy ball that bounces off the walls. It is tiring keeping up with him. And then add all his Dr. appointments, speech therapy, and OT therapy, his home visits to see how he is, his testing from the schools is really exhausting.  Then to top off the exhaustion keeping up with his feedings with the g-tube. Measuring and mixing the formula, and medicine, and making sure the numbers are punched in correctly into the machine. wrestling with the bear to hook him up to the pump. Then trying to keep him still or to wear his back pack while hooked to the pump. Venting or burping the plug because he get's an air bubble. Or the best part the exorcist style puking because he has such a big air bubble that he cannot digest anything. I am so stressed out I feel like a dry twig ready to snap.

Then I have parents who tell me I should have left my son at home or in the car when I am out shopping so he won't have a meltdown in the store. Or ask me what type of dwarfism my son has because he is so small. The parents that tell me I shouldn't be letting my son jump at the trampoline park because he can get hurt by the other kids. Or my favorite a mom said to me: "I don't want to be rude or anything, but I noticed your son has slanted eyes in his pictures, is he retarded, like Down syndrome?"  No I did not punch that mom in the face, but I sure fantasize about it. And what isn't rude about her comment? You don't say those type of things to parents.

I constantly feel guilt for all the struggles my son has to go through. My poor little man has a rough life. He has no control over his life. Constantly going to Dr.'s and being stuck with needles.  Being forced to go to all these appointments and therapy when some days he would rather be home. I can tell this poor little guy is stressed. He chews through at least 6 binkies in two days. I can't afford to keep buying them. And....... yet he needs them to fall asleep or when he needs security.

He is the smallest one when he is around kids his age, and is delayed in speech. I always wonder if I had done something different while I was pregnant would he be healthier? Would his stomach work? Would he not have to suffer as much.  Then I get worried for his future. Will he be able to keep up in school? Will he have to have this pump forever? will it bother girls?  I am a worry wart to begin with, so this just adds to it.

I love my little man and wouldn't change or trade him for anything else in the world. I just worry about everything working out for him and him being happy.

XoXo- Mama Bear

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