Recently I had a HUGE influx of readers on my blog. The comments were not ... um nice. But after a day like today I can't help but think how much this sucks.
I love Tyler. I do. I try everything in my power to be the best mom in the entire world and I fail at it. I hate it. I hate that we have to do this. I hate that he has to go through so much. I hate that people think we don't treat Ty "normal." I hate that we have to do things that most people have NEVER even heard of. That getting routine immunizations is not the same as botox every few months. That your busy week doesn't get to consist of painting your house but dragging your kid to every therapy that anyone can think of PLUS some.
I don't get it. I don't get why its not OK that this can suck. Why do I have to be OK with it all the time? Can't I say it sucks.
Today we did casting for new AFO's. SMO's are coming with them and we are doing Titanium afo's but they are not covered by insurance OR Shriners. We have to pay half of them. But the casting part sucks. For real, this kid has been through 7 brain surgeries, countless pokes and prods and he really doesn't want to put on a freaking cast.
My hubby who works ALL the time was suppose to go with us to help hold him down. Yeah. That didn't work out. So here is my 30 pound kiddo, thrashing around, spitting, screaming, gagging kiddo while they put casts on him. Finally they had to get another person to help me hold him down. Yeah. A normal mom so gets to do that.
Seriously... I hate it.
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5 comments:
Sometimes, I hate it too. And I think it's totally okay to hate it. Nobody is happy with everything in their life all the time. It just sucks that even if people 'don't get it' about what it's like to have a special needs kid, that they don't even get that they 'don't get it'!! Ya know what I mean?
Ditto to Tiptoe Mama; sometimes I just hate it, too.
Its ok to hate our lives as we know it. You get that when I say it and what I mean when I get discouraged about countless therapy and medical appointments instead of ballet classes, gymnastics, soccer, whatever.
I'm disappointed that you get comments that are less than positive, yet not surprised. No other mother will understand how traumatic it is for us as mothers who DO have to hand our children over to the medical pros for surgeries or who have to hold our kids down and listen to their cries just to get castings, catheters, or any other kind of unpleasant thing.
Parents of kids who are 100% healthy can never understand the devastation that comes with a diagnosis... just saying.
Just remember. Our kids did not end up in our families, with US as their mothers, on accident. This is all part of the plan and I believe that these kids make us better people as individuals and better mothers. Lets face it, we have perspective on the important things in life over others who may fuss at getting B's in school or not making the cheerleader squad.
amen hayngrl! That's why this blog was started. I just couldn't stand listening to another group of moms complain about their kids not wearing the right clothes, or whether or not they were the smartest kid in the 2nd grade anymore. Or even potty training. Everything about my world was so different. Nobody seems to even understand that there is a difference, and it felt so lonely. If you try talking to those moms about your latest therapy or procedure, or worrying about your child ever walking, or wondering if they're even physically capable of being potty trained.....well, you know.
It's okay to hate it........for the past 8 weeks I find myself truly hating Cerebral Palsy and what it does to an amazing individual. I've observed 'educated professionals' talk to him as if he did not understand or that he in fact is 24years old in his cognitive abilities. I've realized 24 years have passed and my physical body cannot hold up to task as it once did. I may be a stronger person because of my experiences as a mom to an extraordinary young man, but I feel weaker than I've ever felt at times as it washes over me and I can't find the air to come up from under it all. It is okay to feel as you do. Lord knows, we understand it on here without any ifs ands or buts.......hugs~
I truly believe that the world has something against a person having a bad attitude about their situation. I know that sounds weird but just hear me out. Whenever I have a bad day and tell someone that I am tired of (insert current problem here) and they always come back with how lucky I am and how wonderful JT is. I know all of that. I just need to complain and get it out of my system. We should all be allowed to feel crappy about our situation as long as we snap out of it and take care of our children.
So go ahead. Feel bad. Hate your situation. Then take a deep breath and do what you have to do. We are here for you hon.
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