Monday, April 26, 2010

I hate Cerebral Palsy

I have the MOST amazing child in the entire world. Everything about him is a miracle. He is fun, caring, loving, sweet, smart, adorably cute and a million other things.
I love that he LOVES Mickey Mouse.

I love that he has a favorite Blanket.
( This was NOT today... he NEVER naps unless he is sick.. he was sick a few weeks ago)

I love that he chews on the arms of Leo, Mickey and Barney.

I love that he says "I love you" in his own special way.

I love that he gives awesome kisses.

I love that he will only let me do certain things.

I love that he throws rocks any time he can.

I love that he LOVES his dad.
I love that he is learning to talk.

I love that he always wants to "help" do things that aren't "fun."

I love that he tries SO hard to do so many things.
I love that he gets up when he falls.
I love that he is strong.

I love that he has gone through SO much and yet he is still the sweetest thing in the entire
world.

But what I don't love.

I don't love Cerebral Palsy.


I hate that things are hard for him.
Days like today, when therapy is nothing but a scream fest and and that he tries to throw up to get out of doing what is hard.

I hate that they are hard.

Running, jumping and playing shouldn't ever be something a child can't do.

I hate that he can't ride a bike.

I hate that even Super man can't make an eye exam not be scary or sad or hard.

I hate that even some of his "family" won't take him and love him because he is "different."

I hate that there is something in his daily life that is effected by Cerebral Palsy.

I hate that as a mother I "MIGHT" be missing something that could "fix" something. Or try something. Or afford all the types of therapy that "could" help.

I hate that I still feel guilty about not being able to carry him to term.

I hate that he doesn't know what a bird looks like in his back yard because of his disability.

I hate that I have to sit by Day after day after day and see him have to get up time and time again because his cerebral palsy makes him fall.

I hate to sit by and watch that it is hard for him.

I hate Cerebral Palsy

10 comments:

Amber said...

Reading your post made me cry!!! At first I cried because of all amazing things you wrote about Ty. Then I cried because of the heartwrenching things you wrote about CP. My brother has CP too (but not to the degree Ty has) and I have seen him struggle his entire life. It breaks my heart that my 'nephew' has to go through SO MUCH!!! You are all in my thoughts and prayers. SLY!!!!

Kristen said...

Oh my friend....I am so sorry...and I hate it for you too. I can't imagine having to go through that day in and day out...but I really hope your good times are super good and your bad times are...not so bad. Still keeping y'all in my prayers!

Sawyer said...

I'm sorry you are having such a rough day. I know how you feel there are days when I hate RTS. We call it Really Tough Sh*t sometimes and there are days where I feel how you are feeling.

That breaks my heart about some of your family. I would take Ty for a play date in heart beat. Honestly if you need a break let me know. I'd pick him back up a hundred times if I had too. I've got your back. *Hugs*

Melinda said...

Oh, I am so sorry about your sweet boy. That Superman picture about broke my heart. My son has cystic fibrosis, which is a respiratory/digestive disease. It is not as limiting as CP ... he can play baseball, soccer and do most things, but he has so much therapy, meds, dr. visits to keep him healthy. He's gone thru a lot in his short life. I am so sorry for all our kids who face these horrible diseases.

I understand what you say about the guilt of thinking that you're not doing enough, that you are missing something.

You are a great mom ... I can just tell and I know you are doing your absolute best. He's lucky to have you!

Tracy(bookroomreviews) said...

Crying now. I feel I can relate as a mom to your pain a little because my son has Asperger's Syndrome. There are so many things I hate about that but love about how sweet he is because of it.
Cerebral Palsy is so much more to endure.
What a cutie and brave boy! you sound like such a great mom. You are in my prayers now and hi! I am new to TMT and happy to found your blog! hugs

~NICKY~ said...

I love Ty so much! His personality brightens my day. He is so sweet. The Superman pic just makes me sad. Ty is amazing. Love you guys. If you need me to come tackle Ty and give him my hugs and tickles so he can't get away, you just let me know.

Carrie said...

What an amazing post! You are such a great mom. I know it isn't easy. He sure is a cutie. We have the same blanket!! It is Matt's favorite. He calls it his "warm blankey".

Julie Leischner said...

Wow. Your post should be at the front page of any book for parents of a child w/a disability. My youngest is 3 1/2 and has Down syndrome. I can relate to what you say about all the things you love and still...it's ok to also admit the things you don't love. And I COMPLETELY relate to what you say about wondering if you're doing enough! I hear many moms talking about this therapy and that therapy and reading this book or that and trying this new thing...and I just want to RUN AWAY!! I just think at some point we have to accept things the way they are, do what we can to help our child reach his/her potential and then head outside to play in the dirt...like "normal" kids do:)

Our kids should have as normal of a life as possible...treating them like a project to cure would make me crazy!

I'm glad you can vent! Will also post this link on twitter for other special needs parents to see! I think your words will help so many!

Saimi said...

Loved your post about Ty. Although I've never had a child with disablities, I work in a Special Education preschool room.

We have the sweetest girl who shares the same disablity as your son. She is incrediably smart and some days I think she is the only child that gets it. When she laughs at my jokes her eyes light up and her smile melts my heart.

I love each child in my classroom and I feel honored to be a part of their lives even if it's just a few hours three days a week.

Give Ty a hug for me and have one for yourself as well.

Stopping by from MMB

Jocelyn Christensen said...

What a beautiful boy!

I found you on MMB!