Monday, November 21, 2011

Sometimes it isn't enough


Sometimes I can't get through the day without hating "it."

Sometimes I want to not get up and face the day of watching how much "it" hurts my child.

Sometimes I really wish " it" did not exist.

Tyler is a super hero that has "Terrible Palsy."

This morning we went to an appointment where we discussed Tyler's terrible palsy. Like a big elephant in the room that sadly is really clumsy. It is not like other people's. He is doing so well. He is running, ( sort of) and jumping ( sort of) but most of all he is happy. But that doesn't take away the thoughts that run through your head as they tell you of the risks of pumps, shunts and long term needs for wheelchairs and assistance.

Sitting there today, asking questions and getting risks I lost it. I was offered a tissue by the doc. As each percentage of risk and death was assessed for each procedure my heart broke. This was not ever in the "plan." This was not in the dreams of when we found out about our super hero.

Even after making hundreds and possibly even thousands of life altering choices I often still think how much I hate Terrible Palsy. I can't seem to get over the life that we have been handed. It isn't like a terrible book. I can't put it down and start a new one. You can't do that with life. It isn't even just a bad chapter. It is a forever, long, horribly written book. It has good parts. It has even mediocre parts but sometimes it just sucks. Sucks... like badly done makeup and sparkles sucks.

Is the superhero worth it?

Yeah. He is.

Does he deserve it? No. Not in a million years.

Somedays even a superhero can hate Terrible Palsy.

* On a side note. The CDC reports that a person who has cerebral palsy has an estimated life long cost of around 11.5 BILLION dollars and that a person with visual impairment is 2.6 MILLION. Since we have both we are kind of in big trouble.*


Chantel said...

That just broke my heart. I am so sorry he has "Terrible Palsy". It has got to be a lot for your little family to deal with. He is SUCH a special boy and the spirit he brings is amazing. I know things are hard for both of you but you are doing a great job!

Grandma Labrum said...

We love Tyler so much and laugh when we are around him. He is so fully of fun and loves his Grandpa and Grandma, the Old Lady.

Tammy said...

I love watching him with his best friends. Lexi is so good with him and she is so sweet. I am so glad that she has a special bond with him and I am glad that my boys love to play with Ty Ty.