Tuesday, August 24, 2010

Things I never thought I would do

There are a million and one things I thought I would be doing when I found out I was pregnant. Labor with no drugs, breast feed till one, every single sport open to kids, teaching them to ride a bike, have them read early, talk with great precision, never get sick and the list goes on.

There are a MILLION and one things I never thought I would be doing and have done since finding out I was pregnant and having Tyler. Some are "oh so much harder" than I ever thought they would be. They are sometimes a cause for great heartache when I realize just how far off the path they really are I kind of get sad.

I never thought I would :
  • Be asked if we wanted to continue care. Though we didn't sign a DNR in the NICU there were several talks and things mentioned about if we knew what his abilities could potentially be and what could NOT be.
  • Sending my son off to go to brain surgery. ( 7 times)
  • Sign up for special therapy.
  • Enjoy the company of the Foundation for blind children and wondering if he would need to use a eye cane to "see" and setting up vision therapy for him at school.
  • Sending my 3 year old child off to school on a "short bus"
  • Get a diagnosis for Cerebral Palsy
  • Wondering if I would ever take my baby home
  • Not being able to have him play on his own
Most recent and one that was hard to do was fill out paper work to receive a Handicapped parking permit. I KNOW everyone is Jealous that we get to park close but the reality of accepting the inevitable was really hard.

Getting a diagnosis and dealing with the cerebral palsy is just what it is. It is part of our every day life and on a regular basis I don't wake up and say ( or think) " Oh here comes my kid with Cerebral Palsy.) But the reality kinda hits hard when I JUST can't carry him any longer.

At Thanksgiving point he was determined to walk and pull the wagon. He got SO tired he ended up on my shoulders. I am to overweight ( yes.. I need to work on that) and he is so big that I can't carry him on my hip and he has to be on my shoulders.

Going to the grocery store is a chore. We end up having to walk the long length of the parking lot. It is just not working for me. If we can get approved for disability then I am hoping they will let us order a stroller for him. If not, we work on getting a jogging stroller that will hold larger kids.

The list, I am sure, will grow longer as he gets older. We are proud of him. We are trying to be the best parents that we can. Doing all we can to make his life easier even if that means doing something we never thought we would do.


Denise said...

Nancy, my heart and love goes out to you! Although I will never understand going through what you have I think you are incredibly strong and Ty has the best mom he could EVER have! Love, Denise

Anonymous said...

Nancy, I'm not sure if you've seen this site but I thought of you when you mentioned a stroller for Ty: http://www.adaptivemall.com/ By the way - I LOVED his fishing pictures! Hang in there - you guys are doing great even though it may not always feel like it!


Miracles Happen said...

Thank you Becky! We have seen the adaptive mall and I am in LOVE with 2 of the strollers but they are expensive. If I can get him on disability this next few months I am going to see if we can get it covered. But the stroller we would need is around 500-700 bucks

Beth schell said...

My sister has cerebral palsy and I remember always thinking she was the same as me as a child. It was only as an adult that I saw that there were some differences in our physical abilities. I wish I could be a child again!
My sister is involved the the CP organization in Utah. Would you be interested in being involved in the support group?

I love you Nancy and I admire your patience and love. Truly your love as a mother is demonstrated in the way you face each day!

Miracles Happen said...

Beth I totally would. I am going to send you an email. I love you!!