Friday, March 20, 2009

Online Resources for Cerebral Palsy

It turns out I have a few new readers of my blog!  I'm so excited to be hearing from new people in my comments!  To think that I started this blog to keep my family and friends informed ...and now I'm offering support to people I've never met.  I feel incredibly blessed.  Thanks for stopping by everyone!

As we all know....having Eli changed my life.  And Lonnie's.  And I think some of our family member's, too.
In so many ways, in fact, I could probably write a book.  But today, I want to share how God has put a desire in my heart to reach out to other families and help them on their journey.  Especially the first few years, when you're trying to wrap your head around it all.

After we brought Eli home from the hospital we had a million questions.  Of course, we were hoping that all the people saying "everything will be just fine" were right...but we knew differently.  We just wanted to hear other people's stories, and know that we weren't alone.  And, as weird as this sounds, once in a while we run across a story of a child that has so many critical issues, and we realize that.....maybe our situation isn't so bad afterall!  It could be so much worse.  In those times we are grateful.  We thank God for the opportunity to take care of his beautiful child.  And we beg him to not let the journey end too soon.

We knew we had a tough road ahead....and we let ourselves get overwhelmed at times thinking about the "what ifs".  That's a sad and lonely road.  I don't recommend it!  My best advice is to stay in the moment, and enjoy what's in front of you.  When the time comes, you'll have the strength to deal with the bigger problems that may (or may not) come.

My prayer for all you parents taking care of disabled children, and to the teachers and therapists who love our kids, is this:  May God bless you abundantly and give you an inner peace knowing you are doing His work.

Today, I would like to share some links with you to websites offering support groups, information and resources for families in the "cerebral palsy world".

United Cerebral Palsy is a national organization with local chapters in many states:
http://www.ucp.org/

My favorite resource on the web!  If you have a Tube Fed child - you MUST go here!!
http://www.parent-2-parent.com/forum/

This is an organization that helps families with tube feeding supplies, through an exchange program.
http://www.feedingfoundation.org/index.html

Ginny Paleg is a wonderful therapist on the East Coast with an insight to our children that is rare to find!
http://www.ginnypaleg.com/

A wonderful online magazine with tons of info about medically fragile children, tube feeding issues, and more!
http://www.complexchild.com/

I hope you find this information helpful.  My next post will be a list of links to blogs...of other families with kids with CP.  It's a BIG BOAT  we are in....and I'm happy to try to bring some of us together!

And of course, what is a blog post without pictures? 
So, I end today with these pictures of Eli...being read to by his wonderful caregiver Tina.
The book was:  "God Thinks You're Wonderful" by Max Lucado.  (Click this link to buy it inexpensively online)  It's great for adults and children!!!  A very simple read, with cute little pictures.  It's a must have for your collection :)

1 comments:

~ shi ~ said...

You make me want to come and hug you right NOW! I am your BIGGEST supporter always and for always! When you seem to not be able to handle the sea sickness remember to call!
Love you :) Shi~