Friday, March 28, 2014

I Know Different

Dear mommy,

I have felt your tears, falling on my face.
... Someone else might think they are tears of sadness, because of what I can't do.


I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.


I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.


I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

  I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

written by Tricia Proefrock

Thursday, March 20, 2014

He's Growing Little By Little

Noah had a physical today. He weighs 64.8lbs and is 54 inches tall. He still isn't on the growth chart but, he has gained 7lbs. this year and grew a 1/2 inch.  His doctor was very pleased with how Noah looks. He has no break done of skin, no scoliosis, his hips are in great shape, his joints are relaxed and not tight and spastic. Most kids with CP have problem with their hips going out or having scoliosis.  I really feel  that all the hard work of continuing ABR has kept Noah's body in such great shape.

I also asked for a referral to a nutritionist so maybe I can have one that supports me on using a blenderized diet. The next time Noah needs to see the GI doctor at the Cleveland Clinic I want to be able to tell her that I found my own nutritionist that supports me. Every time we go I feel have to defend myself. What so wrong with feeding my child real food? I must be doing something right, he has gained 7 lbs. for goodness sake.

Friday, March 14, 2014

Not My little Boy Anymore.......

Can someone tell me when my little boy grew up?

Saturday, March 8, 2014

3-8 Trisomy 8 Awareness Day


Friday, March 7, 2014

Field Trip to Apex Academy

Noah's class went on a field trip to Apex Academy in Ontario Ohio.

I wish I would have gotten a before picture but I think he looks pretty good.

I was asked to speak at a 4-H meeting on Sunday. Time to focus on  the 3elove  movement and embrace, empower and educate. I want to express the whole idea of acceptance. Wish me luck and pray for me. Public speaking isn't one of my strong points. In fact just thinking about it scares me but, I'll do anything to help Noah feel like just one of the guys.