Sunday, March 6, 2011

Sunday Sunday...

“Sometimes, if you stand on the bottom rail of a bridge and lean over to watch the river slipping slowly away beneath you, you will suddenly know everything there is to be known.”  Winnie the Pooh

There is much on my heart this Sunday morning.   The last week has been hard.  On so many levels.  Beyond words.  We are in a season where we don't have enough hours in the day to get done all that needs to be done.  I feel like I am days behind on everything. I had to leave the house yesterday to get basic items from the store that we ran out of days ago.  The boys were playing with Aaron in the yard.  A fun game where they hide and if he finds them he gets to shoot them with his imaginary dart that drops them like flies to the ground.  He LOVES it.  They love him.  I drove away thinking about their silly game and the fact that I was not out there playing with them.  It made me sad.  It made me think of Pooh Bear and his wonderfully, silly  philosophy.  It convicted me.  So I came home and went for a wagon ride....

I didn't go very far.  But it sure was fun.

Ben wanted a ride too... Aaron wasn't too sure... Mom is one thing but this lug???? Hmm...

Pulling doesn't work from the front so what about from the back....

NOT BUDGING... How about pushing....



I need to consider Pooh's silly philosophy more often!!!

I'm still holding hostage the pictures of Aaron and his Mama. 

We have 520.00 left to raise for Jonah.... We CAN do this....

The plight of the orphans in Eastern Europe is never far from my mind....


  1. Wonderful pictures! Love seeing "mama" in the wagon!

  2. Glad you stopped, turned around and had some fun time. We all need it, don't we. Hugs

  3. I had a dream of Jonah the other night! I dreamed that I took him to a carnival... He was SO sweet and cuddly and LOVED the carnival. I woke up with a smile on my face praying that my dream would soon be a reality for sweet Jonah. I know I likely won't be his mommy but I'm praying someone SOON will be. My arms almost ached to hold him as I could feel him in my dream. It was a gift to dream of him. I know he will be a dream come true for a family one day. Loved the pics of you in the wagon!!

  4. Jonah is keeping me and several of my friends awake at night. I know his family is out there. I will post his picture on Facebook every day until someone commits to him.
    Your Aaron is precious. These pictures made me laugh and smile.

  5. Oh so happy you had a "Pooh" moment and hope you have lots more. Isn't it just so worth it so see the delight on their dear faces ? :)

  6. I love Aaron's face when he is laughing so hard and you are in the wagon! Wish I could hear him! Too cute for words! Boys are so sweet.

  7. Love it! That's so sweet that you got in the wagon -- That's so great, because I think many adults forget what it was like when we were kids; I remember how much I *loved* playing with mom and dad!

    I have a question for you (and I hope you don't view it as nosy! I'm just curious...)
    What is the situation with Aaron's arms and hands?
    I can see the difference in his hands and his shoulders, especially. So it seems like he should have fairly little, if any use of his arms and hands. (I don't have a medical reason for saying that; I just mean that they're significantly different in appearance. I guess I just associate a difference in appearance with a difference in function/ability.) Plus, I know you mentioned one instance where he couldn't raise his arms to take a candy from one of the ladies in the neighborhood near his old institution.
    Yet, I always see photos of him playing, pulling his wagon, etc. So it seems like he has a lot more use than I imagined!

    So, if you don't mind answering, are his arms and hands stiff/tight like his legs or are they just weak due and the muscles underdeveloped to some effect of the arthrogryposis?

    And do you anticipate casting or surgery for his arms/hands in the future? Or is it more of a matter of physical therapy and adaptation?

    And do kids like Aaron generally have meaningful use of their arms/hands as adults? (i.e. to get dressed, prepare and/or eat a simple meal, type on a computer, etc.) I remember seeing a spoon that attached to his arm with velcro, plus, I remember you talking about how he used his feet like hands, so I can imagine he already done lots of adapting! So is it more a matter of finding more ways to adapt? Or is this element of the condition "treatable"?

    I'm sorry -- I don't mean to pry. I'm just curious about your beautiful little boy. If you don't feel comfortable answering, you can certainly just delete this. I hope you don't take offense; I don't mean to be intrusive! ;-)


  8. Truewell - Aaron's elbows are unable to bend, his wrists are unbending at this moment and he has very little use of his fingers. When we first brought him home he could not hold anything in his hands, his fingers barely moved and we could barely move either elbow ourselves. After being home about 5 months he now has some finger movement and I can passively move each elbow. The right one I can move almost into a 90 degree angle. His thumbs are currently stuck in his palms. This is just the short list of what needs to be address. He is missing muscles - has tendons holding parts down etc. His little shoulders, arms and hands are a bit of a mess. BUT - we have seen huge progress and that is without any therapy or treatment except what I am doing with him at home. The long-term goal for Aaron is function. So we will do whatever we can to get the greatest use of his arms/hands for him. Whether that means surgery, therapy etc. We begin that journey in a few months and know that it is going to be a long road.


Loving words from kind people make our hearts glad!


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