Tuesday, February 19, 2013

Blessings and Challenges

   Today, after weeks of calling, emailing, begging, and cajoling, I finally got to see the newest prospect for Noah's next wheelchair.  He has outgrown his current one in both size and functionality, so we are hunting for something completely different.  After countless hours of online research, I fell in love with the ThevoTwist by Thomashilfen.  It is a stroller-looking chair, which I love (as much as we try to ignore it, the constant gawking by strangers in public places gets old, fast).  I had high hopes for the dynamic seating sensors, which might reduced Noah's inclination to body-slam his wheelchair in seeking sensory stimulation.  I also longed for better postural support, as he slumps like a sack of potatoes in his current chair.  We had already tried several other more conventional wheelchairs, and I hated them.  They were heavy, hard to push, and were nearly impossible to fit in our van.  Noah already pushes my physical limits in moving and carrying him.  As he grows and gets heavier, I will need to rely on the wheelchair more and more to move him not just out in the world but also in our home.  I thought for sure this would be the perfect chair, and was racing the clock to get authorization from our insurance before March 1.  (In case you weren't aware, Congress has completely imploded and abandoned their fiscal responsibilities to the American public.  What this means to us, as a military family, is massive benefits cuts.  We've already seen the first round in the form of 40% cuts to home health care and a 30% increase in medication co-pays.  I know more cuts are coming on the 1st, and worry that might mean we can't get the equipment Noah needs if we wait.)

   Well, after all the rushing and stressing, the chair is no good, at least for Noah.  It is adorable and convenient and would probably have been ideal....about four years ago.  He is almost too big for it right now, and during the fitting he thrashed so bad I thought the thing was going to fall to pieces.  I think the rep thought that too!  The frustrating fact of life is that, as he gets bigger, our options for good equipment dwindle dramatically.  They just don't make awesome wheelchairs for big kids.  I was on the verge of tears.
   In the midst of this pity-party, I had to stop and realize exactly what I was complaining about...

My amazing boy, who wasn't supposed to survive birth, much less make it through infancy, is almost eleven years old!

   Yes, this means that he is bigger, heavier, and more challenging to move and position, and I wonder how these things will be accomplished as he gets older.  As he gets stronger, he hurts himself (and us) more often, and feel like there is very little information or support for this issue.


But, my God "knows the plans He has for Noah, to prosper and not to harm him, to give him hope and a future!"  Jeremiah 29:11

And boy, is Noah prospering!  He travels:



He explores:


He plays:


And even rides!



  Lord, help me to remember, on the days that being Noah's mom is especially hard, that it is a blessing and a privilege to do so, and to be thankful for every extra day I have him on this earth!

3 comments:

  1. Wow, Beth, this is really beautiful. You're amazing view on life is one of the reasons I miss you guys so much. Your family is such a blessing to those you come in contact with. Thank you for sharing with the world once again.

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  2. Hi Beth! I had a question for you about possibly collaborating on something and was hoping you could email me back to discuss? Thanks so much!

    - Emma

    emmabanks9 (at) gmail (dot) com

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  3. Hi there! I am reaching out in regards to a question I have for you and the possibility of working together on something. Please email me when you get a chance! Thank you so much! trucillo(dot)mario(at)gmail(dot)com


    Mario

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