Saturday, October 20, 2012

Day 20: Doing hard things

Welcome back to 31 Days of Spina Bifida Awareness! 

One of the things I have become ever more aware of as we have watched Mason grow and learn these first nine months is that God created our bodies more intricately than I ever imagined.  Despite being a mother of six children before Mason’s birth I never really grasped this.  Even one small change affects the entire body, and Spina bifida is not just one small change.

I have seen how, for example, one dietary change can impact many systems.  We have tried three different formulas after breastfeeding and each has brought it’s own changes.  From skin effects (eczema or the clearing of eczema, head to toe rashes) to changes in bowel movements (runny, firm, solid).  Of course that leads to more changes (skin breakdown from frequent bowel movements or constipation because of muscles weakened due to SB).  I could go on.  Even adding a few bites of solid foods like oatmeal throws the whole body into changes. 

I am beginning to see the many small things that go into a single larger skill.  Rolling over, for example!  100_0341From using abdominal and back muscles to lifting a leg and swinging it over.  Don’t forget paying attention to where you arms are placed so they don’t get in the way once you get your body moving.  Or using the shoulders and elbow to crunch your upper half and finish that roll.  100_0218-001Wait – did you check your head and neck position?  Because if you’re arching back to watch your mom with the camera it can be a bit difficult to get everything else coordinated.

I cannot begin to predict what will happen next with Mason at any particular age.  Things we expected to be difficult he masters with ease.  Things we expected to be easy, such as sitting independently, are long, hard struggles with no end in sight yet.  Mason is cheerful.  Joy radiates from him and you cannot help but smile when he is around.  He loves life, spina bifida and all.  He does hard things on a daily, hourly basis.  He is my hero!


  1. You are providing such a wonderful service through your blog. Every parent tackling Spina Bifida from diagnosis through adulthood can find encouragement, comfort, and incredible information here.

    I, who do not have a child with SB, find your words helpful in dealing with life in general.

    Thank you.

  2. I completely agree with Lisa. Thank you!


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