Spina Bifida

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this is how we roll- flashback post 9.16.2012

 Even though I was a child development major, I sometimes forget that you can’t force a child into developing and doing things faster than they are ready.  I also forget that Tough Guy was born 5 1/2 weeks premature.  So really, when he turned 1, he was really only like that of a 10 1/2 month old. We got Tough Guy his first wheelchair when he was pretty little because we want him to have the opportunity to grow and...

new wheelchair part 2

After a couple weeks of pondering and researching, we placed our order for Tough Guy’s new wheelchair!  If you didn’t hear about the earlier part of the process you can read about it here: new wheelchair part 1   The therapist is writing up medical reasoning for each aspect of the chair and it will be shipped off to insurance for approval.  The faster insurance company approves it, the sooner Tough Guy will get his new wheels.  Most likely it will...

to the man that said God will heal my son

” You know, God will heal your son.” A few weeks ago we went to the pool.  It was a cooler day, but we had been visiting my parents for the weekend and we had gotten home and wanted to do something fun as a family.  We knew the pool wouldn’t be crowded, which it wasn’t.  It turned out to be a great night for a quick, hour of family swim time.  We got out of the pool and dried...

new wheelchair part 1

Tough Guy is due for a new wheelchair so I find myself swimming in questions and research about wheelchairs.  Tough Guy’s very first wheelchair was his tiny little green zip zac chair.  When Tough Guy was about 6 months old, we saw a little boy on you tube zipping around his house in this ingenious little wheelchair that allowed the boy to reach his toys- it made them accessible so he could easily play!  When Dan and I saw it,...

outdoor summer play

Sandboxes, bike rides, water balloons, swing sets, swimming pools and running back and forth between my house, my cousin’s house and my best friend’s house through the yards are all very vivid memories when I think about my childhood summers.  I played outside for hours, completely barefoot and dirty by the time dusk set in. As a parent, these are the types of memories I want my kids to have when they think of summertime, but when you have a...

the dreaded question- flashback 2015

It was only time before I heard the dreaded question come out of my curious three year old’s mouth, “when will I walk without my wheels mama?” He’s usually very proud of his wheels, and he’s mentioned things about not being about to walk before, but this time felt different. He’s noticing he is different. He’s noticing his limitations. He wants to do something that is just physically not possible. Dear Tough Guy, If I could reach to the moon...

exactly the way she is- flashback post 2014

So many emotions flood your mind when you are pregnant with a child with spina bifida or omphaloceles or any birth defect.  If you were hoping to have more children, I can almost guarantee you will have that thought, “will I have another child with spina bifida?  Is it genetic? Is it me?  Is it something in my environment?  Did I take enough folic acid?  If I caused this, what did I do?” During the first year of Tough Guy’s...

my beautiful holland- flashback post 2012

  For any parent that has a child with special needs, I am sure you have heard the poem, “Welcome to Holland”, by Emily Perl Kingsley. When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day...

hopes and dreams- flashback post 2012

Matthew 17:20, He replied, “Because you have so little faith.  I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there’ and it will move.  Nothing will be impossible for you.” As a parent, I believe we are always striving for the “best” for our children.  The best looks different for different people and different families.  The best even looks different for each child within...