Thursday, October 4, 2012

Spina Bifida Awareness Day 5 - Toby's Story

Dear Life,

So this sweet boy is very special to my heart.  His birthday is within a few weeks of Kumaka's.  We feel like we do this Spina Bifida thing together, although our boys have different challenges.  I am so humbled by Carrie and Bruce.  And this boy...his smile melts my heart.

"Our son Toby is five years old.  

During a routine 21 week ultrasound, we learned that our third child had Spina Bifida and Hydrocephalus. 

 When we found out, we were shocked and devastated.  It felt like our dreams had just fallen apart.  I remember thinking, "Why didn't we just stop at 2 kids?" (because we had 2 healthy kids at the time). 

 Now, I wouldn't trade our sweet Toby for the world.  His name means "God is good", and that describes perfectly the last 6+ years. 

 Through Toby we have learned many things-the biggest being how to rely on God who gives us the strength to go through every day.  Toby ended up with more difficulties than regular Spina Bifida- a trach, ventilator, and g-tube. 

 Even in this and facing 2 more major surgeries in the next few months, he is worth it!  We know God's peace, grace, love, and mercy in the most intimate of ways -something we would not have learned had it not been for Toby.  I know that He has a plan for his life and that it is better than anything we can come up with on our own.  Toby has shown us strength, determination, perseverance,  courage, and he's just full of joy and life.  He has also overcome amazing odds, and we are so proud of Toby.  

My advice for future parents of children with Spina Bifida is twofold:  Take it one day at a time, don't assume that just because things are hard today, they will always be this hard.  You learn a new normal, and your child will defy the odds of what any doctor will tell you.

Second, take time to go through that grieving process-it's normal and beneficial.  We still have days where we are grieving because of a new diagnosis or emergency surgery for one reason or another.  I have realized that grieving through this journey gives us more joy on the other side!"


  1.'s so good! LOVE! :)
    I love the way you put the photos in there! :)
    Thank you for sharing this, especially in light of everything that is going on right now - it encourages me and reminds me to not give up.
    Carrie :)

  2. What a beautiful story and family. Thank you for sharing this.


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