Spina Bifida Awareness Day 22, Micah's Story

Dear Life,

I actually got to meet this mommy at last years Spina Bifida Conference in Anaheim.  She is an amazing mommy...and I am so appreciative of her input.  Here is Micah's story:

In April of 2005 Doug and I went into the doctors office to have the routine ultrasound done.  I knew it was to rule out any problems but after 5 babies I thought nothing of my ultrasound.  After the ultrasound, they sent us back to our room and the doctor came in and told us that they think they found hydrocephalus in the brain.   I knew hydro meant water;  so I was pretty sure I knew what that meant.  They sent us home and told us that the high risk doctor would call us to make an appointment.  

Doug and I relied on our faith that God would take care of us.  When we finally got into the high risk doctor she told us that they were going to do another ultrasound to check for Spina Bifida.  Again, I knew what Spina was but not Bifida.  They were unable to see a lesion on Micah’s back because of the way Micah was sitting.  So they needed to do an AFP test. We made it clear to her that we were not terminating this pregnancy so she needed to explain to me why the test was needed.  Her words basically were:  “ Wouldn't you want to have everything in order to help your baby after he/she was born?”  When she worded it that way it made more sense to me.  When we got the results back that the baby did have Spina Bifida, Doug and I just sat there holding hands soaking in the news.  The doctor put her hand on my leg and told me “You sure are taking this well for getting such devastating news.”  I do not remember my answer or if I even answered.  All I kept thinking was “My baby will live.”  The doctor told us that there was a chance he would not walk, would have bowel and bladder problems and would be cognitively delayed.  It was not until my eighth month of pregnancy when Micah decided to go from breech to head down that they got to see his lesion.  By the way that was really painful!

Micah was born c-section on September 1, 2005 with all the doctors ready to take care of him.  They whisked him away immediately.  I did not get to see him until that afternoon.  I was frustrated but wanted what was best for Micah.  Doug was able to get two pictures of him after he was born.  That evening they did the surgery that closed his back.  I did not get to hold him for three days.

  I only got to look at him.  Then when I did hold him it was while he was on a pillow.  On day 10 they convinced me that he did need a shunt.  Looking back at pictures I can see it but at the time I was in denial.  On day 14 we got to bring Micah home.  It was as if we were brand new parents all over again!

Micah is now 7 years old and such a blessing to our family.  He has taught all of us how to be strong and determined.  He lights up everyone's face he meets.  I would not change anything that we have gone through.  We have learned and taught so many people about Spina Bifida.   He has taught us that life is precious no matter the cost.  I have met people I would not have otherwise met.  I heard someone tell me recently that everyone has a disability.   And like Micah we just deal with that disability the best way we know how.

To me Spina Bifida means courage, strength and trust in the Lord.  He gave us this precious gift and it is up to us to teach Micah how to make the most of his life that God has given him.  Because although to some people he is going to struggle to us he is going to show all of us the powerful love of our God.