The Puny Pundit

Musings of a big guy with small thoughts.

Saddest Days of My Life | Sturge-Weber Syndrome

#5 is an interesting story.  When my wife got pregnant with #5 she was on birth control pills.  Long story short its the kind where if you miss a day you take two the next.  Well we had just moved from the east coast with four kids so she missed a couple of days.  While she was pregnant she kept taking the pills not knowing she was pregnant.

Well 40 weeks later she gives birth to #5.  #5 was born with what appeared to be a birth mark on her face.  One day my wife takes #5 for a routine check up and the doctor had some concerns.  Apparently a birth mark is just on the skin.  #5 had a red mark that overlapped with her right eye.  Birth marks don’t affect the eyes.  #5 had a continuous red mark in her eye that made the doctors concerned.  They do some test on her measuring here muscle strength and found that she had symptoms of Sturge-Weber syndrome.

My wife never heard of this so she asked what it was.  The doctor told her that if #5 has this condition she will could be mentally retarded, experience severe physical developmental issues, and that she would most likely have seizures regularly.  When I got home, my wife broke down.  When she told me what the doctor said we both just prayed and wept.  During all of this my wife had another layer of concern and pain that I thought might be her blaming herself for #5’s condition because she was taking birth control pills while pregnant.  The doctor assured her that it was not related but she felt what she felt.  My heart broke for her because I know that no matter what a doctor told me, I would feel the same way if I were in her shoes.

We talked.  I told her that this was not her fault.  To her credit she surrendered it all to God knowing that it was out of our hands.  The worst part of all this was that the doctor said we would not know for sure until 4-6 months later whether our daughter has this condition.  The reason is that when she turns 1 they would do a cat scan to see her brain development.  They said that would be the best indicator of this condition.  So for months we waited and prayed not knowing what would come of this.  When the 1 year mark came we had to take her in for a cat scan which is not an easy thing for a little one.  They also tested her periodically for glaucoma which is another indicator that she has this condition.  They had to put her under anesthesia because testing little kids for glaucoma is too difficult and inaccurate when they are awake.  We had to sign a waiver form in case she didn’t wake up.  We just sat in the waiting room of the hospital hoping everything was ok.  She was found to have glaucoma in both eyes.

All this to say it was a trying time for us.  It was very evident that she had developmental issues.  Her muscles were way behind kids her age.  She was unable to walk because she had very little muscles and her reflexes were bad.  There was one hint of hope.  She could talk like no other kid we have.  Her vocab words were way higher than normal.  She was clearer in speech than kids much older than her.  This was a good sign, so the doctor said.

#5 is fine.  They do not believe she has this condition.  She is physically slower in development, however the doctors say that with her speech ability and social skills, there is nothing to worry about when it comes to brain development.  Waiting for her diagnosis was hard but every time we see her dancing and talking it makes us smile.  It is a little different this time because there is a relief that we didn’t experience with the other kids.

As I wrap this mini-series with this blog, I want to express again to any reader that has suffered in their life my sympathy as well as my understanding that my sadness pales in comparison.  I am fortunate that my saddest days turned out to be ok.  As I type this conclusion I have offered a prayer for those who suffer and for those who like me have experienced sad moments turned good.  For those who have suffered greatly my prayer is that you find peace and healing.  For those who connect with my experience, may we live each day grateful and aware both of our fortune and the reality of pain in other people’s lives.

Have a great weekend everyone.

Filed under: Saddest Days of My Life

One Response

  1. Patrick says:

    To date, this has been my favorite series on your blog. Thanks for sharing your most painful experiences with us.

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