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

Saddest Days of My Life | Fighting Parents

My wife and I have a great marriage.  We have our issues but we love each other and for the last ten years have been able to work things out and grow in our love.  Nevertheless we do fight.  One time we got in a really big fight right in front of the kids.  It was not a lovers quarrel. It was one of those fights where any shred of love is void and not present.

During the argument I was yelling at my wife pretty loud while she was crying.  While I was yelling my oldest daughter (who was five years old at the time) yelled over my voice crying, “Stop making my mommy cry!!!”

I stopped on a dime.  It was one of those moments where I was in the middle of total emotional, irrational meltdown and was instantly brought to a clear and sober realism.  I immediately apologized to my wife for being a total moron and unloving husband.  I sat my kids down and apologized for not loving their mother the way she deserved and for not being a good father.

Later that night I wept.  I wept hard.  My wife and I held each other that night in our bed and we bawled together.  That day, it was as if I took out every ounce of love and respect I had for my family and threw it out the door because I felt that my ego wasn’t being tended to.  I let my pride rob my love and dignity.  I caused my wife pain.  I caused my children pain and fear.  It scared me to see how I could run away from the thing that I needed the most (love of my wife and family).  It shook me to know that my love could so easily be hidden and put away.

We have had our arguments since then both big and small.  We have had our lovers quarrels on the way to church (yes…I am the pastor).  We have argued at the dinner table.  But since then or before then, we have not argued in such a way that any hint of love was void.  I think that’s what made my daughter cry.  Even at a young age, it shook her to see absolutely no hint of respect and love.  We have worked hard to make sure that never happens again.

Filed under: Saddest Days of My Life

Saddest Days of My Life | The Accident

When we were living in Philly my wife got into a big accident.  What made it scarier was that she was in the last trimester when she was pregnant with #4.  That day she took my car and went to meet a friend.  She was on a two lane road and lost control of the car.  She accidently yanked the steering wheel too hard and went left to on coming traffic.  Luckily no car was coming at her when this happened.  She ended up on a grass field where she slammed on her brakes.  It had been raining so the grass was wet and she skidded and went straight into a telephone pole at about 35mph. Read the rest of this entry »

Filed under: Saddest Days of My Life

Saddest Days of My Life | The Swimming Pool

Four years ago my family and I went down to visit my parents.  They have a pool and a jacuzzi.  None of the kids could swim at the time so we put swim suits on #1-3 and had them play in the jacuzzi.  While they were playing in the water my brother was swimming in the pool next to it.  While I was supposed to be watching the kids my brother and I started talking. Read the rest of this entry »

Filed under: Saddest Days of My Life

Saddest Days of My Life | Intro

Koreans love drama.  If you have ever watched a Korean Drama series you know what I am talking about.  It probably has a lot to do with poverty, war, and being under the occupation of other countries.  Whatever the reason, Koreans are very melodramatic.  For the next week I will be sharing the saddest days of my life as a parent.  I think in many ways these entries will be more for me than for you because in my saddest days also turned into beautiful ones.

Why take this time to share sad stuff?  Well, parenthood for me has rid me of most of my delusion that I am in control of my life.  As a result it has had a tremendous impact on my faith in God and the idea that there is someone/something out there overseeing the world.  I cannot deny it.  When I was younger and single I was more readily able to remove God from my mind intellectually and practically.  Being a parent, this is no longer the case.  From the miracle of life and birth to the fear filled adventure of raising young kids, I am no longer my own master or in control with what happens in this life.

My hope is that regardless of your faith or world view these stories will make you look at your life and help you to not only look at parenthood (or life) but to look through it and see the bigger story and narrative.

Filed under: Saddest Days of My Life

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