Archive for March 6th, 2008

In the Hospital with Matt

mom.gifMatty started out life as the sweetest, calmest little baby boy.  He didn’t balk at much. The nurses found him to be a complete joy. 

I spent most of my time in the hospital by myself.  Matty was born at midnight.  His father left at 6 a.m. to go to Las Vegas for a wedding.  None of his family even came to the hospital.  My mother was in and out.  She was more out than in.  I don’t think she is a big fan of hospitals, she just hadn’t admitted this yet.  My dad was in Oklahoma on business. 

Because he had such a rough start, all of my visits that first day were in the nursery with him.  I had to be wheeled in though.  I take a lot longer than most to stop bleeding.  I lost a lot of blood because of this.  They didn’t want me up and walking around because of it.  It worked out well because they had to keep me an extra day and they had to keep Matt an extra day.  Neither of us had to go home without the other. 

I was in the nursery feeding Matt when my family doctor stopped by to check on us.  He was a new family doctor.  The one I had grown up with retired. 

Just an interesting tidbit:  Kevin and I had the exact same family doctor growing up.  I’m sure there were times that I was in the waiting room with my future husband and had NO clue!!

circumcision.jpgMy new family doctor also was going to go ahead and circumcise him.  I’m not squeamish.  I can handle just about anything so I told the doctor that I was fine to stay.  The doctor got Matty all prepped while he asked the nurse questions about the delivery and the problems he had.  I came over to softly talk to Matt and rub his little hand while the doctor did what he had to do.

The doctor stopped and asked me to come and look at something.  The doctor couldn’t finish the circumcision because his penis was deformed.  He had what was called hypospadias.  The hole in which he peed out of was not on the tip but at the base.  It looked like a cut open hot dog.  In order to repair the problem they would need to do a skin graft and use the circumcised skin.  Matty also had a testicle in his abdomen that would need to be fixed (an undescended testicle).  After the surgeries, Matty didn’t have a good chance of fathering children in his adult years (this was in 1996 so that could be different now). 

This was about the time I fainted.  I’m not a fainter and I hate the attention to be drawn to me, so I was really embarrassed.  The nurse put me in a rocking chair that was in that room.  The doctor asked me if it was from the loss of blood that I had experienced or the trauma of seeing my son’s private parts not be as they should be.  I had no clue.  I just wanted to snuggle my baby.

I was back in my wheelchair and wheeled back to my room while the doctor finished up with Matt.  Not that there was much he could do but put his diaper back on.  Matty would have the surgery to jesussnugglebaby3.giffix the testicle when he was 18 months old and the surgery to fix his penis when he was 4 years old. 

Interestingly, neither of these things have to do with fragile x or autism.  The boy just seemed to capture all kind of unrelated issues.  Sometimes, I wonder if it was God’s way of cushioning the blow of learning about him having fragile x: start with the little issues and work up to the Big One! 

I had to deal with the shock of it myself.  In 1996, cell phones weren’t as popular as they are now.  None of my family or friends had one.  I had no way to contact anyone and tell them what the doctor had said about Matt.  Theresa was even out of touch.  She was in New York on a vacation.  I had told her to go because I would be fine.  She was not pleased with me when she heard what I had gone through in her absence. 

Therefore, I had no sounding board.  All I had was an open view of the sky.  So I talked to God about it.  Then I slept.     

4 comments March 6, 2008


Autism & Fragile X

C’est Moi


Overly happy, married, working mom to 4 kiddos. This is our journey while working with fragile x syndrome.

Who are these people?!

all names changed to protect our family
  • Kevin ~ dad
  • Beth ~ mom & fragile X carrier
  • Lauren ~ 17 & in 12th grade
  • Austin ~ 14 & in 9th grade
  • Matthew ~ 13, in 7th grade, has full fragile x mutation, and autistic tendencies
  • Rachel ~ 10, in 5th grade, has full fragile x mutation, and autistic tendencies
  • Theresa~ Beth's best friend since 6th grade & her biggest supporter

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