Ideas and Doctors

Matthew’s teacher sent me an email today.  She was concerned that he wasn’t using the restroom at school.  This was about the third time that this has happened at school.  It has been increasingly more common at home, at school and at his grandparents. He had reconstructive surgery when he was four to repair everything from his bladder down.  I’ve always been a little concerned that as he got older, and his body grew, that the surgery would be ineffective.  Therefore, I contacted his pediatrician’s office and got him an appointment for 2:30 tomorrow.

I’m worried about the appointment.  It’s something I’ve avoided for a long time.  His surgery to repair everything took about 6 hours.  Then he was in the hospital for eight.  He doesn’t feel pain but this was so intense that he felt it.  My mom was holding him and he had a sharp pain.  He bit down so hard on her shoulder that she still has the teeth marks in her shoulder.

The other reason that the hospital stay was so horrible was because my support system fell apart.  A lot of people don’t realize how important a support system is for a family with a special needs child.  I didn’t either until Matt had this surgery.  There were a lot of people there for the initial surgery.  That evening his paternal grandparents left.  The next morning his father left!  My mother left after to go camping with my dad a few days later.  I was left taking care of my son all by myself.  That part was okay but I had no one to vent to when doctors made me angry.  I had no one to give me 30 minutes so I could take a shower.  There was a shower in the room so I was taking showers with the bathroom door open in case my son needed something.  I felt really really alone and sometimes really scared.  I was still really immature then too, though I was trying to keep it together.  We did okay, and we’re fine, but I’ll never forget that. 

There was one good thing though.  Those four days alone with my son while he really needed me was the best thing for us.  We were able to bond in a way that we hadn’t been able to before.  Fragile X is an autism spectrum disorder so bonding isn’t easy.  I know that if he does have to have surgery again that it will be different.  I know my husband will never leave my side for anything.  I’m older and wiser now too so that always helps   So, we’ll see how tomorrows appointment goes and go from there.  X