Readjusting...

The last few days have been tough here. I feel like we have been thrown back 4 years to Davids initial injury and that has been harder on me than I anticipated.

Spending 3 days on the acute floor of the burn unit brought up a lot of memories and a lot of guilt that I thought I had dealt with. The sounds, the smells, the surroundings... all of it hit me like a wall when we got home. The mommy guilt has hit head on again... maybe I should have been watching him closer, what made me think I could let the boys have a fire when Dave wasn't home?, what could I have done differently that might have prevented this in thew first place? Every time I look at his scarring it is a reminder that I could have done things differently. He already has such a cross to bear having PWS... to have to deal with this too just seems so incredibly unfair. If I could take this from him, I would in a heartbeat but I can't, so I am left with the guilt that pulls at my heart when I let the memories of those months sneak up on me.

All I can do now is make it the best I can for David. right now that involves keeping him comfortable which involves keeping him entertained, washing his hair in the sink and sponge washing his body... not an easy thing for a 13 year old, keeping him entertained and comfortable, changing the bandages and re-wrapping the ace bandages several times a day. It is good to be able to help him, to be able to make him comfortable. I think that was one of the hardest parts of his injury is knowing that I couldn't fix things... I am the mom... I am supposed to be able to make things better... I couldn't fix this... I had to sit by and watch during painful bandage changes, surgeries, IV placements that seemed to need to be done all the time because his PWS veins couldn't hold an IV for more than a few days... even the central line he had placed had problems. Its all a very helpless feeling to not be able to fix things.

When David was in for one of his many surgeries and I was waiting in the surgical waiting room for word of how he was doing.. all by myself because Dave was home with the other kids... I picked up a magazine that was laying on one of the tables and started to mindlessly thumb through it to pass the time.. on one of the first pages I glanced at there was a small prayer at the bottom of the page that jumped out at me. I read it and the tears just rolled down my face.. I tore it out of the magazine and for the last 4 years I have kept it in the little window in my wallet that is supposed to hold my drivers license... it reads...

Dear Lord,
I need your peace today.
I have crooked places that need to be made straight and rough places that need to be smoothed.
I am facing mountains I can't climb and valleys I can't cross.
I need help.
I release into your hands all the worries and anxieties and struggles of my life.

The jagged little piece of paper is worn now from all the times I have taken it out to read it. I don't know who wrote it, but it was in the right place at the right time for me and has given me much comfort over the struggles of the last 4 years. It had been awhile since I had taken it out to read it, but while David was in surgery earlier this week I remembered it and took it out one more time.
I thought I did pretty good when he went into the OR this time.. I gowned up and went in with him and stayed until he was asleep. After I left, I felt ok and decided I would use the 2 hours he was going to be in surgery to go take a shower and have something to eat. Whenever David is scheduled for surgery and can't have breakfast because of it, I don't eat either... I always wait with him... I just don't think its fair for me to eat when he can't... I also think it makes his wait a little easier to know that I am hungry too!
Anyway... I went back to the room and gathered my bag of shampoo and soap, clean clothes and my towel and headed down to the 3rd floor to the locker room to take a shower. I figured once I was showered the cafeteria would be open for lunch and I would go grab a bite to eat. I opened the door to the locker room and there was the cleaning lady with her cart.. she looked up and pointed her finger at me and in with a heavy accent said "Locker Room is closed!" So I told her I just needed to take a shower and she shouted back at me " No, Locker Room is CLOSED!" Come back in One Hour!!" That is all it took... I turned around to leave and the tears were running down my face and I couldn't stop. all I wanted was a hot shower... didn't this woman know that I hadn't had one in 2 days and that my son was in surgery? I went into the bathroom and had a good cry then headed up to the 9th floor for some lunch. Then I went back to the locker room and took my shower.. By the time I got back on the unit, I on;y had to wait for a few minutes before they came to get me to take me to the PACU.
In those few minutes before I went to the PACU, I remembered that little piece of paper in my wallet and took it out to read it again.... I gathered my self together and put a smile on my face for my son... my hero... the kid who has been through so much and keeps bouncing back with a smile every time... His PACU nurse greeted me with a story of how he woke up smiling... I wouldn't expect anything different.

If you have gotten this far, thanks for reading today...
~Vicki