Friday, August 2, 2013

It's called parenting Liz ...

Its called parenting Liz....

That's what Jack's dad said to me the other day when he came over and Jack was asleep at 5 in the afternoon.  He was angry that I was letting that happen.

Jack has been living the life or riley (I was never quite sure what that meant) this summer.  He plays xBox late with his friends.  He eats at all hours, he has grown 4 inches and six months and no sign of stopping, and he naps when feels like it.  He has no schedule. 

Jack's first week hospital stay was at nine months.  I have lost count of how many time he has been admitted since.  His longest stay was two months.  I do not know how many pic lines he has left the hospital with.  The care of which is awful.  He probably never should have been allowed to go home with the Picc Line.  He has had one picc line infection, that lead to blood infection, he was septic and I thought for sure I was gonna lose my son that first night.  He does therapy everyday, he has been on crazy no fat diet.  This is the life of child with Cystic Fibrosis.  Some go a longtime without these complications, Jack has not been so lucky.  Through all of this his he has shown the strength and courage that I am in awe of.  He never feels sorry for himself or asks why me.  He, along with his two sisters, is my hero.

Yelling at Jack for napping is not an option for me.  He was hospitalized this winter again for pancreatitis, and to add insult to injury, we received some bad news about his lungs the following month.  So if this is how Jack handles his CF, taking a month off in the summer to play xBox, to rest, to eat and grow so be it.

There is no manual for this.  What to expect never covered what to do if your child is chronically  sick.  I consider Jack one of the most capable people I know.  This will play a very important role in his life going forward.  I hope and pray everyday I will be fortunate enough to see what Jack accomplishes as an adult.  I love him with all my heart, and yes if at 15 he wants the summer off... yes Jack you get the summer off.

My youngest Kate is away at camp. She is the most creative child I have ever met.  She reads anything she can get her hands on, knits, sews, sings, performs.  I miss her with all my heart.

In two weeks, my big girl Sam who I could not be more proud of, leaves for Bucknell.  I told a close friend the other night whose daughters are young, if I could do this all over again, I would.

Missing my baby who is at camp for the month and dropping my Sam off at Bucknell is tearing me apart.  So yes, my Jack who is here with me, who has been fighting for his life since he was a baby can have the summer off.  To his Dad I say yes this is parenting.