Wednesday, 13 April 2011
No Processing - Just Doing
It seems as though just as I start to find a new rhythm in life things pop up and complicate things for me.
Last weekend what I thought was stress turned out to be a nasty attack of kidney stones.
I have delivered a baby the size of a bag of potatoes without a drug in my body but at the hospital Saturday night I was beyond thankful for morphine.
It was impossible to get comfortable and its as if my body arched uncontrollably from the pain and I'm not sure if the vomiting was from the stones themselves or the pain that they caused.
The entire time I kept thinking I dont have time for this but at that moment it was out of my control and that seems to be something that I am just going to have to get used to.
Where Nick is concerned life seems to be trucking along. He starts each morning with the same question What do we have to do today - unfortunately there seems to be something on our agenda each day, the calendar is not often blank.
Today we met for the first time with the home care nurse and again I feel very lucky to be dealing with such genuinely nice people.
She helped me calculate the dosage of the very important (and VERY expensive) G-CSF medication that will help boost Nick's white blood count and help him fend off infection and she watched as I gave the first of many daily injections. Nick's counts are dropping quite quickly and I now must be extra cautious about germs and infection control, we knew that this was the normal course but sometimes it feels like life is changing so quickly. There is really no time to process there is only time to do. The nurse commented about how organized I was and about how that makes dealing with things so much easier, the fact is that we are going to be meeting with many different people in many different places and having a binder with all the info is ideal.
Tonight instead of clipping coupons I highlighted levels on his blood count chart and refilled the weeks medication dosette. I remembered for a moment that my life is so different but I quickly felt relief at the thought that although what is happening right now is HORRIBLE it wont last forever and I think that all of us will grow and morph into more appreciative, compassionate and empathetic individuals and I know that we will be closer as a family then we ever have before. I think that this disease has made us take note of whats important and let go of who and what is not. It has shown us that there is more kindness in the world then we ever could have known and that some strangers really are simply friends that we havent met yet.
Nick has been given a Wish and for the last week I have watched him dream. His instructions were to dream big .... oh the things that I imagined him wishing for.
In the end he decided that he wants to go to San Antonio Texas to visit the amusement parks, attractions, a Spurs game and eat a steak cooked on the BBQ by a real cowboy.
Now getting birth certificates and passports is on my to-do list - I'm pretty sure that I will need to wish for a vacation to recover from Nick's wish.
As I sit here now, Nick just finished a plate of lemon sole and has now decided that he needs french toast with berries as dessert, Its late but his appitite and taste buds have changed and so I just go with it, I've always been a short order cook but now my kitchen stays open later.
The other day Nick received a package in the mail from his brother Kurt (with the help of his teacher), it contained a letter, scribbled artwork, and a business card for our mechanic that is generally kept in his treasure chest (why I dont know).
It was heart warming to see my child with autism expressing his feelings despite it being because of something that I wish none of us needed to experience.
This disease really is changing us all.