Brain Mutterings

I was awoken by Molly at 3.47am this morning.. it is becoming a pattern.. This morning was because her palm was itchy. She was not pacified by my saying it's good luck and she will come into a lot of money! A bandaid seemed to do the trick.
BUT it had woken Jasper up, so he ended up snuggled up in my bed.

As I looked at his little blonde head snuggled against me, and listened to his rhythmic breathing, I got to thinking..
Never a good thing to do at 4am!

This disease, this FA thing that has invaded our lives, it's nasty. It's vicious!
I picture all of the FA mums (and moms), and all the FA Adults - all in the same lottery. We all have a ticket, we just don't want our number to get called up.

It ain't any prize we want for our kids.

Life is fragile and fleeting at the best of times, but here I sit with my 11 1/2 year old, on the eve of his annual bone marrow biopsy, well, the fragile and fleeting part is almost too real.

I always tell people that Jasper is healthy, and there is nothing to worry about..
In reality, I worry. Constantly.
It might be a background thought, or it might be a focus for me.. It depends on the day and what is happening medically with him, but the worry and the thoughts are always there.

I could lose him any time. This disease rages inside, looking for a way to express itself. So far, we have been lucky. Decent blood counts, no changes in his marrow. Unfortunately, it seems it is only a matter of time before this changes.
The older he is does not mean the better it will be.

Bone Marrow Biopsy time always sends my head in to a spin. I know it will be ok (there is no alternative for me!), but I am still stuck with this dread in the pit of my gut. It doesn't go away until results come back in a few weeks time.

Just when you get comfortable and the headspace starts to clear, something else comes up to throw you for a loop. Someone passes away, someone is going into transplant, someone new is diagnosed and joins the FAmily.
While we are a special group, you don't want new people to join. You wouldn't wish this on anyone - not even your worst enemy.

Just remember, love those close to you. Love them with all you've got. It could all disappear in the blink of an eye.

Brooke