I spent the best part of my 20s living by the mantra of ‘sleeping’s cheating’, choosing to stay up and party the weekend away without a care in the world. I always joke with my friends that no matter how many late nights you had when you were younger nothing prepares you for the forced wakefulness of parenthood.
Nowadays, sleep evades me for totally different reasons. I’ve not slept a full night for around 18months (more than 6 hours in a row). Pregnancy, newborn and a teething baby as well as the thoughts, scenarios, conversations and arguments I’m having with myself and others about Jack’s relapse. Given the sleep deprivation and the fact the baby is currently sleeping, I should be in bed too. I need to make sure the wheels stay on so this blog entry is short.
My mind races with questions;
I wonder whether we will see any new side effects?
Will he be able to go to school normally?
How will we both manage work, business and other interests?
How is it all going to effect the baby? Can I get her weaned from breastfeeding in a weekend without causing her psychological damage?!
What are we going to do about our holidays?
Shall we buy a new car that’s easier to get in and out of?
Are we right to adopt this ‘crack on’ approach or are we not being serious enough about what it all means?’
Has that kid at the farm with the rosey cheeks got ‘slapped cheek syndrome’ and if he has will Jack get it and will it stop him from starting the cycle?
Could we have done anything to stop it from reactivating?
I could go on.
If you have thought of a question the chances are I have too and have probably googled it at some point. One that has crept up a few times is whether LCH is hereditary (meaning passed through the parent’s genes). No, its not. We don’t need to get the baby tested or anything, there have been some cases of family members with the same diagnosis but we are talking about a rare disease. 4 IN A MILLION.
We have used this fact to put a positive spin on the situation;
“Wow Jack; 4 in a million, do you know how SPECIAL that makes you?”
The truth is, kids his age want to fit in rather than stand out, we need to help him understand that it’s OK to fit in and stand out at the same time.
Back to task ahead, the bags are packed (overnight stuff sorted ‘just in case’).
It is a strange feeling to want a day to never come but hurry up at the same time.
We get to taste our ‘new normal’ from tomorrow and we can start the countdown to ringing the end of treatment bell, something which Jack is really looking forward to.
Let the battle commence.