Celebrating From the Sidelines

Yesterday was a big day - the end of Julia's first year of preschool!  In the midst of all of our hard circumstances, Julia has been a pure joy - bringing sunshine and silliness to each day.  Don't get me wrong, she's not perfect by any stretch, but her spirit has been a huge blessing to our whole family and we are so grateful to get to have her as a member of our family.

Yesterday also turned out to have some unexpected hard in it.  I hadn't really thought about it until I dropped Julia off, but yesterday was also the graduation for the 4 class.  I realized it as soon as I saw some of Jonah's classroom friends and their moms dressed in their cutest casual clothes.  These sweet friends are marking a big milestone and we celebrate with them from the sidelines, not able to be part of the festivities.  Now, I know that some of you reading this are the very people who looked so cute yesterday, and I hesitate to write this, least you feel badly - I really am so excited for you and your children to mark this moment and start the new adventure of kindergarten next year.  I just was unexpectedly sad when I realized that Jonah's buddies really are moving on without him - just another thing that cancer has taken away.

Instead of graduating pre-K, Jonah was at the audiologist.  You may remember that a common side-effect of one of the chemo drugs Jonah had is hearing loss.  We have seen a bilateral high-frequency hearing loss in the last few audiology checks.  It appears, that for now, the loss has stabilized - but based on where it is at, the audiologist is recommending hearing aids for both ears.  Another accessory, compliments of treatment, that we don't want.  I'm not actually sure what decision we're going to make right now - we don't really notice this hearing loss impacting Jonah's day to day and we're not sure we want to add another thing to make him "different".  Equally, we don't want our baggage to get in the way of giving him the fullest life he can have.  Because we feel like we can, honestly, we'll probably "kick the can" on this decision until the fall.

And so I am glad for today - just a new normal day - not a day laden with all the things we're missing out on while simultaneously being given unwanted accessories.  I guess that these are our new peaks and valleys of this journey.  Right now we're not governed by counts and chemo schedules - we're walking out the landmines of unexpected in normal life and seeing lots of specialists.

FACT:

Pediatric Cancer
     * ~ 4,600 children and teens diagnosed each year
     * ~ 28,000 children living with this diagnosis in the US
     * 232 known organizations which together raise ~$15M/year

ALS Association (Lou Geherig's)
     * ~ 5,600 new cases diagnosed each year
     * $138M raised in 2015

Cystic Fibrosis Foundation
     * ~ 1,000 new cases diagnoses each year
     * $3.2B raised in 2014