The last few weeks have been bananas.
I haven’t ever missed a newsletter.
I haven’t ever gone this long without talking to you, so today, I muster all I have to write.
Today also marks 20 days at sick kids for our family ( this includes two different surgeries).
I now stand on the other side of what it means to have a child undergo a life-threatening procedure.
I am now a medical mama- I speak like I have an MD, but have very little idea of what it all means.
Having read stories like this from others, I had tended to avert my eyes. It is a hard topic. Something people do not want to think about (a sick kid, but your kids, being sick). I challenge you to read on…..
If you have been following us for a while now, you know we try to keep things light around here.
But I cannot promise that to you anymore.
We will find JOY when there is so much OY- but we are NOT going to shy away from the hard topics, or conversations.
My third child and second son, at 6 months old, has had two operations on his fucking heart! THE HEART! The organ that keeps the rest of the body moving.
I am still in shock and disbelief that this is our story- my story.
He is the warrior- but I am the commander and chief.
I make EVERY single decision.
For him, and his life.
This is perhaps the hardest parenting moments of my life.
I am glad we have passed the operational threats.
But now I am suiting up for the very very very long road to recovery.
This is the “quality of life” shit you hear about.
Yes, I had to stop nursing ( massive teary explosion of sobs).
Yes- Henry is on a feeding tube ( for his vocal palsy).
Yes- Henry has a chest tube in, releasing fluids at rapid rates (it is called Chylothorax) and it’s scary AF.
Henry is in pain- he is medicated to control it, and I say yes to all of the drugs.
His usually sunny, happy disposition, is currently under construction.
I know it’s temporary, and that when we pass his 1st birthday, this will all seem far away.
But for now, it’s every hour, every test, it’s a very medicalized reality.
For a person whose kids were all born on my bedroom floor…this is a totally messed up moment.
Do not get me started with the madness of covid, and racism, and America, and school closures.
I am hopeful for his recovery and will continue to be in the vortex of sick kids.
I am hopeful for all of us, to find moments of JOY in this crazy time.
Thank you for your Prayers, wishes, thoughts and so much more. It means the world.