Please excuse my absence.

kids Jan 27, 2021

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. 

Much love,


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