Time to Start Cleaning out the Compartments

Hello From Heeth’s Mom,

Happy New Year and I hope everyone was able to spend some restful time with their families doing something that makes your hearts happy. Our holiday at home was all I could ask for: waking up, wearing pajamas, watching Keene and Heeth open presents (with Tae Tae on facetime,) and playing a family game of football in the yard.

We even were able to make a voyage to the Poconos and spend time with the Kleins! This was a light that kept Heeth going for much of his inpatient treatment: the idea of getting together with his cousins and family. Although our accommodations did not quite match the description, the kids were just elated to be together!

One thing that I did recognize during the holidays, is how much I miss my dad. Most days I found myself weepy when I talked about him. It has been just over a year since he passed and I am beginning to understand that there is a lot that still needs to be processed. Some friends have said to me when hearing about our past few years, how strong they think I am. But in truth, what happened was I put all the unfathomable pain/fear into different compartments, closed these compartments up tight and continued on so that I could help to get Heeth better. When finally getting a chance to be alone with my sister or brother in law over the holidays, I found myself crying when trying to say anything and explaining to my sister “I am so sorry, I just don’t hang out with people often.” Knowing your dad is dying, with your son critically ill, in isolation during a pandemic.. is a lot. I am going to continue to try my best to open up these compartments slowly and process things so that I can best support my family.

As Heeth continues to recover, we are slowly trying to introduce activities that he has always loved. When Heeth was in treatment and different specialists would come in, I often found myself explaining to them all about who Heeth really is (before being sick) and it sort of felt like this out of body experience talking about your child and then seeing your child in the condition he was in at that time. One time, I mentioned to a team member (when Heeth had sepsis) how Heeth loves skiing and he can’t wait to get back to it! She looked at me and said, it may be a very long time for that to happen. I knew this may be true, but of course it was hard to hear.

His lead doctor, who always did everything in her power to keep him motivated, had heard Heeth loved skiing. She brought Heeth in a trail map from her weekend trip and gave it to him one morning while he walked the halls with me. Heeth was so excited to see where she skied and decided to share his excitement with his sister. Heeth’s doctor told Heeth when you are better let’s ski NH, Vermont, Montana, and then France!

We finally got a little snow in New England, so we took Heeth up to the mountain. I told him we will only do greens and that it will be a “mom” ski day (meaning easy and slow.) I could tell he was a bit apprehensive at first when we got there. However, within 2 runs he was zooming, turning, ski stopping, and smiling. He is now planning other mountains to tackle this season, so it looks like I will be back to hot chocolate duty:)

Thank you all for everything you have done for our family. We will be heading to clinic tomorrow afternoon and I am hopeful we may be able to taper a few more medications.

HUGE HUGS FROM HEETH!

With Love,

Molly