From Type A to Type B (or maybe just A-)

Hello From Heeth’s Mom,

It’s crazy to think that a week from today will be Christmas! In my last post we were just preparing for Thanksgiving. We hope everyone enjoyed their holidays and are looking forward to more celebrations in the next few weeks.

Heeth and our family were able to spend turkey day in Maine with our cousins, uncle, and family: Heeth was absolutely thrilled to get to see everyone and was feeling pretty well! Our Maine family was amazing and made us feel so at home, bringing back the COVID style set up to help keep Heeth healthy. We are so thankful to have such an understanding and loving family: that knows we have come so far, but still have challenges we face on a daily basis.

Anyone that knows me, knows I tend to be “type A.” I like a plan, thrive on routine, and my kids are carbon copies! Ever since Heeth was sick, our family has had to shift and change plans and expectations at a second’s notice. It is difficult to plan much because things can and still do change very quickly at times. I often feel like all I do is let down my kids: it really can stink at times.

We had all been looking forward to my mom and sister finally getting to come out to visit: both to see a musical Keene was performing in, and to be together for my dad’s birthday. The kids had been talking about this and getting excited for weeks. A few days before they were supposed to arrive, I took Heeth to Dana Farber for what I initially thought was a basketball injury, that ironically had a rash develop with it. When the doctor came in, she immediately said -That’s most certainly shingles and given Heeth’s compromised immune system we need to admit him and start IV antibiotics immediately.- Heeth had been crying out in pain and was hunched over: we had no idea that when immunocompromised, your body can reactivate the chicken pox vaccine that Heeth received prior to his transplants! We also didn’t know how dangerous shingles can be for someone like Heeth.

I was completely unprepared for a hospital stay, not to mention one where we were kept in total isolation. Todd quickly came down to bring us supplies. Knowing this wasn’t super fun, but that there is treatment that is fairly predictable, Heeth’s anxiety eased knowing he wouldn’t be hospitalized for over 6 months for this treatment. My plans for getting my house cleaned that afternoon after work, preparing things for Keene’s musical for her, cleaning all the fresh produce I had quickly bought before work, etc. all went away and instead we got set up in our new isolation room.

Heeth, looking at the bright side, said “At least we have a great room, I get to play Roblox, and it’s fun to actually eat while I am in the hospital!” (No NG tubes this stay!) Heeth’s buddies quickly joined him online and Todd facetimed us to watch Keene’s show. However, we were likely not going to be home in time to welcome my mom and sister and may not even be home to see them.

A few days into our hospital stay, we were happily surprised by the team when they told us Heeth can go home!! He can visit his Tae Tae and Auntie Meg and see his sister’s musical (with long sleeves) because his organs are doing okay on the treatment. This was a couple days earlier than we expected, and I do, once again, think it was my dad intervening to make sure we could all be together:)

So although my house was not clean, much of my produce didn’t last, and I wasn’t able to get everything ready for Keene, we all got to celebrate and spend time together. This whole situation, the ups and downs and ups have helped me to be a bit more flexible, perhaps even go from my type A to type B:) It’s the moments that matter, and I have realized spending it with the people you hold in your heart is much more important than getting eveything perfect.

We hope you all have a nice holiday season and try not to sweat the small things: but rather enjoy the moments!

HUGE HUGS FROM HEETH!

With Love,

Molly