Tuesday, November 22, 2016

A Good Season

Our little first grader

Get this dear reader - I am sitting in a coffee shop and I am writing to you. Just like old times. Remember back around 2010-2013 when I would write almost every day? In the thick of so much uncertainty about Jack's health, you saved me. I so looked forward to my writing time, my therapy time. Today I contemplated a quick FB update, but then it would either be 20 minutes there in FB land or 20 minutes here. Here won.

This makes me exceedingly happy. Last week I got a nice comment on the last blog post that said "We miss you Jessi, Jon and Jack! I hope everything is okay with the three of you xx." And I realized I haven't written since September and really, haven't told you much of anything for about 6 months! As always, Instagram is about the only thing I keep up with on a regular basis. It is where I post what we are up to more regularly. Lots of cute Jack photos and (possibly) too many photos of my coffee.

We moved into the home designed and built for Jack this August. I gave you all a quick tour and since then we have been making it feel more like home. It has been such an answer to our needs, some we didn't even realize we'd have back when we first purchased our little plot of land. Jack still isn't walking independently and our backs, each and every day, are so thankful to not have any stairs to contend with. Jack can get anywhere he wants (he's a master scooter) and we are loving the simplicity of our space. For a new home, it is still pretty small, but that only helps us on the hoarding tendencies. We are really in love with Jack's One Level - our white house with blue shutters a minute from school.

Just this week marked the year anniversary of Jack's major hip surgery. I gotta admit, it's not easy to see the photos from this time last year. Jack in his body cast is something I never want to repeat. Of all the dozens of surgeries, this recovery was above and beyond the worst to go through. We are still feeling the reverberations of it to this day. Jack is not walking independently, a skill he sadly lost. He also gave up eating. I don't think it's too far out to say that he will become brave enough to take steps by himself again, but it has been really slow going. A sad side-effect of the surgery was losing about 4 inches of bone in his affected hip. That means that walking is that much harder, with one leg so much shorter. Now he has his nifty "lift", but it is still difficult to relearn something that took so long before.

Same with eating orally. Jack has been on a hunger strike since hip surgery. Just yesterday we had our first meeting with a new gastroenterology team here in our town to tackle this big issue. I feel like I need to pause and praise sweet baby Jesus that our small town finally has a pediatric GI team. We spoke with the specialist for over an hour! I have never, in all of Jack's medical stuff, spent a full hour strategizing and discussing each detail of Jack's eating and digestion issues. It was a breath of fresh air to come up with a plan. We have hopes that Jack will become an eater again, but we also have the right team in place to make sure he is getting everything he needs in his tube feedings.

Besides Jack's hip and eating issues, his shunts are looking good. He is seeing PT, OT, and Speech therapists at school, as well as private therapy here and there when we can fit it in. Jack LOVES school like I've never quite seen a kid love school. We happened to land about the best aide we could have hoped for, who dove right in with tube feeding and lesson planning and making sure Jack is with his classmates as much as he can handle. It's pretty special. I don't take any of these blessings for granted. School has been the bright light this year in Jack's life. We are grateful and intentionally soak it all up because we know things may not always be so wonderful. When your medically fragile kid is healthy enough to love school and his team is about the best it could be - you pause and take notice.

Medical fragility is different than special needs. I have been pondering this a lot this year. Not only do our med frag kids struggle with special needs in the typical sense, they are also not guaranteed their very health. As parents, we spend our energies worrying about their very physical health, the next surgery, their next medical life or death crisis. I am fully aware that Jack's health is precarious. I have seen many like him struggle with living, the next breath is not guaranteed. I have been telling my close friends that we are basking in a good season. When I say that, I am talking about Jack's health. Sure his baseline is very different than other kids. His "health" is different, but when it's good, it feels like heaven.

So we take each of these seasons as they come and try to enjoy the good times. I love that we are in a good season (even with the reverberations from hip surgery) and as I used to do, here I am, tears streaming in a coffee shop.

Thanks for not forgetting about us and checking in. We are well.

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Elaine said...

Thanks for the update Jess! Have a Happy Thanksgiving!! 😘

Alisha said...

Thank you for posting, Jessi! I'm so glad Jack is making some progress, but I'm sorry he's taken some steps backward, too. I can so relate to the oral feeding vs. g-tube stuff, but I recognize that Lucy is just 2 and Jack is much older. I pray that he'll be 100% orally fed one day. I love your new house and design style! So glad you have a 1-story now!

Alisha (mamasunshine83)

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