December 18, 2014

May Your Heart Be Light

I woke up this morning around 4 a.m. and smelled burning coffee. I ran to the kitchen to see if the coffee maker had been turned on by accident and it wasn't even on the counter - it was put away in a cabinet for house showing purposes. So I tried to go back to bed while googling about phantom smells on my phone and couldn't get back to sleep after reading about tumors and strokes. But it's probably just my sinuses.

I ended up listening to the final Serial episode and was up for the day. And so we begin Christmas break. The kids had half day and I spent most of it at the school helping out with the kindergarten holiday party that was holy cow crazy loud and busy. I could not wait to get out of there.

This just might be the first year that Jeff and I won't be staying up late wrapping presents on Christmas Eve. Everything is bought and wrapped. I don't know why it's so different this time around- I mean considering the house selling and house hunting and Jeff being gone and the Seattle trips and getting Noah better... on top of school and ballet and work and staying up late knitting teacher gifts. I don't know how I'm still on top of things and you bet I'm checking my list more than twice to see what I must be missing. My best guess is that keeping this busy is helping me cope and keep it together and also the kids are older. Some things do get easier. I'm really starting to notice it. Good timing.

Despite everything going on I do not feel the heavy weight on my chest that I know so well. I feel peace. Even though we were in Seattle last week and now we have to go to back again next week for what I am calling our Christmas miracle for Noah, even though we'll be driving home from the hospital on Christmas Eve instead of celebrating with friends as we'd looked forward to, I feel like everything... is going to be okay. I actually feel happy.

This whole thing with Noah has had me dangling on the edge. Some days are harder than others. I am constantly working through reliving all we've been through before and unearthing past hurts and researching in desperation all over again and confronting my Gigantic Trust Issues. And also being so very, very angry at the whole thing. But thanks to past experience I've been able to read each situation and doctor and get us where we need to be (Seattle) at a fast pace. There's the peace.

The situation is urgent and what we've tried these past few months isn't working. We have a very promising treatment available to us that is both scary and exciting. In the past, medications only hurt Noah. So we found the ketogenic diet and it saved his life, and that has chartered the course of our lives ever since. However, this time around it looks like modern medicine just might be the answer. He'll start infusions of Remicade via IV next week. We're going to get to know Seattle very well in the coming months. Good thing I love that city.

I will always make the choice that is best for my kids and I do believe this is it right now. I am putting a whole heck of a lot of trust in his new doctor (because he has earned it) and to be honest it feels so good to be willing to trust again. Here's to miracles, no matter how they get here.

4 comments:

  1. Praying for Noah, his doctors and this new treatment and all of your family as you have such big things ahead of you.

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  2. I believe in miracles. Praying for a miracle for Noah and for a peaceful and joyous Christmas for you and your family.

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  3. Oh wow. Can't imagine going through all you're going through right now. But so glad to read that you have peace and feel happy. Praying all will go well with Seattle, and the new doctor, and modern medicine. xoxo

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  4. I have Crohn's disease too and come from a family where Crohn'd is rampant. I'm so sorry to hear that your sweet Noah is dealing with this at such a young age. I wish you and yours well finding the treatment that works best for him. It sucks having to go through the process of trying this and that, so I hope the Remicade infusion works and that there aren't any undesirable side effects. Best wishes!

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