Pass The Spaghetti

3 years ago in October, I put Willow’s life in the hands of a heart surgeon.

2 years ago in October, Willow was diagnosed with a rare blood disorder after a leukemia scare.

1 year ago in October, a nasty bacterial infection caused Willow to miss Halloween and spend a few nights in the hospital.

Today, we learned that a blood test Willow had a few weeks ago was likely right and she has celiac disease.

I’m tired of always getting bad news delivered in October. Why does it have to happen now? Why not January? That’s a boring month. It could use some spice. I’m beginning to hate October! Which is crazy because I also love October. I love the colors, the smells, the cool air and pumpkin spice everything. I suppose that’s why my husband and I chose to get married in October. Just to clarify, this is not one of the reasons I hate October.

The bit of good news delivered today is that we will have a good amount of time to say goodbye to our friend, gluten. Based off her recent blood test, Willow’s doctor believes she’s in the early stages of celiac disease. He’s afraid that if he does an intestinal biopsy now to confirm it, he might not see what he’s looking for. Therefore, we’ve been instructed to continue her gluten filled diet for another 6 months. If the blood test still shows signs of celiac (which he has no reason to believe it won’t) he will schedule a biopsy.

This whole thing is a shock to the system. Especially because we never saw it coming. Willow doesn’t have any of the classic symptoms of celiac disease, which is another reason her doctor feels comfortable waiting to do the biopsy. While we are likely damaging the insides of her intestines doing so, he says the damage is reversible once gluten is cut out of her diet completely. He’d rather risk doing the damage than risk having to put her under anesthesia for another biopsy if the first one comes up inconclusive. I guess I agree.

I’m going to use this 6 months as a grieving period. Our family loves gluten. We love pasta. We love bread. We love it all. It’s going to be stinkin’ hard to say goodbye. I’m thinking I might just throw a giant gluten filled party in the end. BYOGG! Bring your own gluten goodies!

Good golly, I’m sad about this whole thing. It doesn’t help that it’s cold, cloudy and gray outside today. Typical fall. Typical October.

Did you know, October is also Down syndrome Awareness Month? I find it ironic because while I’m supposed to be teaching others about the realities of Down syndrome, I seem to find myself being slapped in the face with them. I knew Willow’s Ds gave her an increased risk of celiac. I just thought we’d escape this one. She seems so healthy, after all.

While today feels heavy, sad, even dark, I realize things will look different tomorrow. That’s the beauty of October. Leaves will fall, doctors will deliver bad news, change is part of life. You just have to adjust. And we will.

I will grow to love October yet again…

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2 thoughts on “Pass The Spaghetti

  1. Hi – I came across your blog through the Fargo Forum. Your blog is inspiring and entertaining! A couple of thoughts for you in regards to the gluten issue — It is possible that others in your family are also “at risk”. It runs in my family. Several tested positive without any symptoms. (Consider if you should all be checked πŸ™‚ Also – there are many great products available! You won’t have to “give up” the foods you all love! I won’t lie – it really sucks, but it gets better! πŸ™‚

    1. Thanks for reading, Cheryl! Willow’s doctor told us we should all think about being tested at some point, just as you mentioned. I had no idea you could be seemingly symptom-less and still have celiac! We learned a TON from the doctor today.. and still have a ton more to go. πŸ™‚ Thank you so much for the support!

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