Once upon a time, I used this blog like a therapist. I wrote, I processed, I released and I healed. This journey we’re on is full of highs and lows and the ride between the two often leaves my stomach in knots. Writing helps me unravel those tangled up feelings. Unfortunately, we’re at a point in life where writing could actually do more harm than good.
Willow’s on the verge of turning 8. Her speech is exploding and her opinions are plentiful. Her stories are no longer mine to tell. The same goes for my older two children. Ones a teen, the other’s a tween. All three of my kids have a lot going on in life and don’t need or want the world knowing all the details.
Don’t get me wrong. I can still write about some things. I know many of you pray for Willow and want to know how she’s doing. So here’s an update:
After 4 years and countless crazy tests, we can now say with certainty, Willow does NOT have celiac disease. This news is VERY surprising considering we’ve twice been told by two different pediatric gastroenterologists that she likely has it. A very expensive genetic test is what finally put the issue to rest. Willow does not have the two genes most often associated with celiac patients. That means her chances of ever getting celiac disease are less than 1%. Insane.
On a related note, Willow’s wonky blood draw results show she’s experiencing inflammation of some sort. Willow’s gastro doctor thought it could be indicative of an autoimmune problem and told us to bring it up with her endocrinologist. Don’t you love all these big, fancy words?
Flash forward a few months and we’re still trying to figure out what’s going on in Willow’s body. We do know that Willow’s hypothyroidism is due to an autoimmune disfunction, but that isn’t explaining the elevated numbers we’re seeing in her blood draws. Willow will get another dreaded draw in 3 weeks. Needless to say, all the needle pokes have made my youngest fearful of doctors. It all sucks.
Other than the doctor drama, Willow is loving life. After a year of school at home, she got to attend in-person classes for 6 weeks this summer. In a building full of faces, she was the only one to wear a mask. She’s awesome like that. Enough said.
Oh, how I’d love to keep writing. My mind is full, my heart heavy and my soul, lonely. This past year and a half has been hard. I keep looking for the light at the end of the tunnel. While I can’t see it yet, I am grateful for the radiant light this girl provides. She and her siblings are what keep me moving forward.
Thank you for reading. Thank you for praying. And thank you for loving my girl. I promise to keep this blog updated when I can. In the meantime, know that Willow is living her best life, playing with her precious Play-Dohs, belting out Kidz Bop tunes and yelling “it’s called science” at inappropriate times and places.