I recently moved to a dead zone. No cell service. Not one bar. Nothing. Nada. Zip. Most days, this drives me nuts. Today, I find myself thankful.
I’m waiting for a call from the pediatric gastroenterology office. They need me to schedule an appointment for Willow. I don’t want to. I really don’t want to. But, at some point today I know I’ll hear the little ding of my phone signalling a new voice mail. I’ll listen and then I’ll head to town to call them back.
I just don’t understand how we got here. Appearance wise, Willow is a picture of health. Her pediatrician even commented how great she looked at her 3 year check-up this week. The blood tests her doctor ordered were routine. The results? Unexpected.
Willow might have celiac disease. Might. She doesn’t really show any symptoms other than constipation and slow growth, but I guess that can be the case. Her doctor didn’t suspect celiac at Willow’s appointment, but thought we better test just in case, especially since individuals with Down syndrome are at an increased risk of developing celiac disease. Still, I never expected a positive blood test.
So now, here we are, waiting for a call from the GI doctor who wants to see Willow and discuss the results. I’m guessing he’ll call for more tests, more pokes, more tears, more pain. I don’t want my baby to go through all that. I don’t want to get that call.
I know it’s not the end of the world if she does have celiac. It’ll just mean a diet change. But, it’s one more thing. One more thing Willow has to deal with. One more doctor to add to the list. One more obstacle in the way of life. Why can’t she just live life?
Sometimes it just gets overwhelming. We were just starting to feel comfortable with Willow’s secondary diagnosis of Chronic Benign Neutropenia (even though her blood count this week showed her infection fighting white blood cells are still virtually non existent) and now this. Hasn’t she gone through enough? Isn’t she battling enough? Enough is enough!!!!
Yes, this is a pity party. No need to RSVP. It’ll end soon. I just need a moment. I just need a bloody moment.
Ok, so they called. Between the beginning of this post and now, they called. I listened to the message. I then grabbed Willow, hopped in the van and headed to town and dialed their number. The appointment is made.
I have two weeks to live in limbo, wondering if all the gluten we’re eating is tearing up my daughter’s insides. My husband is choosing to remain positive, hoping it’s all a mistake. I sure hope he’s right. I’d even let him say “I told you so.”
A few days ago, shortly after receiving Willow’s blood test results, I found myself struggling to figure out our new health insurance, schedule some other doctors appointments for Willow and process what was going on. My eldest daughter then walked into the kitchen and asked for help. Inside I was thinking “I don’t have time for this! I can’t handle this!” but I told her I’d help anyway. She then pulled out a book from her Wednesday night bible study class and pointed to a word she didn’t understand.
“The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; Do not be discouraged.” Deuteronomy 31:8
Bella, my dear daughter, wanted to know what “discouraged” meant. I tried to explain, and as I did I felt a lump in my throat. I knew God was speaking to me.
I’m trying my best to not be afraid. I’m trying so hard to not be discouraged. And while I might be failing at the moment, I know God is with me. He’s with Willow. He’s never left us. And in two weeks, I know He’ll be in that room with us, listening to the GI doctor, giving us the strength to face whatever lies ahead.