First of all let me say to our friends in Alabama who are stuck inside with ice, Chloe and I started out the door this morning and one lady that the front desk said be careful it’s freezing out there. The other lady said, “It’s not freezing, it’s 18 degrees. Tomorrow it will be -3. That’s freezing!” I told her I thought it was exceptionally cold. It literally hurts to breathe!! Chloe and I often will cover our mouth up when we are waiting for the crosswalk to change. Thank goodness, we only have to walk across the street!!
Years ago, a sweet friend gave me the book entitled A Graceful Waiting. She actually gave it to me when I was in the middle of waiting on this test result and that result with Chloe. Waiting is hard If you ever find yourself in life in waiting…whether you’re waiting on medical tests results as I often find myself or whether you’re waiting on God to move in ways you cannot begin to fathom I highly recommend this book. And this is exactly where I find myself today…waiting yet again!
I find myself frequently having to remind myself when there’s nothing more that you can do God’s deepest work has just begun. I sit here after two long days, and remind myself of things I read in this book. I am fully confident that God is doing a deep work in our lives!! My job continues to be to press into Him and await the transformation that is happening!
We have had a full day yesterday and a half of day today filled with hospital and medical staff. As I watched a couple entertain a toddler today, I was grateful that Chloe wasn’t a toddler! I’ve been there and done that with a toddler on more than one occasion and it is hard! But…as I discovered today…it’s still hard to leave your 14 year old child in the hands of medical professionals.
Yesterday, we spent six hours with numerous doctors. They each play a critical role in the care of these children. They each look at different areas of your child’s health from someone as simple as a nutritionist to someone as complex as a Director of Center of Gene Therapy. At this point, they haven’t told us anything concrete. There were numerous assessments of muscle strength and neurological exams. There was numerous lab work that was done. The lab even had to call the doctor due to one lab test they weren’t even sure how to draw! And other than a CBC and one other lab, not one of the lab work requests even came close to ringing a bell. I’m pretty sure if I even looked them up on the computer I wouldn’t understand the information!! But I haven’t even tried to look them up! Lesson learned a long time ago, it’s definitely not worth the stress and trauma you put yourself through when you do look things up. So…I just go through life with the information I need to know at the time! That philosophy doesn’t always prove beneficial but for the most part, I find it the least stressful and best way to work.
One concrete thing we did learn…Chloe is indeed a Manifesting Carrier of DMD. Even when we came here, there was apprehension about the possibility of this doctor telling us Chloe had been diagnosed incorrectly. However, very quickly, he put that one to rest. He says there is no arguing the fact Chloe’s diagnosis is correct. However, he was very quick to tell us he was pretty confident that we had missed something along the way. He pulled out her muscle biopsy and would explain things like no one had ever done before. Sometimes I would get this glazed look in my eyes and he would say do you understand? I would shake my head know and he would start drawing pictures. Let me just say the pictures helped more than any word he said. I couldn’t even take notes because I couldn’t even begin to write most of the words he used down. But I would say did I understand you to say _____? And he was very sweet to listen to my take and let me know if I had taken information in correctly or not! So…we made a good pair! But he would point to pictures and explain and say this is indicative of muscular dystrophy. Then he would point to another picture and explain and say this is not indicative of muscular dystrophy–this indicates something else.
For the sake of time and my typing, I won’t even begin to explain what he thinks is going on. I will wait until we find out if his inclination is correct or not. I will say that if his inclination is correct, this has the potential to be life changing information.
The cardiologist that saw her couldn’t believe she wasn’t taking any heart medicine. Not sure exactly what raised that concern in her. The only thing she told us yesterday was she didn’t have adequate tests to let her know what she needed to know about Chloe. So today, Chloe had a very detailed 2 hour heart test done. That was a bit difficult from a mom’s perspective to watch people I don’t know in a hospital I’m not familiar with roll her away! Just killed my mama heart to say the least! I hope I’m as brave as Chloe one day! But I’m pretty sure I haven’t gotten that brave yet! She just does phenomenal. Sometimes I can look at her and know she’s worried or upset because her face will get really red!! But she never says anything but I’m okay!
So after a stressful yesterday and a stressful morning, it was nice to have a relaxing afternoon. We tried to get some school work done…both of us. But folks, our brains just won’t focus. I’ve tried a gazillion times to write this post. I keep getting distracted. My brain just won’t focus. And neither will Chloe’s! So…we honestly tried to do our schoolwork…but this is what it turned out looking like…
I would love to tell you this is what our faces have looked like all week, but that would be a misconception for sure! It has not been all smiles for sure! There actually have been pretty few smiles yesterday and today! So I think we needed to smile some today!!
Tomorrow at 1:00 CT, we will meet back with the doctor and get results from all of our medical testing! So, I can definitely say apprehension abounds! But in the same breath I remind myself God is in control of all things! If you think of us, please say a prayer for us and for Chloe. Chloe is definitely struggling with the idea of “something else” being wrong with her. So just pray for us that a peace that passes all understanding will wash over us! And pray…that tonight and tomorrow…we would wait gracefully!! Thanks for journeying with us!
