Dear Mom of the Child with a Chronic Condition

Hey Mama,

I was there when you were worried as your child struggled with those early symptoms. Maybe it was something small. They just caught a virus and it will run its course. Or maybe they ate a few too many sweets over the holiday and their little body is just trying to get back to normal. Or maybe they need an adjustment in their diet? Do they have an allergy or intolerance?

I was there as you watched your little one lose their energetic personality & lie on the sofa, falling asleep as their siblings played (quite loudly, I might add).

I was there when you noticed the bones showing through their shirt or as their clothes started to hang off them. Why were they losing so much weight? When did they get this thin? Something's not right.

I scrolled through the articles with you. What was happening to this precious little body that you've been nourishing?

I breathed a sigh of relief too when the pediatrician on duty at urgent care was as warm and kind as she could be. I wanted to give her a hug too when she got right to work figuring out how to help your child.

I stood with you in the lab as you tried to comfort your nervous child before their first blood draw. (I'm glad they didn't know then just how many needles would poke those arms over the next few years.)

I listened with you as you received instructions for *specimens* to be collected at home. I also walked in with you as you handed the collected *specimen* to the lab technician. (I'm glad you didn't know then just how many times you would collect such samples over the next few years.)

I felt when that burden lightened just a bit as you realized you might just start getting some answers. You still scrolled through some more articles at night, but you didn't have quite so much panic as before.

I went to that specialist appointment. Her compassion & understanding helped make the questions not quite so overwhelming, didn't it?

I helped you prepare the special drinks that were required for procedure after procedure. Getting a young child to drink all of that was a seemingly insurmountable task, but I was there when you watched with amazement as your child met the challenge.

I was nervous, too, those mornings. So early. The staff was friendly. They brought in stickers & games & markers & gave your child the opportunity to ask all the questions. That mattered. That warmed your mama heart to see your child speaking up & relaxing with these perfect strangers.

I watched the bed rolled away to the procedure room with your little on nestled under blankets. Trusting that this early morning would give us still more answers.

I was disappointed too when it didn't give the conclusive answers and that more tests were needed. The next one more scary than the first.

I worried too about how much all this would cost.

I called the insurance company, too. They denied the claim for that first medication, the appointment with the dietician, the next medication. I sat on the phone, filled out the appeal paperwork, & waited. Why is all of this insurance stuff so confusing? I opened the mailbox to another denial. (I'm glad you didn't know then just how many times that would happen.)

I watched as you encouraged your child to drink the contrast liquid. Please don't get sick, you pleaded. And I breathed another sigh of relief with you when the technician pleaded with the radiologist to let them be done with drinking that last bottle. Your little one was underweight, so they let them off the hook.

I walked with you down that hallway, placing all of your items in a locker. No metal. Not even a glittery shirt. Nothing to throw off the test.

I held her hand with you as you followed that kind technician into a tiny room where the large machine would nearly swallow your child. Who knew MRI machines are so often kept in mobile units to be moved around as needed?

I squeezed that little right foot, the only part I could reach, in between rounds of the test, trying to reassure them that you were still there. Each set of images seemed to take forever. Please be still so they can see what's making you so sick.

I read the emails, logged onto the patient portal, tracked the test results, scheduled the appointments, did the research, carried the load with you.

I have tirelessly found recipes that are supposed to help this chronic condition.

I have advocated. I have held the hand. I have worried.

I also marveled at this child's maturity, fortitude, & spirit. Yes, there are moments where the nerves are still a bit frayed & the fatigue catches them off guard. But this child has grown in confidence. They speak up for themselves at appointments. They have learned that God doesn't make mistakes. They have learned to pray through the needle pokes, through the IV placements, through the dose of truly foul-tasting medicine.

And that has grown your own faith.

You & I know that chronic illness is often unseen, unnoticed by most people. You & I, we see our child's struggles, notice the hills & valleys of their condition. We worry during flu season, knowing this child is immunocompromised. Knowing that a case of the flu will set us back months on the journey to "remission."

So, chin up, Mama, because all of us who parent a child with a chronic condition are all--

Cheering you on!

P.S.- I'm keeping track of our favorite Anti-Inflammatory/Chronic Disease-Friendly meals over at this post.