My last few months were spent being pounded by monster waves in this beautiful and at times ferocious sea of life. But I have, at last, found calmer waters, have surfaced for air, and am back at the keyboard.
Thank you to all who sent healing prayers for my little one and hang-in-there prayers for me.
After 5 emergency room visits, 28 days of hospitalization, countless “pokey things” (e.g. any procedure in which a needle is used), too many Xrays, 3 bone scans, 2 MRIs, 2 surgical bone biopsies, one unnecessary picc line insertion (inserted and removed the same day), a terrifying incident in which we learned Jadyn is allergic to morphine, and more hours of excruciating pain than any toddler should ever ever ever experience…
Jadyn is doing really WELL!
No more IVs or Xrays. No more wheelchairs. She is back to her happy, dancing, skipping self and has not had any pain at all since her recent diagnosis (a super rare inflammatory bone condition) and treatment. She is doing so well, she started school this morning, and she’s one happy little girl.
Actually, Jadyn remained happy throughout this entire experience. I, however, with my grown-up fears, judgments, doubts and, at times, RAGE was emotionally and spiritually exhausted after months of mis- and missing diagnoses. I focused on maintaining an outward expression of parental calm and faith in the Divine, while inwardly fearing that I might drown.
Through it all, I learned some great lessons from Jadyn’s awesome little self.
One night around 2 a.m., Jadyn’s pain medication wore off (again) 30 minutes before she was due for another dose. She cried and cried and repeated “It hurts too much” over and over while we waited for the nurse to hear back from the doctor with authorization to give her more medicine. Watching any child suffer is excruciating, but when it is your child and she is turning to you for relief? There are no words to describe that. I silently begged God for mercy and I tried to be strong for her, but I couldn’t hold back the tears, and when she saw that I was hurting, Jadyn forgot about her own pain for a moment and said to me with absolute certainty, “It’s going to be okay, Mommy.”
She said it like she knew something I didn’t.
The morning of her (2nd) bone biopsy, she emerged from general anesthesia (with all those wires still connected to her), opened her eyes and smiled at me. Her first words: “Do you think I could go to the playroom today?”
The following day a physical therapist came in the room with a miniature walker. I’d seen one of those (the adult-sized version) plenty of times, and so had Jadyn. My 84-year-old mother has one that she uses when her arthritis and fibromyalgia get the best of her.
Did I mention Jadyn is 4?
She was pretty excited to get her hands on the thing, but I was demolished by it. I had to leave the room for a minute to pull myself together. I interpreted the walker as a symbol of defeat. I feared that whatever the monster was that was crippling my daughter was winning the battle, and this little contraption looked to me like the monster’s Iwo Jima flag.
Jadyn had no such misconception. She saw the “crutch” for what it was–a chance to run again. Here she is taking it for a spin for the first time:
It occurred to me as I watched my child limping through the halls of Children’s Hospital with her new found freedom, that I was watching with dread and self pity a scene another mother might be begging God to witness. My daughter’s “curse” could be a wheelchair bound child’s blessing. And, even the wheelchair bound child’s “curse” is a blessing many the mother of a terminally ill or deceased child would give her own life for.
Jadyn’s name means “thankful.”
That. Says. It. All.