Throwback Thursday: Naming the disease that made my Daughter hate shoes.

We had been waiting for over an hour in the reception area. My pregnant belly feeling so heavy topped with the wait of my toddler, straddling the bump. The double stroller at my feet with two cranky little people strapped in, the floor around us littered with cracker crumbs and Gerber puffs. I thought about cleaning it up but couldn’t bend over enough to do so. I was the poster woman for the stereotype of WV, barefoot (flip flops in January was close enough) and pregnant, babies were literally everywhere, inside and out. It was me against this tiny gang and my patience, as well as the snack supply, was dwindling.

We were at an Orthopedic office. I forget the doctor’s name, dismissed it, almost as quickly as he dismissed us after our consult. I did not dismiss the unsettledness, the restless aggravation or the painful cries of my daughter. This is why we continued to wait.

We moved to a room that barely fit the double stroller, let alone me and the child riding on my belly. Another hour dragged on. In came the doctor, I breathed a sign of relief. Finally, we were on the verge of answers. The anger that was about to strike me was unprecedented. The heat in my face, the glare of my eyes, I can still recall it all as this professional walked into the room, took one look at the way Katie was sitting, an ariel child’s pose of sorts, sighed and said, “Oh, she’s fine.”

To which I replied, “Excuse me?”

“If she can sit like that, her hips are fine. It is not an ortho issue. You are free to go.”

While it may not have been an ortho issue, she was indeed not fine.

Let’s rewind.

A few weeks prior, I had been getting Katie ready for the day. I unzipped the one side of her fleece sleeper and bent her other leg up to remove it from the footie pajamas. As her knee bent to her chest, she cried. Actually, it was more of a painful, suck your breath in, scream. My initial reaction was that her hip had somehow cracked or popped or had become dislocated. We rushed to the ER, where she was strapped down, sobbing, taken for X-Rays while me and her sisters watched her suffering through the glass. No siblings or pregnant bellies allowed. The X-rays showed no dislocations. They didn’t really have an answer other than, give her some Tylenol and follow up with the Pediatric Othopedist. The ultimate road to nowhere had begun.

From this moment on, Katie’s temperament changed. My always delightful, sweet-spirited baby was different. She refused to walk anywhere. Constantly crying to be held. Shoes were a thing of the past. When I did manage to get them on her, she would throw them with all of her might, out of the car, out of the cart, across the room, anywhere. It was winter and she was playing a very dangerous game with frostbite. She would scream at the site of the car seat and for the entire time she was forced to be in it. Soon she began walking with her knees bent and hunched over, like a tiny Yoda.

I called the doctor, “She’s fine”, they said.

There were no other symptoms, no fevers, no rashes, no redness, nothing but a toddler who cried more and more each day, didn’t want to walk, or sit in the carseat and protested shoes. To me those were symptoms.

So, I called the doctor again. Still fine.

While having coffee with another mom once morning, kids covering every square inch of the kitchen, I broke down. During all of this time, my husband had been at Ft. Benning, completing basic training for the Army. I hadn’t spoken to him in weeks, other than through snail mail letters. I was lonely, alone, frustrated, and basically being told I was crazy, looking for a diagnosis where none could be found.

I remember this breakdown, the ugly cry, all of it. Saying over and over, “Something is wrong, I know it and I feel awful for wishing someone would discover something wrong, but I want to help her!”

This was the day I learned about Birth to Three. It was a statewide system of services for children under the age of three who have a delay in their development or are at risk of having a delay, focused on early intervention. You could refer your own child, if you felt there were things in question. You did not need a medical referral, just a concerned heart. I called immediately.  The women I was about to encounter through this program changed our family. They were my village. My cheerleaders, my team, my supporters, advocates for what I wanted most, help for my daughter.

A coordinator came to the house, “Pick a physical therapist,” she said, handing me a list. How do you pick a person like a fish in the pet store? With your gut. There are no mistakes, no accidents, no coincidences, I never believed this more than after I pointed at the name, Nicole.

She came, she saw, she measured Kate’s legs. She showed us some stretches and exercises to work on. She reccomneded a new Pediatrician. She had some thoughts, suggestions, some workup and blood panel requests for the doctor, but above all, she cared. She didn’t think I was crazy and she stood by me until we found an answer. We became friends. In fact, when I close my eyes and think of the people who have always been there, during single parenthood, over-scheduling, meltdowns, anxiety, indecisiveness, I see her. By my side, with coffee or wine, depending on the time of day.

We did eventually find an answer. Which was followed by an amazing team of doctors and another fabulous therapist. During a visit to my mom’s house, for Katie’s second birthday, she became very irritable. For the first time there were symptoms. She had a fever, her knees were swollen, red, and warm to the touch. We went to the ER. After several hours, we were referred to a Pediatric Rheumatologist. After almost a year of knowing, turns out the little voice was right. Katie was suffering from Juvinelle Ruthemoid Arthritis, JRA.

It has been 5 years since her diagnoisis and she has good stretches with no major symptoms, scattered with tough days. After several different medications, all injections given at home, a surgery and stay at the Ronald McDonald House, Katie’s pain is manageable.  She is able to participate in her life.

So, I raise my coffee mug/wine glass, depending what time it where you are, and give a shout out to all the parents out there, fighting for the well being of their kiddos. Searching for solutions when everyone tells you there is no problem. Pushing on, seeking truth and praying for peace. To those parents trusting that feeling, the go forward and keep looking feeling, on this Throwback Thursday I am saying thank you. Thank you for doing the good work. The work of hearts. Though you may feel small, invisible even, during the journey, I see you. Your child sees you. And they are grateful.

 

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