Tuesday, April 9, 2019

An Open Letter to the Medical Professionals Who Get It

Dear Medical Professionals,

I remember long ago when I brought my first baby in with severe colic. I was blessed with a physician at Michigan State who got it. I had his email and phone number and while I struggled to manage graduate student life with a colicky baby, you were there. There was a nurse who brought me her own copy of T.Berry Brazelton's "How to Calm Your Fussy Baby" and yet another who told us about "The Happiest Baby on the Block".

Fast forward, I am well seasoned, kind of like a Thanksgiving Turkey and parenting a child with colic is a distant memory but today, I face new challenges I never understood, through all my years of parenting before autism.

Imagine your child being sick. Not knowing what is wrong. Noting a temperature and mood changes, perhaps other symptoms, vomiting, excessive coughing, difficulty breathing. Wait? You don't need to imagine, that is much the life of a young parent with an infant or toddler.

Now imagine that same scenario with a child, twice or three times that size, perhaps even full grown, unable to communicate exactly how they feel. Taking a temperature is a joke because you may get slapped or scratched, getting medication into a child may require a two parent suppository. This isn't what you imagined life would be and then, you see there are the medical professionals, who get it, or want to get it or are eager to learn exactly the life you live.

Today, I had that experience. First and foremost you must understand, years ago, when I knew something was different I sought medical care. The first physician dismissed me saying she was my fifth. He noted he'd been in practice longer than I was alive and told me I just didn't have time for me. What a blow. As a mother, I had spent countless hours with her tiny fingers intertwined in my hard nursing into the wee hours and to hear those words, my heart broke. I knew this child almost as much as her Creator.

Then, there was the Nurse Practitioner who listened. The one who took 30 minutes to review videos, listen to my own stories and poll my children about their experiences with their sisters and as she drew in a breath, she recognized my intuition and helped me to seek appropriate diagnostic testing. From that moment on, she has been my gold standard. In fact, not many could come near her intuition with my own child nor was I willing to see anyone else with this precious gift who now had more diagnosis next to her name than I could have imagined when I pushed her into this world. Yet, time, and trust lead way to the nurse who sat with me and shushed her as I tried to get her to use the bathroom when we suspected potential diabetes or the other Physician who told me he too understood and while his child was different from my own, to make sure I had support and that I kept pushing. He reminded me I was a good mom.

Then there was the nurse, last night, Kim, who listened to me, and took time to learn more about my "verbal" child's inability to be functionally verbal conveying exactly what was bothering her but giving me that chance to be mom and steer clear of traumatic experiences in the emergency room and then today.

I woke, my daughter, still lethargic but seeming just a little better from yesterday, was going in. She would see a physician whom I have liked but never knew personally, well. We walked in, to a nurse I know, and as she tried her best to get her temp and assess her, she knew to be mindful of my daughter's words.

Within a moment, the physician came in, seeing my daughter's fear, she allowed her to stay cradled in my arms, like the little fighter she is, she lashed about breaking an otoscope, launching additional medical tools across the room and instead of frustration, in her eyes, I saw love. I saw the reason people choose to become medical professionals. As she cleaned up and gave a chuckle, she listened to my daughter, kindly giving her sips of water and providing me with a bed pan as she was about to get sick. She knew, from my words, from my daughters fighting that I wasn't about to give up and I feared taking her in. She knew the trauma from a visit to the emergency room could potentially be detrimental to this child's well being and while treating her honored her oath of "do no harm".

She allowed us to go home, armed with a juice box, medicated with Zofran and holding an ice pop. As the sun shined into my windshield I prayed. I asked for His hand in her healing. I knew this illness was too big for me to do alone. All afternoon, I sat. I begged her for sips. I took her on a walk promising a block for a sip, and made it 3 miles. Then, a few hours later, she called. She wanted to know how she was and she insisted that I keep trying to get her to drink more.

We are now 3 full days into this virus that is ravaging my child. My mom called, feeling badly for me and honestly, part of me feels badly but I realize this is a blip, unlike that of a parent who has a child facing a real medical crisis. Still, tonight as I sit close, listening to her breathe, I cannot forget the medical professionals who choose this path, knowing it will be messy and sometimes painful, that it will cause them to pause and thank God for the healthy children they see. I am grateful today, for my daughter's medical professionals and hopeful that like the team I have found, other parents with kiddos on the spectrum can find the same love, compassion and understanding that their child deserves.

Thank you again for choosing to say yes to our children, who can be more of a challenge than your typical kid.

Sincerely,

The Messy Blessy Momma

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