Without a doubt, the impetus for this blog, and the very foundation of the space in which our family now stands, is grounded in our experience as a "medical family." So much of what my life is now is tied directly to the hat that I wear as a "Medical Mom," as a family caregiver and the parent of a child with disabilities and complex medical needs.
Of course, I am still very much the product of my upbringing -- as much as anyone else. And, obviously, I am not *just* a mom. I am the sum total of my life experience. That is true for all of us. We are the product of everything in our lives, of every experience, that has come before this singular moment. And among those many experiences that came before, I believe that most parents would agree that having a child, the act of becoming a parent, fundamentally changes a core part of your being. It is a monumental life experience that forever alters who you are and how you see the world.
My husband and I are part of a sub-group of parents.
Sure, we share with other parents that monumental experience of having a child. We have felt the earth-shaking change that vibrates within your heart the first time you see your child, the first time you hold your new baby, the first time they smile at you with their big toothless grin and bright eyes.... We share that very common experience in parenting.
However, our experience in parenting has also come with periods of gut-wrenching fear, grief, anger, trauma and unmeasurable levels of stress. We have experienced the delivery of difficult diagnoses. We have held our baby's hand through medical emergencies with unforeseeable outcomes. We have cried that deep belly cry on shaky knees. We have watched as hospital crash codes have been called and teams of medical doctors have rushed into the room to work ferociously on our toddler's body. Checking vitals, pushing meds, calling for consultations from specialists.
That, too, is part of our parenting experience.
And that experience does, most definitely, without question, forever change you. You are never the same person. That experience seeps within you and latches onto your soul. Trauma imprints itself.
And then, it is up to each one of us to figure out what to do with it. We decide what to do next, where to go, how to proceed with the rest of our life.
Because so much of my life and my perspective is tied to my identity as a mom, a Medical Mom and a family caregiver, I would be remiss if I failed to offer up the story of our family. So much of what I share on this platform requires a knowledge of the medical journey we have tread with our son over these past 5 years.
And yet, it is an exceedingly long, complex story. It is far too long and complex to share in great detail within the confines of a single blog post. Most certainly.
For those who are interested in diving deeper into our long backstory, I invite you to visit and wholeheartedly welcome you to follow our Instagram page @rollin.w.spinabifida. Happy scrolling!
For the rest of you: Here is a wildly abbreviated, three-paragraph, run-on story of the past 5 years of our lives...
Jason and I were married for seven years before finding out I was pregnant with Malachi. [Infertility conversations will be ongoing.] Around 18 weeks into the pregnancy, my bloodwork raised some eyebrows, and I was sent to a different OB with some special imaging capabilities and discovered that Malachi would be born with a medical condition, a congenital disability known as Spina Bifida, requiring a major surgery immediately after birth to close and repair an open section of his spine. As a result of Spina Bifida, he would also experience a secondary diagnosis called Hydrocephalus, which necessitated a second surgery -- a brain surgery after birth -- to place a life-saving device called a shunt. What had been a pretty easy pregnancy immediately became classified as "high risk," and we were told to prepare to relocate to the Seattle area, some 2.5 hours away from our home, to remain for, at least, several weeks following a planned cesarian birth. We were handed another diagnosis a few weeks later when we learned that Malachi would also be born with congenital heart defects in the form of two holes in his heart (ASD and VSD for those who are familiar with congenital heart defects) that would require surgical repair through open heart surgery at some point during his first year of life.
At 35 weeks, the high-risk OB noticed reduced fetal vitals during routine monitoring. She put me on a video call with the maternal-fetal team in Seattle, who informed me that I would be flown to a hospital in Seattle that night for an emergency c-section. I was placed on a gurney, wheeled onto a medical flight and hurried over the mountains where Malachi was born just after Midnight on January 19th, 2018. Within the hour, he was whisked off to Seattle Children's Hospital down the road. His dad went with him, and my mom drove to Seattle later that morning to stay with me as I recovered from my own surgery. Malachi underwent spinal surgery later that afternoon and brain surgery the following day. Recovery was far more difficult than expected, and he spent quite a bit of time after surgery in the hospital NICU. Several weeks later, he began showing signs of heart failure, indicating that the time had come for open heart surgery. It was earlier than anyone had hoped, but that's what it was.... After heart surgery, he had an even more difficult journey ahead. He had problems breathing and was soon experiencing obstructive episodes several times a day. He would turn blue, and his vitals would plummet. We made the decision to move forward with a tracheostomy, and in May 2018, Malachi became a trach-vent kid. (To this day, it was the best decision we ever made for him, even though it was a very scary decision to make at that time.) Over the next several months, Jason and I stayed in the hospital with Malachi while he fought against his first bout of the stomach flu and his first shunt repair (meaning: a second brain surgery. Shunts are life-saving devices, but themselves, have a short shelf-life and require fairly frequent intervention via surgery.) We also were trained to be medical providers for Malachi. We learned how to save his life, how to respond in emergencies, how to be caregivers....
Malachi was first discharged in August 2018, and we brought him back to where we were living at the time in central Washington, about 2.5 hours East of Seattle. That December, Malachi experienced his first seizure. He had two more significant seizure episodes in close succession, when in April 2019, after our second medical flight to Seattle in a two-week time span, I told Jason that I could not bring Malachi back home. I did not feel it was safe to live outside of a major city with quality medical care, and I told him that we needed to move. So, we moved. We say now that "we up and quit our lives." We rented an apartment. I quit my job and found a work-from-home opportunity. Six months later, Jason changed jobs and relocated to the Seattle area to be with us. We sold our home and, a few months after that, we bought a new one. Life was still very stressful, and Malachi required A LOT of medical care. We had in-home nursing for several years, and then, when the COVID-19 pandemic hit, we suspended nursing completely. Jason and I spent 18 months providing around-the-clock care for Malachi, staying up all night with him, while both of us worked from home. During that time, Malachi was growing and becoming more stable. Jason and I were also growing and becoming better medical caregivers. We gained more confidence and more experience. And slowly, over the past two years, we have reached a point where there are now very few emergency trips to the hospital (thankfully! And *knocks on wood*). Life is still hectic and stressful and, sometimes, scary, but medical caregiving has simply become part of who we are as a family. This is our life. It is a really good life.
That's it. I do not want to spend much more real estate here rehashing our son's medical history or our family's early journey through the medical system. I feel that it is, for the most part, enough to say: It is long. It is complex. It is traumatic. And, mostly, it is the past.
Besides, that is not really the purpose of this blog. I don't want to dwell in trauma. I want to remember all of the amazing parts of early parenting, and I want to look ahead to the fun that exists in the world around us now. So, here, on this platform, I am choosing, with intention, to *not* focus on the origin story that brought us here.... Not because it is unimportant or non-critical backstory, and certainly not due to a lack of drama, twists and turns... Certainly, there was plenty of that. But I don't want to live emersed in the drama of past experiences. That is not the story I want to share either -- at least, not as a primary point of focus.
And honestly, that story has already been told. Many times. There have been a number of articles about our journey shared by local news outlets, and there are pieces out there I have shared myself. (I will link to a few articles at the bottom of this post for those who are interested. I don't mind sharing. They are, after all, a big piece of who we are.)
But, this....
This is the story of our now. This is the story of our adventures. Our striving to explore. Our achieving of dreams. Our striking out with resiliency and passion and courage.
That is the story I will tell.
Past Articles & News Stories
Rollin' With Spina Bifida, Podcast: Once Upon a Gene - Episode 11, 1/3/20, tinyurl.com/37t28rnn.
Boy born with spina bifida turned his parents into advocates, by Julie Muhlstein, published by Everett Herald, 10/26/20, tinyurl.com/3tt5xcby.
I'm a working mom and my 4-year-old son's full-time medical caregiver. Here's what life is like, by Whitney Stohr, published Today.com, 6/10/22, tinyurl.com/y25ryh2k.
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