Those first early months and years of raising a medically complex child with developmental disabilities are... challenging.
The word "challenging" is a glaring understatement. Though, I'm not certain what word can fully encapsulate the depth of impact of having a child with a complex diagnosis.
Certainly, the experience differs from family to family, but regardless, there still exists a common refrain from medical parents, a reflection on the almost indescribable emotional flooding that occurs in that first year or two of medical parenting.
Certainly, the first two years of parenting our son were immeasurably difficult.
If I'm being honest, I would have to admit that those first two years of Malachi's life all but knocked us off the board. It nearly took us out from a physical standpoint. We were an absolute mess and hanging onto whatever semblance of a "normal" life we could, even if only by the white knuckles of our fingertips. Our physical health was at a disaster point. We had no time to take care of ourselves. We weren't sleeping. We were both suffering through symptoms of chronic- and post-traumatic stress from what felt like the never-ending barrage of medical emergencies and 911 calls. Our mental health was a mess. We had zero time to de-compress or focus on anything that alleviated the stress of our home life. We had even less time to spend together. Hell! We weren't even living together for the better part of those first two years of parenting. I was playing single mom, living either in the hospital with Malachi or in our tiny apartment in the Seattle area, while Jason was, by necessity, a weekend-warrior of a dad as he lived 2.5 hours away, maintaining a job (and our finances) and traveling to see us on weekends. For me, the fear and anxiety of managing emergency after emergency on my own contributed to a great deal of mental and emotional overload.
And yet, outwardly, I feel like we appeared as put-together as possible, given our situation. Perhaps, we actually were as put-together as one would expect living in a medically induced, crisis situation. Malachi's health and well-being remained our top priority. We put everything we had into that kid. We poured everything we had into him. Even after moving from our home in central Washington, to a tiny apartment near Seattle, I found employment, working-from-home in a flexible role with a wholly supportive boss. And I managed all of Malachi's daily needs: the doctor's appointments, tests and procedure scheduling, the medical care at home, the therapies, the in-home supports that he needed, the ordering and delivering of medical supplies.... I managed all of it, and, for someone completely lacking any type of medical background, I did a f-ing amazing job. I'm still proud of myself for the care I provided Malachi during that time. And even through it all, I carved out time to remain involved in parent leadership opportunities, education around disability policy and social justice issues, and legislative advocacy. Meanwhile, Jason worked hard and supported us financially. Admittedly, we had help, but through everything, we kept our heads above water.
I feel like, at least outwardly, we appeared to be doing okay.
We weren't okay, of course. Not by a long shot. But, I think we looked okay, at least.
Regardless, we pushed through, and I am proud of us for that.
I'm proud that we made it through those first two years.
I'm not sure exactly how we made it through.
Honest to god, I have no idea.
But we did.
Often, the parents of children with disabilities and significant medical diagnoses are hailed as some type of super-human species. We are told frequently that we are "heroes." (If that sounds super weird that's because it totally is weird, but -- I'm not kidding -- it happens all the time.) People often share that they "could never do what we are doing." (Which, of course, is also not true -- not at all. They just haven't had the need to do what we do. That is the only difference.)
Now, don't get me wrong. I would love to sit here and sing my praises. Truly, who wouldn't?! I would love to tell you that I am the most amazing woman in the world -- someone who really can do it all and have it all and fart rainbows and spit cupcakes. I would love to wrap myself up in my hero's cape and go to bed comforted by my extra-human superpowers and all-around amazing-ness.
Unfortunately, none of that is true. Shocking, I know.
The truth is: by and large, Jason and I are incredibly average people, and we deal with emotional events and traumatic experiences in a way that is entirely on the spectrum of typical human response. (And I would wager to bet that most parents of kids with disabilities would also put themselves right there on that same spectrum of completely average humanness.)
I wouldn't say that we are any more or less resilient than anyone else. We probably have an entirely average capacity to handle trauma and crises. We're tough, for sure. We work hard. We're dedicated to creating a comfortable life for ourselves. Jason will always strive for stability, and I am one of the most adaptable people I know. That helps. We are lucky, too, to have fairly consistent, though, for the most part, geographically distant, support from family....
Those first two years of parenting our son were the hardest years either of us have experienced. (We talk a lot about that now.)
Those years would have been hard for anyone.
They were just hard.
But we certainly didn't get through them due to any innate characteristic of triumphant inner-strength or the heroic ability to tolerate adversity.
In truth, our life as medical parents, for over two years, was really the hardest, most uphill "rise and grind" type of reality. We woke each morning, put our head down, and did what we needed to do. We maintained our tunnel vision on the tasks necessary for Malachi's medical care. That was our life. Probably, we were successful in part due to my ability to understand and manage complex processes and government systems (thanks, law school.) and Jason's ability to compartmentalize life. I'm certain that was a contributing benefit. But mostly, life was just hard. We took punches over and over again every day. We hit our absolute rock-bottom. Several times. We cried. We were deathly afraid of losing our son. Over and over.
Life. was. hard.
And so, we sucked it up and pushed forward because what the hell else are you supposed to do?
And slowly... things got better.
Malachi grew. He became more stable.
We grew. We became medically trained, professional family caregivers.
We gained more experience, more skills, more confidence.
And Malachi continued to grow and grow, and develop and mature.
And that cloud that hovered over our heads for over two years began to dissipate. Slowly.
So, that we could finally raise our gaze from the ground and release the white-knuckled tension in our fists and begin to look forward to creating the future we wanted for our family.