We hit the ground running hard and fast the day Nathaniel, our now-adopted son, was placed in our home through foster care. Thirteen hours into being his parents we had experienced a life-threatening blockage in his tracheostomy tube, a brief stay at a children’s hospital, and a ten-day stay at a pediatric rehabilitation hospital. I wrote in my journal,
I’ve worked with our Children’s Division licensing worker, the baby’s Guardian ad Litem, his juvenile officer, our adoption worker, his case manager and her supervisor, two home health nurses, nine EMS personnel, countless emergency room staff, a new-to-him Pulmonologist, her nurse practitioner and resident, his ENT, her nurse practitioner and resident, hospital floor doctors, hospital nurse practitioners, new nurses every twelve hours, new nurse techs every twelve hours, new respiratory therapists every twelve hours, a home medical supply company and their respiratory therapist, two different hospital social workers and care coordinators, an insurance company case manager, and two entirely different teams of physical therapists, occupational therapists, speech therapists, and developmental therapists.
Today, I kept them all away long enough for my baby to have a three-hour nap. There is a sense of victory in that accomplishment.
What I did not know then is that the demands of medical appointments and therapies on Nathaniel were not going to end with his discharge from the pediatric rehabilitation hospital.
The numbers tell a shocking story.
A Shocking Amount of Time
Reviewing last year’s record of Nathaniel’s appointments from my calendar, I made notes of the number of therapy sessions, doctor and extra appointments, outpatient tests, surgeries, and illnesses that he had each month. I noted the actual time investment, in hours or days, for each. I also noted the amount of time daily medical care requires when Nathaniel is healthy. Every twelve hours of appointments equals a full day spent on medical life. Time is a limited resource. The hours and days that a child spends on living his medical life, even for the routine care that his conditions require at home, cannot be lived again as a typical child.
Nathaniel spent one hundred and twenty-one days, one third of the year, entirely dedicated to being a patient who is medically complex.
That number does not count the hours we spent each day practicing therapy homework. It does not count the three hours a day he carried a backpack with his G-tube feed inside. It does not count the hours that his parents must spend communicating with each other or professionals about his needs. Until I sat down and did the math, I did not realize what a huge job and time investment being chronically ill has been for Nathaniel.
He is not unique. The Women’s and Children’s Health Network, an on-line resource written from South Africa, states of chronically ill children,
Attending many medical appointments and spending time in recovery impacts opportunities to do activities that other children enjoy…which affects opportunities for learning, playing, and making friends with other children.
Further they recognize that,
both the illness and the treatment for the illness can be stressful for the child.
Nathaniel participated in a university based peer group therapy, Developmental Language Group, last summer. His post-session evaluation read, “Nathaniel’s medical conditions seem to prevent him from typical interactions with his peers.” I suspect the clinician was referring to the obvious—his inability to audibly speak. But I would argue that the simple lack of time to experience a normal childhood places Nathaniel at a disadvantage with his peers.
He has not lived three years and nine months of childhood, as his age would suggest, but only two-thirds of that—two years and three months. Nathaniel was eight months old when he came to us through foster care. Evaluations the first month at the pediatric rehabilitation hospital placed his development equivalent to a three-month-old. He continues to hit milestones later than his peers. It is unknown if his global developmental delay is due to a yet-diagnosed condition or an absence of childhood due to medical treatments.
To my knowledge there is no test for the latter.
I wonder how to best help him catch up. Accessing the full developmental delay with tests and then treating the deficit with more therapy and more intervention is an option. But everything in my momma’s heart screams no to a solution that seems to contribute to the problem. More tests. More appointments. More time in the car, in the waiting room, and in limbo anticipating results. Medical complexity turns the gears of medical complexity into more full days of medical life.
There are some things I cannot change or eliminate. Nathaniel frequently needs the support of a hospital for even minor viruses. I have no option at these times. But one hundred and twenty-one days is an unsettling high number, and it causes me to evaluate how we can reclaim some of them.
Nathaniel started a new semester of Developmental Language Group a few weeks ago. The program was recommended as an option to catch up on social skills and offer an environment where he can use his voice generating communication device, his talker, with non-familiar communication partners.
Looking at the program alone, I am very impressed. It offers much to Nathaniel. But the morning commute took us over an hour, the therapy session lasted two hours, and the commute home was another thirty-five minutes, meaning Nathaniel spent a combined four hours in the car or windowless classroom multiple days of the week.
On the way home one day we drove past a nature center where a group of friends and their children had spent a beautiful fall morning visiting and playing. The contrast between the morning granted to typically developing children and the one recommended for Nathaniel was stark and sad.
The benefit of ordinary days spent at a park with friends has likely not been fully researched, though physical exercise has recently been linked to improving ADHD symptoms (Hamblin, The Atlantic). Still, it seems risky and presumptuous to assume that living a conventional family life and childhood can have the same impact as a carefully constructed therapy program to help Nathaniel catch up to his typically developing peers.
But the truth is, I do not long for Nathaniel to be a normal child. We have long accepted that is not an attainable goal for him. I do, however, long for less medical life and more normal days for him. I long for the appointment when a physician will write a script for “normal childhood” and fax it to his private duty nursing agency, thus releasing him from the burden of intervention and freeing him to enjoy the inherit pleasures of being a kid. I feel passionately protective of the hours and days Nathaniel has to experience life. Real life. Not medical life.
We withdrew Nathaniel from the Language Group. It feels uncertain and overconfident and brazen. At the same time it feels freeing, authentic, and extravagant. It is a symbolic gesture more than a statement about the specific program; exemplifying both a recovery of what Nathaniel’s medical complexities has robbed from him and delineation of future balance between medical and normal life.
Mostly, it illustrates that like I did thirteen days into being his mom, part of my role is holding his medical life at bay so Nathaniel can have a childhood.