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Hospital and Home

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Day 5: On your marks, get ready, bake! My form of Xanax. The British Baking Show is about all the intensity I can manage as Davis and I wait for his surgery in the afternoon. I spin the rewind line at the bottom of his SpongeBob show on the iPad because he is down to only three that he wants to see as his frustration mounts and his energy levels wane. The task ahead will be a bronchoscopy and wisdom teeth extraction. The newly emerging wisdom teeth may be a source of infection as we cannot get a tooth brush to that part of his mouth. He will allow all other parts to be brushed after every meal but the back. Surgery later suggests good dental health except for that area. The bronchoscopy shows no foreign matter causing the abscess in lower right lung. The course of treatment is now to manage the pain from the tooth extraction and antibiotics for a month to heal the lungs.

Post op recovery turns out to be the most difficult he has ever been through as the pain is managed as best as can be. The night involves two hours of quiet in between his distress. The next day he settles with the pain regimen and Rick drives to Reno to bring us home. The ride and evening are uneventful. Whew. Until…

At two in the morning Davis is frenetically agitated and in a state I recognize as pain. We had not yet started his oxycodone because he had been so peaceful. We had been using Tylenol. Rick and I debate having him ambulanced to the emergency room for IV pain management when the pain pills seem to kick in an hour after given.

Technically this would all be on Day 6. The reason I even note the days is because they fall into a black hole or vacuum when Davis is in crisis. While the tornado of medical mayhem tears down the structures I crave for peace of mind, after each storm there remains enough foundation to rebuild. I tend to approach my day with more of a sense of what really matters. What best starts me off in a morning, and where does that beautiful sense of peace come from which provides me with deep undisturbed sleep? For Davis I sense he craves his visits to Vons and walks with his care team. His healthy baseline.

This morning as Davis sleeps beneath a blanket of heavy pain management pills, I begin my day identifying the birds around my porch by their songs. Mountain chickadees are easy. Northern Flicker I am learning along with the Brown-headed cowbird. After I note the coo from a Eurasian Collared Dove, it decides to come closer. Birding is another meditative device for me.

Rick and I hang onto our first hug of the day a bit longer. I text Davis’s caretaking team a deeply felt gratitude for helping us provide for our boy the best that we can provide together. I cannot control the manner in which the rest of Day 6 will unfold, but I can soak in what is precious in this moment. A gentle reminder of the rainbow after the storm.

The dove affirms our new peace.

Hospital Time

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Day 1: Before taking Davis in to the ER I pull out some clothing I dub comfortable in hospitals for long periods of sitting. I grab a few days worth. Somehow I know even before I admit to my premonition that Davis will require more medical care than is available in our ski resort hospital. My toiletries and a pair of pajamas stack up near my comfy items.

I know.

Within 6 hours we all know. The initial xrays and scans evolve to more in-depth studies of Davis’s chest. Abscess lower right lung. Fluid outside the lung. The team searches for a bed available to life flight us to. I return home to pack the items that I had already stacked up together on my dresser. When I return Rick comments on how calm Davis and I are, how patient we seem to be with the endless hours of waiting.

This is not our first rodeo. Davis surrendered earlier than I did this morning. His ipad repeated the same few spongebob episodes as I scrolled through messages and news items on mine. 11 hours later Davis and I were on a life flight plane headed to Reno and a place to park ourselves for the night before the new team decides how to fix our boy. Rick stands by awaiting news from us on Day 2.

Day 2: There are no sleeping chairs that fold out into beds in an adult hospital. After trying to scrunch three metal bedside chairs into one long bench I give up and crawl in beside Davis with my pillow by his feet. My feet dangle to the side because his head is elevated due to his lung issue. Quick note to self, thank you for remembering to pack nuts to snack on and advil to manage the question mark pose my back responds with after sleeping in an odd position.

17 hours after coming in to this room I am ready for my first battle. The doctor who has my son listed for no food has not seen him as yet. We are given no plan. I suggest that I should take Davis down to the ER and five minutes later his pulmonologist appears. The order not to eat was a mistake. Note to all parents: be proactive. Hospitals and doctors can miscommunicate. There is a bedside procedure during which I hold Davis as the doctor makes an incision near his lung area and pokes in a very very long tube to pull the extra liquid from the area around the lung. Davis eats, then becomes very agitated perhaps because of pain. We try Tylenol. Another round of agitation and he finally falls asleep. I am told a plan that includes a new cat scan that same day which for whatever reason is not written up in the system and all plans tomorrow, including letting Davis eat, will revolve around a new morning doctor ordering up that darn cat scan. Davis has a chest X-ray. Left lung is no longer collapsed. His oxygen saturation levels climb back up.

Before bedtime Davis is back on oxygen. (To be continued)

What I learned along the way…

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What I would do differently could I return to my early years as a parent of a child with special needs has not been learned because of his rare condition so much as it has been honed and polished by the maturation of the process of aging.

Let me be specific, I felt entitled to have children blessed by personality, intellect and talent in some area of their choosing. I would not have worn my pride as a parent in a braggartly way (no not a word), but rather in the manner of a smile a parent spontaneously produces when a child locks onto our heart. This one is so unique, this one so curious, this one so loud? Ah, this one will push for different developmental milestones.

Having raised two children from the get-go, another from the age of eight, and having met our fourth child when he was out of high school, I admit my parental processes and choices had less impact on their paths and capacities than my ego desired. But parenting is not of hubris, but of heart. Circling back on the question of what I would do in addition to or in place of what I have done as a parent?

Spend more time.

I would, if I could, go back and spend more time engaged with each child individually, and collectively at the dinner table and on family adventures on their terms and on mine. I would have played more video games and watched sports with our oldest Ryan. I would have cuddled more on the couch and spent afternoons in Lynnell’s room where she preferred to be after school. I would have hung out while Davis had his many therapies, rather than run errands in an effort to be efficient. I would have come to know our newest son David after he found Rick, his biological father, on his own turf, not just on ours when he visited us. I would have met his friends, his family there, and celebrate the expansion of our circle with the truer knowledge of who this young man was.

What I would do different is about time, a finite commodity. Even as a special needs parent, I would park the panic and contribute what I could to my son’s potential development without the guilt that I should do more, be more when in fact it is simply about being present. All a child asks of a parent is to see them, absorb their spirit, celebrate their inner soul.

What wisdom I did gain as a parent of a boy with the Phelan-McDermid Syndrome, the thirty-third child in the world to receive a diagnosis of a deletion on his twenty-second chromosome, is that it is enough to watch Davis light up when someone he enjoys enters his orbit. He loves without condition, accepts us all without terms. He surrenders and settles in with whatever compromises life throws his way.

Yes the process of aging has taught me this as well, but as a special needs parent I have had the unique option of gaining this awareness sooner, without the wrinkles of time because these simple souls beckon us to sit beside them in the stillness of the moment from the time they enter our world, our hearts.

Compassion

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dad-90th

Train to gain I call it. Be tough enough to cry and silly enough to laugh, eventually, about the same event.  I joke as I maneuver my parents through the most difficult part of their day—being in a world of bustle while they select their items in bulk size at Costco. Humor helps ease anxiety. As I return a the cart to its rack in the parking lot I am asked by a woman if she can hug me. I smile, knowing why. We bumped into each other a few times inside as I guided my  mother with her visual impairment and my father with his lopsided balance through the massive store. Both  parents hung on to the cart like a life boat. My husband pushed the wheelchair ahead of us with our son who was just out of the hospital after five days and his Life-Flight from the Sierra. A silly spectacle, a herd in healing. The woman had helped me load a 30 roll package of toilet paper it will take my parents years to finish, but the savings are important to dad. Happy to validate his needs.

“Bless you,” she said after hugging me.

“I am,” I replied. “And thank you.”

I still have my 93 year old Silver Star dad and my 87 year old PhD mom to call and to visit. Their world, like my son’s, is slow and small. That is not a bad thing. Earlier I watched a mother urge her son to get ahead of us with their cart filled to capacity in order to have her receipt checked first by the person at the door. Her face was fierce, determined. Her son appeared to be trying to please her as he rushed by, uncomfortable in his quest to be first as our eyes connected and I smiled.She gains a minute of life with her speed. Her son misses an opportunity for her to teach him compassion.