Category: special needs

Settle

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He laughs. Davis has been back from the hospital and in Mammoth for just a week and found his chuckle, his joy. With his sweet soul safe once again I follow the pattern of nature and rest.

Propel one’s life force, one’s energy out as required by the intensity of the moment, and when the dust settles…rest.

For me to rest is also to nest. I tackle a corner of a chaotic cabinet or set up special meals for Davis that I freeze in a flattened form for easy stacking in his fridge. He has a team of care providers 24/7 and whatever I can do to make their time with him easier, I do. Besides, cooking heals my anxious mind.

While our world returns to a familiar baseline, my mind must be re-directed to slow down. Not to recall tubes inserted into his chest or the fear that he may not be able to live at altitude. There was a word, a command I used with his former service dog Lucy who passed years ago: Settle.

She would fret about a situation and look to me when she heard the command. She trusted and she settled. It is time for me to do the same.

Three hospital stays, two life flights and an anxious drive home with a portable oxygen tank. Feet that atrophied enough to make walking difficult, and a young man who needed to keep active in order to keep healthy. To rebuild. Can we? Rebuild?

A week later one of his care team, Lizeth, sends out the laughing video on our team text stream.

Yes. There is always a rainbow at the tail end of a Davis Crisis. I heed the command to Settle.

Escape Artist

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Luckily Davis is not a quiet escape artist. Yesterday at 4 am I woke with a jolt to his distinct “make my world better!” growl and made it over to stop him from pulling off tubes and scooting toward the edge of the hospital bed. His legs are not stable enough to keep him safe upright without assistance. This morning he let me sleep an extra hour and did not attempt his bed break until 5 am. Even in a deep sleep I am attuned to his verbal cues and can get to him before he gets to the edge of his bed. I doubt he could crawl over with rails up, but he is a force to contend with when on a mission. Because he is not a quiet escaper, his nurse and other staff run in almost as fast as I move to him. Gotta love that growl of a voice.

Fix-my-world is his constant call when his pain medication wanes. Soon, I tell him. Soon.

More fluid from his chest tube fills the storage device dubbed an atrium. This batch a bit pinker from the medicine used late last night via his chest tube to get to those darn encapsulated pockets that seem to dodge the antibiotics. Will more fluid fill in? This has been my question that cannot yet be answered. Only an upcoming cat scan will show us if the fluid rebuilds. Or if he will need surgery. Or if maybe, just maybe, we can go home.

Home is another problem to solve as we live at 8000 feet. Here at sea level he requires 6 liters of oxygen to maintain even low oxygen saturation levels. Can this happen again? Yes. Aspiration pneumonia is taking a toll on his lungs. I reach out to another mother with a child like Davis and hear new medication words and a return to albuterol treatments. Anything to try before exploring the next big option: tracheotomy.

This is what it is. Waiting. Hoping. Remembering this boy wants to be back to trike the trails of summer in the Sierra. Not sure when…yet.

Frequent Flyer

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Friday evening UCSD accepted Davis for pulmonary complications. The Mono County paramedics brought the flight nurse and paramedic over to Mammoth Hospital to prepare Davis for his flight. As our small plane took off I sought a distraction to pull the moisture from edging up into my eyes and leaving their tell-tale track down my cheeks, even behind my mask. I looked to the west and found that familiar twinge of pride for our perch atop the world in the Sierra. An orange glow lit up the Minarets. Where we live, work and play feels as inspiring from the air as it always has been for me from the ground. I needed this image planted firmly in my heart as we left the silhouette of Mammoth Mountain behind us.

Soon pal, I think, we will be back soon.

By 2:30 Saturday morning, after a very thorough work up from his nurse and the floor doctor, we slept…for 3 1/2 hours. Davis tends to sleep on and off when he is in a hospital bed or a recliner beside his bed. For me, naps have always been precious because nights are broken up into segments of sleep around his needs. Most interruptions are about managing his pain. His right lung has collapsed once more due to fluid build up. A swallow study suggests that his aspirations causing the many frequent bouts of pneumonia may not just be from just his seizures. More studies will be done during the week, but until then all liquid is thickened and his food is softened.

A speech therapist reminds me, not through words but with her hand gestures of yes, no, all done, that Davis deserves a mom who will do more than maintain his health. He once communicated with a few signs so long ago. He engaged his world with more than his eyes glancing at an object of desire or of concern. He didn’t give up. I did. My sister-in-law Janice is a professor at Fullerton State who teaches young eager students about special education. She signs. I have untapped resources. When she and my brother Paul visit over the weekend, I ask for help. For me and for his team of care providers in Mammoth.

A new chest tube is placed on Monday morning. Davis immediately needs more pain management. His oxygen requirement continues to escalate. When we arrived on Friday he used two and a half liters of oxygen. Last night he required ten. This morning he is back to five liters. Later today There will be a procedure to address the encapsulated areas that are infected in spite of the antibiotics. More samples taken for culture. A suggestion of surgery Friday if this less invasive path does not provide the results we need for him to be well.

Davis teaches, as always, that days, hours and moments take their own course. Plan, predict, maneuver as we will toward our desired outcomes and there will always be detours. He, Rick and I do not surrender to hospital time, we simply know better than to fight against the under tow of his genetic anomaly. We wait. I hold that keeper memory of the orange glow behind the Minarets and plan my next summer backpack to be closer to our iconic cathedral pinnacles. I look ahead to images of Davis on his trike with Rick running behind pulling on a rope to slow Davis down. I see us together as Davis pushes a cart through Vons. Soon pal, soon. And for now we wait.

It is what it is…

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We live beside a precipice of chaos. Medical mischief pulls us over and spits us back at a pace we cannot control. Our return to normalcy may be gentle, a soft landing, or punched into with new routines to keep Davis comfortable and safe. Odd that the very force which grabs our ankles to tumble us over is also a force capable of reinforcing hope and a belief that all of us will soon smile again. Davis will soon clap when he wakes up in the morning surrounded by we who care for him. We have been here before.

He reminds me this morning after a trip to the ER yesterday, and talk of another life flight, that life is sweetened by challenge. Honed by riding the bouncing bull I decide is his rare genetic condition. #phelanmcdermidsyndrome. PMS will not be tamed, in our experience. Perhaps in the future genetics can be repaired in utero, but in this moment we have what we have.

Yesterday my eyes watered up with the possibility of another life flight and time so far away from the very community I crave when Davis is ailing. The fluid around his right lung was worse than ever. A chest tube would be required to drain the fluid. Rick stood with us as Davis underwent the procedure. The staff set up a room where I could comfortably be beside Davis as he healed. My son is familiar and they knew we came as a pair when he needed to stay in a hospital. Our buddy Deena delivered an amazing meal which Davis and I shared. Davis had his first peaceful sleep in months. He woke with a smile.

I have simple sweet gratitude for waking up here, in Mammoth, aware of a potential soft landing at the end of this event. I can picture him soon pushing a grocery cart at Vons, happy to be out with one of us beside him. Who knows, he may even ride his trike this summer on the trails nearby as he regains his capacity to thrive in our beautiful perch atop the world called the Sierra.

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 continued

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Day 3: Davis and I discover our first hospital experience where every person today shows us extraordinary attention and compassion. Perhaps because I initially walk around the room like the hunchback of Notre Davis, I am allowed to use the empty other patient bed in the room to sleep in for the coming night. A person comes from the cafeteria kitchen department to be sure they set up an extra food tray because I cannot leave the area to get food for myself. A CNA offers to sit with Davis while I shower. The physicians for each specialty are in and out sharing what tests show and suggesting a plan forward that may include going home on Day 4.

When I explain on the phone to Rick about South Meadows Renown in Reno has great room options with space and storage, he laughs.

“Not good,” he tells me, “to have a favorite hospital room.”

I get his point.

Above Davis’s bed I place the book about him, Tao Of Davis, to remind us both we have been here before, probably will be again, and we can both look forward to that sweet spot ahead.

Day 4: I sleep long. I wake up tall. Davis wakes propped up and eager to get out of bed, which he does with two of us assisting him for a short walk to the bathroom. His balance is off and even he seems ready to submit to more time in bed than on his feet.

He remains quietly content as long as I repeat the same few SpongeBob episodes on his iPad. He pulls off his cannula, I place it back, prongs into his poor nose. Another scan on the first floor and the team’s creativity kicks in as we find a way to keep Davis as still as possible while the device circles his head as he sits in a backless chair with his chin on a shaped chin shelf. Masking tape helps hold him still with his forehead against the face rest. I am the chair back. When that fails another person serves as a front source of support to keep him still. Success.

New plan includes surgery on day 5. An oral surgeon will explore Davis’s dental situation because this boy has not had full dental attention for years. He used to go to Loma Linda’s dental program but they rejected him once they learned that he had seizure aspiration induced pneumonia periodically. His appointments for X-ray and teeth cleaning require sedation. Any comparable program had a two year wait before covid. We tried a local hospital option with small success until they too felt his needs were better served elsewhere.

The challenges of children and adults who cannot follow simple requests to open their mouth or to hold still feel daunting as we, the caregivers and parents search out alternative methods and options.

While the oral surgeon has Davis under sedation, the pulmonologist will perform the bronchoscopy to better address the abscess in the right lung.

The plan is in place, and can change with a seizure. Normally the turn of the phrase would be ‘can change in a heartbeat.’ But in a seizure the heartbeat is temporarily muffled, and a seizure comes around every 5 or 11 days. One is due.

I Fight for Happily Ever Now

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When I hear from others that my life appears to be a challenging one, I smile for I have yet to witness a life without a challenge. The follow-up comment, which never fails to turn my lips downward with discernment is that “they” could not do it, be in my shoes and tend to a family member with special needs.

Nonsense.

Any of us can. At some point most of us do. Accidents happen, diseases loom in the corners, loss occurs (intellectual or physical), parents and spouses age, and children are born who are different and will require more assistance. What I know is that each of us with the responsibility of caretaking can be flawed enough to be embarrassed when we stand out, and strong enough to create a home filled with laughter alongside the tears. We can learn to be flexible when our days go sideways, and to regain our balance when we stumble on ever-shifting terrain. Living with or without challenges is a physically and mentally fragile process. To do it well requires practice, and this starts with today, not tomorrow.

I have learned to forget about happily ever after and fight hard for happily ever now.


 

Compassion

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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.

 

Good Grief

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“What does he have?” I am asked, usually when my adult child is squawking like an infant or when his diapers poke out above his jeans. Today I can say ‘what he has’ and know that it can be found on the internet. Even in Wikipedia: 22q13 deletion syndrome (spoken as twenty-two q one three, see Locus (genetics)) is a genetic disorder caused by deletions or rearrangements on the q terminal end (long arm) of chromosome 22. The definition goes on, but for most parents new to this information…it takes time to swallow. Proceed slowly. Once in hand, once known, there is no turning back on the New Reality that something is forever shifting away from our original hopes, plans and dreams for our family and for our child.

Before the ‘Knowing’, for me, came Denial dragging along Anger. Naively I assumed this happened elsewhere and to others. Perhaps ignorant, perhaps somewhat entitled, when my landscape shifted beneath me and our family as our child fell farther and farther behind on the developmental milestones, I hoped the delays were caused by his difficult birth and entrance into life. I hoped he would catch up. When my hopes did not manifest, I let the Anger protect me from knowing too much too soon. Anger was also the result of grief and the tremendous sense of loss I slowly acknowledged. Anger protected me from Depression, which was a period of feeling powerless to impact this outcome. The depression sunk me when my bargaining with The Fates, The Divine, with God failed to produce the change I wanted in my experience as a parent. The sweet part of the path came with Acceptance. Once I embraced our garden as bountiful, once I re-organized my definitions of success and once I learned to check in with the neighbors for assistance or to assist them in our weird world, the contentment became the joy in the journey.

The Kubler-Ross five stages of Grief match the phases I experienced as a parent new to the world of special needs. Unlike the Kubler-Ross trajectory, mine has been a spiral circling back on Denial as new limitations or complications continue to come up for our son Davis, the thirty-third child in the world to be diagnosed with The Phelan McDermid Syndrome, a deletion also known as 22q13.3. After twenty-one years alongside my son, I am no expert, just a parent familiar with a path less traveled, one I have written about for years in a manuscript called The Thirty-Third Child.

My advice to any parent new to the Labyrinth of Special Needs would be to settle in fully with each emotion, each reaction, each stage. Not to rush the process because you can’t. If you do not fully grieve the loss of your expectations, this grief will later bite you in the sweet garden of Acceptance because it is a weed left unattended. Personally I liked Denial for its protective shield when I needed it most and even Depression provided respite when I needed a break. The Guilt I could do without, but any parent will have their share of this whether their child is typical or not. I debate Guilt when I can, what do I need to own as my responsibility and what am I taking on because of the way I see others handling their own difficult paths. But it’s the bargaining that eventually empowered me because to bargain is to trust in a higher source. As nauseating as this spiral can be, my ability to trust the process provides me with the capacity to smile as we all continue along in our journey with Davis.

 

Pudgy Presence

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03Living is a physically and mentally fragile process, to do it well requires practice. This is something I had to discover as I struggled with Davis’s many medical issues, that it is okay to feel sad about moments that have passed or been lost altogether for a family with a member who has a disability. Sometimes Anger still lurks behind my parental calm when I think back to what we lost. Fear is close beside Anger, a funny pair both regurgitating what has happened and anxiously anticipating what might unfold. To appease the two I remind myself about how Davis takes his day, fully present and without the capacity to be in the future or the past. With his pudgy hand in mine, we might stand by the shore and wiggle our toes in the sea. We might toss a ball back and forth and giggle when we miss catching it. He keeps me here. Davis has taught me how to love and how to accept being loved. His ‘challenge’ helps ground me. His ‘soulful’ eyes help lift me. Still…I need practice.