Tuesday, September 7, 2010
Reframing Life in the Presence of Critical and Chronic Illnesses
Four years ago at this time, Sierra, now nearly 15, was in the midst of chemo, kidney and heart failure. Next summer, dialysis, wheelchair, swooning. The following summer, rebounding from her 2nd kidney transplant and all the chaos that comes with moving to a new house. Last summer, moving toward more stability and what passes for normal around here. This summer -- nirvana, Ayers & Mutchler style.
As noted above, Sierra's life still entails, and will likely always entail, lots of medical support -- doc appointments, tests, meds-meds-meds -- 30 plus pills a day, feeding pump, etc. Her significant intellectual disabilities make every day an interesting adventure. But at least this summer there were massive doses of fun-squared blended in, especially this August.
The month kicked off with Sierra at sleep away Camp Sunrise (cancer camp) for a full week. She was home for only a few days before off we all went to Milwaukee (that's in Wisconsin ;-) for a long weekend to celebrate Max's parent's 50th Wedding Anniversary. We also managed to visit the Wisconsin State Fair (which would eat the Maryland State Fair for a mid-day snack) and we dined on deep fried cheese curds and deep fried pickles (whoa, those pickles completely rocked).
Pit stop back in Balto for a week to repack our bags (and go to work for the grups) and then we took a true-blue, kid-centric, wacko-fun family vacation to see Grandma Jane and Grandpa Leo in Tampa -- and to the Nickelodeon Hotel and Universal Studios in Orlando. There were slimings, Sponge Bob low-fives, a beach romp with Grandma, sing-a-longs with Barney, and flights through Hogwarts with Harry Potter. It was all wonderful, magical -- full of kid smiles, squeals, and laughter. Moments to remember and pull out on rainy days -- memories which can re-energize and nurture hope for more, and more, and more sweet times.
Of course, real life is messy, even vacation life, so there also was overly tired and cranky kids (and sometimes even parents) worn thin and mean by too much time spent in planes, trains, and automobiles.
There was a little, pink, Firefly cell phone that even went airborne, we suspect, on The Mummy ride. Miraculously, it survived its night in the tomb and was reunited with Sierra the next day at Universal's Lost and Found.
Not reunited with Sierra was her yellow purse, pink wallet with a few dollar bills and clear contact info for me, AND her iPod Touch. That somehow disappeared while we were at Nick Hotel. Sadly disappointing that some parent did not take the opportunity to teach their children well when they stumbled upon that purse.
Sierra can be pretty forgetful, and as she most likely left the purse in a common area of the hotel, Max and I were sympathetic to her loss, but also saw a teachable moment. The iPod Touch (a hand-me-down from brother, Sawyer, 11) is a much beloved, helpful, and instructive toy for Sierra. She uses it at doctor's offices, on planes, when she feels anxious and needs to calm herself and focus, etc. As tough as the loss was going to be for her, we decided we'd wait until her birthday on 9/28 to replace it. Or that was the plan.
On returning to Balto and reading a facebook post about a young adult with cystinosis, plans changed. I'm fb friends with many parents who have children with cystinosis, or young people living with cystinosis. There are only about 300 people with cystinosis living in the US. Its great to support each other through the web, even if we are not able to physically be close. We cheer each other on, and comfort each other when times become challenging.
As I read a fb post after getting home about a young man who passed away at age 25 from cystinosis in Tampa Bay, coincidentally, at the same time we were vacationing in Tampa Bay with Max's folks, my perspective on lessons and time changed. Preston's Story: http://www.tampabay.com/news/obituaries/preston-towriss-lived-a-full-life-despite-terminal-illness/1117741. Although we hold on to the hope that the medications and interventions developed during the last few decades will slow down damage from the disease and improve quality of life, there still is no cure -- for now. Preston's loss of sight in particular reminded us how important it is to give Sierra her hourly eye drops all day long. Everyone living with this disease is an inspiration as they tell a story about perseverance and resilience.
We don't want to spoil our kids. We want to help them learn and grow in to good, kind, caring, responsible, loving, thoughtful people. But we also are constantly reminded about time -- how uncertain it all is. Three young people with cystinosis have passed away this summer. Three out of three hundred in a few months time. If an iPod Touch can bring Sierra some comfort and joy, why wait until the end of September? Happy Birthday now! Let's make every day a birthday for all of us. Like a birthday prompts, let's look back at life and think about all the good and the hard and how it has brought us here, and anticipate the future with hope, and yes, maybe some trepidation as our path through this patch of forest has not always been free from brambles and hungry wolves. Sure, we need to keep watch, but even more importantly, we need to keep joy.
Sierra has proven herself to be one tough, if tiny, contender. Because the future remains uncertain for any of us, especially those among us living with chronic and/or critical health issues, we're trying to be mindful of making each day a summer vacation extravaganza, birthday blow-out, anniversary bash, and joyous holiday celebration.
So, on this last day of summer vacation, I'm going to dance with my kids, build puzzles with Sierra and help her play solitaire on her new iPod, smash some zombies with Sawyer and sing his new favorite song with him which he's belting out and blaring loudly and endlessly as 11-year old boys like to do, and go out to eat at Edo Sushi -- making sure to bang the gong as we enter and exit the restaurant to call out the joy and make this day sweet and memorable.