Each of us is born with an expiration date. We won’t live forever, but we like to believe, we like to hope, we’ll live long, healthy, active, interesting lives. Die old and well worn in our sleep someday, a smile curling our lips thinned from decades of laughing and singing.
That said, people are well aware that things can happen that might make for a very different type of ending. They’ll mention the You-Curb-Bus-Goodbye scenario, abstractly acknowledging anything might happen at anytime. But they don’t really think it could be them – or their spouse…mother…child…best friend. That it might be now. Or very soon. Or just plain far, far too soon.
But what if you knew? Not knew the exact date, but were pretty certain the dying with a smile on your face 80 years from now was highly unlikely. A much shorter shelf life was in store.
When it comes to children, parents’ hopes and dreams are usually only greater. With medical and social advances, we want to believe our sons and daughters will live wonderful lives that extend far past their 100th birthday.
I’ve had to teach myself to dream different dreams.
My daughter, who has developmental disabilities and verbal apraxia, also has a very rare, chronic, and progressive genetic disorder called cystinosis. Only 500 people in the U.S. have cystinosis. It can cause multiple organ failure over time, tissue damage, and muscle wasting. Just think of all that muscles do. They not only help you bench press and tango, but breathe and swallow. And organs, well, most of those are must haves to keep on living long and healthy.
My sweet, baby girl, Sierra, now 20, was in kidney failure by age six and underwent her first kidney transplant then. She developed lymphoma in her lungs when she was ten as a direct result of the immune suppressive medications she needed to take to maintain her transplanted kidney. It’s a rare type of cancer that about 1-2% of people who’ve had transplants get called Post Transplant Lymphoproliferative Disorder (PTLD). While undergoing chemotherapy to clear her body of cancer, she lost her transplanted kidney and went into kidney failure again, as well as heart failure, and on peritoneal dialysis for about fourteen hours each day. We almost lost her multiple times during those very tough eighteen months before she was finally declared clear of cancer and was able to find another compatible kidney donor.
Although my daughter is spunky and strong and a fighter, as well as loving, kind, and ridiculously cute, we have learned to accept that we will likely outlive her. Unless there is some remarkable medical breakthrough soon, her life will be distressingly abbreviated. To give her the best chance at the longest life possible, Sierra takes about thirty pills over the course of the day and puts eye drops in her eyes once every waking hour to help reduce the damage cystinosis is trying to wreak on her body, maintain her transplant, and combat the side effects of a lifetime of being heavy-duty-medication dependent. She needs to take medication every six hours, which means not having the opportunity to get a nice, eight-hour long chunk of sleep…ever.
We are thrilled with each clear annual CT scan that shows the PTLD has not returned, but, unlike many other cancer patients, Sierra will never be declared out of the woods. She’s back on the same immune suppressive medication that caused her to get cancer the first time. She has to be or her body would reject the kidney transplant she needs to stay alive. So, we think positively and keep our fingers crossed that her immune suppressed body will be suppressed enough to not attack her transplanted kidney and recognize it as foreign, but not so suppressed that it can’t fight off any cancer cells that might be trying to form.
We live every day knowing something bad could happen at any time. Her condition is chronic and progressive. Some new medical crisis will come along that, this time, she might not survive. It could happen tomorrow, or in six months, two years, or eleven years. We don’t know when, or what form it will take, but we know it will come. That’s not pessimism; it’s realism.
So, I’ve had to learn to dream differently than most parents. I don’t think about the future or agonize over things that may never be (vacations, graduations, first job, wedding, grandkids…). I don’t dwell or worry much. As my grandma used to say, I’ve learned to “not borrow trouble.” When trouble comes, I’ll deal with it, but that’s not now.
Now is about finding great happiness in what is right in front of me. Now is for hugs that come as tackles and the magic of forever believing in Santa Claus. Now is for giggling hysterically over impressive burps, trips to the grocery store where Sierra picks out items that she knows her brother likes, seeing her make herself an iced chai latte in a treasured mermaid travel cup a friend gave her for her 16th birthday. It’s taking her to concerts where she dances with abandon. Right now is listening to Sierra sing karaoke and shout out random, fabulous whoops of joy just because she is.
And she is extraordinary. Perfect in her imperfection. She is now. And we treasure all of this wonderful mess that is our lives. We work to make it…enough.
Julie Ayers is a mother to two exceptional children and works for the Maryland State Department of Education. When she can shake out a free moment or two, you’ll likely find her writing, or helping co-produce the Tall Trees Concert Series at Towson Unitarian Universalist Church. Her daughter, Sierra, is a junior in high school and regularly helps collect money for various local charities by assisting at the concessions table at the Tall Trees Concerts.
P.S. Organ donation saves lives. Please consider being a donor by designating that on your driver’s license, but also consider being a live donor. It’s easier than you might think, and you could even be an excellent match for someone other than a blood relative. Our daughter joined our family through an adoption, yet my husband was a great donor for her first kidney transplant. You could be a hero like him and save a life right now! To learn more visit: www.donatelifemaryland.org. To learn more about cystinosis or make a contribution towards better care and treatment of this disorder, visit Cystinosis Research Network at www.cystinosis.org.