“A healthy baby” is the near-automatic response of every pregnant woman when asked what she’s hoping to have. It’s why women take prenatal vitamins, abstain from sushi and alcohol and just about everything else that brings them pleasure, and submit to a battery of tests, sometimes for 36 straight weeks, that help guarantee the finger and toe count at birth will be no more or less than 20. It’s also why the first thing they do after ensuring the regularity of their newborns’ tiny heartbeats is stare for days, weeks, months and sometimes years at the marvels that are their vibrant little bundles of love.
That being said, most women still take it for granted that their babies will be just fine, because most of them are. Unfortunately, however, some of them are not.
“It’s like you’ve spent years planning for a trip to Italy,” my friend Stephanie explained to me using the famous analogy by a mom with a disabled child. “You book your flights and hotels, you plan your itinerary down to the restaurants and sightseeing stops.
“But when you get off the plane, it turns out you’re actually in Holland. Of course Holland is a lovely country, too. It just wasn’t what you expected.”
When Stephanie’s son Cash was born five years ago, he was a little peanut barely longer than the length of a dollar bill. After spending the first several weeks of his life in and out of hospitals, desperately sick and unable to eat or regulate his body temperature, he was diagnosed with an unnamed genetic abnormality on his X chromosome [46, Y, der(X)t(X;X)(p22.33;q28)], which is a rare or even unique condition that has caused an overall development delay, hypotonia (low muscle tone), autism and asthma.
While the doctors knew (and still know) next to nothing about his condition, they said Cash would never walk or talk. Stephanie never believed them, and with good reason. Cash took his first independent steps last month (although unlike toddlers who take their first steps and are walking altogether shortly thereafter, like everything else with Cash, the progress is much slower), and within the last week said “Mommy” for the very first time using sign language.
Cash is also now injected daily with growth hormones since he doesn’t naturally produce them, and he recently (and thankfully) developed enough strength in his lungs to be able to cough and sneeze (before which time he suffered from pneumonia about every other month).
Cash is an irrepressibly adorable kid. With his soft brown eyes and kissable lips, he’s endlessly lovable, and Stephanie is the first to acknowledge that there are plenty who have it worse.
But when you meet him you know immediately he’s a far cry from other 5 year olds. And that fact can be trying, but Stephanie insists she’s fine 60 percent of the time, more than fine 20 percent of the time, and spends the other 20 percent of the time in a darker place.
His family isn’t looking for a miracle cure, mostly because there just isn’t one.
“Cash is who he is,” Stephanie says matter-of-factly, albeit with a faintly sad, different kind of deeply serious love that only some parents ever have to understand, and that most parents, the ones with the healthy kids, never really have to think about.
Nevertheless, instead of accepting the unknown of his condition and the snail’s pace of his progress, Cash’s family wants to make his life better. Which is why the decision has been made to take him to India this winter for stem cell treatments.
Stem cells give Stephanie hope in a way that she’s never previously allowed herself, at least since Cash was a newborn. Still, she’s managing her hope with reasonable expectations. She hopes to bring Cash home with a better quality of life, maybe potty trained, and maybe with a core stability that can lead to increased and better communications. She’s not trying to fix him, because rationally, she understands there’s no fix for a chromosome.
Cash will need to be in India for two months for the initial treatment, with additional future treatments planned. The total cost is expected to exceed $100,000, which, of course, isn’t covered by insurance.
What most parents expect before meeting their children and live through after their births is that the love brought about by the experience of the life they created — no matter the number or quality of their chromosomes — is always exceeded infinitely.
To express your good wishes and learn how to make a donation to support the infinite possibilities in Cash’s life, please search for Change for Cash on Facebook. All funds will go directly to his therapy.
More at MeredithCarroll.com.
