I’ve created a very basic podcast detailing our journey to refill Mister Neil’s many prescriptions. I did this by creating a podcast on odeo.com, recording the audio, and then placing the audio in the podcast. Click on the bar below to play the podcast, and be sure to let me know what you think:
Please take a moment to read this column by Newsweek’s George Will about how parents deal with the news that their unborn baby has Down’s syndrome, and my response, sent to Mr. Will on January 29:
Dear Mr. Will:
There’s a spot in our local supermarket, at the end of the aisle where they sell small appliances on one side and cake mixes and frosting on the other, where I learned in January 2002 that our son, Neil, had cystic fibrosis. A genetic screening test, required for newborns in Pennsylvania, revealed that both of his birth parents were CF carriers, and that he indeed had the defective gene.
My wife struggled with disbelief and fought back a flood of tears as she told me about the test results, which she had received minutes earlier from the wonderful social worker who had shepherded us through the adoption process.
Then came the question – the question that neither one of us wanted to ask, but had to answer: would we give him back? Our social worker told my wife that she and the agency would understand completely if we decided to cast Neil to the bitter winds of the foster care system. During the preparations for his birth we had made clear our willingness to adopt a child with any of a number of health-related or family-related challenges. But still, the social worker said, they would understand. We could change our minds.
In a second, I tried to even barely comprehend what Neil would go through, how his life might unfold, armed at the time with only a cursory knowledge of CF. My wife was stunned, even angry, that the social worker would even ask us about backing out on our promise. We talked only for a moment or two, shared our doubts and fears, and even sketched out the framework of a plan to make it through the next few months.
Then the answer came: not a chance. He was our son, and we would deal with the challenges together. We still cannot imagine making a different choice, but continue to acknowledge that ours might not be the right path for every family. We continued to love and push forward even after learning that Neil suffers from a form of cerebral palsy, and also is thwarted in his efforts to gain weight by a severe case of gastro-intestinal reflux disease.
Which brings me to your January 29 Newsweek column. Your unfeeling assessment of the motivations behind the decisions made by some families to abort Down’s syndrome babies reads like the well-worn passage from the GOP’s election playbook that asserts that any woman who chooses to have an abortion must have made that decision lightly. You know the one: silly, flightly women – they give the same amount of thought to aborting a baby as they do to picking a new hairstyle, keeping tabs on Paris Hilton, or where to go to lunch with their friends so they can mimic the characters on that horribly raunchy show Sex and the City. They should find their way back to the kitchen, so that we can keep an eye on them while we men reestablish the sanctity of the American family.
Thanks to some skilled spinning from the Christian right (which has busily circulated your thoughts on the subject at hand), and some cowardice and calculated side-stepping on the part of Democrats, this line of reasoning has pushed itself on to the national agenda.
But it is nonsense.
The American College of Obstetricians and Gynecologists promotes screening only as a means for families to reach an informed decision about the direction their lives will take once a child with special needs enters their hearts and home; the group’s policy is not a how-to manual for mounting a “search and destroy mission,” as you assert. Wouldn’t it be better if families carefully considered these decisions, rather than try to build a family while possibly dealing with the anger and resentment produced by their lack of understanding?
Shouldn’t we applaud, or at least respect, a couple who takes the time to decide that they might not be ready to embark on such a daunting journey? The clear “God will provide” subtext in your column is outdated and irrelevant to these experiences. Love is powerful, and can overcome a great deal, but only if it’s partnered with information and common sense.
Steps taken by our elected leaders to improve the communication process between families and physicians are encouraging. Senators Kennedy and Brownback in 2005 co-sponsored the Prenatally Diagnosed Condition Awareness Act, which, if passed and signed into law, would “increase the provision of scientifically sound information” to parents. One of the catalysts for the bill was a study done by a Harvard Medical School student who found that physicians at Children’s Hospital in Boston often offered inadequate information to families facing a Down’s syndrome diagnosis, and in a few cases, pressured them to abort their pregnancies.
The bill calls for the National Institutes of Health and the Centers for Disease Control to establish an array of resources for parents trying to compile information on Down’s syndrome, including a telephone hotline, support groups, and a national registry of families willing to adopt a child with Down’s syndrome.
All necessary changes, to be sure. But the tone of your column suggests that even with all of this information, women would blithely choose to abort. It’s a long way, rhetorically, from reining in an imperious physician to suggesting that women almost automatically participate in the “casual destruction of pre-born babies.”
We’re lucky: Neil’s first pediatrician, whom we consulted on the advice of a friend, knew he was in over his head, having not treated a CF kid in 30 years, before the recent advances in treatment, and corresponding steady increase in life expectancy. He suggested we start a relationship with the CF Clinic at the A.I. DuPont Hospital for Children. The doctors there have treated Neil with expertise and great care.
Neil turned five this weekend. His CF symptoms are mild; his lungs have yet to be compromised by his ongoing struggle against the thick mucus that his body can’t properly expel. But thanks to the combined efforts of his remarkable mother, his doctors, therapists, teachers, his favorite babysitter Lindsey, and the rest of our family, he is doing remarkably well.
As someone once said, “It takes a village to raise a child.”
Thanks for reading my letter. My wife and I are thrilled to hear that your son is doing so well.
Sincerely,
Ron Bishop
This is my first shot at inserting a video clip in my blog, so bear with me.
In mid-December, the folks on The View, when they weren’t trying to show the world what a jerk Donald Trump is, stunned (in a good way) a little girl with CF when they brought the cast of the Broadway show Rent to the studio to sing for her. Check it out:
We kept Neil home from school today because he was running a slight fever (about 99 degrees), and was battling some serious nasal congestion.
In most cases, 99 degrees is not cause for alarm. But a fever for Neil triggers all kinds of alarms in our house.
Sheila and I tell ourselves that a fever is a good thing; it tells us the body is fighting, trying to heal. But for the parents of a CF kid, even a minor fever triggers fears that the increased body temperature is a signal of an oncoming infection.
For Neil, this means a round of antibiotics, a day or two out of school, and a quick recovery – so far. We are hoping desperately to hold off the day when the fever means that his lungs have been compromised by serious infection.
New and improved medicines mean that these infections can usually be stifled, but never completely knocked out. They usually mean that the CF patient can expect to embark on a sometimes lifelong cycle of hospital visits and more aggressive treatments.
If Neil had been born in the 1960’s, he would have probably lived only five years – that was then the average lifespan of CF patients. So instead of getting ready to celebrate his fifth birthday this Sunday at home with a party, we quite possibly would have been celebrating in a hospital, or trying desperately to brace ourselves for living without him.
Not that these thoughts ever completely leave your mind. Today, though, he’s doing well. His last CF Clinic visit at the A. I. DuPont Hospital for Children revealed that while he’s still struggling to gain weight (he’s nearly five, and weighs a little less than 30 pounds), his lungs are clear, and a throat swab detected no sign of bacteria in his lungs.
The inability to gain weight is a pretty typical struggle for CF patients. Following consultation with his nutrionist, we’ve been adding melted butter, cream cheese, and/or Carnation Instant Breakfast to his food in order to ramp up the calorie count. As Neil gets older, we’ll work hard to ensure that he gets the more than 3,000 calories he’ll need each day to help maintain his health.
The cruel irony is that Neil also suffers from gastro-intestinal reflux disease (GERD) and has only recently developed sufficient muscle tone in his mouth to enable him to tolerate even slightly chewy foods. So it’s been baby and toddler food for him from the time he was two months old. We joke about how tired he must be of applesauce.
But like so many families who deal with CF, we’re thrilled when we read that median age for kids born today with CF has increased from 32 years in 2000, to 36.5 years in 2005. Forty percent of CF patients these days are 40 or older. All great news, courtesy of the Cystic Fibrosis Foundation.
But that still means that we will outlive him – a fact that we file in our short-term memory and only deal with from time to time when we’re feeling strong enough.
Next: I’ll take you through a typical day for Neil – his many medicines and treatments, but also his curious love of ceiling fans, swinging doors, and the song “Bingo.”
Welcome to my blog – I thought it only fair that since I’m asking all of you to create blogs, I’d create one, too.
After our discussion last week, I decided to narrow my focus a bit, from issues that touch the lives of special needs kids, to issues faced by families of kids with cystic fibrosis (CF).
The rest of the content is about the same – I’ll write about everything from insurance snafus to dealing with doctors, to linking with other families, to thoughts and emotions that families like mine encounter on their journey.
I’ll also try to include enough expert guidance to make this a valuable source of information for those who have special needs kids, and those who simply want to learn more about these issues.
