Relocation/Consternation
My four year-old has Down syndrome. Yesterday, I sent her off to school for the first time in our new suburban town. We chose this particular suburb because of its reputation for a committed and loving approach to educating and including children with special needs. In New York City, where we lived for eight years, the best strategy for families with limited financial resources looking to get their special-needs kids into decent education environments was to sue the city. Every year. Until they turn twenty-one. Usually these suits are successful, but we have no stomach for this kind of thing, and we don’t have the finances to keep a lawyer on retainer for seventeen years, so we moved. Even though we’re now in a better neighborhood, I can't help but worry a little bit extra about my sweet Miss M, since the country seems to be falling apart on so many fronts. Five years ago, the medical team who told us our unborn baby would have Down syndrome advised us to “terminate.” Hearing a diagnosis of Down syndrome is a horrible, terrible shock. All your hopes for your unborn baby, for your family, for your own journey into old age, change in an instant. To have people not-so-subtly reminding you that your child will also be a burden on society is a crushing blow. Yet this is the message that all too frequently gets sent to people in this very unfortunate, and vulnerable, position. We know Miss M won’t be going to Harvard, just as we knew we had to get out of the city in order to find a more hospitable place to raise our family, a place where she has the freedom to pursue her interests and talents. Maybe she'll end up living on her own, holding down a job, and, at least partially, supporting herself. Come to think of it, that’s what I’m hoping for all my kids. But under a government that seems intent on making ALL of us wards of the state, how long before some of us are deemed too much of a burden? After all, we’re living in a country where the president's right-hand man feels free to drop the R-bomb in the White House and Mr. Obama himself jokes on late-night TV that his atrocious bowling skills might qualify him for the Special Olympics (remember? he got a few laughs). I wonder what the future holds. Not just for my little Miss M, but for all of us.
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May '10
Re: Relocation/Consternation
Ursula,
Your daughter has obviously won the parent lottery! It sounds like you are making a series of decisions with her best interest in mind, not the least of which was to decide that no matter the circumstance; Miss M would be a part of your family.
My wife and I found out that we had a chance of our children having Cystic Fibrosis(CF.) I think I can relate on some level to the roller coaster of emotions that you must have had and still experience, including being informed of the options open to us at that time. Our six month old son has CF and while I wouldn't wish for this burden on us, much less him, I wouldn't trade a moment of the daily routine, doctor's visits and worrying for the joy that he has brought us and the amazing life that he will lead.
Continued below.
May '10
Re: Relocation/Consternation
Recently, in an online CF forum, I read a mothers' comment regarding her decision to "terminate" her child as an act of 'selflessness,' knowing the difficulty that her child and family would face. This woman was obviously heartbroken, but all I could think was what a load of bunk! One small step of faith could have brought, yes, trial and pain, but also a love like few other things on this earth. I would like to affirm you and your family for making true selfless decisions.
I, too, am deeply concerned about our nation and the fact that some feel it is a good bargain to trade the unfortunate elements of a private system: rising cost, the possibility of citizens who are uninsured, underinsured or struggle with pre-existing conditions for the unfortunate elements of a public system: mainly, trust that a bureaucracy will have the same value system that the citizenry have and would spare no resource or expense for the health of one citizen, whether continued treatment or life for that matter, is advisable or not.
May '10
Re: Relocation/Consternation
Wow. God has granted an extra measure of grace to those who use it wisely. I admire you both.
May '10
Re: Relocation/Consternation
Yes indeed. Thank you for sharing.
Re: Relocation/Consternation
An amazing post, Ursula. Thanks for writing it. And I share your concern that a culture that sees all of us as wards of state ends up serving all of us poorly. If it's up to the whole village to raise a child, the village just won't do it, or won't do a very good job. Thank God, at least for now, it's still up to parents. And even bigger thanks that it's often up to parents like you.
Edited on May 28, 2010 at 3:54amMay '10
Re: Relocation/Consternation
God gives special kids special parents. By your early faith and sacrifices, it's clear you have the strength to give your daughter a beautiful life.
In my close-knit extended family, I have relatives with everything from schizophrenia to Angelman Syndrome (she will likely die a young woman). There are great challenges, and there are times when it's hard to see how things could possibly end well. But they are all such blessings! Nothing ignites love within a family like the call to sacrifice.
May '10
Re: Relocation/Consternation
I would have thought that New York, cosmopolitan as it is, would have been more accommodating.
May '10
Re: Relocation/Consternation
Ursula Hennessey, my Heroine. You have not only stood up for the sanctity of life selflessly, you have stood up for your daughter's quality of life. Bravo! Blessings on you and your family for making difficult choices to take on real life with it's highs and lows.
Re: Relocation/Consternation
Brian Smith:
Recently, in an online CF forum, I read a mothers' comment regarding her decision to "terminate" her child as an act of 'selflessness,' knowing the difficulty that her child and family would face. This woman was obviously heartbroken, but all I could think was what a load of bunk! One small step of faith could have brought, yes, trial and pain, but also a love like few other things on this earth.
You've got it so right, Brian. Women are now oddly comfortable admitting they've chosen termination because of chromosomal disorders. I just read this kind of thing in an interview with older moms in the Yale alumni magazine (not an alum, just happened to see it). Society affirms abortion, in these cases especially, as brave, selfless, considerate. But, wow, you are so right, also, to note the "love like few things on this earth." Yes, there are extra doctors' appointments, and extra practice for simple things like wiping her nose or getting a spoon fully into her mouth, and challenges parenting our other children in relation to their sibling. However, the gifts outweigh the burdens in a proportion that is as massive as it is divine.
Re: Relocation/Consternation
True, Michael, you'd think that, right? And, actually, it's a great place to live (maybe the best) for infants and toddlers with special needs, ages 0-4. We got real lucky in that regard. Miss M is off to a running -- sprinting! -- start because of NY state and city. However, it's somewhat of a disaster to be there from ages 5-18. Then, there are some good support systems and options for young adults with special needs. Overall, I shouldn't bash the place. Those early days are when parents often need the most help navigating this new, overwhelming world. We're just grateful there's a new place for us to settle where Miss M will continue to be pushed, lovingly, toward independence. Our experience has been a remarkably positive one, not a frustrating one. I suppose I should have stressed that.
May '10
Re: Relocation/Consternation
Wouldn't want to live anywhere else. I've been in Queens since forever.
Women definitely don't terminate mal-formed fetuses out of selflessness; its a selfish act aimed at avoiding inevitable financial and emotional burdens associated with raising children with special needs. Whether one should terminate or not is a separate issue (I don't consider selfish acts to be immoral ones). But its better to be honest than misleading in this context.
Re: Relocation/Consternation
At my high school, we were required to do service hours, and I wound up volunteering at a place called Special Camp for Special Kids in Orange County, CA (a wonderful organization for any special needs parents in the area). In the course of a week, the counselors would take the kids to a series of amusement parks and other public places where they could have fun, give their parents a much needed rest, and interact with peers -- and I'll never forget how terribly some people treated the kids while out in the world, though in other people these kids brought out the best and gave so much joy that one almost felt sorry for the people who didn't get it.
Another organization I've grown familiar with is Camp Painted Turtle, a hyper-medically equipped overnight camp vaguely near Valencia (its administrative offices are in Santa Monica). It's one of the non-profits that Paul Newman founded, and if any parents in California have kids with serious medical problems that have always precluded them from the summer camp experience, I recommend checking it out.
May '10
Re: Relocation/Consternation
Wonderful post. My niece is a special-needs child, so our family is very familiar with the challenges and rewards these children offer. The comments here only reinforce my own experience - special needs children thrive in a welcoming, dedicated family and with the support of faithful professionals dedicated to their well-being. Government and public institutions rarely work their way onto the list of what brings the best out of a special-needs child. (There's a broader point to be taken from that.)
That said, I can think of few better ways to demonstrate American exceptionalism than to observe our treatment of those with special needs like Down's Syndrome. I am grateful my niece lives in a country that actively encourages her potential and welcomes any contribution she can give. I can hardly imagine another nation that has welcomed such folk into the public sphere; instead, history reveals that societies have reserved grisly treatment for them and confined them to the shadows (or much worse). America's abiding respect for the sanctity of life has taken us in better direction. I pray we never lose that way.
May '10
Re: Relocation/Consternation
Thanks for sharing Ursula. People like your Miss M are a beautify ray of light in their families and communities. Unfortunately, those who believe otherwise will have fewer and fewer opportunities to be proven wrong now that 90% of people with DS are aborted. That is a real travesty. Your daughter benefits us all. Thank you for being her mother!
We'll always worry about what the future hold for our children... we're moms! For me it helps to try to focus on Who holds the future instead. :)
Good luck with the stay at home gig. I've been doing it for 6 years now! It is quite an adjustment at first, so I feel for you. But, it does get better, much better, and is so worth it in the end.
May '10
Re: Relocation/Consternation
Sorry for the typos...one of the many dangers of nursing while typing ;)