On Nov. 4, 1976, we sadly checked our daughter Abby out of the hospital a day before her first birthday. With a confirmed diagnosis of spinal muscular atrophy (SMA) and the prediction that she might not have a second birthday and quite likely wouldn’t have a third, the last thing we wanted to do was to spend what might be her only birthday in the hospital.
Fast forward to today, a November afternoon in 2005. I’m just back from the airport, where I saw off Abby and a friend on a flight to Las Vegas. Abby and eight friends are gathering there to celebrate several of their 30th birthdays this year — including hers.
Right now I’m introspective, happy and tired. Thinking back over everything she’s accomplished in her three decades is mind-boggling. I’m not just happy, I’m ecstatic that she’s embraced life with overwhelming enthusiasm.
And I’m tired. I’m sure many people reading this understand the profound physical and emotional exhaustion that comes from pushing bureaucracies to do what they’re supposed to do, from handling all the physical needs for a loved one who can’t even scratch her ear, and from knowing that whatever happens, I’m Abby’s caregiver of first and last resort.
Abby has always been adventurous and eager to try new things. She got her first electric wheelchair at 4 years old and I swear she wore it out jumping curbs. She considered any long incline a personal invitation to see how fast her chair could go or whether she could beat her sister, Katie, in her chair.
Katie was two and a half years older than Abby and had a more serious case of SMA. Katie considered Abby her personal baby and as the girls grew, they were incredibly close and loving.
Katie made it almost through the eighth grade before SMA took her life. When Abby hit eighth grade, she seemed to be on the go every minute — almost as if she was trying to make up for what her sister missed.
Because Abby always seems to be doing interesting things, people often ask me how I did it. But I didn’t do it — she did. All I can take credit for is holding the door open and getting out of her way.
I’d like to think Abby’s success is due at least in part to the philosophy my husband, Mike, and I developed while the girls were very young. We decided that, even though we weren’t likely to have them for a long time, we’d raise them as if they would grow up.
The fun part was making sure they had the kinds of experiences they’d normally have, though sometimes modified to meet their needs. They did Brownies and Girl Scouts, youth activities at church, had sleepovers and went to sleepovers, shopped at the mall with their friends, etc.
The somewhat-less-fun part was making sure they learned manners and self-discipline. We’d seen families unwilling to teach self-discipline to their disabled children and the “poor dears” were often unruly, unhappy brats — who made anyone near them unhappy. We didn’t want that for our daughters.
Perhaps oddly, we always treated our daughters as if they’d go to college. To that end, at the finish of every school year, we allowed them a new challenge. It could be crossing the street alone, walking to McDonald’s with friends, or taking the train to Berkeley with a friend to hang out. Every year the challenge gave Abby more freedom, and by the time she went to college in Los Angeles, she was both confident and careful.
Do I get worried when she’s out? Oh yeah! I’m her mom and she’s significantly more fragile than most women. But if I wrap her up in metaphorical bubble wrap to keep her safe, I’ll smother the independent young woman she’s become.
Hard to believe
While hanging around with Abby, I’ve had some incredible and unique experiences. How many other parents went on every single school field trip through junior high (when she told me to knock it off) and got to see everything from a live performance of “Phantom of the Opera” to cows peeing on a farm? How many have flown (free) first class to New Orleans because their kid convinced her boss that he’d have to pay their way?
How many other parents got to go on every one of their kid’s job interviews? My job was to see if she could get into the building, help with elevators, discreetly check whether the bathroom would be accessible for her and then go get a cup of mocha until she reappeared. That first year after she graduated from college I drank enough mocha … well, you know.
Now she works for a publisher, commutes to San Francisco and travels with friends. If you’d told me this was even a remote possibility in the hospital that November of 1976, I wouldn’t have believed you. Sometimes it’s hard to believe even now. I’m so proud of her for leading a life she’s built for herself and for everything she’s taught me.
Yes, I’m happy … and introspective, and yes, tired. While we always behaved as if she had a future, there were many times we feared we were wrong (especially during medical emergencies). I’m very happy that she does so well in a world that still has a long way to go to accommodate her needs and the needs of others with disabilities — and I’m tired.
Some of that tired feeling comes from worrying about what the future holds and some comes from handling the physical needs of an adult woman. There are already things I used to be able to do for her that I can no longer do. It’s frightening to contemplate what will happen when Mike and I can no longer give her the care she needs to live the life she loves.
But for right now, I try to focus mainly on the present. We have a loving, generous, delightful daughter who tells outrageously funny puns — and we’re blessed to share each other’s worlds.
Donna G. Albrecht is the author of seven books including Raising a Child Who Has a Physical Disability (Wiley) and Buying a Home When You’re Single: Revised and Updated (Wiley). She writes about health, business and playgrounds. She and her family live in Northern California with their border collie, Prince.
by Abby Albrecht
I’m 30 years old. It’s an age I never expected to see. Well, to be honest, I never really thought about it. I never plan too far in advance for anything.
When other girls talked about their dream weddings, I’d have to admit I hadn’t even planned what I was doing next weekend, let alone something that might happen, maybe, possibly.
As most of you know, doctors aren’t very optimistic about the life spans of people with spinal muscular atrophy (SMA). My parents were told not to expect my sister, Katie, or me to live past 3 years old. So 30 became this mythical idea to us.
Oh, it was never anything morbid. We never sat around and planned death (well, except for certain funeral details, but I’ll get to that later). Instead, we were brought up to enjoy each and every day and let the things we couldn’t change come as they may. A song in the musical “Rent” puts it eloquently: “No day but today.” A quote I’ve always liked, from a movie I seldom admit to watching, “Point of No Return,” sums up how I tackle life: “I never did mind about the little things.”
Little things vs. big things
For me, survival became a little thing. Worrying about my health and my future were little things. Why should I focus on little things like how old I would grow to be, when I had more pressing matters like Brownie badges to earn and sleepovers to attend? I let the doctors worry about how old I would grow, and I only saw doctors who thought I might live a while.
Not that I’m not realistic. When traveling, I’m the one who always adds in time for bathroom breaks and transit breakdowns. Those are the kinds of big things that matter in my day and can make huge differences in my daily life.
Friends say I’m old for my age. I say I was a Girl Scout for too long. (I still carry matches and a sewing kit with me at all times.)
I’ve never turned away from surviving. (Well, I was a hormonal teenage girl, so never is a stretch.) I’ve spent my time trying new things. I’ve gone on acting auditions, traveled with friends to exotic locales (East Lansing, Mich.), lived in cities made famous in song.
I’ve never thought of myself as invulnerable. Especially after watching my sister die in her early teens. I knew how fragile we were medically — how fragile I am. And, yes, there have been times when I did mind the little things, such as when Katie died, or when I had hip pain so bad that even breathing hurt.
But that’s when my friends have been around to whap me upside the head and remind me that I’ve beaten so many odds already that every day is a chance at a free spin with life.
When I was little I never thought I’d have friends like I have. Even people I called my best friends I kept at arm’s length because the wheelchair always became an issue. High school was better, but as any sane teenager will admit, I didn’t love it.
Then in college I met the Horsechicks of the Apocalypse. We officially formed eight years ago, though we met three years before that through an e-mail list about a TV show we all watched called “Forever Knight.” We shared our love of writing, of cheesy television shows and everything else.
The Horsechicks have been my rock through college, Mom’s kidney transplant, employment, unemployment and my health circus. They’ve enabled me to go on trips I never would have managed on my own.
So, for my 30th birthday in November we decided to pull out all the stops. Like a winner on the TV show “Survivor,” I’d outlasted doctors’ expectations. The only way to celebrate was to go where gambling on odds was a way of life. It was time for Las Vegas.
The trip itself was lovely. Southwest Airlines earned our eternal love by making loading easy and not breaking my chair. The MGM Grand was comparatively accessible and actually put us in rooms near each other. Studio 54 at the Grand was fun for people-watching and played music I loved (though the smoke was a bit thick).
I have fond memories of watching Celli ride a roller coaster that was a lot faster than we expected. Of dragging Dianne and Lizbet to the Grand Buffet for Sunday champagne brunch and boggling at how attentive our server was. Of playing slots with Perri whenever we felt we had too much folding cash on us.
We didn’t mind the little things, like my health. But of course, big things arose, such as personality conflicts. Eight women, two rooms — not a smart equation. It was great! (If you consider watching some friends leave a room whenever another entered great.) I was shaking in anger by the time I returned from my vacation.
So, why was this great? Because the little things really didn’t matter. This had nothing to do with my health and disability. This had to do with normal, boring disagreements. The Horsechicks still are dealing with the aftermath of these big things, but the problems are controllable.
Keeping up with the big things
I’m not so silly as to think that since I hit 30, I’ll be fine from now on. The Horsechicks know I don’t have the stamina that some of them do (even if I was the last to leave Studio 54).
Like my parents, they know my wishes in certain health situations and when I die. They may not follow all my wishes — Val refuses to gnash her teeth during the Wailing and Gnashing of Teeth moment of my memorial service, something to do with her ortho-dontia.
But they know that we should enjoy every moment. Well, most moments. When we don’t want to kill each other. (We are friends, after all.)
So, I’m 30. I’ll never be the type of person who dreams about my future. I have no preconceived ideas about my dream wedding or where I’ll be in 10 years. Right now I’m just trying to keep up with the big things in life: whether I’ll see “Rent” again in theaters and whether I’ll work all week this week. I refuse to let myself get caught up in things I can’t control.
Abby Albrecht, a Northern California freelance writer and Web designer, is also known as the Stable Girl for the Horsechicks of the Apocalypse.