“A” Is For Adjustment

“A” is for Adjustment

My favorite baby photo of my “big brother” Ralph.

Early on in my parents’ visit last week, I used the old standby “A is for apple” to help us remember where we parked at a particular location. But as events played out over the past seven days, I’ve realized that at this point in time, “A” is for adjustment.

Let’s just say our time together did not unfold quite as intended, since none of us wanted or expected my dad’s four-day hospitalization to be part of the activities. Thankfully, he’s alright now.

“A” is for Adjustment.

My mother had a painful arthritis flare-up in her finger, which impacted her ability to enjoy her time in Florida. Although she looks at least ten years younger than her actual age, she takes naps now — something she never did before.

“A” is for Adjustment.

It’s not easy to acknowledge the effects of aging on your parents, especially when you’ve been accustomed to a mother and father who are full of life, optimistic, smart, fun-loving and interested in a variety of things ranging from professional sports and college basketball to politics and cultural events. As I make my adjustment to this new phase of their life, I focus on gratitude for having been their child and for still having them here with me on Earth.

“A” is for Adjustment.

Ralph in elementary school.

But as difficult as it has been to make that shift, what’s happening with my brother Ralph is the hardest to take. Born with A Little Down Syndrome, he has already overcome tremendous obstacles, with the help of my parents, our extended family, friends, teachers, and mentors. He exceeded expectations and overcame one misguided doctor’s dire prediction by being a good student (an astute elementary school teacher asked my parents for permission to promote him to a slow learners class, where he thrived) and eventually finding employment at Mercy Catholic Medical Center for 23 years, where he consistently received excellent employee reviews from happy bosses.

Most importantly, his outgoing, gregarious personality and loving nature affected everyone who knew him. How could anyone not be enriched by spending time with Ralph — someone who loved unconditionally, embraced life fully, and found joy in the simplest activities. While we were growing up, he was my go-to playmate who never turned me away and always made me laugh, no matter what we decided to do. Our most famous collaboration as kids was our imitation of Danny Zuko and Sandy Olson from the movie Grease, as they danced and their way through the fun-house in the final scene (in our case, the two long steps leading into our rec room served as our version of “The Shake Shack.”) It’s a miracle no one broke the vinyl (remember those?) soundtrack to the movie to end the insanity of our endless, repetitive demonstrations.

Shockingly, no one did. As a matter of fact, many years later at Ralph’s 40th birthday party, family members and friends begged us for a re-enactment, which we happily obliged. Back then, I was so grateful that he’d hit the 4-0 milestone, I didn’t care about making a fool of myself.

Ralph with nieces Sophia (left) and Julianna celebrating his 50th.

Fast forward another 10 years. We held another special celebration in honor of Ralph’s 50th birthday — an Oscar-themed party complete with life-size cut-outs and posters of his favorite actors like Clint Eastwood, and replicas of the Oscar statue. At the time, he was still passionate about movies, reading, dancing, and the WWE.

I miss those days. I miss my happy-go-lucky special brother who never needed coaxing to smile; or to put on music, sing, and dance; or to read a book.

None of us knew back then that Ralph would soon face his most formidable opponent yet; one much more powerful than Down Syndrome. One that had no mercy in its zeal to rob him of everything he’d worked so hard to accomplish, including a fully functioning mind that could comprehend John Grisham novels, and remember the names of soft drinks, and whether or not he’d taken a shower that morning, or if his clothes needed to go into the laundry.

A friend of mine had warned me about the link between Down Syndrome and Alzheimer’s years before Ralph’s diagnosis. Like any good sister, I prayed that he would be spared such a fate. Surely, God would not ask him to endure something so awful after he’d already proven himself to be a worthy overcomer?

For reasons unknown to me, Ralph was not spared from this memory-stealing monster, for which he has been on medication for almost five years. Back then, the doctor warned that it would only delay the inevitable. I suppose some gratitude is appropriate because it did stop the progression much longer than I had anticipated.

Back in the day: Ralph and I engaging in one of our favorite childhood rituals.

Even so, his personality completely transformed over time. The outgoing, confident guy who loved to laugh, joke around, and talk incessantly was gradually replaced by a reticent, serious and somber shell of his former self who sat in silence during car rides, lashed out at good-natured teasing and lost interest in just about every hobby he’d previously engaged in with passion. No longer does Ralph beg to go the movies or express interest in books, music or wrestlers like John Cena (one of his former favorites.) In fact, if you ask him about a movie he’s just seen, he has difficulty expressing any sort of informed opinion about it.

These days, the only activities he still seems to enjoy are bowling, slot machines, and using his iPad.

“A” is for Adjustment.

Somewhere along the way, during one of my visits, I was working downstairs in my parents’ basement when Ralph approached me in tears. “I want my life back. I want my memory back,” he cried, putting his arms around me. While my heart was breaking, all I could do was hug him and assure him that I would be there for him, no matter what. Nothing — not even Alzheimer’s — could ever make me lose sight of who he really is. In my mind, I contemplated how I would handle the devastating time when he would no longer remember me or anyone else in the family. It seemed impossible to comprehend but I vowed to hold onto my memories of him and do the best I could to adjust.

Celebrating mom’s birthday, circa 1992.

Which brings me back to the present. I’d been handling some unforeseen events involving an unreasonable client whose hurtful words temporarily affected my confidence and caused me to question everything I was doing professionally. Then Ralph arrived with my parents and changed my perspective.

In a horrifying moment of confirmation, we realized the doctor was right about the medication when Ralph insisted he was home in Newtown Square and not in Melbourne — even though we were surrounded by palm trees, balmy breezes and sunshine. I reminded him about the plane ride he’d taken the day before, with no success. At some point he let it go, leaving me to wonder if it’s best to just agree with him in these situations, rather than attempt to bring him back to reality.

“A” is for Adjustment.

The Ralph I loved from my earliest memories of childhood is gone, though his pure heart and capacity for unconditional love remain. He began to take his leave about a year or so after marking his 50th birthday in grand style. I mourn him every day, even as I continue to love and support the man he has become — a brave soul who continues to fight a merciless opponent that will not be satisfied until it takes everything away from him. Everything, that is, except the love of his family and friends.

“A” is for Adjustment. 

At this point, it’s all I can do.

 

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Writestream Tuesday: Down Syndrome Awareness and the Right Wing Riot – UPDATED

Did you know October is also Down Syndrome Awareness Month?

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In honor of the occasion, I am hosting a very special Writestream Tuesday on October 14 at 1 p.m. Eastern. During the first hour I’ll talk about my wonderful brother Ralph and the amazing impact he’s had not just on my own life but the lives of countless others who have been blessed to know him. I also encourage listeners to call in with their personal stories of special folks in their lives with Down Syndrome at (347) 945-7246.

Back in the day: Ralph and me engaging in one of our favorite childhood rituals.

Back in the day: Ralph and me engaging in one of our favorite childhood rituals.

And because I am not one to shy away from controversy and hard realities, I’ll also discuss the depressing statistics with respect to Down Syndrome: 90% of unborn babies found to have Down Syndrome are aborted. That is a tragic, sobering fact – one I refuse to ignore. So while this will mainly be an uplifting show, I’d be remiss if I neglected to address it.

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In the second hour, stay tuned for public service satire with the Right Wing Riot featuring the Luminaries of Liberty – Scary Smart, Ms. Always Right and The Prince of Whitebread.

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Click on this link to Writestream Tuesday: Down Syndrome Awareness and the Right Wing Riot to listen online or call (347) 945-7246 to listen by phone.  See you then!

 

UPDATE: Happy to announce that Tears of Paradox author Daniella Bova will be joining me in the first hour!

 

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