“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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A Night At The Sleep Clinic

Last night, we finally got around to actually going to the sleep clinic for Ralph’s sleep test — a feat not easily pulled off. The night of our original appointment last month, he got so upset when it was time to go that he actually ran away, igniting a one-hour search effort involving my sister and brother-in-law, nephew and one of my sister’s close friends. Knowing Ralph to be a leisurely walker, none of us believed he’d gotten that far from home, which was why we held off on calling the police initially. But when our efforts proved fruitless, we decided we had no choice. Then just at that moment, much to our collective relief, a police car pulled up with our missing passenger in the back seat looking obviously forlorn and apprehensive about facing the consequences of his actions.

Seems there are still Good Samaritans in this world and one of them driving down Delchester Road spotted him and immediately called the police out of concern for his safety.

Fortunately, it ended well and Ralph was not hurt in spite of taking off on a very narrow, hilly and curvy road that marks the north-south boundary of my parent’s community. Despite our reassurances, he must’ve had quite a picture painted in his mind about what the whole sleep clinic experience entailed because he’s never, ever done something like that before.

Anyway, Mainline Health was very understanding and allowed us to reschedule without imposing any kind of charge for canceling at the last minute so we finally did the sleep test last night. Although we won’t know the results until the doctor has a chance to review everything, the experience was very pleasant. Our tech Chris was incredibly patient with Ralph, who didn’t exactly enjoy having his head covered in wires (can’t say I would either), or having to be hooked up to monitors (ditto). However, Ralph took it all in stride notwithstanding the hour or so after he’d climbed into bed during which he was pretty upset. I was thankful they’d bent the rules a bit considering the special circumstances by allowing me to stay with him the whole night, even though on the phone I’d been promised a cot and ended up with a big chair that although cushioned, did not recline.

Unable to sleep, I finally took a chance and got into the big bed, figuring the worst that could happen was that Chris would come in and order me back to the chair. Which never happened since luckily I’m a very deep sleeper who doesn’t move once I’m out.

Another thing miscommunicated on the phone? That we’d be awakened at 6 a.m. (not 8:30 a.m. as the scheduler had initially stated) and home by 7 a.m. Still, it was a nice experience overall for anyone whose doctor recommends a sleep study to determine the cause of fatigue and mental confusion. With Ralph, we’re still not sure what the diagnosis will be, but many times during the night, Chris heard him talking in his sleep and mistakenly thought he was calling him for help getting to the bathroom. He also noted this morning that Ralph has some “interesting” sleep patterns in addition to talking, include teeth grinding and slight sleep apnea but was quick to note that this was an “unofficial” observation. We’ll know more when we talk to the doc but there’s a good chance Ralph might have to return so they can watch him sleep while he wears a mask.

I think I’ll keep that to myself until we get the official word. 😉

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Saturday Fun

I will be busy most of the day in preparation (finally!) for something fun, uplifting and celebratory although I am not at liberty to post the details just yet. Anyway, I am also thrilled to report a positive update on Ralph who is already responding well to the medication Dr. Reid prescribed for him the other day. It’s the generic version of Aracept, which is given to patients with Alzheimer’s. Although the doc believes thyroid and sleep problems could be causing the mental confusion and memory struggles, he felt that putting Ralph on this medication could be helpful. And even though it’s only been a few days, there is a noticeable improvement.

So I’m not going to torture myself by wondering why he’s responding so well to Alzheimer’s meds if in fact he does not have Alzheimer’s; just going to enjoy the fact that he’s already behaving like the Ralph we all know and love. And tonight’s festivities are only going to enhance that effort even more.

Will post pics tomorrow.

In the meantime, I just love this song which aptly describes the way I feel about the blessings of being an American citizen:

I have more good news to share on the professional front too, but will write about it in another post! 😉

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