Tag Archives: Down Syndrome

My favorite baby photo of my "big brother" Ralph.

Happy 54th Birthday, Ralph!

Celebrating my brother Ralph's 50th in 2009.
Celebrating my brother Ralph’s 50th in 2009.

I have a very special, amazing and inspiring brother, appropriately named Raphael (although we call him Ralph) after our maternal grandfather and the Archangel of Healing. To readers of my blog and everyone who knows him in real life, Ralph’s story is a heart-warmer. I first wrote about it for a local paper, The Happy Herald, back in 1997 and updated the feature a few years ago on this blog. Hard to believe it’s already four years since we celebrated his BIG 5-0 with a bash at Drexelbrook in Drexel Hill, Pennsylvania but time flies when you’re having fun!

Over the past few years I’ve had the opportunity to spend lots of quality time with Ralph, who’s still thriving in spite of a few obstacles and loving his WWE, bowling, movies and gambling at Harrah’s Philadelphia! I often remind him that he’s a healer in the tradition of his grandfather (a pharmacist) and the Archangel Raphael. A smile, a hug, a kind word from Ralph (and he always has all of these at the ready) can boost your spirits and improve your mood instantly.

In a world obsessed with superficiality, endless youth, bling, and excess, Ralph is grounding, loving force. He still gives the very best “huggies” and remains the biggest testament to the power of faith, the human spirit and the purpose of this earthly life that I know. I have been blessed to be his little sister and to be a part of such an honorable, moral, strong and loving family.

Happy 54th Birthday, Ralph — I love you!

 

Share
397514_2907407766115_1288191071_33184361_107760178_n

Happy Mother’s Day!

MomDaria2009I’ve been blessed in many ways but none as important as being raised by one strong, loving, generous, independent, intelligent and caring mother whose presence continues to enhance my life today. Some believe that our souls choose our parents and all of the circumstances of our lives prior to our birth; others believe it’s all up to God. Either way, I count myself incredibly blessed. And in light of the recent Gosnell horrors which have shone a spotlight on the brutality of abortion, I am also grateful that my mother is staunchly pro-life. My impending arrival came at a time of great financial hardship for my parents who already had four children, including one girl and weren’t purposely seeking to add to that number.

Over the years however, my mom has been my biggest champion, supporter, shoulder, confidante, teacher and dispenser of discipline, wisdom and stability. Thankfully, she hails from an era in which women not only worked and pursued their goals but also upheld traditional values and treated marriage, motherhood and family with reverence and respect. My mother took pride in all of us, and never looked upon her children as “inconveniences” but as developing individuals with their own talents, skills, abilities and desires. She took great pleasure in nurturing our intellectual, spiritual and physical growth. If I had one wish for Mother’s Day, it would be that all children could experience the unconditional love of a mother in the same way.

For me, my mother will always be my role model:

While we tend to think of “empowerment” as a modern phenomenon, I’ve been blessed to be a part of a family in which this has been quite common for many generations. My cousin Millie — the first female graduate of  Temple University Pharmacy School — had a distinguished career back in the 40s. My Great Aunt Emma was a self-employed business owner of a Philadelphia beauty salon around the same time, while also a wife to my Uncle Al and mother to my cousin Joey (and eventually, grandmother to five and great-grandmother to twelve). And my mom’s sister, my “favorite” Aunt Marie, also owned a thriving gift shop in Flourtown, PA while also raising a family with my Uncle Merle.  (May God rest the souls of these wonderful women).

But no one has had as big an impact on my life than my mom, Rose. While technically a “stay at home” mother of five during the critical years of infancy, childhood and adolescence, due to my dad’s crazy schedule as a general and vascular surgeon, the heavy lifting of child rearing mostly fell on her highly capable shoulders — thus in that sense she was a “single mother”.

She also managed the books for my dad’s office, while volunteering for endless school- and hospital-related endeavors like homeroom mother, Home & School Association President and Physicians’ Wives Auxiliary, to name just a few.  Additionally, she helped with homework and various projects, shuttled us to various activities like baseball practice and dance classes, and exposed us to art, culture, history and professional sporting events — even if my dad was not available to come along.

I never heard my mother once complain about having to do it all herself, or about not having my father around her every waking moment. She accepted the fact that as the breadwinner, provider and head of the home, my dad’s demanding profession would keep him away much of the time (though when he was home he was fully present in whatever was going on). On the contrary, she reveled in her independence and in her children.

And lest anyone think being the wife of a surgeon was always glamorous and financially secure, let me add that my father was the son of immigrant parents who worked three jobs throughout high school, college and medical school to help pay for his tuition. In fact, when first married, my parents had to live with her parents because of dire financial circumstances. And even after they’d managed to move their young family out to the suburbs years later, they still couldn’t afford furniture for their two-story colonial in Springfield, PA.

When they found out they were going to have a fifth child — me – it could not have come at a worse time. Add to the financial stress the fact that my mom’s father suffered and unexpected heart attack and died very early into the pregnancy, it’s a miracle I am even here.

But for me, the defining moment of our family (and the biggest testament to my mother’s strength and resolve) occurred over eight years before I was even a glimmer in father’s eye: the birth of my second-oldest brother, Ralph:

Celebrating mom's birthday, circa 1992.
Celebrating mom’s birthday, circa 1992.

Ralph arrived on October 4, 1959, the second-born child of my parents, Rose and Al. Despite the trauma of his premature birth and the absence of my father who was working in upstate Pennsylvania as part of his medical residency, Mom was thrilled to have a baby brother for her older child, Mark, then 17 months-old. When she held the beautiful blond-haired, blue-eyed infant in her arms, the young 28 year-old mother felt truly blessed. Ralph was a sight to behold.

Her joy was shattered early the next morning, however, by a visit from Ralph’s pediatrician, who matter-of-factly informed her that her baby had been born with a terrible affliction known as Down syndrome. With clinical certainty, he pronounced that Ralph’s future would indeed be bleak. Pointing to a tree outside the window, he explained that my brother would be just like a tree trunk—unable to do anything but stand there. To say that this guy had no bedside manner would be an understatement. He completed his “professional analysis” by recommending Ralph’s institutionalization since my Dad was a resident doctor, and the presence of a handicapped child would be a “stigma” on the young family.

The more he spoke, the angrier my mother became—after the initial shock. Summoning her courage and faith in God, she ordered the doctor out of her room with the firm admonition to stay away from her baby. As of that moment, he was no longer Ralph’s pediatrician. Filled with an inner strength and supported by my father and close family members, she vowed to do everything in her power to help this special boy reach his full potential. And she would soon discover its scope went far beyond anything the “experts” foresaw.

Under the guidance and tutelage of my determined mother, Ralph crawled early, walked early, ate with no problems, and even toilet-trained early. A loving, affectionate child, he was a source of joy for his parents, grandparents, aunts and uncles, and a wonderful playmate for his big brother. Mom switched to a new pediatrician—a kind, caring man named Dr. John Williams—who applauded her efforts and was amazed at all that Ralph had accomplished.

Please click here to read the whole thing. Not a day goes by that I don’t thank God for my upbringing and most especially for a mother who taught me to be strong,  independent and courageous not only by her words, but by her example.

Share
257865_3929690794006_1684074228_o

The Best and Worst of Times

Ralph, hanging out with my cousin Annie's dogs at her house.

In light of what I am about to post, the petty comments from two readers (or perhaps it’s just one person who keeps using different emails) are even more childish and immature. You know who you are — and no, I will not post your ill-informed remarks on my blog. You are welcome to stop by here anytime though. :)

While I am absolutely thrilled that The Peoples Vote.com has had a successful launch and that I am about to relocate to the Space Coast to work at our new office in Palm Bay, Florida, it’s not without mixed emotions. I am leaving with a heavy heart since the worst we’d feared about my brother has been confirmed by his neurologist. Over the past several months, I’ve done a lot of research on the topic and the connection between Alzheimer’s and Down syndrome. Ironically, a good friend had brought it to my attention years ago, after a customer told her about a family member with DS who’d passed away after a bout with this vicious brain disease. At the time I’d filed it away, hoping my brother would be spared.

There’s not much else I want to post about it at this time, except to ask for your prayers and note that Ralph still has very good days, mixed in with not-so-good ones. On the bad days, he’s tired, irritable, forgetful and prone to napping. On the good days, it’s almost as if nothing has changed. He’s on medication now to slow the process, although it’s just a temporary fix. Hopefully someday soon, some smart researchers will find a cure for this horrible, debilitating illness that robs people of their dignity and breaks the hearts of those who love and care for them.

Please keep us all in your prayers.

 

 

Share
RevelAC

“Disenfranchised” Have No Problem Producing Photo ID at Casinos

Want a casino players card? Better produce photo ID.

So why can’t they produce one to exercise the sacred privilege of voting? Oh right, they can but it’s useful propaganda for the left to perpetuate the cult of victimhood and promote the false narrative of the GOP and conservatives as “racist” in order to serve their own power-hungry objectives.

Although I’m not a gambler, the other day I drove my mom and brother down to the beautiful new hotel/casino Revel in Atlantic City, where all three of us stood in line to obtain a Players Card, among people of varying races and ethnicities. So what does Revel require in order for anyone — regardless of race, color, creed and ethnicity — to hand over before issuing a Players Card?

You got it — photo ID!

And for the record my brother Ralph, who has Down Syndrome, has had a non-driver photo ID for years..since it was required of him way back in 1982 when he started a full-time job at a local hospital. My parents didn’t whine about the “unfairness” of requiring their handicapped son to obtain a non-driver photo ID; they went out and got one according to the state of Pennsylvania’s process.

Do a Google Search on photo ID required for casinos and it’ll bring up pages of results in which it is noted that a valid photo ID is required to obtain a Players Card.

If you can produce one to gamble away your money, you can surely produce one to vote in something as important as an election. By the way, Revel is a beautiful hotel and I especially appreciated the fact that I could work on my laptop just about anywhere on the premises. The hotel offers free WiFi and plenty of comfy chairs and tables so it was easy to locate a nice work area by a big picture window.

Will write up a full review soon, which will include my disappointment at one of their overpriced and not very good restaurants. For now, I just wanted to make a point about an issue that, like so many others, the left shamelessly demagogues for their own self-serving reasons.

UPDATE: My state of residence, Florida, agrees. In a Florida Poll Four Out Of Five Support Photo ID Laws.

Share
MLHealth

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. ;)

Related Posts Plugin for WordPress, Blogger...
Share