DS — Keeping the Faith & The Music Alive

The Vineyard Musicians 2We belong to The Vineyard Church in Rockville Centre which we affectionately call “Rock ‘n Roll Church.” It’s where Brian and Mike made their first Holy Communion several years ago. Sunday services include a 30-minute worship, or music segment, in which the alter serves as a stage and the church is transformed into a Christian rock arena of sorts. Fabulous musicians on keyboards and drums compliment the blending of electric, bass, and acoustic guitars with beautiful voices. When the music finishes, the Pastor takes the stage, pulling together readings, quotes, and teachings from the bible and other Christian writing in support of a theme addressing a modern day challenge we can all relate to. To say we LOVE it is an understatement. The music definitely draws us in. We show up for the music and stay for the message. My Young Men always choose to sit in the first few pews so they have an unobstructed view of the musicians. The giant screen above the “stage” generally has a peaceful nature scene behind streaming lyrics. My Dudes air drum as they sing along boldly–their monotone voices almost harmonizing. [Almost.] It’s a beautiful sight to see and sound to hear.

Then, when the music ends, they close their eyes and bow their heads in prayer, applaud the band as they leave the “stage,” and quickly say, “Mom, we’re going to the bathroom.”

So, that’s not unusual in itself. They tend to check out bathrooms when we’re out and about and pretty much everywhere we go. But, this bathroom run has been an ongoing thing with them.

One Sunday, I’m lingering after services, talking to fellow members, and occasionally scanning the room for Brian and Mike… Keeping tabs as every mother I know would do. I silently note they are sitting in the back of the church with a big group of… Vineyard MUSICIANS! When I walk back to collect my Young Men, the church’s musically inclined collective share bro-hugs, fist bumps, and hug-hugs, calling My Young Men by name and parting with, “We’ll see you next week.”

Of course, I inquire, “So Guys, how do you know ALL of the musicians?” Brian answers matter-of-factly, “Mom, they’re my friends.” Laughing, one of the musicians responds, “Oh, they come and hang out with us in Ray’s office every week after worship.” Turns out, the bathroom run was an excuse. My Dudes are Vineyard Groupies! Every Sunday they have been going “backstage” to hang out with the music-makers.

Music is a BIG part of who they are, and what they love. It’s a full-time, lifelong pastime.

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DS Awareness: “Smart is as Smart Does!”

We’ve all heard or met book smart people who know an awful lot but seem to have no common sense or ability to apply what they know. Then there is street smart, the ability to survive in the concrete jungle but not necessarily thrive in a school setting. And, of course, we all know a smart aleck who uses his smarts in less-than-socially-productive ways. Dictionary.com defines smart as having or showing a quick-witted intelligence. And intelligence is defined as the ability to acquire and apply knowledge and skills. These days, intelligence is often broken down into categories such as academic intelligence, emotional intelligence, social intelligence, etc. And then, society recognizes those STEM brains that seem tuned specifically into science, technology, engineering, math, etc… so smart could be subject-specific as well.

Forrest Gump said, “Stupid is as stupid does.” In a practical sense, I think that sentiment works for smart too…

Smart is as smart does!

Real-Life Identical Twin Genetics LessonFaster than a speeding bullet, more powerful than a locomotive… It’s a bird, it’s a plane… It’s…. not Superman… It’s Michael and his awesome brain!

At 8 months old, he escaped a locked baby gate enclosure that encompassed the living room half of our great room. He watched me unhitch multiple clips, walk out, and re-hitch the clips. Then, he belly crawled over to the gate, fiddled with the clips unsuccessfully, discovered the gate’s overlapping panels, pulled them apart, squeezed his head into the space between the panels, and wiggled his way to freedom… I WATCHED him do it, in awe of his skills. He was observational, methodical, analytical… By definition… SMART! AND INTELLIGENT!

Then, Brian–Mike’s identical twin brother who has the I’ll-play-off-of-his-smarts kind of smart–watched Mike maneuver through the triple-clipped, overlapping panels and immediately followed suit. Once free, together they belly crawled to the open shelves of food (our kitchen was under construction) and began tearing through the boxes in search of goodies before I intervened. OF COURSE I rewarded their ingenuity… then quickly shored up the baby gate enclosure.

14 YEARS LATER… 

Yesterday was a busy day. We spent a chilly morning at the “2019 Walk to End Epilepsy” in Eisenhower Park in support of Mike and Brian’s friend, McKayla. And, after a brief interlude at home, we attended their backyard barbeque to celebrate her successful fundraising efforts. As we jumped out of the car at their house, I discovered that Brian was without a jacket. When I asked him, he assured me he didn’t/wouldn’t need one, he wasn’t cold. Unfortunately, within 10 minutes of arriving he said, matter of factly, “Mom, I’m cold!” So, I gave him the told-you-so, next-time-bring-a-coat-like-I-told-you lecture and borrowed a jacket from my friend.

With about an hour at home before our next commitment–a Marching Band fire pit party in a friend’s backyard–I told The Young Men they had to change from shorts to pants as it was getting colder and this was going to be another outdoor gig. Brian was INSISTENT that he was wearing his shorts. So I made the deal very clear: You wear pants, you come to the party! You wear shorts, you stay home with Dad. When he realized negotiation was futile he grabbed the offending pants and grumped away into the bathroom. Mike who was standing nearby, was watching and listening to see how Brian’s shorts-pitch would play out. When Brian finally gave in and walked away to change, Mike agreeably took his pants and said, “OK, Mom, I’ll change into my pants upstairs.” And, away he went, happily! 

I could still hear Brian fighting his fate in the bathroom–“Mom says I have to wear pants. But I can wear shorts if I want to. I’m an adult. I don’t need pants. No, I’m not cold Mom!” and on he went–when Mike walked back downstairs wearing the pants I gave him…

ROLLED UP TO ABOVE HIS KNEES!!! He stopped, put his hands on his hips and with a “gotcha” grin sing-songed, “Mo-omm, I’m wearing my pants!”

My husband nearly fell off his chair laughing. And, when I finally stopped laughing, I said, “You’re right. You’re wearing pants and that was my rule… so you’re good to go.” Brian, hearing the commotion, came out of the bathroom with his pants worn in the traditional fashion down to his ankles, took one look at Mike and with his mouth agape, he lamented, “What? Mom, NO! Mike CAN’T wear his pants like that!”

Kid Pics Jun-Oct 2012 133So SMART!

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Down Syndrome & The Brotherhood

Brian & Mike @Woodstock

What IS Down syndrome anyway? My Beautiful Young Men have Down syndrome, a genetic abnormality caused by an accidental triplication of the 21st chromosomal pair. Chromosomes, located in the nucleus of each cell in our bodies, are distinct structures made up of DNA and protein. They are the carriers of our genetic material. Abnormalities in chromosome number due to a problem in cell division can result in Downs syndrome, a common genetic disorder that occurs when a person has three copies of chromosome 21. It’s a duplication… actually, a triplication error. It’s as though we ran the 21st chromosome through the copier during fetal development and it accidentally spit out 3 copies instead of the usual two. And, because my sons are identical twins, they are genetically identical. That means, once that mistake was made in the first fetus, the same mistake was pre-programmed to happen in the second.

When I tell people that I have identical twins who happen — meaning it happened by chance — to have Down syndrome, the usual refrain is, “Oh No! They both have Down syndrome?” Yes, they are genetically identical duplicates of each other, so both have Down syndrome. In fact, I am grateful that they both have Down syndrome because they will always have each other. My Young Men pretty much share the same development curve. Like best friends, there’s a familiar path, a sameness, and easy camaraderie; a brotherhood that starts between them and then they extend to others.

Webster defines brotherhood as: 1. the condition or quality of being a brother; the relationship between brothers; 2. The quality of being brotherly; a fellowship toward others; and  3. A  community of people linked by common interest or common bond.

In a practical sense, brotherhood means people acting with warmth and equality toward one another, regardless of differences in nationality, creed, ethnicity, or ability/disability. While that doesn’t always happen in our society, especially these days it seems, Brian and Mike are lucky to be part of an EXTRAORDINARY brotherhood. First, they have each other. Then, they have us, their immediate and extended family, followed by an outwardly emanating circle of friends and peers. And, finally, they have the Down syndrome community as well as our community at large, where we are constantly advocating for inclusion and acceptance as the common bond.

Join our brotherhood!

 

 

 

 

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Down Syndrome is NOT…

0822191547[1]The myths that are propagated about having a child with Down syndrome are just that… myths!

“A life relegated to caretaking:” At 14, My Beautiful Young Men dress, cleanse, and feed themselves. They get up for school, make their beds, get showered and dressed, take their meds/vitamins, feed themselves (and sometimes make enough to feed the rest of us). They pack their backpacks, charge their phones and iPads, and get outside to catch the bus all in less than an hour! They can take the bus home, let themselves in the house, grab a snack, start their homework — well, Mikey anyway — watch tv, shower, brush their teeth, wash their faces, change into pajamas, put their dirty clothes in the laundry, and put themselves to bed… SERIOUSLY!!!!!

They were invited to a sleep-over with 9 other boys. The host mom asked if I was nervous about letting them sleep over. I answered, “not even a little bit!” The next morning, the mom AND the dad called me in awe of Brian and Mike. They said My Guys were the only ones who even brought toothbrushes, and USED them… TWICE! At night and in the morning. They brought and changed into their pajamas (everyone else slept in their clothes), folded and put their dirty clothes in their backpacks to take home. They voluntarily went to bed around 10pm while the others stayed up to play Forte Night — My Dudes can’t be bothered with that particular game. Brian says, “it’s too violent, Mom!” I got a call from the Mom. She was laughing, saying, “OMG Maggie, they just put themselves to bed!”

In the morning, they made the bed, brushed their teeth, washed their faces, got dressed, put their pajamas in their backpacks, and came downstairs. They did need a little help tying their shoes (Thanks Joe, we’re still working on that). They thanked their host for inviting them and for breakfast, then they called me to come get them. On pick-up, I asked if they behaved. The Dad was amazed, laughing he said, “Are you kidding me? They were SO EASY!”

Those parents gave me credit. But the credit belongs entirely to my beautiful Young Men. They ARE so easy! The two of them together are less work than my 18-year-old daughter… And, truly, she’s a pleasure (ask anyone who knows her)!

If this is a life of caretaking, I’ll take it!

 

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Down Syndrome Doesn’t Stop My Young Men From Living Life to the Fullest!

Mag Phone Pics 0219 351

  • Assistant Middle School Football Coaches
  • NDSS Lobbyists
  • Honor Roll Students
  • Included in general education
  • Wildly Popular
  • Invited to the best parties
  • Friends with all the girls AND the guys
  • The NICEST Guys around
  • Well behaved, NEVER any behavioral problems
  • The ultimate Gentlemen — Polite, Kind, Compassionate — they hold doors open for people, help others. Chivalry is alive and well in our house!
  • Teachers love them! Students love them! People seek them out.
  • Funny, smart, genuine, loving, attentive

From my perspective, there is no down side to Down syndrome!

 

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Down Syndrome Awareness Month 2019!

Brian as WDC Lobbyist 03212019

Brian celebrating his first gig as an NDSS Lobbyist in Washington DC on March 21, 2019.

Never in a million years — or at least 14 1/2 years — could I have imagined what my life would be like today. It is the first of October, the first day of my daughter’s birth month, the 8th anniversary of my blogging birth, and the first day of Down Syndrome Awareness Month. In 2011, I accepted the blogging challenge, to post every day of October in honor of Down syndrome Awareness. Today, I accept that challenge again….. feels good to be back!

Mike as WDC Lobbyist 03212019

Mike celebrating after a successful day of lobbying for NDSS on Capitol Hill, March 21, 2019.

So here’s my first little tidbit of Down syndrome wisdom: Quite simply, I have never known pure love or pure joy the way I know it now thanks to these two beautiful and extraordinary human beings. They are kind, compassionate, empathetic, funny, AND smart people and I am so grateful that God saw it fit to give them to me. They have changed me and a jillion other people they’ve come in contact with these past 14+ years for the better and forever.

I often get to speak to new parents of children with Down syndrome. In my 14 1/2 years of advocating for people with Down syndrome, I’ve run into only one Mom who, after a month or so, was still struggling to accept that her child was born with Down syndrome. She was referred to me for a glimpse of what her future might look like. I am the proud Mama to 14 1/2-year-old identical twin sons who happen to have been born with an extra 21st chromosome. I told this mother the truth… YES, sometimes it’s a little more work to have a child, or two, with Down syndrome… but through this child she would learn and know, firsthand, the meaning of joy! 

Webster’s defines joy as “the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires.”  In my world… Joy IS Brian and Mike!

I told this Mom that her child with Down syndrome would bring love and laughter into her home the likes of which she had never experienced before. She snapped back, “Do you actually believe this cr*p or are you just saying it for my sake?” I offered up that I don’t have to believe or not believe, it’s just the way it IS… I LIVE it every day.

That woman quit her job because she didn’t want to be pitied for having a child with DS. She moved to a new town where she could be anonymous. And, she went about reconstructing the life she felt had been usurped by the birth of this imperfect child. We lost touch. Until… Nearly two years later, I heard from that woman again. She was in awe of the strength and depth of the love she felt for her child with Down syndrome. She had become active in her local community, advocating for her child and people with Down syndrome. She was so proud of all he had accomplished, and amazed that he seemed to have brought her family closer together. Life was good!

Friends, THAT is what I’m talking about. A radical shift in the earth beneath her feet. Beneath my feet. The deepest gratitude for the presence of our children with Down syndrome in our lives. No matter what challenges I face on any given day, when I am in the presence of Brian and Mike, all is well.

If you don’t know or haven’t met someone with Down syndrome, I invite you to spend a day with us. It is an A-M-A-Z-I-N-G and joyous experience!

I will be posting daily — or doing my best to post daily (FYI tonight’s post counts as October 1 even though it’s after midnight, because I haven’t gone to bed yet from yesterday… just saying). This month, I hope to share some extraordinary little detail, fact, or adventure as a family that lives with Down syndrome every day in honor of Down syndrome Awareness month and in honor of the thousands of beautiful people in the world who happen to have that extra 21st chromosome, for their families, and the millions of people they touch and whose days they brighten just by being alive. I promise to try to keep it interesting, if you promise to “get in the car” (my daughter’s senior quote from Transformers) and go for this ride with me… with us!

Mike woke up this morning and, completely unprovoked, said, “September is done, Mom. It’s October. It is Olivia’s birthday month, Spiderman: Far From Home comes out on DVD, and Halloween is on the 31th.” (BTW, he knows it’s the 31st but was teasing, mimicking the tv show Game Shakers.) Yes, it’s another glorious day to be alive, and to have these extraordinary human beings in my life… and this month, I’d like to share Brian and Mike with you. Enjoy!

 

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Whose Name Is It Anyway?

My sister named her first-born son Isaac. It means, “he laughs.” Though not very common, suddenly, that became the most beautiful twinsonolargename I’d ever heard. Nearly 17 years later, I found myself challenged with the task of choosing not one but FOUR suitable names when the midwife shockingly declared… “TWINS!”

After I picked myself up off the floor, I realized I would have to come up with TWO go-together names for girls, TWO go-together names for boys, as well as two go-together names for a boy and girl… just in case. You see, I LOVE a surprise and there was no chance I would spoil the best surprise God gifts us parents… the gender of our as yet unborn children! I recognized that choosing names was no small task considering “Lou” and I had only managed to settle on ONE name for our first child. Thank GOD she was a girl because we’d chosen Olivia… and nothing else. We’d have looked very foolish if the midwife had announced, “it’s a boy!”

Once the concept of meaning took root, I could not name my children without taking it into consideration. The name had to represent something meaningful… to me at least. Olivia means “from the olive branch; representing peace/the dove [of peace.]” Born just weeks after 9/11 it seemed appropriate and has proven to be an auspicious choice for my Old Soul. Choosing names for My “Twins” who we did not know would be boys, was a bit tougher. There were so many first names to choose from but as I went through the alphabet, identifying all the possible names I could think of, none of their meanings resonated with me.

I won’t go into what names — or, more pointedly, what meanings — I discarded lest I insult someone whose child carries a name I rejected for having a less-than-significant meaning FOR ME. But, as an example I would just like to throw out for your consideration a name that I LOVE but that, in writing, poses pronunciation challenges I would not wish upon my worst enemy’s child… Colon. Enough said, right? So, we finally Mag Phone Pics 0219 351settled on Brian with an i, (traditional) which means “Strong, Soldier of God.” Then, darn it, I had to acknowledge to my husband that, like half of the population in the United States, I LOVE the name Michael. However, because of its popularity, I stoically decided to forego choosing that name because “everyone has a Michael” and endless Moms told me that the name is a curse… every child named Michael tends toward… to be kind, let’s call it rambunctiousness. But, my cousin, whose son is also named Michael, said, “So there are other Michaels! Who cares? If that’s the name you love, why shouldn’t you have a Michael of your own?” True… so I looked up the meaning of the name Michael and discovered this, “Michael: resembles the face of God!” DONE! Brian and Michael it is.

2011 Feb-July 844Yes, I now have my very own Michael. And, he is anything but rambunctious. Actually, there are times that he is so beyond peaceful that he looks almost smooth from the inside out; Just like, I imagine, the face of God!

In kindergarten I thought having him write “Mike” on all of his papers would help accelerate his success in achieving the name-writing milestone and perhaps ease his load given the challenges I knew he would already face as a result of his extra 21st chromosome (aka. Down syndrome). And, I figured it would likely be the cool, teen nickname he would come to prefer anyway. But, I LOVE the name Michael and often refer to him in the proper. Sadly, HE has decided he does NOT love the name Michael.  Every time I call him Michael, he quickly corrects me, “Mom, it’s MIKE! JUST Mike!… I like Mike!” I defer to his preference; after all, it IS HIS name. Then, after being corrected again, I said to him, “Mikey, I am your mother and I chose the name Michael because I think it’s just the most beautiful name for the most beautiful boy.” To which he stubbornly shook his head and responded, “just Mike!” So I closed my eyes and lifted my face up to heaven, with my hands clasped in prayer I said, “Please God, help my son Michael understand that he has the most beautiful name in the world  and that I, as his mother, should get to call him by it every once in a while.” I opened my eyes and longingly looked over at my son Mike. He promptly turned his smooth, God-like face to heaven, and with his eyes scrunched tightly closed, folded his hands in front of him and with all earnestness said, “Please God, JUST MIKE!”

 

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