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Posts Tagged ‘Down Syndrome’

David Paul Adams 🎓 & Jonathan William Adams 🎓, Cum Laude
One last blast of the pirate ship, Pirate Proud!
Jonathan, 18 (Auburn University, aerospace engineering) & David, 21 (Gulf Coast Exceptional Foundation day program)… David & Jonathan: biblical best buds, always looking out for each other.
Extended childhood coma, not expected to live past age 4. God always has other plans!
One to Alabama, one to Auburn, one to USA and one to Coastal…scattered to the wind but forever bonded.
The best part of milestones is sharing it with a growing family!
Third milestone – youngest crosses over from 8 years of elementary school (Pre-K-6th), to middle school, having been diagnosed with high-functioning autism last fall and discovering the joys and challenges of his reality…as we all do.

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Braving Hurricane Barry, I put in my 9 hours’ morning work yesterday and took off at 3pm to go see Jonathan and Southwind’s last performance in the state before they left at 11pm for the rest of their national tour.

The neighborhood was in the middle of flooding but I took advantage of sneaking out between storm bands (no pun intended) to get on the interstate..

It was at least a 3 hour drive upstate, pounding rain and – thank You God – for a friend recommending audio books, so it was me and BrenĂ© Brown and her recent book on “Braving the Wilderness” (how Ă  propos!), white-knuckling it up to Millbrook, AL. I had a mission, to see my kid, his band, the competition with other bands, to make good on a promise to get there and to deliver two corn dogs and a large hot fudge milk shake into the hands of said kid.

He reinforced a couple of times (despite my texts to move things up) that it would have to be AFTER the show (which would be circa 10pm) lest he barf up Sonic on the pristine football field and cost his team points.

Because they had the “home state advantage,” Southwind went last. But preceding them were several truly awesome drum corps, competing for a title.

One was Southern Knights, an all-age drum corps (and I saw young as 10, old as 70s) which rocked the stadium kicking off the competition.

In the middle were bands from Atlanta, the Carolinas, Florida, Louisiana and Michigan.

I would like to point out that I was most impressed with the Louisiana Stars from Lafayette, LA – which happened to be from just a hair north of Barry’s landfall, so these kids were safe and sound inland but probably internally freaking out how their families, pets and homes were faring during the storm which made landfall while they practiced here.

Louisiana Stars – God bless those in the path of Hurricane Barry.

The band from Kalamazoo, MI won, Legends, with their extraordinary drill team posing as Sirens of the Sea en masse, along with a dramatic story line about life in the sea with the gods and goddesses.

The Sirens did a creative wave number to the sound of my beloved sea waves, their long hair sweeping to and fro, emulating the waves of the beckoning sea

This drill team evidently was taught to seduce and interact with the audience with their hair-flips, alluring smiles and seductive beckonings. a perfect opening that wowed and wooed the judges.

With Southwind hosting, their last-on-program/late performance was stellar, nonetheless – and, compared to last week’s dress rehearsal (see previous post), the musicians were phenomenally precise, more artistic, theatrical and in the groove. I am excited for the rest of their tour and am confident they will rock the rest of the country!

Southwind’s precision

They handled the “cages” more expertly tonight…intentional in trapping their prey and skillfully orchestrating the profound exhilaration of freedom

Packing up for the next destination

Drilling the Drill Team – they rocked!!

That semi holds a place for each instrument, supply and uniform

The cages waiting to be loaded. What cage are you captive in?

Each member gets a medallion at the end of their home-state show, depending on how many years they’ve participated. This is Jonathan’s second year.

A competition well-performed

Southwind Mom’s Truck

Thank You, God, for children and their pursuits, for infusing them with talents, skills and interests that contribute to our world’s arts, sciences and teaching them all manner of What Life’s About.

God, please bless Southwind and all the kids this summer who are devoting themselves to greater purposes which ultimately make us better people and make the world a better place. May they go on to serve You in whatever capacity You deem appropriate.

(Here, Jonathan’s brother with Down syndrome pipes up, “Mama, you tired of Southwind?” Mama answers, “No, David, I’m tired FROM Southwind last night, not tired OF Southwind!”) David says, “We’re tired from rains and storms,” to which mama says, “Yes, David, and why we’re going to bed early tonight….”

Night night co-musers!

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Sometimes we ask, “How does this end?”

But does it really ever end? Or are endings really new beginnings?

Here are some of my favorite “endings” that actually opened the most amazing doors to new beginnings:

The first evening of my mother’s “running away” from dementia, that helped her feel both at home and free from home, all at once.
Soiled toes after the Deepwater Horizon oil spill in 2010. We thought our beaches would never be the same, but God was gracious to restore in due time, as He always does.
What sea stars do when they free themselves from their captors out of children’s beach pails and escape back to the sea, alive and free again!
The end of a rum runner schooner from 2 centuries ago…nobody has the $ to rescue it, so it just keeps eroding on a remote beach, a treasure to the few who frequent the far reaches of the peninsula, a legend to those from afar…

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The end of a virtual fantasy and the beginning of an indestructible, eternal bff-ship.
The end of life as we knew it pre-Katrina…once the grief passed, the rebuilding was mostly emotional, projected onto the current landscape should you visit NOL.
The end of David’s life, 6 weeks in a coma and no hope…but the doctors had us sign papers to authorize unorthodox treatments and I stood glued to the wall praying as they applied said treatments in the form of laughing gas and yelling at him to hang in there and stay with us….and he did, and turned 19 last month.
Hurricane Ivan’s destruction, 2004, year before Katrina – rocking my baby in my lap singing hymns as our ears popped when the winds hit 130 and we could no longer hear trees falling around us, but had to trust totally in the Lord..our kids remember that night and our faith and serve God with gratitude to this day.
The ending of a century-old era, my Cubbies losing. Oh, ye of little faith! God delivers if You sit tight and see what He has in store!
Elizabeth died some days after this 93rd birthday…but her death was the beginning of a new legacy of strength, courage and untold creativity….Just open your heart to what lies ahead.
Death of hips – yeah, finished the marathon in David’s honor, but was sidelined early in life with titanium and polyurethane shortly thereafter….pace thyself!

The end of anonymity – red flag hair day unexpectedly revealed last Sunday. God reigns in all things!

Thank You, God, for endings, which usher in brand new opportunities and beginnings. You are the Omega and the Alpha, and everything in between. You’ve got this! May we all embrace endings as we would beginnings….both bring new life and growth.

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Who can resist a well-earned Special Olympics smile from a kid who wasn’t supposed to live past age 4?

David turns 18 in 22 days!

Thank You, God, for defying all odds, for playing the ultimate April Fool’s joke on death – showing the universe for once and for all that where death seems inevitable, life rocks on!

That there is no such thing as finality, that You are the only Omega…and Your gift is eternal life. May we always recognize that those things seeming to a close = opportunity for new beginnings in ways we haven’t yet fathomed.

And therein lies faith…and trust. Faith and trust that there is always more in store than we can possibly know or deserve in our finite wisdom. Thanks, God, for perpetual resurrection and preciousness in all things. SMILE!!

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I’ve been posting pictures lately instead of words, so in honor of this blog’s One-th birthday, I thought I’d have a few words pop out of this virtual cake.

But not many…we’re headed to the ‘goon today with my dear aunt visiting from Bah-ston. (Yankees love cheese grits-n-shrimp, lemme tell ya…an’ she’s gonna love seeing pipefish while snorkeling, no doubt).

Here’s what I’m wishing for when the candles are blown out:

1.) For all my bloggy friends to have a fulfilling year of blogging – I’ve learned a lot from this and from you in a year – I’m humbled!

2.) To remember where I am (at the beach! in paradise! woo-hoo!) when my current heap-o-messes overcome me (there is Ahhh in the Arrghhh!). And that wasting away in Margaritaville is always superior to hoping a Mayan event will whisk me away from longsuffering.

3.) That I might resume my quest this year to overcome obstacles (like bull sharks, jellyfish and a torn ligament) and swim across the bay. Simply because it’s there. Y’all come man my pilot-boat, k?

4.) That when an adrenaline-inducing lightning storm (complete with big fat hail) zapped out my office phone on July 4th which now pretends to be in service by letting you leave a voice mail, but it isn’t, and the purchase order for a new one will take damn near two weeks to fill, that all those nice people leaving me voice mails under the assumption that I am receiving their calls will understand that I am not and they will have to call back in 2 weeks. I’m there, really I am. I just can’t hear you. Please call back. I can make no outgoing calls. I am not complaining – my workload got easier. Perhaps there is bliss in lightning. Hot-cha-cha, n’est-ce pas?

5.) That the key lime pie will not disappear from out of the fridge before I’ve even had a slice.

6.) That the proper Southern Baptist ladies on the bleachers at baseball this spring had never admitted out loud that they all read “50 Shades of Grey.” I knew my religion was right all along…

7.) That the still-young water heater will magically start working again and that the washing machine, which flooded the kids’ room today, was not responding to yet another supernatural event. Not to mention our laptop dying totally last Thursday. EGADAMIGHTY. Get me to an un-haunted house. I am tired of spending more time with Mr. ShopVac than my family. And what good is the extended warranty if you have to send the laptop off for 6 weeks? Oh, sure…just take all my personal information, be my guest. Tra-la.

8.) That I will use this blog to transmit peace, blessings and goodwill.

9.) That the guy in the white pickup next to me who smiled at me last Monday at the intersection as I put away my orange sticky note after writing yet another thought down during the red light, would reappear and tell me why he looked so bemused and kindly. Who were you? Where were you going? Why were you studying me to the point of not being ashamed to let me catch you smiling down on me? I was only wearing capris that day, not something more, um, truck-honking-worthy. And curses to the semi who did that to me coming out of the tunnel the other week – shame on you – you almost caused an accident. Tsk-tsk. Commuting is weird. I’m just trying to collect my thoughts, eat my bacon and drink my coffee. Don’t make me turn down my Ed Sheeran and other music. I’ve got plenty on my mind without you throwing a mental monkey wrench into my subconscious.

10.) That my lately-not-so-little-guy with Down syndrome would quit ambushing every birthday cake he comes upon and beating the birthday person to the punch by blowing out the candles because he just can’t restrain himself…because he knows what one does with candles on a cake. On second thought, I will let him step up to the plate here on this blog and blow away…and give him, and Him, the glory.

Happy birthday, baby.

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I wish to extend a grateful thank you to Lea At Sea for bestowing upon me the “Beautiful Blogger Award.” Please visit Miss Lea’s blog for quality literary work (not to mention great photography).

Most of you already know I am an evil chain-breaker when it comes to doing my part with bloggy awards – I shamelessly claim them without listing seven things about myself and selfishly neglect to nominate others. The latter is mostly due to the fact that I don’t have enough time to get around the blogosphere to meet enough new bloggers who haven’t yet been awarded, and most my blog pals are already spoken for, for this or that award.

So I kind of lurk in the corner of the blogosphere, standing there holding my drink, vicariously enjoying the party without venturing forth and making the rounds. I’ll let the hors-d’Ĺ“urvres tray come to me.

I noticed that one of Miss Lea’s seven items about herself is near and dear to my heart: hating (“a lot”) to talk on the phone. Yes, I was the one in the marriage years ago who, when the answering machine finally self-destructed, made the case (and won) not to replace it. Having a device which bestows others control over me and my life is incredibly oppressive, be it phone, answering machine and now voice mail.

I do not like the idea of others running around knowing they can summon me at their will like I’m some genie in a bottle. Especially when the caller is a solicitor, politician or, the worst, a robocaller. But, you say, I have complete control over whether to accept, ignore or not return calls? Aha, but this still puts a subliminal psychological burden on the phone-owner in that either decision evokes a multitude of required thoughts and feelings. Choosing to ignore a call demands that I make a decision at someone else’s will and timing, when frankly, I’ve spent all day making decisions and I would like to come home and relax and have the most mind-bending decision be what time I turn out the light and go to sleep. The caller, no matter how beloved, has cluttered my psychological landscape with an unexpected and sudden demand to interact. (Okay, so this introvert acknowledges it requires selfless sacrifice and giving on my part to make things work…I’m working on that part; please have mercy and patience).

This past week was the first time I willfully and purposefully punched the “IGNORE” option on an incoming call. And (please remain seated with your tray in upright position) the person I ignored was my husband. But, see, I had a REALLY good reason: I was in the middle of a bird-swooping shot using the camera feature, and timing was essential. Lucky me, he was very understanding. But don’t think I evaded a brief grilling…fortunately, the proof was on my phone with the great picture.

As one inclined to write, talking on the phone is just not my cup of tea. I often awake at 3 am with the perfect response which I likely was not able to offer the caller when the caller had me at their disposal. I am witty on my feet, but cannot always offer you the answer I really intend to give. I have to mentally chew your input before I can swallow and digest, a process which takes me time. I do not like to gulp my food, nor do I like to gulp my relationships and their conversations. I like to savor and reflect.

Curiously, this only applies to calls received at home, my castle, my sanctuary. Somehow, I am not like this at the office, where I even look forward to verbal exchanges with random, incoming callers. Sock it to me, baby!

This week a long-awaited, coveted piece of paper arrived (and quite unexpectedly this soon) deeming me worthy of officially engaging in the practice of mental interior redesign (therapy). This is the fourth such piece of paper I have ever received, but this time it was extra-special because the first ones I had retired before to care for our little guy with Down syndrome with critical health problems, and did not expect to return to the field, much less to have to go through the credentialing process a second time, which is now much more rigorous than it was decades ago. And this one was particularly unexpected because I had already been told many times  by the credentialing body that I likely couldn’t get that piece of paper in this state because this state takes pride in their extra-rigorous process which is far more hassle than any other state I’ve ever gotten that paper from. Sheesh.

That being said, if I had my druthers, my method of engaging in the act of phone calls would involve some long-term Freudian analysis process. This might include noting who is trying to call me (love that caller ID!). I would analyze why they might be calling (so I can adequately prepare an intelligent response with accompanying appropriate humor if needed), analyze all possible reasons and all possible responses, anticipate their frame of mind in reference to mine, flip through my mental Rolodex to see if there was anything I forgot to say the last time, pull out my calendar in case the call requires date-setting, pray that for once my tongue doesn’t get me in trouble and, with four noisy children, reserve the bathroom in the farthest end of the house to secure privacy and quiet prior to the call.

Okay, so maybe telephonic spontaneity isn’t my thang. Sorry, folks.

I guess I just think too much. And I’d much rather you joined me on the beach for an expectation-less chat and some quality peace time.

I will quit thinking for now and simply share a picture I haven’t found a place for until now. It was on some little side street and evidently the owner saw fit to paint a natural knot in the tree which happens to be heart-shaped. It expresses my sentiment to my fellow bloggers, readers and callers I might avoid, about how I really feel about them and how much I appreciate them, even if I’m busy over-analyzing stuff:

Thanks, God, for a direct line with You, and that You allow me the control to call You at will, without need for analysis, forethought or structure. Please help my hang-ups not be literal when it comes to others’ needs to make contact when I’m off the clock. Even if it’s a robocall.

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Hey, God…

That a child brought me to You this morning was humbling. He had asked with such hope, as best as his broken speech could muster, to go to church. The squeaky creaks of the kneelers echoed in the old nineteenth century chapel. Departing from our usual place of attendance, he did not know what to do with the kneeler until he saw the rest of us kneel and pray. He eventually decided the long padded rail at our feet made for a far better place to sit down than in the pew, as this afforded him a more advantageous perspective of the stained glass windows and of the sensible shoes of the elderly lady kneeling in the pew in front of ours.

He did not mind that he could not take communion because he cannot digest solids; he was grateful to receive a special blessing at the railing instead. He was not disappointed to miss out on the regulation tea and crumpets later in the reception hall; he rather basked in the attention of the new people we met. It was always I who had to be the one to manage my sympathetic disappointments felt on his behalf, and in the end I realized that they were entirely mine, not his – he did not know disappointment of any sort very well. Once disappointments were properly attributed, owned and subsequently discarded on my behalf, it became so much easier to join him in his joy.

I remember the first time I felt the two, distinct and simultaneously contradicting anguishes, felt as a mother of a child with Down syndrome. He was only four days old, but already society by me was damned if they did, damned if they didn’t.

If people offered awkward pity, the urge was to blurt out, “Can’t you see we are the proud, happy parents of a healthy baby? He’s no different…he eats, sleeps and poops right on schedule with the rest of them! Why can’t you congratulate us and be joyful with us?”

If people offered standard congratulations and completely avoided acknowledging his diagnosis, the temptation was to say, “Do you have any idea what we’re going through? Our child is different! Why can’t you offer condolences and join us in our grief?”

It would be years later that I realized people were dealing with it in the various ways they knew best. And so was I, as I began to digest what it meant to be raising a child with special needs.

So it was through life, times when we tried in vain to squeeze the square peg into the round hole…it just never quite fit. And yet it was well worth trying, because we all learned things along the way, and it enriched him in ways he would not have experienced, had we not tried.

There were heartaches and joys in trying, but it was the trying that sharpened us all. There are no baseball pants that quite work for his build, but we got creative and he played…for part of a season, until he decided the outfield was meant for chasing his teammates to steal their ball caps to try to get them to chase him. I wept when we had to make the decision to bench him because he just didn’t get it.

The basketball hoop was a bit too high and he had to play on his little brother’s team with second graders, but the week before the end of the season, he sank his first hoop, unassisted. And I wept when the entire crowd erupted into cheers and gave him a standing ovation.

But the look of joy in his eyes was exactly the same whether he was bench-warming or ovation-bowing. He was happy just to be included, even though he knew he was different and couldn’t quite master it like his peers did. He took joy in the process, not in the outcome. Perhaps it is us who, at times, just don’t get it.

He knows how to smell the roses along the way. Those joyful eyes see things differently.

So when society wonders if a challenged person should be treated differently or the same, the answer is, some of each…the same, as much as they are capable of; differently, to accommodate and adapt as much as needed to allow them to experience at least part of the process. It doesn’t take much to make them happy, and they understand more than we think. They have learned to be flexible and patient with others, out of necessity.

What kind of world would this be if we all saw life through those joyful eyes?

God, why do they say that 90% of all babies who test positive for Down syndrome in that new, first blood test, are aborted?

Let us not fear the salty tears of anguish which lead to the sweetest tears of joy!

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Hey, God…

The water was unusually low as I went across the bridge, an almost unsightly combination of colors and elements that was not the sparkling eye candy I am accustomed to enjoying at that time of day. Receded, the water left behind a visual cacophony of unsightly sea gunk. I was slightly disappointed not to see the usual whiz-bang scenery.

Upon closer examination, I noticed the once-hidden things now evident: fresh shellfish, elusively perfect seashells, sweet seaweed that nourishes the undersea life, and greater treasures in all their glory. I had greatly underestimated, and at first glance diminished, the true bounty of the unseen.

Oh, how we can be lulled into the comfort of what we perceive to be the eye-catching ideal, when so much more lies below, more than we can comprehend! We do this with things…with situations…with people. Take heed what our eyes are drawn to, that we don’t miss what is directly underfoot because we are comparing, expecting, supposing, idealizing, judging.

May we always be aware of the great riches underneath the glitter of that which we believe to be gold.

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Hey, God…

Today I read about a new drug that is showing promise in helping to “cure” Down syndrome. Do we really want to change those things that have been made perfect in Your image? You have said that our wisdom is but foolishness…and indeed, one can see the beauty and love in the face of any child with Downs, Your beauty, Your love. In weakness is Your strength, and many people have come to You through weaker people, as You touch us through them. They humble us, they teach us, they remind us of our priorities.

If people with disabilities did not exist, how would we learn and be humbled? What, then, would the order of our priorities be?

It is touted as scientific breakthrough, but at what point do we restrain ourselves from assuming we know what is best for another creation, just because they are different? Are we projecting our own fears upon them by thinking they must be suffering, when they may actually be perfectly content?

How can we possibly judge another’s perception of their quality of life?

Or are such “cures” merely for our convenience, to allay our fears and insecurities about suffering?

I am reminded of my food allergies, one of which is shellfish (ironically, despite my love of the sea). When others learn that I cannot eat, say, shrimp, I am inundated with expressions of pity and presumption, such as, “Oh, you poor thing! How awful for you! I bet that must be so hard not to be ABLE to eat shrimp!!!”

I don’t think of it as a disability…since the only shrimp I have tasted has caused such trauma and discomfort, I do not yearn for it; I am perfectly happy without it. It is not a pleasant thing for me to regret and miss, since I have not walked on the side of enjoying it. I am blissfully ignorant of the experience, thank you very much, and am perfectly happy with the rest of my diet.

Could it be the same for some others with certain disabilities, that they are entirely complete and fulfilled in the way they have been wonderfully made? Should we not carefully consider what projections we may have when we seek to “help” others and find cures?

Too, suffering has its place. It is not often sought, nor is it bearable many times…yet it blesses with gifts such as perseverance, tolerance, new coping skills, heightened sensory perception and deeper insight into others’ character and virtue, as well as our own. We find out quickly who our friends are, in our suffering.

Here on the seashore, I find broken shells, some of which are absolutely more interesting and beautiful than had they remained wholly intact. In the broken shells, you can see what they’re made of, you can see farther into them, you can see things you can’t see in their unbroken state. They are like snowflakes, each one entirely different from any other….a beautifully abstract medium that begs the imagination to fill in the spaces of its journey, its life, its purpose. The broken shell forces us to focus on those things outside our comfort zones, stretching and molding and growing us in ways we had not considered before. It demands that we pick it up and focus on it, instead of ourselves, instead of on the ideal, instead of on the perfect. Do we toss it back into the sea because it does not meet our standards?

God, may we have wisdom about and sensitivity to Your will. May we have the courage and zeal to embrace those things which we deem as difficult, painful and imperfect. May we resist the temptation to tamper with that which You have willed.

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