Tuesday, August 16, 2005

Two Wonderful Stories

I want to thank Bob at Uno Mas 21 for finding these stories. Although these stories are quite long they are well worth the read. Enjoy.

<< At First GlanceBy Edwin Leap, M.D.

The value of a life is always more than meets the eye

Vacationing near a mountain lake in Tennessee, I watched as a woman beganthe walk from her cabin to the pool where my children and I were playing.From a distance, I wasn't sure if she was old or young. She appeared heavy,wore a large hat and walked with a slightly awkward gait. It became clear asshe drew closer she had been born with Down syndrome. She was probably inher late 20s or early 30s. She did not carry herself with grace or elegance.She was pale, and her one-piece bathing suit was plain, like those thatgrandmothers wear as they watch their grandchildren splash in the warm wateron beaches at low tide.I was a little anxious. No family or friends accompanied her. She placed hertowel on a lounge chair, sat down and faced the clear water. I wondered ifshe understood the danger and depth of the pool as she sat relaxed near thedeep end. My triple engines of worry, fatherhood and medical degree began tomake me anxious.She moved to the edge of the pool, and I fidgeted. Was she even supposed tobe there? Was someone looking for her, concerned she might come to harm? Iquietly wondered these things as she slid into the water and began to glideacross the pool with the even, silent strokes I have always desired butnever accomplished. I don't believe my jaw dropped, but I'm sure my eyeswidened. I laughed to myself. She had spent years swimming; for all I knewshe may have been a Special Olympian. The water received and embraced her.Her kicks were quiet, and the cyclic movements of her arms made no splash onthe surface. Her breathing was relaxed and measured, and one might haveassumed she was some aquatic creature born and raised in the depths of theocean. The body that seemed cumbersome on land became graceful and elegantthe second she pushed away from the ladder. Her awkwardness dissolved in thewater; she was transformed before my eyes.Too often, those of us with healthy bodies and minds imagine that our world,the one in which we individually dwell, is the best one. We believe,falsely, that imperfect lives are malformations and mutations that shouldnever have occurred. It's easy to make sweeping statements about quality oflife when our reference is the quality of our own. I saw in that young womanhow easily I could be wrong and how wonderful it was to see the truth.Sometimes I mistakenly think God's destiny for certain groups is a thingthat will begin when He makes them whole, that somehow, those with geneticanomalies or debilitating medical problems will simply have to sufferthrough and that we will suffer as we care for them until such time as theyenter God's presence through death, or He returns to renew all life in theway originally intended.But the truth is, I can't discern her quality of life. And I have no idea ofGod's destiny for her. I suspect her quality of life is wonderful, if herswimming was any indication. And she lives, so God must have something instore for her. Maybe we are only a discovery away from a chemical or geneticmanipulation that will "cure" her, and with a subtle flick of a biologicalswitch, an activation of what someone thought was "junk DNA," transform herinto something hidden in her chromosomes all along: world-class athlete orintellectual giant. Maybe not.More likely, the ultimate value of her life is something I will never know.God is under no obligation to explain these things to me. I think He smilesas I ponder them, but He will reveal them only in His good time. All I knowis that in a few laps across the pool, that young woman showed me that everylife has more value than I can ever begin to see, and more wonder and potential than I can imagine.

>><< A Gift from John Karl

A local hero By Michele Iallonardi

Last year, I read that one of our local autism organizations waspartnering up with a local swim program. They agreed to pay half the costfor a six week trial of one-to-one swimming lessons. I thought about thisfor months. I was so nervous to hand my son over to a stranger in the pool,even though I'd be right on the other side of the wall, watching.Jackson can be tough to work with if you don't understand him. Hedoes not talk - he has never spoken a word - and so communication isdefinitely very limited. For a three year old, he can actually be prettyintimidating. I was reluctant to sign him up.I'm not sure why, but one day last fall, I changed my mind and decidedto do it. I called Saftswim and explained our situation. I spoke withCandace, and shared my concerns about Jackson, and what I hoped hisinstructor would be to him. She suggested John, and so we set up our first6 week session with him.Like a nervous (or should I say totally neurotic?) mom, when wearrived at Safe t swim, I was totally freaking out. The instructor was ateenager! My heart started beating fast as I walked into the pool area.Quickly, I blurted out "he has autism, he doesn't talk, he doesn't reallyunderstand a lot, etc, etc, etc." John just smiled and said, okay, don'tworry about it. I'll take it easy, we'll be fine." And I had to walk outof the room, to the other side of the one way glass. I can't believe we'redoing this, I thought.We went into that room, and sat with the other parents who werewatching their children swimming around. I sobbed for the first tenminutes.My son was having fun. No preparations, no planning, no programming.My son was having a good time - just like every other kid in the room - forthe first time in his life. Most things in his life- especially most newthings in his life - are very stressful. This, however, was not. He wasjust a boy, in the pool, having fun.Now of course, we totally can't afford one to one swim lessons! ButJackson kept swimming. Month, after month, after month, we signed up.Always with John. There were times when John would be out, and Jacksonwould have to swim with a covering instructor. It never worked out.Usually it was because the instructor was nervous or uncomfortable withJackson. They didn't know what to do with him, or what he liked, or what hewas capable of. We would end up walking back and forth into the pool roomto talk to them. It got to the point where if John was out, Candace wouldcall us and see if we wanted to cancel. For Jackson, the lessons were awaste if they weren't with John.In March of 2005, after Jackson had been swimming with John for over 6months, I wrote a letter to the owner, telling him what a wonderfulexperience swimming had been for us. It was all because of John, and hisnatural way with Jackson. It amazed me how someone so young (John was only18) could be so wise, so kind, just so good with my son. We were extremelylucky to have found such a good match. Jackson was very comfortable in thewater. He was learning to kick, to dunk his head under, and to jump in thepool. His trunk strength increased from learning to climb out of the pool,and he was very interested in the other kids who were getting lessons aroundhim. Swimming here was just so much more than we had hoped for.It carried over into his daily life. He seemed more confident andindependent. Jackson became very comfortable in the water, and swimming issomething that we really started to enjoy together. Jackson loved swimmingwith John and we really looked forward to taking him there. It was a niceway to end the week- after all, he works so hard- this was just pure joy.Innocent, easy, typical fun, which was hard to come by for our son.Memorial Day weekend 2005, everything changed. I was away at anautism conference. My husband took Jackson to swimming at 7:30p.m. onFriday night. He decided to take a picture of Jackson and John and send itto me on the camera phone. Later when we spoke about that night, he told meJackson was John's last student for the night, and that John's friends werewaiting for him to get off work. Jackson swam with John that night, and hada great time.That was the last time.The next morning John was driving with a friend, and had a terribleaccident. His friend died. John was taken to the hospital where he was puton life support. We found out about it on Tuesday morning. John was takenoff life support Tuesday night. I'm numb as I write this, as it was only afew weeks ago.I have cried a thousand tears.And who am I? Just a mom, of a little boy, who swam with John for 30minutes a week. A mom of a boy who has autism.I am devastated by the loss of this young man. For the obviousreasons- a young life lost, a sweet, kind young man, taken a way. But more,for the not so obvious reasons. This is a young man who changed my life,one who has given me a gift that no one else has been able to.Jackson's 3 and a half years have been difficult, complete with bothmedical and developmental problems. He has had surgery 3 times. He hasundergone countless medical procedures, evaluations, etc. While I waspregnant with him, doctors told me that he might not survive the pregnancy.Jackson's life was difficult even before he was born. Almost every aspectof Jackson's life was complete with worry.Not this one. For 30 minutes, once a week, I got to be a regularmother. Just a mom, watching her son swimming around and having fun. I gotto feel normal. I got to see what life is like on the other side. That wasJohn- giving me what no other person or experience has been able to.And that won't happen anymore.After John passed away, I went back to Safe t swim to bring somepictures for a scrapbook that they were going to put together for hisfamily. I knew when I walked in that door that Jackson could never go back.I could barely stand there and hand the pictures over. This couldn't behappening- not to this amazing kid. It doesn't make sense. I hardly madeit out the door, crying through the parking lot, sobbing into my car.Life just isn't fair.A few weeks earlier, I had talked to John about stopping swimminglessons in August. At this point in Jackson's development, we knew that hewas not ready to really learn to swim independently. He had gotten a lotout of his swimming lessons already- confidence, strength, socialization,and fun. He had achieved more than I'd ever expected. But we just didn'twant to stop yet. Even though it was expensive for us, Jackson was justhaving too much fun.God, how my husband and I loved this kid. When we went to the wake,we introduced ourselves to his family. How could I explain to them what animpact he had on our lives? What a special person we thought he was? Howcould we express how our lives would never be the same? My sorrow was sogreat, that I could not even begin to imagine theirs. And I am just the momof another boy.A boy who has autism. A boy who doesn't know that his teacher isgone. A boy whose life will not be the same without him.I learned from his parents that John had always been a compassionateperson. He worked with children and animals for years and years. When hepassed away, they donated his organs and he helped save four people.You saved me too John. You gave me a glimpse into a window that Ihadn't seen.We keep the picture of you and Jackson in his room, from the last daythat you swam together. I will make sure that Jackson understands what you did for us. You gave us an amazing gift, and we will never forget you. >>


Naomi said...

You need to put a note before that second story to only read when you're alone and have a box of tissues present. Thanks for sharing 2 wonderful stories.

Stella said...

Thanks for sharing and yes the second one broke my heart.

Julana said...

Thank you for sharing those. There was also a boy in our community who was active in teaching swimming to children with special needs. He drowned a few years ago, evidently got a cramp, and no one noticed his disappearance in time. His school (football?) coach's wife was pregnant at the time, and the baby was named after him.

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