January, 2000

~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
January, 2000

Dear Friends:

When I moved here almost 15 years ago, Betsy Trombino was one of the first people I met. When things feel hard in my life, I try to find a way to serve others because I know that brings me great peace and love. I thought I called her to ask her if I could serve as Pilot Parent. What I found myself talking about the devastating experience I had just gone through with David. I found my self pouring my heart out to her about David's heart surgery. She listened with love for over two hours. That phone call made all the difference to me.

In 1985 we moved to Arizona for David. He was only 20 months old. We were still adjusting to the fact he had a disability, and had no clue what the future would hold. We came here because we wanted 'inclusion' at school and we knew that would not happen in the small town of Tooele, Utah. In a heart beat, we sold our home, Curt's dental practice and moved here with five kids and no job... "on a wing and a prayer."

When we were here just one month, David began to show signs of trouble. It was determined he needed his open heart surgery. We drove back to Utah so the doctor's we knew could operate on him. David seemed to do well after the surgery and so on the third day, Curt flew back here to work.

On then night of August 23rd, something happened that would changed me forever. During the day, I could sense David was having a hard time, but I had not idea what was to come. I stayed with my baby all day long and each night I would only leave to sleep in our small motor home. I just needed to be near him. I usually went to bed by nine o'clock, but this night was different. My beloved friend, Kris Holiday, had come to see us and that night we met a young father who baby had the same disability that Kris' daughter had. (Trisomey 18) This little baby was not expected to live very long so Kris and I spent until 11:45 p.m. trying to 'mourn with those that mourn and comfort those in need of comfort."

I have always loved watching Kris work her magic. She has the uncanny ability to put an invisible 'healing balm' on hurting hearts. She is able to spin love and acceptance for she truly understands. It was her own daughter Kari who, years earlier had prompted her to create "S.O.F.T." a support organization for trisomey 18 & 13. This wonderful lady is able to make others wish had a child with a disability. That night she was working her magic in the most wonderful way.

Being with her lifted, my own heart. So I was not prepared for what came next. As I walked into the ICU at Primary Children's Medical Center, my intention was to kiss David good night. I will never forget what my eyes beheld. There was a 'crash team' hovering around my baby. They were doing valiant efforts to save his life. It felt like my own heart stopped beating for a moment. I knew what I saw, yet I could not process it. This couldn't me happening to me or to my baby.

When I asked what was wrong the doctor looked up. His face told me what he was having a hard time finding the words to do so. I will never forget how I felt when I heard his words, "We're losing him. Go call your husband!" I may have looked calm on the outside, I inside I was screaming! It was circuit overload. This couldn't be happening to my baby. He was only 21 months old. This was too hard. In shock, I walked into the empty hospital hallway and starred at the white sound proof ceiling. The strength I had found all along to be there for my son was now gone. Every emotion came tumbling out and I could no longer contained my broken heart.. My salty tears stained my face and yet there was no stopping them. Then I did the only thing I could do. I yelled at my dear God. I have never felt so much grief in my life. I thought how the night before I had prayed not only for David, but for all the children as well. In that prayer I closed with "Thy Will Be Done."

In a way, David's surgery seemed insignificant compared to what most of the parents and children were going through. A ten year old little girl had come to have a brain tumor removed. That precious little child never woke up. A sweet little boy had a small mole removed from his ankle on the day he turned five years old. That day they amputated his leg to his knee and told his mother he had cancer and only six months to live. How do parents ever cope with this kind of heartache? They can't. The burden is much too heavy. As tears streamed down my face and I thought my own heart was going to burst.

I can't tell you what happened that night. I can tell you that with all my heart, I know our Father in heaven performed two miracles. I know with all my heart that the reason David is alive today is not for him, but for his weepy mother. I think of how I responded to this awful news. As I cried, I threatened God. I told him I had lied. That if His will was to take my son, then I wanted no part of it. I felt there was no way anyone, including God, could love this little boy more than I did. I thought of how many people had taken the news so hard of his disability but I accepted him and loved him unconditionally. How could this happen?

When you are grieving you are not yourself. As I cried and yelled at God, I told him, if he took my son, I would never talk to him again. Now as I think about that I feel quite foolish. What a threat! Would it even matter to God if I never prayed again?

I made that difficult phone call informing my sweet husband that David was dying. I feel like a part of him and a part of me died that night. I returned to my son. As he lay there on life support I removed his little blue booties. Don't ask me why, but I guess I had to hold on to something that was a part of him. I felt like as long as I held those booties in my hand and as long as I didn't go to sleep until Curt arrived the next morning, then baby couldn't die. (I am pretty sure there is scientific evidence that will back up this theory. :-)

Before I left David, I kissed his thigh, and then I kissed his little forehead. When I kissed his leg, it felt freezing cold to my lips. When I kissed his head, it felt so hot it was almost burning to the touch. I later asked about that and was told when you are in heart failure, your most vital organ is your brain, and the blood supply will go there.

I experienced two miracles that night that are so personal to me that I can not even begin to write about them. I roamed the empty hospital hall way and begged God that entire night for my son's life.

As dawn was breaking, I called our local temple and asked to have my son's name put on a prayer list. As I hung up the phone, David's doctor came over to me. He looked so sad. In a way, I suppose he was trying to comfort me, preparing me for the worst. He said if my baby did survive, he would be much more brain damaged than he had been when he came in. I looked directly into his young brown eyes and said, "Do you think that matters to me? If you would tell me my son was going to be a vegetable, I would still want him to live." He was now the one who looked confused. I knew doctors are trained in matters of science, not in matters of the heart.

Now that David is sixteen , I think often to those moments that changed me forever. I know I can never be the same. I know that each experience we have shapes us into who we are.

After Duff spoke to us at our last meeting, I realized most parents felt good about what he had to say. But in a way, it was hard for a few young parents. I realized I may have done you new parents an disservice. As I write to you each month, I only tell you the good times with my son. I leave out the hard things.

I don't tell you that most mornings it is all I can do to get him up, fed and out the door for school. I don't tell you about the times, I want to throw in the towel. I know that David gets his stubbornness from my side of the family so I can not even blame that on the Down syndrome. :-)

I know there are times it feels hard, my precious parents. Times when just for once we want the world to understand and cut us a little slack.

I guess it is because I came so close to losing him that even with the hard times, I hold on I think of the saying, "Yeah but for the grace of God, there go I." I was not the one born with a disability he was. And though I don't think I was 'chosen' because I was so good, I do believe God knew with enough time, He could work with me and help me.

As I think about that 'turning point ' in my life, I remember how I wanted David to live with every fiber of my being. It truly didn't matter to me how hard it would be (Okay so I was a little naive at the time!:-)

So please forgive me for sometimes seeing my world through rose colored glasses. I know there are times of joy that I experience with my son is something that he alone can give me.

I thought about love. I thought of David's 16th birthday party where instead of going out on our weekly Friday night date, my sweet husband Curt, sat there eating what tasted like, cardboard pizza, and watching the kids skate. I knew he was exhausted form his work and his life, but there he sat, just because. He is a man who loves his kids, no matter what.

I wish dear parents I could tell you that each of your children will be like Chris Burk, from "Life Goes On." Though I believe with infant stimulation and all that you do for them, many of them will be. It is also okay with me if they are not. It is my prayer that one day we will each realize how blessed we are for having this little child who has been sent to teach us love. I remember after one exasperating day of being David's mom that I again yelled at the heavens! "What is it You are trying to teach me? Patience? Well it's' not working!!!" Does it matter to God whether I ever pray again? I think so. Not for him, but for me. Anyway, dear parents. Thank you for holding on each day. Thank you for reaching out to others and lifting them up. Thank you for knowing that each moment, as we walk side by side with our child, we are helping them and we are helping ourselves understand what is important in life. I wish you the most wonderful Christmas or Hanukkah or just a time to love your family.

With love,
David's mom,
Gina Johnson

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From my heart to yours...

Kevin

My brother Kevin thinks God lives under his bed. At least that's what I heard him say one night. He was praying out loud in his dark bedroom, and I stopped outside his closed door to listen. "Are you there, God?" he said. "Where are you? Oh, I see. Under the bed." I giggled softly and tiptoed off to my own room.

Kevin's unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in. <

He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he's 6-foot-2), there are few ways in which he is an adult. He reasons and communicates with the capabilities of a 7-year- old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas, and that airplanes stay up in the sky because angels carry them.

I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life? Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, returning to eat his favorite macaroni-and-cheese for dinner, and later to bed. The only variation in the entire scheme are laundry days, when he hovers excitedly over the washing machine like a mother with her newborn child. He does not seem dissatisfied. He lopes out to the bus every morning a 7:05, eager for a day of simple work. He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for is next day's laundry chores.

And Saturdays--oh, the bliss of Saturdays! That's the day my dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. "That one's goin' to Chi-car-go!"

Kevin shouts as he claps his hands. His anticipation is so great he can hardly sleep on Friday nights. I don't think Kevin knows anything exists outside his world of daily rituals and weekend field trips. He doesn't know what it means to be discontent. His life is simple. He will never know the entanglements of wealth or power, and he does not care what brand of clothing he wears or what kind of food he eats.

He recognizes no differences in people, treating each person as an equal and a friend. His needs have always been met, and he never worries that one day they may not be. His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it. He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax. He is not obsessed with his work or the work of others. His heart is pure. He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue. Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God. Not confined by intellectual reasoning, when he comes to Christ, he comes as a child. Kevin seems to know God--to really be friends with him--in a way that is difficult for an "educated" person to grasp. God seems like his closest companion. In my moments of doubt and frustrations with my Christianity, I envy the security Kevin has in his simple faith. It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions.

It is then I realize that perhaps he is not the one with the handicap--I am. My obligations, my fear, my pride, my circumstances--they all become disabilities when I do not submit them to Christ. Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of the Lord. And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I'll realize that God heard the simple prayers of a boy who believed that God lived under his bed. Kevin won't be surprised at all.

(Author Unknown)

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My Dearest Friends,

Today I had my last final and guess what?! I got an "A" in both of my classes. I have to tell you this school stuff is harder than it looks, but I am grateful for the things I'm learning. Now on to the good stuff. My friend, Martha Vance knows computers inside out and I only know how to turn it off and on. So if our newsletter looks a whole lot nicer than what you're used to, Martha is the one to thank. Once again I am asking for help. Thank you to all of you who helped set up and take down for our Christmas Party. Is was to precious to me to see Santa with the children. We sure love him. I was thrilled at how many people came out. I love you guys.

In February we are planning a dance for our teens and young adults who have Down syndrome . The last time I opened it up to all who have disabilities. It was the cutest thing! I found out true love is dancing even if you do not know how. It was wonderful! Do any of you know a DJ who could provide the music? My good friend, Vicki Vukobratovich had a photographer come last time and take free 5 x 7's pictures for the kids. It was so fun. We also decorated with tons of balloons. Call me if you have any leads.

Our January meeting will be awesome! My dear friend, Betsy Trombino, will be our guest speaker. Her son, Mark, is turning 30 this month. Mark does not have Down syndrome, he belongs to the Short People of America. Mark is a dwarf. He is also one of the greatest guys you will ever meet. I love his mom so much and I know you will love this lady and get a kick out of visiting with her.

What? "I'm okay with this, but how to I tell my friends?" From the grocery store clerk to my mother-in-law.
When? Thursday, January 20, 2000.
Where? Mesa Student Services Building, 1025 N. Country Club Mesa (West side of street, on Country Club, south of Brown and North of University)
Time? 7:00 p.m. until 9:00 p.m.
Respite? Yes, our precious Melinda Bonham and her friend Amy have served us as volunteers for a year. Are they good or what?!

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West Valley
Support Group
Our meeting in December 9th was mostly a Holiday-get-together. We brought way too much food (of course) and got to know each other better.

I couldn’t find a place to hold our meetings on the second Thursdays of the month, but St. James Catholic Church will lend us their facilities, to hold meetings until May at least. on the second Tuesdays from 7:30pm to 9:00pm.

So our next meeting will be:

Tuesday January 11th, 7:30pm - 9:00pm
at St. James Catholic Church
19640 N 35th Av(south of loop 101)
We will provide Respite care
Hope to see you there!

Martha C. Vance

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"Friends in your life are like pillars on your porch Sometimes they hold you up, and sometimes they lean on you. Sometimes it's just enough to know they're standing by."
Anonymous

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El contacto de habla hispana para nuestro grupo de apoyo a los padres "Sharing" es Raquel Hoffman, si necesitas de ella por favor llamala al (480)357-9594

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Visit our website at: http://www.downsnet.com/sharingdsaz

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Dear SDSA:

As I have delivered our new parent packets to Arizona hospitals, I have seen a great need to translate our packets into Spanish. Any help with this project would be greatly appreciated. Please contact me at (480)752-0995.

Lori Marquette

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"Sharing News" is the newsletter of
"Sharing Down Syndrome Arizona, Inc.".
It is produced September through May each year.
There are no subscription charges.

"Sharing Down Syndrome Arizona! Inc."
is a non-profit agency. We appreciate your support.
If you would like to make a donation to SDSA, please send it to:

Sharing Down Syndrome Arizona! Inc.
c/o Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234

(480) 926-6500

All United Way contributions need to be earmarked with our address and phone # above.

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East Valley
Support Group
Calendar for the East Valley

1/20/2000 "I’m OK with this, but how do I handle other people?" by Betsy Trombino How to talk to your mother-in-law and the grocery store clerk.

2/5/2000 Valentine/Sweetheart Dance For teens and young adults

2/17/2000 Sibling Workshop

3/16/2000 Dr. Dan Kessler developmental pediatrician Children’s Rehabilitative Services/ St. Joseph’s Hospital
4/26/2000 Martha Beck - Author of the bestselling book, "Expecting Adam"

5/11/2000 "Thank you" party At the Johnson's House.
(note change from third Thursday to second)

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"Know that when ye are in the service of your fellow beings, ye are only in the service of your God." Mosiah 2:17

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Sharing Down Syndrome Arizona! Inc.
425 E. Tremaine Ave.
Gilbert, AZ 85234

(480)926-6500
E-mail: gina.j@juno.com
Webpage: www.downsnet.com/sharingdsaz
President: Gina Johnson