~Sharing News~
Newsletter of "Sharing Down Syndrome Arizona
June 17, 1998

My Dearest Parents,

You'll never know how precious it was for me to spend time with you at our June 13th picnic. I can't believe your babies are growing up so fast. I must be getting old!

I have to give a special THANK YOU to Kathy Mutschler. That sweet lady called two days before, right after I had been given some heart breaking news about my mom. At that point I didn't know if she was going to live or die. Kathy lives almost an hour from my home. She knew I was going to be in the hospital all that day and barely make it home in time before you came.

Do you know what she did? She came to my home when it was messy (how embarrassing) and cleaned and did dishes so I fooled you. You thought it always looked that good! Thank you dear friend! And good news...my mom is doing great!

How does that line from Fried Green Tomatoes go?..."That which does not kill you makes you strong." Well, it's true. I learned that night that a daughter never grows too old to need her mother. I am so blessed.

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Just so you know our meeting for July is...
What? Fun get together with snacks!
Date? Tuesday July 7, 1998
Where? Mesa Student Services Building
1025 N. Country Club
(East side of street between University and Brown Road)
Time? 7:00 - 9:00 p.m.
Respite? Of course bring those precious babies!
Why? Because we love you and to meet great people!

Sometimes as 'seasoned parents' we forget how important it is to still come and support our new families. As we grow we come to love our kids for who they are. And we find out who we are. When it doesn't hurt any more we move on That is a wonderful place to get to. But if you can, please come and meet our new families, they are so great!

I remember the first time I met my Pilot Parent who had a little boy with Down syndrome. She was so pretty and happy. I honestly thought I would never smile or laugh again. I wondered how she ever lived through it. I could only hope to be like her some day. What surprised me the most is how quickly that day came. And now my son is 14 and I treasure every day of his life.

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We pray for children
Who sneak Popsicles before supper.
Who erase holes in math workbooks.
Who can never find their shoes.

And we pray for those
Who stare at photographers from behind barbed wire,
Who can't bound down the street in a new pair of sneakers,
Who never "counted potatoes,"
Who are born in places we wouldn't be caught dead in,
Who never saw a circus,
Who live in an X rated world.

We pray for children
Who bring us sticky kisses and fistfuls of dandelions,
Who hug us in a hurry and forget their lunch money.

And we pray for those
Who never get dessert,
Who have no security blanket to drag behind them,
Who watch their parents watch them die,
Who can't find any bread to steal,
Who don't have any rooms to clean up, Whose pictures aren't on anybody's dresser,
Whose monsters are real.

We pray for children
Who spend all of their allowances before Tuesday,
Who throw tantrums in the grocery store and pick at their food,
Who like ghost stories,
Who shove their dirty clothes under the bed and never rinse out the tub,
Who get visits from the tooth fairy,
Who don't like to be kissed in front of the car pool,
Who squirm in church or temple and scream into the phone,
Whose tears we sometimes laugh at And whose smiles can make us cry.

And we pray for those
Whose nightmares come in the daytime,
Who will eat anything,
Who have never seen a dentist,
Who aren't spoiled by anybody,
Who go to bed hungry and cry themselves to sleep,
Who live and move, but have no being.

We pray for children who want to be carried,
And for those who must be.
For those we never give up on, and For those who never get a second chance.
For those we smother
And for those who will grab the hand of anybody kind enough to offer it.

We Pray for Children written by Ina J. Hughs...
published by William Morrow & Co.

Calendar of Future Meetings
(Am I getting organized or what?!!!!!)

Tuesday July 7, 1998 7-9 p.m. Mesa Student Services Building
Monday August 10, 1998 7-9 p.m. Mesa Student Services Building
Tuesday September 8, 1998 7-9 p.m. Mesa Student S. B.
Thursday October 15, 1998 7-9 p.m. Mesa Student S.B
(Also don't forget the Buddy Walk on Sunday October 25th in Phoenix, but more information about that later)
Tuesday November 10, 1998 7-9 p.m. Mesa Student S.B.
7th annual Christmas Party Saturday December 5, 1998 Gilbert Jr. High School Cafeteria... 3:00 - 6:00p.m. Dinner and Carnival !
January 12, 1999 7-9 p.m. Mesa Student S. B. February 11, 1999 7 -9 p.m. Thursday Mesa Student S.B.
Also in February we will have our annual Valentine's Dance but I'll let you know the date soon. Also at the Gilbert Jr. High School only in the gym.
March 9, 1999 Mesa Student S. B. Tuesday April 13, 1999 Mesa Student S. B. Tuesday
June 6, 1999 Tuesday 7 - 9 p.m. Mesa Student Services Building

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Recently I had the most precious opportunity to visit with a grandma who just found her grandson who isn't due till November will have Down syndrome. You know, in a way I feel bad for parents who find out prenatally. It seems to me it is harder that way.

I know they have to struggle through all the grieving process like we did but they don't have an adorable baby to hold and to love. I remember holding David as a new born and feeling so sorry for him. Not because he had Down syndrome but because I didn't think I had what it took to be a good enough mom for him. I didn't know he would show me how. He would love me and I would love him. It was easier than I thought.

This sweet family I was telling you about is hurting. (Which actually tells me they have begun the first part of their journey.) At this point they are not sure if they should even keep their baby. How my heart aches for them. I want to go and hug them and tell them what I know in my heart to be true. That each one of us had to hurt. And how it feels like the hardest thing God will ever ask you to do. But slowing you come to realize you are not alone in this task.

You find God puts others in your path who have been there and who care. When David was born I couldn't see it. He looked just like our other four at home. And I guess to be truthful with you, I didn't want to see it.

Because David was a very sick little boy he had to stay in the hospital for some time after his birth. The day the doctor was sending me home was a hard one. I loved David but I had never been so scared in my life.

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"I never knew grief felt so much like fear" C. S. Lewis

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How in the world was I ever going to be good enough to be his mom? I hated the words they used back then to describe my beautiful child. Mentally 'retarded'. What a horrible word. That morning a nurse came into my room to tell me about many programs that were available for my son. I was surprised at her knowledge. I asked "How do you know so much about kids with handicaps?" She told me she had a son who was severely mentally and physically retarded. I felt so sorry for her. Just hearing those words cut into my heart.

Because I was hurting I asked her a painful question... "How did you feel taking a mentally retarded baby home from the hospital?" She looked at me sharply. She replied..., "I didn't, I took a normal baby home." I must have looked confused. She went on..."When my son was five years old we were having a picnic in the back yard. He ran inside to get the potato chips off the counter. As he came out he came through the garage, he tripped and the garage door came down and crushed his chest. The insult to his brain was the same as a drowning." Then she added..." You have no guarantees with any of your children."

As she left the room I kind of caught my breath. I realized she was right. I didn't have any promises that one of my other children wouldn't be hit by a car, or have a disease that would hurt them physically. Somehow that understanding changed things.

I guess I think of that as I think of these precious parents. I understand they just need a little time to let their hearts heal. And I know too, that there are no wrong answers. If they choose to place their baby for adoption, then I know they would not have done so without much soul searching. And I know too, that there are loving families wanting to adopt such a child.

I guess what I feel the most sad about is my inadequacy to express in words what my heart feels but my mind can't say. How do I tell them one day they will laugh? That they will look at themselves and in a small measure they will miss the innocent young mom or dad they were...but as they search a little deeper, they will be thankful for the person they have grown into be. This is a calling they did not choose but one they went forward in faith about. I can not tell them how they will not only live through, this but they will be great parents as well.

Can I be honest with you and tell you sometimes I feel like I deserve the "Mother of the Year Award " because I am so good. And other times I cry and almost feel like I am losing it and I don't want to be the 'Mom' any more. When I was pregnant with my 4th baby I was overwhelmed and in tears. (Poor Curt). I was crying and told him..."I wasn't cut out to be a mother!!!" With a smile and in his gentle humor he replied ..."Well, now's a fine time to tell me."

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Oh my dear friends...don't you hate it that I use my newsletter to you in a way like my journal ... I share the feelings of my heart. Well, thanks for listening. Thanks for eing my friends.

Love, David's Mom

A CHILD FIRST "Understanding he is a child first and disabled second is the greatest need of the handicapped child if he is to succeed educationally in the least restrictive environment." Martha F. Robinson Education Unlimited.

Affiliated with the National Down Syndrome Congress and the National Down Syndrome Society

Sharing Down Syndrome Arizona! Inc.
Gina Johnson
425 E. Tremaine Ave.
Gilbert, AZ 85234
(602) 926-8685
gina.j@juno.com

"I know God will not give me more than I can bear. I just wish he didn't trust me so much."
Mother Teresa