Dearest Sharing Friends,
“Some people come into our lives and quickly go. Some stay for a while and leave footprints on our hearts, and we are never ever the same.”
The heading at the top of this page is one I used years ago for my Sharing Newsletter. You know, back in the good old days when we printed hard copies and the mailman brought it to you. When I saw the small handprints on each side the designer had created, I asked if she could turn the little fingers inward so they would look like our children’s handprints. When she did, I love it!
Without a doubt, our kids leave handprints and footprints on our hearts. As I read that newsletter from now 24 years ago, it made me think about the incredible journey our children take us on just because we are their parents. This past November 11, 2023, my son, David, was turning 40 years old. For those of you who love someone with Down syndrome, you know how important birthdays are to them.
And though I have never liked planning parties, I knew this one had to be special. It was not hard because David planned this party. All he wanted was to be the DJ at his party. He also wanted to use the special effects of fire Taylor Cotter used when filming the music video Carol Tingey had him make of her Hip Hop Homies with Extra Chromies. That’s all it took, let him be the DJ and let him use the “fire machines” as he called them.
My friend Taylor Cotter (proud dad of Ezra) who filmed that video, said I could use his special effect equipment but when I rented one of the rooms at their family’s wedding venue (Superstition Manor) he even let us use them for free. I knew David would be so happy.
I saw that a few days before his birthday and always when I least expected it, I would be thinking about him and tears would come to me. When David was little, if he ever saw me crying, he would hurry and reach up to wipe my tears away while telling me, “No cry!” It was as if he thought if he could wipe those tears away, then he could also remove any hurt that had brought them. In his innocence, I knew he did not understand the difference between ‘tears of sorrow’ and ‘tears of joy.’ To him, they are all the same and must be wiped away. Over these past 40 years, he has wiped both from my eyes.
I think the reason it felt so strange that these tears were coming to me all these years later was because I knew my son lived a happy life. Through it all, there have been so many people who genuinely loved him for who he was. It has been like that since the day he was born.
So why were these tears coming to me? I knew I had so much to be thankful for. As my other six children grew older, I saw that I did feel a bit sad each time they turned the page to go into the next chapter of their lives. But time has taught me that even though it might seem hard to let go, soon the next new chapter would bring joys of its own. I knew that was true for David as well, so why was I crying?
I began to think about all he and I had been through since the day he was born. When he was born in 1983, he came as a critically ill premature baby. We were told that if he did survive, his life span would only be 21 years. When we told others of his birth, instead of telling us “Congratulations”, more often than not their response would be, “Oh, I’m so sorry.” Their words hurt my heart. It was as if all they could see was his disability, when all I could see was my sweet baby boy.
Looking back, I can see how much he has grown, but even more so, I can see how much I have grown as his mother. I am not the same person I was 40 years ago. Before he was born, I always tried to avoid confrontation and contention, trying to fly under the radar so to speak. I knew those reactions were due to having grown up in a home ruled by addiction. But our lives were nothing like my childhood had been. As I grew in my understanding of my son, I also grew in strength. I learned to be his voice and I learned to stand up for him, even if I thought I could not stand up for myself. I began to see my son, not how the world saw him, but rather as the
remarkable person he was. And part of who he was, was someone who had Down syndrome.
I began to see how it was because of the fact he had the gift of Down syndrome that made him
the tender, thoughtful,playful, charming,funny, and loving guy that he is today.
David’s party did turn out so very well. One of his favorite parts was when he got to put a whipped cream pie into the face of his Hip Hop teacher, Mariah Adams. (A playful birthday tradition started by another Hip Hop Homie we affectionately call, Chaddie Boy.) He loves to have us throw whipped cream pies in the birthday person’s face at the party. But last because his dance teacher Maria threw the pie in his face, this year at his party he told her he was going to get her, and he did. She was so darling and laughed with him when he got her.
DJ David with his Fire and his beloved Homies with Extra Chromies
This night was so sweet because he was surrounded by people who loved him.One of the things I have loved most about being David’s mom is how our kids with Down syndrome “level the playing field” as they interact with the rest of the world. Each time I see David interact with a stranger, I love to see how he can immediately disarm them. Regardless of any preconceived notions they may have had about what someone with Down syndrome was like, David would immediately take them off guard with his playfulness and his sense of humor. And they, like me, would learn that regardless of the label society had given him, (retarded or intellectually disabled) they were wrong. David is so much more.
David and his Brother
He has the uncanny ability to see things the rest of us cannot. He has taught me what he is teaching them, and that is to know what true love and acceptance feel like. David has a tender and pure heart. He is “heart-smart” (emotional intelligence) but he is also head-smart (intelligent). He is insightful. He is gentle and kind. He also has the uncanny ability to see goodness in others. He uses love and laughter to level the playing field, and we are all better because of it.
I knew all of these things in my mind and heart. So one day as I was trying to make sense of these unexpected tears, I wondered out loud telling my husband, “Maybe if I could have known when David was born, what his life would have turned out to be, maybe then I would not have cried so much.”
With a very thoughtful look on his face, Curt smiled and said, “No, I think you would have cried more.” He knows me all too well.
Because of David, God has given me many gifts, including the many people he put in my life when I needed them most. They would help me find my way. One of those people was someone I wrote about in that old newsletter I found. Her name was Suzanne Miles, and she was one of his first case managers from DDD. (Division of Developmental Disabilities)
When I met her, I liked her right away. She was different than others I had in the past. She did not think it was odd I wanted to have David attend a regular general education classroom with typical, nondisabled age-appropriate peers. She understood my desire to have him fully included had nothing to do with the wonderful laws that had been passed, IDEA (Individual Disability Educational Act) which states that ALL children deserve a free and appropriate education, not just children who do not have disabilities.
I understood LRE (Least Restrictive Environment) which taught that children with disabilities should be included and educated as much as possible with their typical (non-disabled) peers. I did not want David educated in a segregated classroom or a separate school for students with disabilities. He is part of our world.
When I grew up in the 1960’s all children with disabilities were removed from their families and sent to live the rest of their lives in an institution. I am thankful for those who came before me as they were the parents who fought to change that. I knew that Down syndrome was the most common genetic anomaly and out of every 691 babies born would have this disability.
I knew one day that one of David’s classmates would have a baby like my son. And instead of them feeling like I did, as if my world had come crashing down around me, they instead would be able to think back and say, ‘Hey I grew up with a boy named David who had Down syndrome, and he was my friend.’
Suzanne did not push me, but she stood back and allowed me to stand up and speak for my son. It was not easy, but I was able to get that for all his years at Burk Elementary School. With the curriculum geared to his ability level, he learned much academically. But even more so because the kids he went to school with became his friends, he learned that he belonged. The children loved him. When he was about to start Gilbert Junior High, I did not realize it would be harder to make that happen.
I could see I had a fight on my hands. I naively thought if I could just explain why it was so important to me that David be included when we met for his IEP (Individual Educational Plan) meeting, they would understand. I was wrong.
I had invited Suzanne to attend as a moral support. She did not offer advice, she just listened. But as time went by, I looked at the clock and saw that it was ten minutes before 2:00 p.m. I knew I was fighting a losing battle.
I was not rude but in a calm voice, I simply said, “I can see that in the time we have left, we are not going to be able to write an effective IEP. And since what you have proposed is totally unacceptable to me, I am going to close this meeting.” I then got up and walked out.
I had almost reached my car when I heard Suzanne’s voice calling to me saying, “Gina! Wait!! Gina Wait!!” I stopped and by the time she caught up with me, she was out of breath, but she had the cutest smile on her face. With a twinkle in her eye, she said, “I only have one question. Whatever happened to ‘mousey’ Gina?” I laughed out loud when she said that. And then I replied with the answer I knew she already knew, “Oh, she is long gone!”
I remember seeing Suzanne smile, and I had a feeling she knew she was watching me grow right before her eyes. And though she did not say it, I could tell by the look on her face that she was proud of me. I was proud of myself as well.
Here is what I wrote about her 24 years ago …
“Susanne Miles is not only my case manager, she is my friend. Over the years, she has watched me grow from a shy, unsure mom into a Mother Tiger. She has seen my struggles and growth as I have learned and grown in my feeble attempt to be a good enough mom for David. One day, I was sharing how I felt a mother’s personal belief system can affect her feelings for her child. I shared that as a member of The Church of Jesus Christ of Latter-day Saints, (old nickname, Mormon) I truly believed it is only David’s mortal body that has the disability, but that who he really is, or who his spirit is within him, was the very best and most perfect that God could find. And that he has come to teach me.
With her adorable smile and her feisty attitude that I have grown to know and love, she said, “Oh Gina, I don’t believe that for a minute!” With playfulness in her voice, she continued. “I just think one day God smiled and said, ‘’Hey, let’s see, let’s see what Gina does with this one!” Her words made me smile, for I am sure there are times God must be chuckling as he watches me awkwardly scramble, trying to know what is best for my son.“
I share these stories with you to tell you, dear parents, that I know just as God is doing the same thing for you. He will put remarkable people in your path when you need them most. And down the road, he will use you as that person for someone else for it is true, “A coincidence is God’s way of remaining anonymous.”
Someone else God placed in my path is Myrna Sheppard. I met Myrna when I walked into her hospital room, the day after she delivered her baby girl, Haley.
Myrna greeted me with a warm smile, and I could see Haley sleeping peacefully in the clear issolette next to her bed. As I got to know Myrna, we became friends. I have loved getting to see what an amazing person she is. Myrna is happily married and the mother of seven children. She is an educator who at that time was serving on our Gilbert School Board. Myrna played an important role in helping me when I was fighting the schools by giving me the confidence to speak up for my son.
Sadly, her sweet Haley passed away when she was just 14 years old. I always offer to speak at our children’s funerals because I want to testify to the world who our children truly are. They are not a mistake of nature, but rather they are a gift from God.
I wish you could have known Haley. You would have loved her. She was spunky, sassy, funny, and a loving young woman. She was playful and insightful. Haley passed away on the day before Valentine’s Day, and it is only fitting it be so close to that day because Haley was filled with love. After her funeral, Myrna told me the sweetest story. She said that every night they as a family would kneel in family prayer. Each night, a different family member would offer the prayer. Haley could speak very well and she was comfortable saying the prayer.
Haley’s prayers were always heartfelt and sincere. So, on that night night when her dad asked her to say the prayer, she was happy to do so. She began by saying a sweet heartfelt prayer. But then, unexpectedly, Haley decided to tell a joke right in the middle of her prayer.
When the prayer was over, Myrna, perhaps wanting to help her daughter understand reverence, told her, “Haley, I don’t think Heavenly Father wants you to tell a joke during the prayer.” Without missing a beat, Haley looked beat, Haley looked up at her mom and smiled and said, “No Mom, he liked it!” 😊 And I have a feeling He did. Thank you, dear friends, for letting me share. I am grateful for all you do for your children, and I am grateful for all you and your children teach me. I love the footprints (and handprints) each of you have left on my heart.
With all my love,
Gina Johnson (aka David’s Mom)