“I will act as though what I do makes a difference.” ~Ben Franklin
Dearest Beloved Friends,
Recently, when I was looking over some old Sharing notebooks, I came across a collection of what my newsletters looked like years ago. In 1991, when I started “Sharing” I would mail parents, a one-page write-up telling them about each monthly meeting and who the guest speaker would be. In time, that evolved into a 12-page hard copy newsletters like these below.
My friend put a child’s hand print on the top corners and I loved it. I asked if she could change it to have the baby finger tilting inward like our kids’ hands and when she did, I loved it even more. The pages were filled with uplifting thoughts, poems, pictures, and a list of all the new babies I had visited that month. One section called, “From My Heart to Yours” is where I shared something I’d learned by being David’s Mom. I’ve always loved taking pictures of these children and of my own seven children. One day my oldest son, Seth, playfully nicknamed me, “Mamarazzi”, a title I’ve proudly carried to this day. I began “Sharing” because I never wanted another mother’s heart to feel as broken as mine felt when my son, David, was born. The wish of my heart was to “educate and empower, but most of all give hope” to new families.
As I look back at the countless pictures I have taken of these beloved Sharing children and their families I realized why I loved these pictures so much. To quote Dr. Seuss, “Sometimes you will never know the true value of a moment until it becomes a memory.”
Media is a powerful way to capture moments that might seem ordinary to others but ones that mean so much to us. Moments we might otherwise forget. Just before Brad, our fourth baby was born, we wanted to buy a movie camera to record his birth. But when we went to the store the clerk told us the new cameras not only recorded the movie, it recorded sound as well.
The first video we recorded with Curt’s parent’s old movie camera was of me when I bathed our first-born baby daughter, CJ. I felt silly watching it because I saw how I even wore a black plastic apron Curt had from dental school, in case my tiny three-day-old baby was going to splash and get me all wet. But I loved watching it because I also saw my beloved mother-in-law there helping me. Though there was no sound, other than the whirring sound of the film as it spun from one wheel to the other across the light, yet it felt magical to see my baby girl as the images flickered on the screen.
Luke Age 3
Just before David was born, we used our new camera to record a video of our then almost 3-year-old son, Luke sitting in his high chair with his big brother Seth right beside him. Seth had taught Luke to sing a song I’d never heard before. It went like this, “If there is a chore to do, do it with a smile. Do more than you are asked to do, go the second mile!”
Hearing Luke sing those words melted my heart and I asked Curt to hurry and get the camera to record that moment.
As soon as Curt came back, I asked Luke to sing again and he did. In his cute little voice, he sang with all his heart. But then right when Luke got to the end of the song, that little stinker changed the words and gleefully sang out, “If there is a chore to do, do it with a smile. Do more than you are asked to do… AND THEN THEY HAD A POOPY DIAPER!”
As soon as we heard that Curt and I busted up laughing! And Luke did too! What a character he was! I just shook my head wondering how my sweet little boy was already ALL BOY, thinking ‘potty humor’ was so funny! What a kid! (It won’t surprise you that today that same son has a career in filmmaking and still loves to make people laugh. (check out www.davidmoviestar.com)
Tanner and Brad
Well, we never watched that video and like so many other videos we’d taken, it ended up being tucked away and all but forgotten. As the kids grew older, they loved making their own videos of themselves being live action Ninja Turtles or singing in their own rock band. Yes, those videos were tucked away but then, from time to time and with no rhyme or reason, those silly videos would surface, and the kids loved watching them.
I loved that the kids loved seeing themselves in those movies. That was of course until the day I walked into the family room to find our 4-year-old son, Brad watching TV with his best friend, Tanner Flake. They were sitting on the floor in front of the TV with their eyes glued to the screen. When I got closer, I realized they were watching the video Curt had taken the day Brad was born. The scene on the TV was right at the moment I was giving birth. To say I was mortified is an understatement! Needless to say, I quickly turned off the TV and sent them out to play in the backyard!
Brad was just 18-months-old when I went unexpectedly into premature labor with my next baby. I felt a sense of panic as we drove the 45-minute drive to LDS Hospital in Salt Lake City. I could feel the baby’s head in my birth canal and I just hoped we could get to the hospital in time.
I was both excited and yet scared. I was glad Curt had grabbed my overnight bag and our camera, so we could record this new baby’s birth. Within minutes after we arrived, we rushed into the delivery room and our baby was born. Our dear doctor announced, “It’s a boy baby!” and I began to cry happy tears as I told him, “His name is David.” But then he held my baby up, so I could see him and I felt a sense of panic go through me.
David was not pink like my other babies had been. He was blue but when I commented about that doctor tried to comfort me by saying David just needed a little oxygen to ‘pinken him up.’ The nurses hurried to move him to the warming tray and I watched as they put the small oxygen mask on my baby and I could hear his muffled cries.
The nurses were whispering but silly me, I thought they were commenting about how beautiful he was. Years later, when I finally did watch that video, I could then hear their words as they were quietly commenting about all the anomalies, the markers, of Down syndrome they saw. Our lives turned upside down from the moment we were told our newborn baby was critically ill and might not make it. But hearing them tell me my beautiful newborn baby would be “retarded” (the words used in 1983) for the rest of his life, broke my heart into a million pieces.
I didn’t want others to know how heartbroken I was. I loved my baby with all my heart, but still, the pain was very real. One thoughtful nurse later asked me his name and when I said it was David, she said, “Do you know the name David means, beloved.” Her kind words made me cry even more.
I knew God had made a mistake in sending David to me. I knew I sometimes even yelled at my other kids. I knew I did not have what it took to be the mother of a child with a disability. Everything felt so hard and I was numb trying to absorb the shock.
I was with a dear friend and I sat there quietly as she chatted. I just sat there listening but not saying a word. Then, suddenly, she stopped and asked, “Gina, how are you doing?” I replied that I was fine, but my mind was a million miles away. She then paused and looked at me thoughtfully and said, “No, I mean, how are you REALLY doing?” Her words caught me feeling so vulnerable and tears filled my eyes as I said, “Toni, it feels as if my heart is breaking.” Her reaction took me by surprise. With a kind smile on her face and with a quiet excitement in her voice she said, “Well, didn’t you ever read, The Grinch Who Stole Christmas?” I felt confused. I had read that book but what in the world that had to do with anything?!
She continued, ”In that story the Grinch’s heart had to break, so it could grow bigger and hold more love. And that is what is happening to you.”
As soon as she spoke those words, it was as if she had put the most healing balm on my broken heart. I knew she was right. But still, life felt hard. I was a busy young mom of five little one’s ages 7, 5, 3, 18-months by the time we were finally able to bring our baby home.
Time passed. I loved my baby but still, it felt hard. He was growing and so was I. To the outside world, I was doing okay, but I knew that my pain still lingered. Then one day I was in the kitchen and the kids were once again digging through the old videos for something to watch.
They popped one in the VCR and as soon as it began to play, I could hear the sound of Luke’s little voice singing that silly song and something happened that I didn’t expect. A smile came to my face and a feeling of joy came to my heart. I had never seen that video, but I remembered how I felt the day we recorded it.
Ever since my baby was born, and I was given the news of his diagnosis, I felt a sadness that would not leave. I was pretty sure that one of the rules in the unwritten handbook for parents of children with disabilities was that we were not allowed to ever smile or laugh again. But hearing Luke’s little voice singing made me feel happy. Though I had never watched that video, I remembered how happy I was the day it was recorded.
Yet as soon as I began to watch that video, the happiness I was feeling left instantly. When Curt took that video, I thought it was only of Luke, but now I could see that I was in the frame as well.
As I looked at myself, a deep sadness washed over me. Oh sure, Luke was still as adorable as ever…but as I watched the video, I saw that I was not looking at Luke but rather at the reflection of me, or at least the me I used to be.
A powerful wave of grief washed over me and for a moment, it felt hard to come up for air. As I looked at that naïve, cute, clueless happy young mother, I wondered, “What has happened to her?” The person I saw on the screen was ME, the person I was BEFORE David was born. But everything was different now. I fought back my tears, feeling the pain of knowing that a moment in time that once brought me so much joy now only brought me the painful reminder of all I had lost.
I didn’t let the kids see how sad I was, but as soon as the video ended, I put it away, hoping never to see it again. Seeing it reminded me of how much I had lost. But life goes on. Our lives changed. We moved away from all we knew and loved in Utah to move to Arizona. In Utah at that time, David would have to go to a school that only included children with disabilities. I knew he needed more. He needed to be with typical kids and they needed to
be with him.
In Arizona, David was allowed to go full time in a Gen. Ed. classes with his typical nondisabled peers. He was not at their grade level, so we geared the curriculum to his ability level. David can tell you he had Down syndrome, but he does not view it as a negative thing. That experience of going from Kindergarten through his Gilbert High School graduation has given him the gift of friends who love him and accept him for just exactly who he is. (This year is his 20-year class reunion!)
Years later, our seven kids had come home for Christmas. Once again, my home was filled with the noise of joyous chaos that I loved. It didn’t surprise me that again they began to drag out old videos to watch of themselves as kids. I was busy getting dinner ready when it happened, but I heard it immediately. It was the sweet voice of my little Luke singing his song. I had come a long way since that day, but I knew if I saw that video, it would remind me of the sadness of my past.
But since I could see the TV from my kitchen, I tried to mentally braced myself mentally and emotionally brace
myself for the feelings that video would bring to me. But to my surprise, when I did look at the screen I found myself again not looking at my sweet little Luke, but rather again looking at me. But to my complete surprise, instead of feeling that deep sadness I had felt before, seeing the old me brought a most tender feeling filled my heart.
I smiled as I looked at the image of the person I used to be. I knew I was different now. My hair is gray and all my kids have grown up. We have 13 darling grandchildren who love us. I smiled thinking that yes, without a doubt that young, happy, naïve and clueless, young mother of my past is long gone.
But in her place is a SEASONED mother. One who has learned how to stand up not just for her own child, but for many others. The tears that came to my eyes now were not ones of sorrow, but rather ones of gratitude for the little boy who changed my life forever. And gratitude to God for trusting me enough to let me be David’s Mom.
The same will happen to you, dear friends. There will be moments of sadness and hard times, but there will be many more moments of joy. You will look back at the life God has given you and I promise you will treasure all of it.
Even and especially the times that made you cry. For God is giving you an understanding heart.
My David has grown up to be a wonderful 39-year-old man who loves all babies but especially those who have Down syndrome. And the friends he has given me teach me so much. Kris taught me to love my son, simply because he was my son.
Carol would show me a side of David I had not seen before, one of him being a comedian, always wanting to make people laugh, much like his big brother, Luke. He would flirt with all cute girls, and he would teach me to look at others but not with the blinders I had been wearing, but to see them as he does, with his heart.
It is because of David that I have so many dear friends who, like me, are lucky enough to have a child with a disability. And others who have carried me when I felt I could not go on. These mothers give me strength and a joy I did not know before. They laugh with me. They cry with me, and I know I am a better person for knowing them and their children.
Love,
David’s Mom (aka Gina Johnson)
