“True friendship begins when one person looks to another and says, “What? You too?!” ~ C.S. Lewis
Dearest Beloved Friends,
Nearly 39 years ago when I was trained by Betsy Trombino and Kathy Pastores to serve as a “Pilot Parent” (Now called Raising Special Kids) we met every Thursday from 6 until 9 pm for six weeks to learn how to be an effective parent leader. At that first meeting, they asked us to go around the table and tell who we were, say our child’s name and disability, and then tell something about ourselves. I listened and felt a kinship with each of the people who shared as one by one it went around the table. Then it was the turn of the woman sitting next to me. She began by saying her name and her child’s name and disability. But then she said something I was unprepared to hear. With some anger in her voice, she said, “Do you want to know what I hate? I hate it when people say having a child with a disability is a blessing!” She went on to tell why she felt that way. When she finished the whole room was filled with an awkward silence. I thought about something Steven Covey once said, that, “Feelings aren’t bad or good, they just are.” I knew she was just telling me what she truly felt.
All eyes turn to me and I knew it was my time to share. I felt a tightness in my stomach. I didn’t want to dismiss her feelings, but I also knew that I must tell them what I thought, so I began, “My name is Gina Johnson and my son David is 21 months old and he has Down syndrome.” I then paused, not sure how to continue. But then, while nodding toward the woman beside me, I kind of shrugged and sheepishly said, “I am one of those kinds of people she hates.” Everyone burst out in laughter. But I wasn’t trying to be funny, I was just telling them the truth.
I’m not sure what happened to that other mother over these past 39 years, but I do know what has happened to me… I have grown. I have begun to see the world through my son’s eyes. And while yes, there are still trials and challenges and times he makes me crazy; I am so very thankful for the ability he’s given me to focus my lens. I am sure you, like me, see every day how your child impacts our world. This past month I’ve been able to see four times how much our kids change our world. The first time was when we spoke at the Mayo Clinic.
Mayo Clinic Presentation July 17, 2023
The first time came when we spoke at Mayo Clinic. Over the years when I speak to students I them that though I have read a chapter that talks about Down syndrome and yes, much of it said is true, it cannot ever fully teach them who our children are.
When I was growing up and a young mother having my family, we didn’t know the gender. When people would ask if we wanted a boy or a girl often the response would be, ” I don’t care, as long as it’s healthy.” Well, what happens, like for so many of us, or children are not born thriving? Do we love them less? No, of course not. If anything, we love them a little more.
The books I was given to learn about Down syndrome, only crushed me. It told of all the outer appearances, his almond-shaped eyes, his small low-set ears, and his hypotonia (low muscle tone). It told of all the medical challenges he could have. In today’s world parents are told their child is “IDD”, (intellectually and developmentally disabled).” In my day they told me he was “retarded” and that he would be so for the rest of his life. (Sniff)
But as Kay (Parker’s Mom) and Barb, Eric’s Mom, Carol (founder of the Hip Hop Homies) and I spoke, I could see the medical 3 students, were soaking in what we had to say. But it was when Parker, Eric, and David began to speak, I witnessed something even more powerful. I could see they were loving it.
As I was posting this picture, I couldn’t help but notice the man sitting at the back of the table. He is smiling and looking at Carol with her arm around David. Melted my heart.
Hip Hop Homies
The second time I saw this happen was when Carol’s Hip Homies performed at the Phoenix Mercury Basketball game on July 18, 2023. You would have thought these kids were famous with how loudly the fans cheered for them. And afterward, I saw how those same fans went out of their way to go up to some of the Homies and tell them how great they were.
National Down Syndrome Congress 51st Annual Convention
The third time I saw this happen was when Reyna, my husband, Curt, and I attended the NDSC Convention in Orlando, Florida on July 20 – 23rd. Make sure to mark your calendars for next year’s NDSC Convention. It will be here in Phoenix from July 25-28, 2024. I promise you will come away from that feeling so empowered!! And you will meet the greatest people there. I LOVED the two family dances we had there. But one little girl, Ava, stole my heart. She was so funny and shaking her bootie and making us all laugh. Then she came up to Reyna and told her she should do that with her. So my beloved friend, Reyna, tried to dance a little bit with her, but obviously, she wasn’t “shaking her bootie” well enough and Ava let her know. I wish I could insert the video I took of the two of them…you would die laughing.
If you are lucky, you will also meet David Tolleson who is a beloved friend of mine. He is the Vice President for Strategic Alliances for Global. Please email him and let him know you would like your child registered to be counted in the research they are currently working on. Their research has led to our kids living along with a higher quality of life than before. firstname.lastname@example.org
Another dear old friend who is a remarkable presenter is Dr. Brian Skotko the Director of the Down Syndrome Clinic at Massachusetts General and he, like David T, brings goodness to our world every single day. Soon Reyna will upload the ability for you to hear his lecture but please check out DSC2U.org I am so grateful for this good man who happens to have a little sister who has Down syndrome.
Sharing Good Grief
The last way I saw how our kids change the world was on July 27, 2023, when I hosted a “Sharing Good Grief” gathering in my home. Years ago, I attended a conference where my friend, Kris Holladay was a guest speaker. She was speaking about her nonprofit, S.O.F.T. Support organization for Trisomy’s 18 & 13. Soft – SOFT – Support Organization For Trisomy Kris dedicated her life to children like her daughter Kari, who had Trisomy 18. After Kari passed away, Kris taught me so much about how to respond when someone we love loses a child with (or without) Down syndrome. Even if you can’t find the words, just hugging them and telling them how very sorry you are for their loss is enough. Kris told me some well-meaning people hurt her when they would say things like, “Well, she’s in a better place.” I could see the look of hurt in Kris’ eyes when she said what she wanted to say to those people was, “Why, was I a bad mother?!”
While at that convention I spotted an exhibitor table that said, “Good Grief.” I mistakenly thought it had to do with Charlie Brown and Snoopy. Instead, I learned that those who sat at the table were mothers who had lost a child. I read something recently that touched me deeply. It said this…
“When you lose a child with Down syndrome. a mother’s heart is no longer her own. It runs and skips and giggles and grins, and crawls in her lap for a kiss on the chin, but where goes her heart, when that child is gone? Is it true what they say, that life goes on?”
Yes, life does go on. But it is never ever the same. But what I most loved about this recent meeting was listening to Betsy Hall (Nicholas’ mom), Dieter Kaufman and Jocelyn Blaschko (Brynlee’s parents), and Shawnie and Kevin Huff, (Braxton’s parents), as they shared about their children. Yes, there were some tears but even more there was joyful laughter as they shared the fun and amazing moments of their child’s life. I want you to know that at our recent Sharing Good Grief meeting, I learned something. I learned from those who came that even though they miss their child every single day, they also we able to share moments of laughter as they talked about their child. We will never forget these angel babies who blessed our lives.