Dearest Sharing Families,
As I look back at all the people, I have come to know because of David, I feel so grateful. I love them and I love their families. One of my favorite things over the years is to have been able to watch the impact a child with Down syndrome (or any disability) has on his or her parents and siblings. When a child grows up with a sibling who has special needs, something wonderful happens. They grow up to be amazing people who have the ability to view the world through a different lens. And they are typically the first to stand up for others when they see injustice.
I am not saying your child with DS won’t be like a typical kid who at times will get into things, bug their brother or sister. That is all a part of being a child. But our children with DS bring a gift to them that will reveal itself to you when your family is grown. I have seen it in my own family and in the lives of others, like my dear friends, Dave, and Lisa Case. They are the proud parents of Andrew, who is now age 27. The picture above was taken when Callie won her softball tournament and Andrew rushed to her and jumped in her arms. If there ever was a picture to show the incredible bond between siblings, it is this one. Yet, I know even if Callie’s team had not won, this would have been his response.
Andrew is her biggest cheerleader! When Callie left for college, on a softball scholarship no less, it was so hard for Andrew. He missed his little sister with all his heart. But nothing as silly as hundreds of miles of being separated was going to stop Callie from being there for her brother. She calls him frequently and anytime the family wants a family photo, even if Callie is not there, guess who makes sure she is in the picture?! 😊 I remember Dave telling me of an incident that happened when Callie was about 15-years-old. Baseball is a big deal to Callie and her family. Her Dad, Dave, was as young boy, the ‘bat boy’ for the Diamond backs. His family is as hooked on baseball as he is.
One day, when their family was at one of Callie’ games, she (and everyone else) saw and heard how the other team’s coach was reacting regarding how the game was going. The other team’s coach was upset and “hot under the collar” would be a good description of how he was acting. In his anger, he was chewing out a player, but he made the mistake of using the word “retard” as he berated that player. As soon as Callie heard that, she marched right over to that coach to give him a piece of her mind. Dave saw this all unfold and was not sure how it would go. Callie is as competitive as her father and wants to win, but she also, like her dad, has a high standard of how they treat others. She knows the difference between right and wrong and treating his player like that was just plain wrong, so Dave just stood back and watched was happened.
Callie let that man know, in no uncertain terms, that how he had acted was inappropriate. She told him how wrong it was to be so demeaning and to use the world “retard” to emphasize his point. I only wish I could have been there to see the on that man’s face when Callie, a 15-year-old girl, called him out. Thank you, Callie. And yes, Callie has always been one of those people who stands up for others. “Go Callie!”
I met Callie’s mom, Lisa, in 1997, when Andrew, who has Down syndrome, was born. I had been serving as a volunteer for an organization called, “Pilot Parents.” Since David was about 4 months old, I loved serving in that capacity and I love the premise behind it. It was created by mothers who have a child with a disability to help newly diagnosed families. The author, C.S. Lewis, says it best, “True friendship begins when one person looks to another and says, What? You too?!”
Pilot Parents have always been committed to providing encouragement and support to families who have children with special needs.
Their analogy is this: It is as if there is a big ship out in the rough and rocky waters of the ocean and the captain of that ship is in trouble as he tries to navigate through those difficult waters. That is when a small “Pilot ship” leaves the calm, safe waters of the harbor and goes to connect to that larger vessel. That Pilot ship would then gently guide that larger vessel back into the calm, safe waters of the harbor. He would leave that bigger ship and her captain there for a time.
Then, in due time, that smaller Pilot ship would once again connect to the bigger vessel to guide her back out into the rough waters of the ocean. Nothing had changed. The waters are still rough and rocky and the course they must go is still uncharted. The only difference was, now the captain of that ship feels in control.
That is what happened to me in 1983 a dear woman in Salt Lake City, Utah, named Pat Christensen was my Pilot Parent and reached out to me.
After the referral for Lisa was sent to Pilot Parents, they assigned someone else to go and visit her. But after the visit, that person felt she had failed because Lisa was so sad. That is when Betsy Trombino called asking if I would be willing to go. In a heartbeat, I said yes.
I rang the bell and as soon as she opened the door, Lisa greeting me warmly, but I felt two feelings. The first one was I could immediately feel the powerful sadness that surrounded her. What Lisa did not know was I understood that hurt because not that may years before I was that broken-hearted mother, struggling to come to terms with having a baby with Down syndrome.
The other feeling I felt was when I walked over to the couch and saw her adorable son, Andrew. He was the cutest thing ever, and I couldn’t resist picking him up. When I did, I said, “Oh, Lisa, he’s beautiful!” and he was!
I loved Lisa the moment I met her. I felt connected to her. I loved how she was willing to be so open and vulnerable with me as we talked about things that felt so hard.
Towards the end of my visit, I asked her a specific question, and she replied in a very blunt and truthful way. I was grateful for her candor. I thought about how I felt when David was born and again, I understood.
Back when David was born, if someone could have told me they had a magic wand they could give me and all I would have to do was wave it to take away his Down syndrome and his medical problems, I would have done it in a heartbeat!
As I listened to her, the words of Steven Covey came to my mind, “Feeling are not bad or good, they just are.” I wanted to validate what Lisa was saying to me so I responded by saying, “Of course, you feel that way. But one year from today, I am going to call and ask you that same question, and I will be curious to hear your reply.”
This was back when I ran my Sharing nonprofit out of my home, and I was in the kitchen when my home phone rang. This was before we had caller ID, so I didn’t know who it was. But as soon as I picked up the receiver to answer the phone, I knew it was Lisa. I could hear the excitement in her voice when she exclaimed, “Gina, Gina! Guess what?! Andrew having Down syndrome is not the worst thing in the whole wide world!? “
A big smile came to my face and the sweetest feeling filled my heart. I knew she was beginning to understand. I replied by saying, “Lisa, I know that, but how do you know that?” She went to tell me she had just come from Andrew’s physical therapy appointment. She said she saw a sweet little boy there who was in a wheelchair. In a tone of compassion and also realization, she said, “Gina that sweet little boy will never be able to walk, but Andrew will.”
I replied, “Yes, he will!” I was so happy to hear how happy she felt. But I was smart enough not to tell her the thoughts that were going through my mind at that moment. I knew children with Down syndrome have developmental delays, and I didn’t know if my son would ever walk. I continually prayed for him, but when he took his first steps at age 2 ½, I was on cloud nine. I knew my prayers had been answered.
But then one day he shocked me when he took off running as fast as he could, and then he laughed at me when he saw me desperately to catch him! Yes, I knew that was a conversation for another day. 😊
Lisa and Dave have been my dearest friends ever since that first day we met. When Andrew was still little, Dave agreed to serve on my Board of Directors, and he has done for over 20 years. He is the kind of person who will do anything needed to help. He is one of the people who have made our annual Sharing Down Syndrome Walk so successful every year. He also helps families know how to apply for guardianship. He works for the Phoenix Suns, and he is the one, who over the years has been able to get Phoenix Sun’s Gorilla to come and Celebrate Down Syndrome with us at those events.
Lisa has always also been equally involved. I will never forget the year we asked her to oversee our Silent Auction at our Sharing Walk. We knew she was expecting her second baby (Callie) but she was not due until after the walk so we thought all would all work out. Well, you know babies, they do not always come when we think they will.
And yes, you guessed it, Callie came early, but that did not stop our dedicated Lisa! I can still see, in my mind’s eye, as she stood in the Silent Auction tent with her 11-day-old newborn baby girl. She snuggled Callie in some warm blankets and tucked her in her infant seat, beneath the tables. No one even knew, and that angel baby slept the whole time!
Lisa also coordinated monthly gatherings where mothers would gather for coffee for a bite to eat at a local restaurant as they shared stories about their children. Those meetings still go on each month, and those friendships have lasted a lifetime. There are a million things I wish I had the space to tell you about this remarkable family. But one last thing I wanted to share was something Dave posted some years ago on his social media.
With much love,
David’s Mom
Feel free to contact Gina at gina@sharingds.org or text her at 602-881-3310