Dearest Beloved Friends,
As I began writing this to you, it is Election Day for our great country. Today is special to me for three reasons, it’s the birthday of a sweet grandson (Benny) because we as citizens get to vote about who we want for President, and because my dear friend, Gina Barreras and her sweet daughter Alyssa were interviewed for Sonoran Living on ABC 15 to be interviewed by the host, Terri Ouellotte. While we were there, she asked us to tell her about how we help families who have a new baby with Down syndrome.
Terri Ouellotte, Alyssa & Gina Barreras
I met Gina B. 22 years ago, shortly after her daughter, Alyssa, was born. I invited her to attend our next parent meeting as we had invited Karen Gaffney, a young woman with Down syndrome who had the experience of swimming the English Channel, to speak to us.
Alyssa, when I met her and Alyssa today.
So many parents attended that night and were thrilled to listen as she spoke to them.
Karen was delighted to listen to as she shared so much about her life. This is how Wikipedia describes her … Karen Gaffney was born in 1977. She became the first person with Down syndrome to complete a relay swim of the English Channel in 2001.] Her 2007 swim across the nine-mile span of Lake Tahoe became the subject of the documentary Crossing Tahoe: A Swimmer’s Dream. In 2009, she swam across Boston Harbor, a distance of five miles, to celebrate Down Syndrome Month in Massachusetts. She has also earned two gold medals from the Special Olympics and completed 16 swims across San Francisco Bay, including the Escape from Alcatraz triathlon. In 2010, she received the Global Down Syndrome Quincy Jones Exceptional Advocacy Award.
Karen Gaffney is seated next to Andy Fletcher, proud dad of Ethan.
Karen Gaffney became the first living person with Down syndrome to receive an honorary doctorate degree when she received an honorary Doctor of Human Letters degree from the University of Portland on May 5, 2013, for her work in raising awareness regarding the abilities of people who have Down syndrome.
Karen Gaffney graduated from St. Mary’s Academy high school in Portland in 1997, and in 2001 she graduated from Portland Community College with an Associate of Science degree and a teacher’s aide certificate.
Years ago, my oldest son, Seth, gave me the playful nickname of, “Mamaratzzi” because I take so many pictures, but I love what how those many photos remind me of all I have learned from others over these past 34 years.
The person who helped me the most when my son David was born was my dear friend, Kris Holladay, who had a sweet daughter, Kari, who had the profound disability of trisomy 18. Kris once told me that Kari was her “finest teacher.” I understand that now as my own son, David continues to teach me lessons of the heart.
As I was looking for a picture of Karen to share with you, I came across a picture I took of a little boy named Koysta who was born in Russia, He is in the arms of his adopted mother, Stacy, with his birth mother, Irina looking at him. Both mothers have the biggest smiled on their faces.
It was Irina’s friend, an American social worker who was married to a Russina man, who convinced her she needed to place her baby up for adopting. Irina did not want to. She loved her son with all her heart. But she knew the kind of life he would have if he stayed in Russia. There are rules there, including the one that states all children with disabilities must be sent to live in what she called, “House of Child.” (Similar, I am guessing, to our state-run institutions that were the norm when I was growing up.) It has been said, “A coincidence is God’s way of remaining anonymous.” I know that it was not just by chance that her friend sent the initial email to an American run parent support organization for children with Down syndrome, including mine.
The morning it came through, I was in a hurry and needed to leave. But something prompted me to open and read that email. I had not done any adoptions at the time, but I felt for the sweet little boy I saw in the picture. He was sitting in is crib with a pet cat sitting next to him. My heart went out to that little one.
The email spoke of the urgency of him needed to be adopted. I didn’t know anyone who wanted to adopt a child with Down syndrome, but I decided to hurry and forward it to my mailing list, asking if any of them knew of a family who might be interested.
To my surprise, no sooner had I sent that email when my phone rang. It was my friend, Stacy, whom I met when she was expecting her little boy, Liam.
Whenever nurses or doctors tell me the mother or father is sad, I want to tell them, “No fooling! You have just told them the hardest news a parent can hear.” I knew that in time, after our hearts heal, and we come to terms with what it means to us individually to be the parent of a child with a disability, we do well. But at first, it feels heartbreaking.
That was how it was for Stacy. But she was a wonderful mother to her two older children, and I knew she after the shock wore off, she would be a wonderful mother to her little boy as well. Steven Covey says, “Feelings are not bad or good, they just are.” I know parents need time to be okay with having a child with a disability. But I know, too, often those who hurt the most are the ones who become incredible advocates for their child. I had a feeling that would happen to Stacy as well.
She wanted to know more, so I invited her to attend the monthly parent meeting I was hosting that month. My guest speaker was going to present about early intervention and how therapies like PT, OT, and Speech help our children hit their developmental milestones more quickly.
As my guest speaker began to talk about the subject, I could see it felt a little too much for dear Stacy. Her emotions were overwhelming, and she suddenly got up and ran out the door to leave the room. My heart went out to her. But before I could go to help her, I saw five other mothers go to her aide. My heart was filled with gratitude for those mothers.
I too went to help her, but what I saw melted my heart. Stacy was sitting in a chair, and she was beside herself. As tears fell from her eyes, I felt so grateful to see those mothers surrounding her, as if they were mother hens covering her with their wings of love to protect her.
When I got to where she was sitting, I knelt down beside her and said, “Stacy, you don’t know it yet, but you have just joined the greatest mother’s group in the whole wide world!”
Without missing a beat, she tearfully protested, “But I don’t want to belong to your club!” I had to smile when I truthfully admitted, “Well, none of us did at first, but soon you will love it.”
But I also knew something Stacy didn’t know, that even with as hard as it was to hear the diagnosis, I knew after her baby was born, and she had a chance to catch her breath, she would fall in love with him, and she did.
I had barely sent that email when my phone rang. Imagine my surprise when the voice on the other end was Stacy. She said that as soon as she read the email, she just knew like that little boy was supposed to be part of their family.
She reached out to the social worker and on May 13, 2002, Stacy called me to tell me Jim had agreed to move forward with the adoption. Soon they were on a plane heading to Russia to meet their little boy. There is so much more to this beautiful story, but I will have to tell you that at another time.
Koysta’s mom, Irina, had a visa that allowed her to come to America for three visits, and she used all three to visit Koysta in his new home. As you look at that picture of the three of them, you can just see the love that was in that room.
During one of Irina’s visits, it was when we were hosting one of our annual Sharing Down Syndrome Walks. A few days before our Walk, she stopped by my home and noticed the flagpole in my front yard that held a large American flag.
She pointed up to the flag as it was blowing in the breeze, and as she did, she told me how much she loved America. (And yes, I do have a picture of that moment, but I just couldn’t find it.)
The day of the Sharing Down Syndrome Walk, I invited her up on stage to say a few words. She again spoke about how much she loved America, and she ended her words by saying, “America is so wonderful! They even have a national holiday to Celebrate Down Syndrome.” (I never had the heart to tell her it is not actually a national holiday.)
As I visited with her privately, it was obvious to me how much she loved her homeland of Russia, but she hated the government corruption. She explained how people deal with those problems that a corrupt government brings. She said, “In Russia, laws are like puddles, the little ones you step over and the big ones you walk around.”
She used the example of wanting to have Koysta baptized in the Catholic Church, so they paid bribery money to the Priest to baptize him.
She also told me that due to Koysta having Down syndrome he was required by law to be sent to “House of Child”, where all children with disabilities were sent. But she didn’t want him to go there.
So they paid money as a bribe so that even though his name was listed on their records, Koysta never actually spent even one night there, away from his mother and father.
Stacy told me when Koysta and Liam were little, she would take them out and people would often ask if they were twins. Stacy loved very nonchalantly saying, “No, they were born ten weeks apart” and then seeing the confused look on those strangers faces.
When those two cute brothers were teenagers, I ran into them at an activity where I had taken my son David, and I was so happy to see them! I could tell both boys were doing well.
Koysta, Gina and Liam
Ever since the war began where Russia invaded Ukraine, my heart has hurt for both countries. I know that there are wonderful people like Irina and her family who live in Russia, and I wish I could tell you they are okay. The truth is, I do not know. But what I do know is that at this Thanksgiving time, if you ask me what I am thankful for it, one thing I am grateful for are families who are lucky enough to love someone with Down syndrome. And something else I am thankful for is that we live I am thankful in a country where we are free to choose, and I choose to believe that my country has a National Holiday to celebrate people with Down syndrome. Xoxo
God bless you, dear friends. I hope to see you at our Christmas party on December 14, 2024 and again at our 25th annual Sharing Down Syndrome Walk that will be held on March 29, 2025 at Tempe Diablo Stadium. And just fyi, I have decided that after 34 years, it is time for me to step down and let someone else step up so they can know what it feels like to love our families as much as I love you.
Now, you can run, but you can’t hide. I am always here for you, so if you need me, just call or text at 602-881-3310. Knowing you dear families has been one of the greatest blessings in my life.
With all my love,
David’s Mom
(aka Gina Johnson)