Last night, I was honored to speak at the Down Syndrome Connection of the Bay Area’s annual Gala for Giving. I was speaking to the 250 attendees about our family’s experience with Sam’s diagnosis and how it inspired me to accept the position as Medical Outreach Alliance coordinator with DSCBA. Because the Medical Outreach Alliance is DSCBA’s newest venture, it was selected to be their Fund-a-Need piece for the evening, which meant that it was hoped my speech would inspire people to donate to DSCBA to help fund the Alliance.
This is a topic and position I feel so strongly about, and I was really touched to be asked to speak. Luckily, we were so busy moving earlier in the week, I didn’t have time to be nervous until about five minutes before my speech. Then I spent that last five minutes before the speech feeling as if I might throw up. 😉
But I’m pleased to report that it went very well. Better than very well, actually. The response really touched my heart—I had so many people tell me how much the enjoyed it and appreciated me sharing. While I spoke, a slideshow of pictures of Sam played on a projection screen behind me, so of course I had a lot of people comment about Sam, too—that kid always draws a response! But one of the particularly touching comments I got was from the head of marketing and PR for Chevron’s North American division. Chevron was a corporate sponsor for the event, and we were sitting at a VIP table with the Chevron folks. The man from Chevron approached me after the speech, told me he loved it, and told me Sam was amazing. But then he went a step further: “Your older son, too,” he said. “He is an incredible little boy. You can see in those pictures the love he has for his brother. It’s so evident.” I was really touched that this man recognized that, because it’s true—as much as Theo challenges us, I can never fault his utter devotion to his brother. It is the piece of him I adore the most, and it was really nice to have this man go out of his way to comment on that—it meant a lot to me.
I’m told the Fund-a-Need part of the evening was very successful and that we raised a lot of money for the Medical Outreach Alliance. I’m so pleased about that! First, it obviously means I still have a job. 😉 But more importantly, it means we can continue doing outreach to medical professionals and new parents, and I feel so strongly that this is crucial.
Delivering that speech is one of the high points of my professional life. I wasn’t joking when I opened by telling the audience that I nearly failed speech in high school—I was a pathetically bad public speaker when I was younger! I was painfully shy and hated getting up in front of a group. But I’ve gotten more comfortable with it over the years (kind of necessary when you teach!), and honestly, it was a huge honor for me to get to share with this group. The feedback I got warmed my heart, and I feel so lucky to have gotten to share our message.
So without further ado, here’s a written copy of my speech. My mom says she wishes she could’ve been a fly on the wall, so I’m publishing it here for her to read. If I can get the Sam slideshow to load into YouTube, I’ll also include a link to the video. You’ve probably seen all of the Sam pictures included at some time or another, but it’s kind of fun to see them all together.
I’m here to talk to you tonight about our Medical Outreach Alliance, which I’m the coordinator for. But so you understand the program and what I do and why I do it, I want to tell you a little bit about the person who inspires me—my son, Sam.
Sam’s birth was eventful, to say the least—fetal distress and an emergency C-section. So when I heard him cry, I was overjoyed, and I couldn’t wait to see him up close. But my baby wasn’t the first person I saw close up. That was a woman in scrubs. I have no idea who she was—I don’t remember her introducing herself. I assume she was a neonatologist, but I honestly couldn’t tell you. What I do remember—what sticks with me now—is her abrupt demeanor as she came up to me, all alone as my husband stood across the room, talking to a nurse, and announced, “I think your baby may have Down syndrome. Are you certain you still want to have your tubes tied?”
I was confused, because I hadn’t expected Down syndrome—but more than that, I was angry. The woman’s tone and delivery of the news suggested, “Hey, this baby isn’t what you wanted. Maybe you’d like to try again for another??” My heart broke in that moment. I hadn’t even seen my son yet, and already he was being judged.
I felt so helpless. I was literally strapped to an operating table, with my insides still cut wide open, and my baby son was across the room. I couldn’t cuddle him, I couldn’t hold him and protect him from the seemingly cruel world I had just brought him into. I was devastated by that. Not by the Down syndrome—that was a total shock, but all I could think was, “He’s alive. Half an hour ago, I wasn’t even sure he’d be born alive.”
I sent my husband off with Sam while his health was checked out. That took an agonizing couple of hours, during which time they stitched me up and wheeled me into recovery. In recovery, I sat there with silent tears streaming down my face, Googling everything I could about Down syndrome on my phone. (And we all know what a dangerous game that is, right?)
No one said anything to me. Nurses came in and out of the recovery room, but no one talked to me. I sat and silently cried and watched the clock endlessly ticking, waiting and wondering. Was my baby okay? What was going on? And could anyone just come talk to me? It was the middle of the night and not particularly busy as far as I could tell, but people just avoided me.
The awkwardness didn’t end there. Later that day, a nurse came into my room and cheerfully told me, “Oh, honey, don’t worry—you know, people with Down syndrome can live to be 25 years old now!” I immediately burst into tears, thinking I was going to outlive my son. Of course, we all know that this isn’t correct information—most people with Down syndrome can live long and healthy lives. But at the time, cradling my hours-old newborn, I had no idea—and I was heartbroken.
Two weeks later, I met with a geneticist, which basically consisted of him telling me everything my son would never be able to do. It was one of the most depressing hours I’ve spent, and I think the coup de grace was when he said, “I know how hard it is not to have the perfect baby.” I replied, “Don’t ever tell a mother her baby isn’t perfect. Sam is perfect…in his own unique way.”
That was the moment when I knew that I wanted to help change perceptions in the medical community. At that moment I didn’t know how, but I knew I wanted to do something to help change things, so that other parents didn’t have to have these same types of experiences.
Because the thing is, I’m not alone in having this type of experience. One mother was told by a medical resident that her son’s Down syndrome was “just bad luck.” Another doctor delivered the news to a mother and father in a very somber, depressed tone…and then finished by saying, “But you’ll love him anyway.” Yet another mother, who received a prenatal diagnosis, asked if she could be connected with a local group and/or some local families who have children with Down syndrome and was told that no such thing was available, even though the local group had actually been established for more than thirty years! Instead, she was told that she should join a support group for parents who had terminated babies with Down syndrome—despite the fact that she and her husband told the doctor they would not terminate.
There are a couple of common threads here. One is that very few parents who receive a diagnosis of Down syndrome for their child hear the words that every parent should hear upon welcoming their baby into the world: Congratulations. Because everyone here tonight is in the know—we’re all well aware that a new baby is cause for congratulations and rejoicing, and it doesn’t matter what the chromosome count is. A baby is a miracle and should be welcomed with open arms and joy, not with somber tones, sideways whispers, and pronouncements of everything that could go wrong.
The other common thread is that as depressing as these stories are, none of these people in the medical community meant any harm. None of them spoke with malice. The nurse who made me cry by suggesting that my son would only live to be 25 was trying to be helpful, not hurtful.
The problem is a lack of knowledge and understanding of what Down syndrome is and what progress has been made in it. That data about life spans of 25 years is simply outdated information—like much of the information in the medical community regarding Down syndrome. The geneticist who told me my son would never be able to problem-solve clearly hasn’t had much contact with people with Down syndrome, because we all know they are wicked-clever and can problem-solve with the best of them!
If the problem is outdated information and knowledge, the solution is to get updated, correct information into people’s hands and minds. And it’s not enough to just mail out a packet of information and hope that people read it. So that’s what the Medical Outreach Alliance was formed to address—we want to reach the medical community and help them understand all of the potential for people with Down syndrome, and the fact that the birth of a child with Down syndrome is something to be celebrated as much as the birth of any child. We want to give medical professionals the tools and resources they need to help parents understand Down syndrome—both its challenges and its beautiful potential.
Our goals are far-reaching. We want to reach parents who are receiving a birth diagnosis or a prenatal diagnosis—and the medical professionals who are working with them. But we also want to reach pediatricians, because there is a lack of current, updated information for pediatricians as well.
The Medical Outreach Alliance was formally launched this year, but in just a few months we’ve made a lot of progress. We’ve reached out to the 39 area hospitals that have birthing units, and we’ve gotten our updated materials into the hands of many of them by meeting face to face with social workers at the hospitals as our first point of contact. We’re building strong relationships with these social workers so that they will see us as a go-to resource when their hospital welcomes a new baby with Down syndrome.
We’re currently developing a training seminar that we hope to launch this fall. We’ll be offering this training to nurses at the area hospitals, as well as social workers. We’ve expanded our gift basket program and delivered a number of baskets to families welcoming a new baby with Down syndrome, and we hope to continue to reach more families that way. We’re also working on a parent-mentor training that we will deliver to parents of children with Down syndrome who want to help connect with new families in the role of a mentor. We hope to be able to match up mentors with new families based on similarities—for example, if a new baby is born with a heart issue, we will match up the new family with a parent mentor whose child has successfully come through heart surgery.
Our next stage is to reach out to OB/GYNs, genetic counselors, and others in the medical community who may be delivering prenatal diagnoses. It’s important to us that the families receiving a prenatal diagnosis have access to unbiased, updated information when they receive the news about their unborn child.
And once we’ve reached those two critical areas, we’d like to reach out to pediatricians and help them understand the nuances of caring for a child with Down syndrome.
The bottom line is, we want to establish an alliance with the medical community and be a resource for them and for the families they serve. We don’t want them to have to deliver news without updated information and create an awkward situation for both the medical professionals and the new family. We believe that with our help, the birth of a child with Down syndrome can be celebrated and a positive experience for all involved. Parents can get that sincere “congratulations” that they deserve when they have a child.
And it is an occasion for celebration, isn’t it? Look around you at these people here with Down syndrome—how much less would our lives be without them in it? What beauty we would be missing out on without them! When I think about my life with Sam, I realize it’s true—this is the best club I never knew I wanted to join. When I was told in somber tones about my son’s diagnosis, there was no way I could’ve predicted how much fuller my life would be with Sam in it. At age three, he is a beautiful little force of nature who enchants everyone who meets him. Is he “always happy”? Heavens no—he’s three, and if you don’t have his bacon ready when he wants it, you will pay! But there is a spirit about him that is just beyond endearing—a warmth and social awareness that glows.
People talk about the limits those with intellectual disabilities will have, but what they don’t tell you is that those challenges make every single victory that much sweeter. Every first tentative step, so hard fought when you’re working with a child with low muscle tone…every new word, so carefully articulated in a child who struggles with speech…every milestone achieved…later, but oh so sweet when it is met. These are the things that no pronouncement about challenges and disability can tell you. Parents receiving that first diagnosis need to know that there’s beauty and hope in the future. It’s not all just challenges—it’s hard work, perseverance, and so, so much reward.
I want to thank you all for coming tonight and for supporting the Down Syndrome Connection—you all know what wonderful services and support we provide! But on a more personal level, I want to thank you for your support because it enables us to continue the Medical Outreach Alliance, which I believe in so strongly. I’ve done a lot of jobs in my life, and I’ve enjoyed many of them…but this is the job that I feel most passionate and proud of. I feel honored to be able to help serve our Down syndrome community and to help other parents have a positive diagnosis experience. So thank you, from the bottom of my heart, for supporting Down Syndrome Connection and this cause.