Last night I went to our Down syndrome organization’s annual charity gala. It was a fabulous night filled with fabulous people. At one point, though, I almost had to step outside for a moment. To introduce our Fund a Need portion of the event, a mother gave a speech that nearly brought me to tears (probably along with the rest of the audience).
This year’s Fund a Need was our New Parent Support program. This is exactly what it sounds like: Our director of new parent support, Nancy, reaches out to new families who either have welcomed a child with Down syndrome or are expecting a baby with Down syndrome. She visits them in the hospital, at their home, or at our office—their choice. She invites them to attend our Early Connections support group so they can meet other families with babies and young children with Down syndrome. She throws them a lifeline and safety net at a very tender time. I remember that time myself, very well. Nancy wasn’t on board then—Martha, the founder of the Down Syndrome Connection, was. I talked to her on the phone, and she was so supportive and understanding and encouraging. And then I came into the office with a tiny newborn Sam in person, and I immediately felt like I had found a second home.
And somehow, that tenderness doesn’t go away. That feeling of being so scared…but then so accepted and supported, too. It’s a whole range of emotions wrapped up in one ball—some good, some scary, but all powerful.
So when the young mother of an infant girl with Down syndrome got up and spoke about the New Parent Support program, which she reached out to when she got a prenatal diagnosis, it tugged at my heart. And when she said, with her voice breaking, that the doctor who called to deliver the prenatal test results over the phone said “I’m sorry…,” my heart cracked a little bit. Because, like me, that mother hadn’t gotten a positive view of Down syndrome at first. She had only gotten the negative, and it had hurt her…just as it had hurt me when it happened to me. It’s a bruise on my heart that never really goes away and remains tender when poked, and it’s why I do what I do. By doing medical outreach, I get our organization’s name and contact information into the hands of medical providers so they can direct families receiving a diagnosis to Nancy, who can then welcome them into the organization and provide them whatever support they need.
And I got to thinking about that “I’m sorry.” Another friend in the community recently commented that her husband got the “I’m sorry” remark about their son the other day. And I thought, what a tough one that is. What’s our immediate response when we hear someone we care about is facing a challenging situation? “I’m sorry.” Because you are sorry; you don’t want to see someone you care about struggling. So I think it’s a natural response, but on the other hand, I want to say, “Don’t be sorry. Because I’m not.”
How could I be? How could I be sorry that I get to raise the most amazing little guy? A child who greets every day with a huge smile and a cheerful “Hiiiiiii!!!!” when I come in his room?
How could I be sorry that I get to witness perseverance at its best? A child who works so very, very hard to accomplish things, and then is ever so proud when he does? Just this morning, we reached the major milestone of him being able to pull up his pants on his own. Sound like something tiny? Yes, but it was huge. It’s years in the making, and it’s exciting! He was incredibly proud of himself, with a huge smile on his face to match mine!
How could I be sorry that I get to raise a little boy who has prompted so many people to say to me, “He has changed my life”? Four short years he’s been here, and he’s already changing lives. He gives people a glimpse into a world that they might not have gotten to be a part of if it weren’t for him.
How could I be sorry to get to watch an incredible brotherly bond between him and Theo? Their adoration is absolutely mutual, and it is probably the thing that makes me happiest in life—watching my two boys playing together and supporting one another.
How could I be sorry to live with a child who embraces every last bit of life? Who is downright joyful about the simple act of loading up in my Ergo back-carrier and walking his brother to school every morning? “Pouch!” he says to me, handing me the Ergo to put on, and then he stands there, literally bouncing in excitement, while I strap on the Ergo and pick him up to swing him into it.
And how could I be sorry when his tantrums remind me how very, very typical our life really is? It’s a funny thing to appreciate tantrums, but it reminds me that he’s very much a four-year-old boy, before anything else.
How could I be sorry, too, when I get to meet so many other excellent people who share his chromosomal anomaly? Like Eli, who identifies himself as a rocker and self-advocate, and who is instrumental in the Spread the Word to End the Word campaign, encouraging local students to pledge not to use three words: retard, retarded, and Trump. (That last one was his recent addition. His mother is slightly mortified about him politicizing, but I for one was delighted to see that he is now a registered voter and can cast his own vote to help end the T word. 😉 ) And Marissa, another self-advocate, a poised and lovely young woman who works our local events and is such a positive face for our organization. And Adam, who just turned 21 and couldn’t wait to buy his first beer! And Joseph, who calmly announced during his short speech at the Gala that his favorite part of working for our organization is payday! Smart man, Joseph…that’s my favorite day, too. And Blair, who loves to talk sports with visitors to our office and calmly offers his condolences to families who do not have children with Down syndrome.
There’s no sorry about it—my life is better for having Sam in it, and it’s better for knowing a huge group of people who I never would have met if it were not for having Sam. I am, for sure, one of the lucky ones.