Hi my name is Beth Craver my husband out there is Bobby Craver and we have a two year old named Judah with Down syndrome. You may have noticed him gracing the Gala invite this year. I also have a debilitating fear of public speaking. I cry, shake and turn multiple shades of red. So if you see any of that going on tonight that’s why. But somehow I’m up here. I still can’t believe it but I am. And that is a testament to exactly how much my little boy has changed me. After Heather called me to ask me to speak, it took me twenty minutes to say yes to something I’ve been avoiding for 20 years. Judah has transformed me and Gigi’s has transformed me And That’s what I’m here to talk about tonight…
For those of you don’t know me …we did not know Judah was going to have Down syndrome, that is I never had the test. I was very encouraged to get it because of my advanced maternal age and honestly, we really debated it… but in the end, because I had lost my teaching job and had no insurance at the time ,we decided to disobey the doctors wishes and forego it. Here’s the thing though…for nine straight months I worried about Down syndrome. I was consumed by it. I was absolutely convinced my son would have Down syndrome. I was in a perpetual state of googling and those closest to me knew it was my biggest fear. I have learned since then that this is a thing. Many moms who did not get the test just knew anyway that their child was going to be born with Down syndrome. In fact, looking back, I think that on some level maybe I never did that test because I didn’t want to have to make the difficult decision the doctors wanted me to make about my child’s value.
So when Judah was born I was lucky enough to have a very good friend who is a nurse in the delivery room with me. She later recounted I how had the most terrifying look on my face when I asked her “is he okay?” She answered with the warmest and truest “yes.” and she was right but when I looked at my son and my husband looked at him, we instantly knew. We actually had some trouble convincing the doctors of what we already knew. The pain I felt is inexplicable. I can’t even describe how deep the ache was. That feeling of being in crisis…. Those of you who have had a baby with Down syndrome may know what I mean and those of you who love someone who had a baby with Down syndrome may understand, but it is tough to describe. I will never ever forget it. Most people say that they feel this way because they are grieving the loss of the baby they thought they were going to have. For me, this wasn’t the case. I expected my baby to have Down syndrome. It is the only baby I ever imagined. First off,I couldn’t actually believe my biggest fear came true. And also, I’m pretty self conscious, and I have areal need to be well liked, so what I feared most is that we wouldn’t be loved. I thought my life as I knew it was over. …that friends would disappear and that we would be made fun of. I thought people would think my baby was ugly and that we would be some sort of pity or joke
Well, let me tell you, there was a revolving door of love at our house when we came home from the hospital. Friends and family brought meals, and gifts, and wine and tears and hugs and laughs.
We just had a little baby 5 months ago named Augie and when he was born I said to Bobby, I don’t know how we did it back then? How did we entertain all those people while caring for a newborn and absorbing a diagnosis? But back then we needed it. I needed to feel that love then I needed my people. They dismantled my fears. They saved me…And I started to wonder if Down syndrome was the monster I made it out to be in my mind.
When Judah was just 20 days old, he was rushed in ambulance to the hospital with RSV. There was this medic and wish I got her name. She was so special to me. I remember her straddling the ambulance gurney looking at Judah the whole way. She kept whispering endearments to him like “you got this buddy” and “hang in there cutie” I remember being so perplexed. In fact I even said to her “do you know that he has Down syndrome?” She said she did and her eyes never left his. We remained in that hospital for 13 days….through Judah’s 1 month birthday , through Christmas Eve and Christmas… and we finally went home New Years Eve. The whole time the doctors and nurses worked tirelessly to save my baby,…some missed their very own family Christmas celebrations to be with my son. Again I was just so confused. I couldn’t quite understand because everything these doctors and nurses were doing was so out of line with how doctors looked at my child’s worth just 9 months earlier. And Again, I started to second guess what I thought I knew about Down syndrome.
When we left that hospital we were pretty much quarantined to our house during the winter months. Our very first outing was to to The mall on March 21st 2015. World Down syndrome day. I had heard of Gigi’s through a mutual friend and knew I wanted to be a part of this day to truly heal. I was terrified. I didn’t know what to expect. I guess I envisioned a support group of sorts. I pictured a lot of people asking about my baby and me telling my story. I pictured crying and strangers telling me how sorry they were. And so,I brought back up. I rallied all of my friends and family to support me. As we walked to the event I was so completely scared but I didn’t need to be. There was no sadness there. Everyone was smiling and laughing and happy balloons bopped all over the place. There was music and dancing and a boy with Down syndrome was raffling off prizes. The only time people asked about my baby was if they could hold him and they did. It was inspiration at its finest and Gigi’s will always be that defining moment when I realized that I was misinformed and that I was a part of something very special.
Nobody told me about all of the love . Nobody mentioned the good parts about this other world…where people take care of each other and believe in acceptance and kindness…And don’t even get me started about the person that Judah is. He makes us laugh and brings us joy every day. He amazes us every day. That’s a whole other speech in itself. But No one tells you about all of these parts when you are a scared mom who decides not to do the test. I was so gravely wrong. I did not believe there were this many people in the world that cared about Down syndrome, let alone people in this room. There is so much good….but there are also so many people out there who think the way I thought. I want to fix all of the people who believe what I believed.
So, I will continue to stand with Gigi’s shaking and sweating and turning different shades of red until everyone in the world believes in people like Judah the way all of you do…thank you for that…. and thank you for having me tonight. Good night and God bless.