What to Expect When the Unexpected Happens
Description
The wishes, hopes, and dreams of expectant parents are many.
Their baby having a lifelong disability usually is not one of them.
When that happens, it can be devastating for families.
The staff and volunteers at the Center for Family Involvement have family members with a disability. Some of us have disabilities. That lived experience makes a huge difference when providing emotional and informational support to people with disabilities and their families. We understand how complicated the mix of grief, joy, disappointment, and gratitude can be.
So does Heather Trammell. She's the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago.
She helps parents through the wide range of emotions that flood them after they learn of their child's diagnosis. Heather also sees time and time again, families coming out of the dense fog of grief bursting with pride and happiness.
In this two-part interview, Heather shares how her job has evolved with the rapidly changing media landscape and talks about how toxic the high-functioning/low-functioning mindset can be.
The Odyssey: Parenting. Caregiving. Disability.
The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.
TRANSCRIPT:
Erin Croyle
Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down's Syndrome in 2010. Now I work for the Center for Family Involvement at VCU's Partnership for People with Disabilities.
Erin Croyle
This podcast explores the triumphs and hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff, too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down's syndrome. And how the medical team broke the news to her is both shocking and heartbreaking.
Erin Croyle
After the dust settled, Heather became the director of Family Support at the Down's Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastically different families handle diagnoses. She also witnesses countless transformations from scared, sad and confused to happy, fulfilled and proud.
Erin Croyle
Heather's love for her work is palpable. She's the first one to tell you that she's a sucker for a changed life. Heather, I want to jump right in and have you tell us a bit about yourself. But I like to do this a little bit differently because I think a lot of us are one person before children and then another after.
Erin Croyle
And for us parents who have a child with a disability, that change is a lot more drastic in advocates like you. To me, it's like a superhero origin story, frankly. So can you tell me who you were before children and who you are now and how your daughter's transformed you?
Heather Trammell
Well, I wouldn't call myself a superstar or anything. Thank you so much for having me on the podcast. Erin, it's a pleasure to be with you. It's great to chat with you about any subject at all. So I had my first child when I was 35, so there was a lot of Heather before that. And I actually do believe that everything that came before that diagnosis informs that moment.
Heather Trammell
So the moment you hear your child has Down syndrome, that's that's a moment in time. But how you feel about that moment had everything to do with all the years before that. I grew up in a small town in Michigan, and two of the things that are significant about my younger years was that I was born with a cleft lip and cleft palate that was continually under construction.
Heather Trammell
Now these days, children with cleft lip and cleft palate have this space age remarkable surgery, and it's all done by the time they're in kindergarten. But mine went all the way through college, and so I was just kind of a work in progress, so to speak, as far as my face goes. And so I had to, you know, go to school with surgical scars, lips not applying the right way, nose not allowing the right way speech difficulties.
Heather Trammell
And that was really hard. That was hard. Kids are not always very forgiving about that kind of thing. Also, at the same time, I grew up with a bipolar parent who also struggled with her mental health, was sometimes compliant with medication therapy, sometimes not. And the times that were not were very difficult for us. So those two things, I think, are what came crashing to my mind when I heard that my unborn child was going to have Down's Syndrome.
Heather Trammell
Then we got that chip off, the ultrasound chip off the day before 911. And I thought September 10th, 2011 couldn't be the worst day of anybody's life. It certainly was the worst day of mine. And then September 11th happened, really, and the whole world was falling apart. I thought, you know, that is that one of the hardest things that's ever happened for me?
Heather Trammell
And now I am sure that the second half of my life is probably going to be as difficult as the first. I really had it in my mind that I was happily married. We were expecting our first child. It was all going to be great from now on because I had already checked the box on the hard stuff and I got through it and I grew from it.
Heather Trammell
Good. Let's just move on. But that was the first thing that came to my mind when we got that diagnosis. That was a prenatal diagnosis. It was pretty early. It was early enough to have amnio. So the noninvasive prenatal screenings were not terribly were either weren't available or they weren't terribly good back then. So if you're really wanting to know, then get an amnio.
Heather Trammell
And we felt like that was worth getting. So we got it. And I had in my recollection, I could be wrong here, but my recollection was I had asked my doctor not to share that news with me during the work day. He had called me with the ultrasound information on September 10th, during the work day, I had a very hard time keeping my brain together in the very busy Georgetown law firm where I worked.
Heather Trammell
And so I thought, Let's not do that again. Don't call me at the office. But either I did not tell him that or he forgot because he did call me with the amnio results at the office and I was speechless. Of course, breath taken away and he said, I'd like you to come to my office right away. I stumbled and said, Well, what about Thursday?
Heather Trammell
He said, Well, no, I mean, now I'll clear my calendar. Come right now. And I'm like, okay. So I took leave of my colleagues. I stomped my way back up the sidewalk the way I had just come down a half an hour earlier. And it was one of those beautiful October days where the sun is shining. It's not hot anymore.
Heather Trammell
You fall is starting to show. It was just gorgeous. And I thought to myself, How dare the sun be shining today? This is really this is not good. And then I got on the train, the subway, which in Washington, D.C., from the north part of Washington, D.C., down to Virginia, you have to pass by the Pentagon s
United States
