Tamara Taggart: Two Conversations That Changed My Life (Transcript)

It was unexpected and we were upset, because we weren’t expecting it. But it was the tone of that first conversation that really hinted at all the conversations to come about our son. And in that conversation with that first doctor, we heard sadness, and it was a tone of really just somebody that felt bad for us, that they were telling us this news. And in that tone of sadness, the doctor even said to us, “I’m sorry to tell you”, we realized, you know, we’re not sorry that we have a beautiful baby boy. This is a beautiful baby boy and we’re thrilled. We weren’t expecting him to have an extra chromosome but he does and we still love him.

But that first conversation with that first doctor was really the first of many conversations to come. And Beckett is seven now. So I have a lot of experience and my husband has a lot of experience in negative conversations about who we think is our perfect son.

So as we moved forward and saw doctor after doctor after doctor after doctor, we heard more negative things about our son. We heard all the things that our son wouldn’t do and couldn’t do and won’t do. We heard how Beckett had a greater chance of having leukemia. We heard about Beckett having a greater chance of Alzheimer’s when he got older. We heard that Beckett wouldn’t walk when he was supposed to walk and he wouldn’t talk when he’s supposed to talk. And he might not go to a regular school.

We heard that — and it was one of the worst conversations I ever had – somebody, a medical professional told me that, because I was really upset and worried about Beckett going to school when he was that big, that’s what I was worrying about. I was worrying about Beckett going to school and how he would be treated. And if he would be treated as a normal child. And that person told me that, yeah, it’s a true worry. People with Down syndrome are lonely because nobody ever wants to be their best friend. And it’s a pretty horrible thing to say to a new parent. It’s really a horrible thing to say to any parent about their child. It’s a horrible thing to say to anybody about anybody really.

My husband and I were concerned when Beckett was — this is him when he was one — we were concerned because Beckett wasn’t eating very much and he’s like a really skinny guy. And so we went to the doctor and we said, you know, we’re a little worried; Beckett’s pretty skinny and he’s not eating very much. And the doctor said to us, oh you don’t have to worry about him not eating very much. He has a lifetime of being overweight ahead of him — exactly how I felt and how my husband felt.

And so as you working in stereotypes about people and that’s what you are feeding — medical professionals are feeding to parents of children who they think are perfect. And sometimes all they can see is the science and they don’t see the potential that I see in my son.

I have had doctors use the word retarded around me and not when they’re talking about my son but when they’re talking about a jacket that they saw at the mall that was overpriced and how retarded it was that it was overpriced. You don’t talk like that to a parent of a child with challenges or special needs. It’s not right, because they’re people. We’re all people.

And so we continued on this path of having these negative conversations about our beautiful boy. And, you know, I need to tell you that we didn’t find out Beckett had Down syndrome until after he was born and I have many friends who found out that they were carrying a child with challenges or special needs, including Down syndrome when they were pregnant. And those conversations with those women and their husbands about the baby that they were carrying were far worse and far more negative — far more negative, because there wasn’t an actual baby to be holding.

And so I feel quite lucky that we didn’t find out until after, because my husband and I are pretty strong people and we marched forward and we love Beckett. And we now know that we control who’s in Beckett’s life and who says what about Beckett. But it took a long time to get there. Beckett is 7 years old now and it took a very long time to get there.

So the other conversation I want to talk to you about that gave me the big epiphany happened two and a half years ago. So two and a half years ago I met with a whole new set of doctors. Beckett was four. Our daughter Zoey was three and our other daughter Poppy was one. And we were talking about cancer and we were talking about my cancer: I had been diagnosed with a rare form of cancer. And I had a 10-centimeter tumor taken out of my small intestine and it nearly killed me and it was awful as you can imagine. It was the worst thing that’s ever happened to me. There’s no doubt about it.

It was terrifying for me and my family and my friends, my co-workers. And I honestly – we didn’t know what to do. It was so unknown about the future I felt.

And so when I went to go meet that first doctor, my first oncologist, they didn’t know what it was when I was in the hospital and they removed this tumor out of me. But everybody in the hospital was amazing and they were so kind and so hopeful.

And then when I went to go see the oncologist who had my pathology report that I waited 11 days for, that oncologist was amazing. He was loving and positive and empathetic. And most of all, he was hopeful. He told me all the great things about having this tumor taken out of me. He told me all the great things that it would actually bring me in my life and how my perspective would change, and how — you know, it was all going to be OK.

And I specifically asked him if this was going to be what kills me. And he said to me in the short-term no, in the long-term not if I can help it and off I went. And it was after that conversation and during my recovery that I realized how wrong that first conversation about my son was and how — when my husband and I were holding our beautiful boy, we were faced with negativity and all the things that he wouldn’t do and all the things he won’t do and all the risks that come with having an extra chromosome.

We were told that Beckett, you know, won’t get married and he won’t go to university and he’ll never drive and he won’t have kids. He might never live independently, probably won’t have a regular job.

We were told all these horrible things. Yet my big ugly nasty tumor that nearly killed me was wrapped up in a lovely bow and everybody talked to me in such a positive manner. My son is not cancer. My son is not a tumor, not even close. Nobody told me that he was going to walk into a room and he was going to light it up. Nobody told me that he was going to be incredibly musical – my tumor is not musical.

Nobody told me that he was going to go to a regular classroom which he is in a regular class and he has regular friends, and he gets invited to birthday parties. He’s super funny; he’s walking and he’s talking, might not understand him all the time but he’s definitely talking. And he is the light of our lives. He is the light of our lives and he has taught us more than my tumor ever taught me; I can tell you that for sure. And he has taught our daughters — his little sisters — how to be empathetic and compassionate. He’s taught them so much and they don’t even know it. My daughters who are 6 and 4 don’t even know that their brother has Down syndrome. They don’t have a clue, because it’s not important to them, because he’s just Beckett, their brother.

And they don’t question it that he still wears a pull-up sometimes and they don’t question it that they can’t really understand him all the time. They don’t question that, you know, he’s smaller than his little sister. They don’t question any of that stuff, because he is normal to them and he’s normal to me and to my husband if there is such a thing as normal which I’m not sure that there is. I’m not sure any of us are normal.

So it got me to thinking about changing the conversation with medical professionals and helping them understand that it’s not always about the science, doesn’t always need to be about the science. I need to know the information for sure. I need to know risks, I need to know challenges. I definitely need to know that. But I don’t need to know that right off the bat. I need to have the kindness and the potential and the love and the empathy first; that’s what I need. And I know other parents need it too.

And if you don’t have kids and you plan on having them one day, you will totally understand what I mean. You need to have the positive conversation first and then you can go into whatever other conversations you need to have after, because you were holding a brand-new baby that you made and you love, and you, as a parent, it’s your responsibility to help them meet their best potential and that’s all my job is and it’s all my husband’s job is when raising all three of our kids is to help them reach their best potential.

So it got me to thinking what can we do to change the conversation. And I’m a firm believer that if enough of us care about something, then we create change. And I care enough to change the conversation and trust me I change the conversation every time I met with a negative conversation about my son or anybody else that has challenges or special needs, because they are not looked at the same as other people, they’re just not, especially by medical professionals. They’re looked at as a statistic or as not normal and it’s not right.

So I ask you this: when’s the last time you saw somebody with a challenge of any sort or special needs, let’s just use Down syndrome as an example or maybe autism or cerebral palsy or somebody who’s visually impaired or somebody in a wheelchair, when’s the last time you saw somebody like that and you just smiled at them, or you started a conversation with them? You know, maybe there’s somebody at the grocery store that works there, somebody that works at the coffee shop or somebody just walking down the street, or maybe there’s somebody that can’t get their wheelchair over the curb and maybe you ask them if they need help, because it can be lonely when nobody will talk to you because they don’t think that you’re worth having a conversation with. And that’s how me and my husband felt when our son was first born.

We felt that the only conversations that were possible about our son were negative conversations and I don’t think that’s right and I don’t think it’s true. I think every person has something to offer. Every person has something to offer and I think everybody has potential to reach. We all have different potential. But it’s still potential and somebody shouldn’t be written off in any way shape or form as a newborn baby, especially or a small child or a young adult or an adult just because they’re a bit different, just because they have an extra challenge.

So my hope is that if enough of us change the conversation, if enough of us care, medical professionals will be forced to start their conversation with a new parent or a parent or a child in a positive way because the conversation when that phone rang when Beckett was 5 days old should have been, “Congratulations Dave and Tamara! You have a beautiful baby”, that’s how it should have started, because that is our happy family and somebody should have told me that that was the potential right there, because I think it’s perfect.

Thank you.

 

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