We didn’t find out that Heather had Downs until a week after she was born.

I am Brenda. I am 44. Jeremy is five and Heather is two.

Before kids, I was a database administrator for AT&T, very techy. I liked sports and was very athletic.

I didn’t really think about how kids would fit into my life. I thought we would take them skiing, camping, and out to do things. But I didn’t really think about what it would mean day-to-day.

We knew we wanted to have kids. We were married two years when we first started trying. I was 37. Everybody said, “you’re getting older. It’s going to take awhile.” We had just bought this house and were in the middle of renovation. We thought, we better start trying and then we got pregnant in the first month. It was really a shock and stressful because we weren’t ready. I ended up having a miscarriage. It was a relief in some ways. The second time it took a couple of months. Jeremy came on the scene in 2001.

With Heather, it took us 6 months to get pregnant. That was kind of stressful. I was 41. I went to the doctor and asked him about it. They said before they did anything formal they wanted Stuart to do a sperm test and me to use one of those ovulation kits. Before we even got the results back, we got pregnant.

I didn’t find out that Heather had Downs Syndrome until a week after she was born. During pregnancy, I had an AFP test, but they’re notoriously inaccurate. It came back that she had a 1 in 45 chance of Downs. Well, if you’re 42, you have a 1 in 45 chance. I thought, that doesn’t tell me anything. Then we had a Level 2 ultrasound. They looked at all the organs. Babies with Downs have a 50% chance of having a heart defect and 30% of having an intestinal blockage and 15% chance of this and 10% chance for that. There was a whole list of things that could be wrong but Heather didn’t have any of those. They said in the ultrasound, she has an 80% chance of being fine. But if you think about it, that’s still 20% chance of something being wrong. But now I know that 20% of Downs children don’t have any health problems. We decided that an Amnio has a chance of miscarriage and we wouldn’t abort it anyhow so why do it?

We didn’t find out until she was born. She was born about noon and that night, the pediatrician came in and said “we need to talk.” To me, it was really weird and surreal. Because when I looked at Heather, she looked—and baby’s all look a little weird—kind of funny. Her face was scrunched funny. But she doesn’t have a lot of the features of a Downs child. I mean, she does, when she smiles, or when she cries, but when she’s just normal, to me, she doesn’t look like she has Downs syndrome.

When they came in, they said “she might have Downs syndrome but we need to send her blood off and we won’t know for a week.” So that was really hard. Well, does she or doesn’t she? Stuart just fell apart. He had decided she did have it and he went through this one week of grieving. The next morning he was supposed to come back to the hospital after he took Jeremy to school and he didn’t. I called him and he was at home totally depressed. I got him to come and hold her. And that really helped. Holding her. Because she’s such a happy baby.

Then a week later, they called and said, yes, she does, and I fell apart. But Stuart was better by then, so that helped.

How was I in those first few weeks after her diagnosis? There’s a really good poem about taking a trip to Italy and how you’ve planned your whole life to go to Italy. You’ve dreamed about Italy. All your friends have gone to Italy and now it’s your turn and your bags are packed and you’ve got all the guide books for Italy and you’ve learned some Italian. And you get off the plane and… you’re in Holland. You don’t expect to go to Holland. You don’t have any of the guidebooks for Holland. You don’t know the language and it’s not where you want to be. But if you spend your whole trip in Holland grieving about the fact that you’re not in Italy, you’re going to be miserable. Holland’s got a lot of really neat things. They have Rembrandts. They have windmills. They have tulips. It’s a slower pace of life and it’s different. It’s just a different place.

In our area we have a good group called the Triangle Downs Syndrome Network. It’s a parent run support group and they put together a book for new parents and it’s got stories from parents from when they had a baby and then what their child is like now. That was really helpful. A lot of the parents said the same thing and that is… the first year is the hardest, when you have to line up all the therapies and get into the early intervention stuff. After about a year or so, it kind of blends in and becomes life and it’s really not that big of a deal anymore. You know? I have a few more things to worry about with Heather than with Jeremy. I’ve got more appointments. As opposed to having a doctor’s appointment once in awhile, I’ve got three appointments a week.

Before I had kids, I had some really good friends in Raleigh and outside of Raleigh. But my really good friends in Raleigh, I don’t see anymore. We go to bed by 9. If they go out, they’re just leaving their house at 8 and I got to be up at 7 the next morning, no matter what. There’s just no time to see people or they have a second kid too and their nap schedules are off. I don’t feel like I have any friends now. We email a lot. Maybe that’s taken the place of doing things?

How has it affected my professional goals? I never liked working fulltime. I always had too many other interests. I had finally gotten to the point at work, before I had kids, where I realized I have to be here, I might as well enjoy it. I was actually doing quite well in my career at that point. But now I have kids and staying home is so much more rewarding.

What’s hardest? Being the enforcer. Jeremy’s very persistent. You have to really enforce the law with him. What’s the best thing? All the love, all the kisses. I love doing things with the kids, taking them places and showing them new things.

What have I discovered? Well, I’m learning to be a much more assertive mother. Instead of saying, “are you ready to go upstairs?” I say, “Let’s go upstairs.” It works so much better. That’s what they expect. They know it’s bedtime.

Religion? I really do want Jeremy to know that he’s Jewish and what that means and to carry that forward to his family. Before I thought, everybody has their own religion. What difference does that make? But now it’s really important to me that he have the spirituality and understand the teachings. And with Heather, too.

Is the parenting experience different because I have a daughter with Downs? I don’t really think of Heather as having Down’s syndrome. I just think of her as Heather. It’s hard to say, because I have a sample of one. What characteristics are because of the Down’s Syndrome and what characteristics are because she’s Heather?

Am I different? I’m not in the rat race anymore. You drive down the street and all of these people are passing you left and right to get to work five minutes earlier. I used to be a late night person. Now Jeremy’s going to get me up at 7 no matter what. I can choose to go to bed late and get up cranky or I can go to bed early. I choose to go to bed early. I’m also calmer now. I see the big picture. I see what doesn’t really matter. I’m more organized now.

Advice? The most important thing is to breastfeed. It’s not only good health-wise for the baby and you, but it’s a good way to connect with your baby. Breastfeeding also has a way of slowing things down, because you have to sit down and take the time to nurse and connect with your baby. To me, it kind of taught me that, sure, the house needs to be clean but that’s really not the most important thing. Instead it’s important to sit down with your child and smell the roses.

For Down’s parents I would say, take each day at a time. Having a baby with special needs is more work in some ways, but it’s also more rewarding too. It’s just a different road. I’ve learned a lot. It’s weird because I started this journey focused on Heather and  her needs, but now I can’t tell you how many parents have told me their child is doing something atypical or odd. I kind of consider myself this repository of information that I can use to help other people and guide them along the way. This path is the less traveled path but that doesn’t make it bad. It’s different. Just go with the flow and love your child.

 

Leave a Reply