Showing posts with label Siblings. Show all posts
Showing posts with label Siblings. Show all posts

Saturday, January 9, 2010

Sharing the News (Our Story --Part III)

EDITOR'S NOTE: This post originally appeared on Bridget's Light on April 29, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Making the phone calls from the hospital to share the news about Bridget’s birth and telling the other kids about their new baby sister were some of the toughest things I’ve ever had to do. Everyone was expecting the exciting details of her arrival, to hear about who she looked like, and all the other regular new baby stats. Telling people that Bridget had Down syndrome--and also needed surgery--was heartbreaking. I could hear the concern in the voices on the other end of the phone, and I tried to reassure everyone that we were going to be just fine.

I told people Bridget was a strong baby, and we had dealt with other difficult medical diagnoses. We adored her, just as we adored all of the other children, and we were well-equipped to handle the additional information that arrived with her birth.

Explaining things to the kids did not come as naturally. Sitting in the hospital room with them-- waiting for the nurse to bring Bridget to us--was not like I would have wanted to picture that moment. The kids were all crying, and although the mood in the room was calm, it was also sad. Bridget’s impending surgery was a concern for everyone, and the kids did not know what to think about the Down syndrome part. They asked if Ds was a disease, or something she would outgrow, or something that she would just live with (like asthma). Chris and I tried to answer all of their questions honestly and without adding more worry. After all, we didn’t know what to expect ourselves.

The nurse wheeled Bridget’s little isolette in and everyone got to peek at her for a very short time before the transport team was ready to take her to Children’s Hospital. The kids all agreed that she was tiny, and cute, and that they didn’t want her to be taken away from us.

It’s hard to think and write about now.

Right after she was born, I felt anxiety about what was ahead for Bridget and for the rest of us. Everything was turned upside down, and I wondered if things would ever seem “normal” again. I was concerned about her health, among other things.

I spent that first night confused, sad, and without Bridget. It was an overwhelming 24 hours, and my heart was heavy at times. I alternated between joy and despair--sometimes within the same minute. I felt both empowered and helpless. I tried to come to grips with my new reality as the mother of a child with special needs and four other children who needed me to not sink into a dark, quiet place.

A life with Down syndrome was uncharted territory--vast, weighty and scary. What was happening to our world? Would I always be worried about Bridget? Would we settle into a comfortable life and routine, or would things seem foreign forever? The responsibility and permanence of it all was completely terrifying.

Sara stayed the night with me (in my little hospital bed) and my mind drifted to how I had also stayed in a similar room alone--without her--the night she was born. It was a bittersweet time. We ate ice cream and put cold wash cloths on our faces. We fell asleep sometime in the middle of the night with eyes already swollen shut from all the tears.

The next morning, one of my best friends visited and brought two adorable outfits for Bridget and a delicious breakfast for me and Sara--it was the only part of those first few days that offered a glimpse of celebration. We left the hospital a few hours later quietly, with no fanfare, and without our baby. I felt like I was in the twilight zone for a good portion of the day, and I thought about how that day might have been different if the circumstances were not the same. I grieved the loss of the happy time it should have been.

My heart pounded as we neared the NICU later that afternoon. We walked through the doors, washed up and signed in. Right around the corner from the nurse’s station, in Bed 2, was a beautiful little girl recovering from surgery.

I recognized her immediately, and the clouds parted. As soon as I saw Bridget, all the fear and uncertainty that dominated the prior 24 hours gave way to a powerful and overwhelming sense of peace and calm.

Chris and I looked at each other and smiled. It must have occurred to us at the same time. The little nose and chin, the shape of the face, the hairline, the shoulders. Yep, she’s one of ours. She is part of our family and she’s perfect just the way she is...

All at once, I understood that Bridget is not a mistake, or an anomaly. She is the way she was meant to be, and she was placed in our lives on purpose.

She was sleeping peacefully, and I don't know if I've seen anything quite as beautiful, or if I've been as certain about anything else (aside from marrying Chris)--but I knew that I was meant to be there, and that she was meant to be here.

Seeing her laying there under the bright lights, deserving and needing to be loved—just as any other baby—I knew in my heart that I would go to the ends of the earth for her. It's true that the deepest and most honest love (true love) sees the soul, the essence of a person--their wholeness. I realized in that moment that Bridget was complete. She was perfect, and she was cherished--and I knew we could handle whatever challenges we would face with love like that on our side...

Monday, January 4, 2010

Another Baby After Having a Child with Down Syndrome?

EDITOR'S NOTE: This post originally appeared on Bill and Ria on May 23, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Like other parents who have a biological (as opposed to adopted) child with Down syndrome, Bill and I met with a genetic counselor during our week-long stay at the hospital after Matthew was born. Bill says he vividly remembers how our meeting went. I can only remember parts.

I remember the depression, the overwhelming emotional pain.

I remember seeing the results of the chromosome analysis that was done using a blood sample from Matthew. There it was - an extra copy of the 21st chromosome.

I remember asking how this happened and being "reassured" it was nothing we did to cause it and nothing we could've done to prevent it. Matthew has Trisomy 21, the most common form of chromosomal abnormality that affects approximately 1 in every 800 newborns and is typically not inherited.

I remember saying that I was only 29 and didn't think our chances of having a baby with DS was high. Matthew was our first child. We learned that we had a 1/1100 risk. I was upset that I was THE 1 out of 1100. The risk is less (1/1400) for someone between 20-24 years old and it steadily increases with age. The frequency of Down syndrome per maternal age is charted on ds-health.com. I scoffed at other similar statistics that were brought up in later conversations.

I remember asking what the chances were of a recurrence. It increased to 1% (1/100) since we've had a baby with DS. Plus, this risk increases with every year that goes by.

I remember talking about the possibilities of genetic testing for Bill and I before we have any more kids. At the time though, I really didn't feel like having any more kids because the risk of having another child with DS was so high. We talked about exploring in vitro fertilization as an option for future kids. Expensive, but if we had to, we'd find a way.

I remember thinking 'Why me?'

It took me many months to even fathom the idea of having a second child that would not be through in vitro. Many people asked when we would have another baby, not knowing that it hurt to answer "not any time soon". It felt like being pushed off a cliff and asked if I wanted to be pushed off again. I feared the possibility of having another baby with Down syndrome. I just couldn't bear to think of the developmental delays, the arm-long list of potential and likely health problems, the likelihood that he may not be able to live independently, the social stigma, and all the possible hardships that Matthew may have in his life. It broke my heart. Were there other mothers that had this same fear? Probably.

In the past few months, however, I've managed to dispel my doubts and fears. Through Matthew, I've discovered amazing unconditional love that I cannot truly express in words. Through books like Common Threads: Celebrating Life with Down Syndrome by Cynthia S. Kidder and Brian G Skotko, I found reassurances for the future. I read about individuals with Down syndrome like Karen Gaffney, who is a self-advocate, accomplished swimmer and President of the Karen Gaffney Foundation, and Chris Burke, who acted in the tv series Life Goes On from 1989 to 1993. Life is better these days for individuals with Down syndrome and I imagine it will only get better in the future. Through the internet, I found other moms who answered the nagging question I had in my mind: "Anyone here given birth to another child after having your Down baby?" on healthboards.com.

I no longer fear possibly bearing another child with Down syndrome, not to be confused with choosing to have a child with Down syndrome. If God let me choose whether I want to have another child with Down syndrome or a 'typically developing child', I would choose the latter. Can you blame me for wanting to know first-hand what the grass is like on the other side? But the choice is not mine to make. I admire those who choose to adopt a child with DS. I feel it's just not a path for me. Would I take a prenatal screening test? Maybe, depending on how the pregnancy goes and if my doctor recommends it. But I won't be heart-broken if I find out that our second child may have Down syndrome. I'll simply be more prepared.

So, ask me again if we would have another baby. My answer, "Maybe (hopefully) some time soon. We'll see." Are there other mothers who have other (biological) kids without Down syndrome after the one with? Definitely. And I would love to meet them.