The Only Thing To Fear is Fear Itself

EDITOR'S NOTE: This post originally appeared on Welcome to Illinois on October 2, 2008. 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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Given the current economic climate it is perhaps appropriate to paraphrase Franklin D. Roosevelt, although I am not referring to the current financial crisis but a prenatal diagnosis of Down’s syndrome.

Now that our little boy has been born it seems strange to think back on all the fear and nervousness that we went through between his diagnosis in March and his arrival two weeks ago (the story of which can be found at Waking up in Illinois).

In my last update to that page I wrote that the fact that he has Down’s syndrome has quickly become irrelevant since his birth. I thought it was worth explaining what I meant by that.

Between the diagnosis in March and his arrival in September the only thing we knew about our little boy was that he had Down’s syndrome (we didn’t even know he was a boy).

In the circumstances, I think it was natural that, despite our best efforts to the contrary, we came to think of Down’s syndrome as a defining characteristic. Now that he has arrived, Down’s syndrome is still part of who he is but seems much less significant; like the colour of his hair.

Of course we have been lucky that he has not had any of the physical problems associated with Down’s syndrome – such as floppiness, heart problems or digestive difficulties. Perhaps we would feel differently if he did have any of the associated problems, but I’m not sure it would have changed things significantly.

I came a cross a blog recently written by a woman who had been prompted to start a blog to record her thoughts after her grandchild was prenatally diagnosed with Down’s syndrome. My advice to her, and anyone else in the same situation, would be not to focus too much on the potential problems.

I think it is important to understand the potential health implications and prepare yourself for the worst, but that does not mean that you should not also consider the best. While there will inevitably be challenges to face in the future our child is proof that babies with Down’s syndrome are more normal than they are abnormal.

I write this not based on blind faith or a belief in the sanctity of human life but from the simple observation that there is really very little that differentiates a baby with Down’s syndrome with any other baby.

That and the fact that when your child opens his eyes for the first time and looks into yours, any doubts and fears suddenly feel much less important than they once did.

It is important therefore to focus not only on the potential Down’s syndrome-related disabilities and symptoms but also the potential abilities and capabilities. I now wish we’d spent more time and energy thinking about the latter, rather than worrying about the former.

This is especially true as I now realise than rather specific disabilities and symptoms, the biggest fear we had in the months leading up to the birth of our son was the fear of the unknown.

The unfortunate truth about ante-natal screening tests is that the statistics and percentages they provide prospective parents with deliver very little in the way of knowledge. As I wrote back in July: “any decision must be made from a position of knowledge and understanding and… test results and statistics unfortunately provide parents with neither.”

In August I noted the negative reaction of one mother to the ante-natal screening process, even though it eventually provided her with the news that her baby did not have Down’s syndrome.

“I couldn’t help thinking about how stressful the past few weeks had been. It all seemed unnecessary,” she wrote.

I have the same feeling now that our little boy is finally here.

Why Are We Afraid of Down Syndrome?

EDITOR'S NOTE: This post originally appeared on Simeon's Trail on February 19, 2010. 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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Of all the things that can go wrong with a child - cerebral palsy, cancer, emotional issues, teenage rebellion (drug use), etc. - why is it that Down syndrome seems to strike the most fear in our hearts?

I'm not being judgmental...I was right there, too. When Eon was born (odds were 1:20, declined amnio) and we were told within minutes of his birth that he had Ds, I was terrified! It felt like the air had been sucked from the room. The fear abated when I finally held him and looked into his sweet face, but I won't deny that it was my first response.

I think back to that, now that I know my fears were completely unfounded, and wonder if I would've been as afraid if it had been something else. I like to think that I would've been, but I don't know.

I don't think we're really afraid of actual Down syndrome, but rather the image of Ds that we have in our heads...the adult with Ds in our childhood neighborhood with the institutional hair cut and the garbled speech...or the kid with Down syndrome at our school coming out of his special ed class at lunch who always tried to hug us...or our great Aunt Sue's memory of her little "mongoloid" brother who was a burden on the family until he died at 25.

The reality is that Down syndrome doesn't look like that anymore. Early intervention and medical advances have changed the face of Down syndrome.

First, people with Down syndrome don't suffer. This is a group that embraces life and expects us to do the same. In the words of American Idol contestant Maddy Curtis (who has 4 brothers with Ds), "They see the world in color and we just see it in black and white."

Second, they are not a burden. Babies who are born with Ds today are expected to live independently as adults with only minor support. We are seeing young adults work meaningful jobs, attend college, and even marry.

Third, they are more alike than different. Kids with Ds will learn to do all the things typical kids do...walk, talk, read, attend school, fight with siblings, etc...it just may take them longer. They can be fully involved in sports, music, dance, karate, etc.

There are some health issues associated with T21. Most are minor and easily corrected and not every kid will have them. It's absolutely possible to have a perfectly healthy baby who also has Down syndrome. Heart issues are scary, but often don't need surgery and if they do, the surgery is considered routine and has a high success rate.

If we have other kids, we're often worried over how Ds will affect them. I know I did. Good news! Siblings of those with Ds have been shown to have higher levels of empathy, compassion, and tolerance than siblings of typical kids. Aren't those qualities we want our kids to have? Studies have also shown that parents of kids with Ds are actually more likely to stay married than those without.

It's not a cake walk. Parenting seldom is. All kids have challenges. With six kids, I know this better than anyone. With Ds, at least we get advance notice of what some of them may be.

Don't Pity Me.......

EDITOR'S NOTE: This post originally appeared on Life is Beautiful on June 4, 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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I don't know why I do it. Why I cannot turn away from the news that breaks my heart. The sight of a beautiful babe gone in the blink of an eye, never to feel his mother's caress again. A mother left shaken and battered by the loss of her beloved child. The breast that aches for a nursling, the momma's heart shredded by a disease, a failed surgery, the one final attempt to save her beloved child only to learn the child would be taken from her. The heart of a mother truly left bleeding from an open hole that will never be completely filled.

Never in my life have ever been so completely aware how fragile life truly is. How absolutely blessed I am to have healthy children. My children are not medically fragile and for that I am eternally grateful. So why do people feel pity for me and my family? Oh, yeah, wait.........I remember now.

Down syndrome.

Who cares? So what! My son has 47 chromosomes. Yes, he is delayed. And yes, he does not walk (yet). But my son is here! On Earth with ME. Society, don't pity me. The shoes I wear are not ugly and they do not hurt my feet. So, society, don't pity me. Save your "I'm sorry's" for a mother who has so very unnecessarily earned your condolences. Society, don't pity me. Send your "Are you allright's" to a mother who cannot sleep at night because all she dreams of are the last moments she spent with her child before saying "Goodbye, my love." Society, don't pity me. When you see me out and about with my boys and wonder what is "wrong" with the little one, don't pity me. You see, society, I have the pleasure of taking my children with me wherever I go. I have the pleasure of knowing what it is like to hear "Momma" from a boy many women never choose to give birth too. Society, don't pity me. Save your pity for those women who fought with the prenatal diagnosis of an extra chromosome and believed they were doing the "right thing" by not birthing that angel. Society, don't pity me.

Abortion, cancer, heart defects, surgeries, MPS, SMA, fatal trisomy's and the list goes on and on. These are the takers of babes, the robbers of families that leave behind devastation in their wake. Society, don't pity me. By God's good grace, I have not experienced the heartaches out there. I have simply enjoyed the blessings of my boys, even the one with 47 chromosomes.

Society, don't pity me.

A Moment

EDITOR'S NOTE: This post originally appeared on Lila's Miracle Life on January 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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I'm not sure why I've been so emotional lately but I have. I cry all the time! Not boo-hoo crying, just tearing up. Today was our first sign language class since last year and I needed to run a couple of errands before we met everyone for lunch. Lila was being CRAZY. Crazy, crazy. Typical 2 year old but she was doing everything possible to make sure we weren't going to leave on time. I'm running around trying to get everything together and of course she wants me to hold her. I thought to myself.... gosh, I only have 2 hands. Fast forward to lunch. I was waiting on my friend Pam when a mom and 3 kids walked into the restaurant. Two girls around the ages of 3 and 4, and a baby in a stroller. She sat down in a booth near us and I notice that she only has one hand. Seriously. And she's making everything work. She using her teeth and her body in place of the missing hand. Of course, I tear up, then get mad at myself for what I'd been thinking earlier. So when Pam gets there we start talking about things that we take for granted every day. This lady and her kids get up to leave and she calls one of the little girls Lila. They have to walk right by our table so I ask her - is your daughter's name Lila? That's my daughters name. So we talk for a few minutes about names and hair bows and other things. And then Pam's daughter Eliza grabs this lady's arm where her hand would be and this might sound weird but it was moment that I won't forget anytime soon. She had been admiring our little angels with Down Syndrome and then Eliza, in her innocence, grabs this lady in what must be her most vulnerable place. It was a beautiful, raw, here -we -all -are- with- our- imperfections moment. And it felt really, really good. No masks, no judgement. And when I looked in that lady's eyes, I knew she felt the same way. If only we could stay in that moment. Where we just accept each other's flaws and imperfections, knowing that we are loved back in the same unconditional way.

Getting Better

EDITOR'S NOTE: This post originally appeared on One More, More Than One on November 5, 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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Sunday morning, San Francisco Airport.

I saw a woman walking with her son.

Something about him looked familiar.

Does he? No. Yes. Maybe?

No, definitely yes.

Do I say something? I want to. But what?

We still don't have a secret handshake or a gang sign yet, do we? Dammit.

Someone really needs to put that on the agenda at the next convention.

Until then, I just can't walk away.

There's this pull. It's like a magnet.

I head towards my terminal, but something turns me around. They're still there. Walking slowly. Taunting me and my inability to leave well enough alone?

I step towards them, recognizing the familiar feeling of angst over whether this will make me look foolish.

I circle them like prey.

Does he? No. Yes. Maybe?

No, definitely yes.

The mother looks nice enough.

God, I hope I'm not wrong.

If I think about it any more, I'll punk out.

So I open my mouth.

"Good morning," I say with a smile.

The mother gives me the "You better not be trying to sell me something" look.

I have to keep going. Finish what I've started.

"I'm sorry to bother you, but I always feel compelled to speak to others who are on a parenting journey similar to mine."

Hm. That came out smoother than I expected. Wordy, but definitely better than what I've said in the past.

She smiles.

She knows what I'm talking about.

She asks me about my child. I tell her.

She smiles some more.

She tells me that they're only walking so slow because her son hurt his foot.

He lives on his own, you know.

And he assists with their local college football team.

I notice his jeans that are frayed at the bottom, his t-shirt, and flip flops.

He looks like any other guy his age.

I smile some more.

I could talk to them for so much longer, but soon I wish them safe travels, not wanting to overstay my welcome.

Doctor or Dinosaur?

EDITOR'S NOTE: This post originally appeared on Yo Mamma Mamma on October 4, 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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If you were a pregnant mother, and had been told your child screened positive for Down syndrome, and your fancy doctor who was going to be doing your ultrasound showed you a slide with this information on his web site, what would you think?

What are the problems with a child or adult with Down syndrome? Unfortunately, there are many. These include

mental retardation,

growth retardation,

early onset of Alzheimer’s disease,

congenital heart defects,

hearing loss,

eye disorders,

epilepsy,

gastrointestinal malformations,

hypothyroidism,

leukemia,

spinal cord compression,

increased risk for infection,

and infertility.


From www.fetal.com
You can see the slide if you click on the link in the center of the page that says "1rst trimester screening for Down Syndrome" and then look at the 6th slide

I wish all of us could have a list like this of the problems with being human. We all are predisposed to possible "issues." Some of us will get cancer at a higher rate, some have heart issues. Some of us are drug addicts, or alcohol addicts. Some have flat feet. If you totalled up everything that you might have, or your husband might have, or your typical children might have, and saw a list, you would live in fear.

In our case, so far, Violette has been quite healthy. She has a congenital heart defect, but it is minor. Thing about people with Down syndrome is that while "congenital heart defect" sounds frightening, where medicine is today, the type of heart defects typical of people with DS are usually treatable, and kids with DS do very very well after the surgery. Violette hasn't needed heart surgery, and if she does, it will be a minor procedure (believe it or not) where they will run something up her leg, and she'll be done.

Violette may have a "gastrointesinal malformation." She takes reflux medication every morning and every afternoon - a half a teaspoon full of zantac. No biggie if you stay on top of it. If you don't treat it, it can lead to serious issues. But we treat it, and she should be in good shape. (Her maternal grandmother has been taking meds like Zantac for the last 20 years for her "gastorintesinal malformation" and we all think she's more than OK.)

Other than that, right now she has bad eyes - like her mother and her father (and her grandparents and her cousins and her uncles.) And she'll be getting glasses.

This doctor irks me. I can't lie. If this slide was followed up with something about what life can be like for people with Down syndrome, a point to the quality of life of the family or a reference to learning more about DS from an organization that specializes in it (there are 5 clinics for DS in California, and several excellent parent support groups) I'd have more respect for what this doctor is trying to do. Why, for instance, didn't he comment on the fact that people with DS are less likly to get solid tumor cancers?

Doctors giving only one part of the story about Down syndrome should soon become the dinosaurs that they are. There is a new law, Public Law No: 110-374 is called the Prenatally and Postnatally Diagnosed Conditions Awareness Act.

It is the purpose of this Act to--

(1) increase patient referrals to providers of key support services for women who have received a positive diagnosis for Down syndrome, or other prenatally or postnatally diagnosed conditions, as well as to provide up-to-date information on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;

(2) strengthen existing networks of support through the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and other patient and provider outreach programs; and

(3) ensure that patients receive up-to-date, evidence-based information about the accuracy of the test.

As for me, I don't spend a whole lot of time worried about Violette's health. Monitor it closely, yes, but worry about it, not so much. I feel she is here, with us for a reason. I want to enjoy living with her silly little self and not waste time worried about what might be. The list above is merely what is possible - not a definitive list of what is going to happen. It would have been nice if the doctor had pointed that out.

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...