The Phenomenal, Fabulous, Fantastic Ds BlogBlog

The Only Thing To Fear is Fear Itself

2010-03-06T05:05:00.000-08:00

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?

2010-02-21T05:16:00.000-08:00

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.......

2010-02-12T19:45:00.000-08:00

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

2010-01-17T20:59:00.000-08:00

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

2010-01-16T04:36:00.000-08:00

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?

2010-01-10T04:40:00.000-08:00

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)

2010-01-09T03:36:00.000-08:00

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...

My Fears Found in the "Basement"

2010-01-06T04:16:00.001-08:00

EDITOR'S NOTE: This post originally appeared on Our Unexpected Journey on September 26, 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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On Saturday Mike was organizing our basement and he came across this book that I had partially filled out before I even had kids, on December 12, 1999 to be exact. He started flipping through the pages and then he came to this page and read it out loud to me (this is just too crazy people):

It says: Your greatest fear about having children...

WOW. Did I actually write that? When I heard him read it I said "What!" "I really wrote that?" "I can't believe I wrote that!" I think at first when I heard the word "retarded" I was floored but we'll get to that in a minute.

So the fear about a child being sick-hmmm...for those of you that don't know, Ainsley was very sick when she was born. I wrote about it in my very first post but she had something called Nonimmune hydrops fetalis and the doctors told us that 70% of babies with hydrops do not make it out of the O.R.- meaning they don't survive birth. If you go on the internet (which of course I did while Ainsley was in the NICU-bad, bad, bad) the mortality rate for hydrops is in the high 90's, percentage wise. So there's one of my fears that came true (not to say of course that one of them won't get sick like that again-but Lord willing they won't).

Now onto that other one. The fear that my child would be retarded. {Taking a deep breath in}There's two parts to this that get to me. 1) This word I used bothers me. It bothers me because I don't know why I actually wrote retarded. I hate that word and I hate when people say that word and I hate to think about Bennett in that way but was I writing it in the terms that the medical community uses it as in "mentally retarded" or did I just used to throw that word around like it was nothing? I really don't think it was in my common vocabulary, I just really don't and I'm ashamed if it was. And 2) Once again a fear I had, a fear that I actually wrote down... (I realize the fact that having the fear that your child will have a mental disability or any disability is not uncommon, but to write it down and then to have it happen-WOW) ...happened. In the "basement" of my heart I had these real fears and totally forgot about them until Mike found this book. So what's going on here?

Recently I remember reading the status of a friend on facebook: "If you want to hear God laugh, tell him your plans" (thanks Susan)- I laughed when I read that. Now, this can seem a little harsh but I don't think it's meant to be and I don't see God up there laughing at us and our little plans in life and destroying them (or so we think) or laughing at our fears and then throwing them right in our face. The way I look at it is simple: He has his plans, sometimes they go right in line with ours and sometimes they don't and sometimes we just have to face our fears head on to realize that with Him we don't have to be so afraid. The above saying is kind of like the one about "Don't ask God for patience or he'll give you something to be patient about" and I'm not saying "You better not write down or voice your fears because watch out, God will allow them to happen". God isn't like this. But I do think that sometimes what we think we fear most, God has a way of showing us that maybe it's not so much to fear and I guess in my case it just so happens that he wanted to show me them directly.:)

And I do believe "God doesn't give us more than we can handle" but sometimes I think he does give us more than we think we can handle. Like God didn't give me a baby Bennett, a 5 year old Bennett, a 15 year old Bennett and a 30 year old Bennett- now that would be too much to handle. But we've all had times where we think "this is enough, I can't take any more". So by giving us more than we think we can handle, he's not punishing us but maybe it's so we will come to Him because if every thing were just bearable, just enough where we felt we could handle it, we'd never look to Him and we'd never be able to experience Him handling our fears or trials with us-head on.

I'm still sitting here amazed that I actually wrote down those two fears and they actually happened, they literally happened just as I had feared (and yes I cringe at the thought of Bennett being retarded because this word to me is very hurtful and I will NEVER refer to him in that way). Am I angry that these fears happened? No. Are there times and will there be times (specifically with Bennett) that I wish they didn't happen-yeah, I think so. But you know, those aren't my fears any more. And frankly I don't know what my fears would be now. I'm just living and trying not to live in fear and I think that's what God wants.

What Do You Say?

2010-01-05T05:07:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Days With Dylan on April 19, 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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So...

A couple of weeks ago I took Dylan to the pediatrician for a rash concern. This is our new pediatrician's office - you know - the one who specializes in kiddos with developmental delays? Well, I had kind of an awkward experience. The nurse who saw us is not Dylan's primary care physician, but rather was the only one available on such short notice. Anyway....throughout the entire visit, I was really just not getting great vibes from her. She was a know-it-all type and honestly, I could have done without her "extra jokey" personality. Yeah, so I wasn't exactly in the best mood as we had already had a long medical kind of day, but still. I was looking for a bit more professionalism, I suppose.

The nurse basically blew me off about the rash and told me to stop feeding Dylan peaches, change my detergent and change D's bath soap. Thank you very much.

Then, she looked up at me and said, "Hey. He doesn't have those simian creases.". I said, "Yes, I know. I don't know why. He just...yeah. I don't know.". She then proceeded to point out all of Dylan's "Down syndrome characteristics". "See his eyes? The shape? Then look how they are spaced far apart. Also, his ears are low. His arms are short and his hands are small and pudgy. Also the tone. Look...see?". She then picked up his arm and let it flop to the side and said, "Actually, his isn't bad at all. Usually Down syndrome kids (UGH!!) have much lower tone than that.".

I was standing there. So still. Looking at her. Probably with my mouth open, just....absolutely speechless.

But here is a censored version about what I was thinking: Honestly? How RUDE can you be? To stand there and pick apart my baby like that! This is my baby. My son.

Ugh. I am tearing up just thinking about it.

Then, she gave me a slip of paper to bring to the receptionist to check out. I looked at it and here is what it said:

Problem: Contact Dermatitis

Additional Problems: Down's

Down's. Down's? Are you kidding me? Down's? A. of all - it's not freaking Down's (it's Down, lady!!). And B. - we were not there because of Down syndrome. We were there because of a rash. And what does "Down's" have to do with that?! Sheesh.

Ok...whew. Anywhoo...

Fast forward to Friday.

I was on a walk with Cass and Dylan. We approached a woman who we see all of the time walking with her little dog. We stopped to chat for a bit. It was getting close to 11:30 so I told her that we had to get going as it was almost time for Dylan's PT lesson. She got a worried look on her face and said, "Oh no! Why? What happened?". I responded very casually (even though I was actually quite nervous as I still feel...what's the word...awkward, I guess, telling people that Dylan has Down syndrome) "Oh, nothing is wrong. I'm not sure if I've mentioned this to you before (I knew I hadn't), but Dylan has Down syndrome and...". I stopped for she was no longer listening. She had taken off her sunglasses, leaned in really close to Dylan's face, studied him for a few seconds and turned to me and said, "Huh. He doesn't look like a Down's child.".

Um.

So, what is the point of all of this rambling?

What I am wondering from all of you lovely ladies who are traveling this same path, is, what do you do or say when people blurt out...um...how shall I put this? Rude, ignorant and well...not so empathetic things? Do you just get used to it after a while? I know that I am overly sensitive as it is. And, I mean, I know that these people are not intentionally trying to hurt my (and Dylan's!) feelings. I do know that. And I also realize that part of the problem is that people simply do not know what to say. I try to think about what I would have said if someone told me that their baby had Down syndrome. I don't know what I would have said before having Dylan in my life. I really don't. But jeez, I would like to think that it would have been something a bit more...compassionate....than some of the things that I get now.

So, what do you say when you get the random, ignorant comment?

And...do you mind if I steal it for the next time?! : )

Another Baby After Having a Child with Down Syndrome?

2010-01-04T05:08:00.000-08:00

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.

* * * * *

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.

Baby Book Blahs, a Pity Party for One...

2010-01-03T09:14:00.001-08:00

EDITOR'S NOTE: This post originally appeared on My Holland, My Italy on June 5, 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.

* * * * *

I tried to write a few things about what Vinnie is doing now, cooing and such, in his baby book. I guess I haven't written in it since the day after he was born. Basically it has some stuff from when I was pregnant like "My dreams and hopes for you are..." and it also has the date he was born with the weight and height. So I tried to fill in some other stuff but got really pissed. "My thought when you were born were..." I thought "Wow, you have Down syndrome". I could go on with the list of things it wanted me to fill in and I have two books for him so it's double but I will just say most of the answers were "Down syndrome". I wasn't all upset about it when he was born. I knew the moment I looked at him and I was fine with it. So it wasn't a bad thing but I don't want to put that in his book.

So by now you are saying "write what you felt second, after the Down syndrome stuff". I couldn't, I got caught up in my own little pity party. Then I had HORRIBLE feelings that I am ashamed of "he won't ever read it, so why bother". What a scumbag mom!

But on a happier note I did read the "My dreams and hopes for you" section that I had filled in when I was pregnant. I am happy to report that my hopes and dreams haven't changed much. Basically I said I wanted him to be happy, no matter what he does in life just be happy (I remember my dad once told me that if I wanted to be a garbage woman he was ok with that as long as I was happy. That was probably the only thing I remember him saying, well, only good thing). Treat others with respect and if he chose to have children give them unconditional love (this was a little hard on me since they say that males with Ds can not reproduce...no mini Vinnie's).

Now that I have caused most of my family and possibly some of my new "Ds" family a little concern I will sign off. I am ok, I just needed a little vent. No need to check in on me.

Well It's Been A While...(And What Down Syndrome Really Means)

2010-01-02T16:13:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Small Acts of Kindness on December 16, 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.

* * * * *

About 3 days too long based on my last poll :) Thanks to my votees and numerous emails/comments/requests I've had for "more please!". If I was MJ or some similarly talented individual I'd probably tell you that I love you but actually I'm just bloody chuffed...although I do love you too :)

Anyways, to be even more honest, I would have updated earlier but am just getting in to the groove of this blogging thing and am also stuffed. I just don't have a pause button. I don't have a 'me' button (though the readers of the Bikram Yoga post will be well pleased to know that I'm well on my way to Lotus posing with the best of them and the readers of the Martha blog with be pleased to know I've been cooking! With vegetables!).

BUT. I don't want this post to be about me. I want this post to be about Isabella. And I have since about Tuesday when I caught a bus with her into the city.

Isabella.

My 4.5 year old with Down Syndrome. Ya know, I just had a flash back to the moment in hospital when they told me that her having Down Syndrome was a possibility. And I just felt a tinge of sadness and a lump in my throat with that flashback (I've also just had 3.5 Drambuies on ice so that probably doesn't help :)). But it was sad. It was sad because my partner just walked in after almost floating back to Bondi the night before to a room full of huddled doctors (a senior one and about 7 other student doctors) and hit the floor with a thud when their whisperings started to get a bit coherent.

IT COULD NOT BE. NO! NO! NO!. How could they make this up! Not his little girl. Not the one that was gonna kill all the fellas with her surfing skills, not the one that was going to turn the heads around Bondi for the next 18 yrs plus, not the one that would be doing this inbetween working out what more to do with the split atom for 2027 Nobel prize win. Could they not see they were wrong??

What a strange strange time that was. Such a strange strange time. I want to go back and give that mum and dad a great big hug and say "you have no idea just how ok you will be, you have no idea just how beautiful she will be just as she is, you have no idea that one day will start to write a blog about her and your eyes will well with tears because, frankly, the light inside her makes you feel a beautiful, tender and caring love that you could not have expected".

Those that know us know that we lost another little girl 10mths earlier. Our beautifull Liljana who was born too early, much as her fight would have had you question otherwise. We then, and still now, missed her. So our resources were down. First the dream of one girl, and then the dream of the next.

And yet we still had our baby girl. But the adjustment from what we thought she may be, and the realisation that what we thought no longer mattered, was a mighty adjustment to make in 2 days. It took longer ofcourse. It took longer for R. He lost 2 dreams in less than year. It was understandable that he shoved his head so far down that sand pit that it took me virtually jumping on his back and thrashing about to pull him out.

I had my pains too. I was angry with the universe. So so SO angry. How could it do this to me?? I wasn't a bad person. I love diversity. But another load of adjustment and pain my way? Again? Why? Why? Why? Lots and lots of nights wondering why??

Soon enough (actually around the time my friend Sally popped over with a bottle of Baileys and left 3 hr later, ahem, Baileys free) my mind started to much more easily shift towards..."oh look, she needs a breastfeed, where is that nipple shield" to "oh, wouldn't that top look great on her" to "I wonder if anyone has noticed just how divine her eyes are". The mummy in me kicked in. And I am very very very proud to say in a very very big way.

But it wasn't all butterflies and fairyfloss. I became an internet addict. In the middle of midnight, 2am and 4am breastfeeds I was googling every possible Down Syndrome scenario. At 3pm in the afternoon I was googling. At 4pm I was still on. At 9pm I was still on. More, more, more. What more info was there for me to know. I was addicted to knowledge. It probably took me about 2 years to really start to kick back. A lot of mums will say they wish they could have just relaxed and enjoyed that time more. But I did enjoy Belles. I just wanted to be armed with every bit of ammunition I could to make her transition in to life outside my arms as positive, as capable, as strong as possible. I think in plenty of ways I've managed to do that. I think in plenty more ways she would have done it anyway.

It's a little late to mention this, but this post is really for those many people that asked me many times, and for those that wanted to ask. What's Bella really like? What's it like having a little girl with DS

I could tell you plenty of things. I could tell you how really, it's not much different to having another child (and I'm qualified to say this because I have another two - they can alternate between being the most divine little creatures on the planet to you wondering what on earth you thinking when you decided to procreate). I could tell you if you are a new parent that she is toilet trained, walks and talks (those big early worries) and can give a head of hair (usually her brothers) a tug so hard you would be sure there is no 'low tone' there at all :). I could tell you that I find it frustrating that it takes her a little longer to learn things. And that this is my biggest big fat cross against that extra 21st chromosome. That despite how strong her desire is, things will always take a little longer for her to learn. I could tell you, like most of us, she won't learn everything. I could tell you that oft times when she does, it will be with a lot more effort and persistence than the rest of us could even muster. I could tell you that she has the most amazing green eyes and a smile that melts hearts. I could tell you that her brothers adore the pants off of her (hair tugs and all). I could tell you that she is one hell of a clever cookie that knows exactly what she wants and doesn't want. I could tell you that some days, like my other 2, she wouldn't have a clue what she wants. I could tell you that if anything, ANYTHING ever happened to her my heart would break in two and never ever be repaired again. I could tell you that the way she greets people at the door makes her, quite possibly, the only reason anybody ever comes to visit (it's certainly not for the cooking, I can tell ya).

But I won't tell you all that. What I will tell you is what happened on the bus on Tuesday.

It was 9am. I was on my way to a course she was coming to. The whole bloody bus was miserable. I've forgetten how unjoyful people are. Not me and Belle's. She was my joy. That kid just did not stop smiling. And playing. And chatting. I did not stop smiling. She made me happy on that bus ride from the inside out. All these miserable people could do with a bit of Bella in their life.

But she's a kid right. All kids are a bit of fun (when you're not racing to work yourself - but that's another blog). No. Bella's extra. And I've known that for a while. But on Tuesday I remembered why.

On the bus ride home it was a MUCH happier bunch of vegemites (3pm - non workers is my guess, bless their happy socks). They smiled at her. She giggled back. They giggled. Grown men giggled. Ladies stopped on their way out at their bus stops. They tickled her. They high 5'd her. The bus ride was less than 20 min long. There was happiness all round and she was handing out little rays of sunshine in dosages well beyond her size and years. And then we got off the bus. And the bus driver said "goodbye gorgeous". And she beamed. And she blew him the biggest most beautiful kiss. And then he beamed and his head nearly fell of his shoulders from having to hold a smile so wide. And he blew a kiss back. And then he nearly crashed the bus driving off he was in such happy la la land.

And me? Well I was so so so proud of the beauty in front of me.

I haven't thought about the 27th Jan, 2005 for a very long time.

Tuesday and the other Tuesdays in my life are the reason why.

Thankyou Bella. Thankyou for being more than I ever thought you would be. Thankyou for being beautiful. I love you.

For the rest of you. Holy cow! You got to the end! Can you go and follow or subscribe or leave a comment or something so i know who you are :)

And a teeny little post script. Bella got up at 5am today. She took care of her dolly patiently for about 2 hours before the rest of us ventured up. But it was too early. She got tired and cranky and shovey and sooky and a bit of a pain. Coz, really, she is just like any other kid :).

And lucky for me, she's all mine.

Dovic xx

Living With a Handicap: Ten Months On

2009-12-31T16:10:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Our Jacob on September 16, 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.

* * * * *

There is a man who walks the roads around where I work. I see him sometimes around lunch hour. His left arm seems to be twisted, against his will, straining away from him. The thumb points outwards and the palm faces away and it looks like it hurts all the time.

For the longest time I’ve been too fearful to ask. Afraid to engage. Because it’s not just the hand. He has lots of problems. There’s the stoop. He’s virtually doubled up. And the shuffled limp. And the padded, bright yellow safety helmet that suggests a wrong softness within. It lets little wisps of old man white hair poke out here and there. Today in the slim breeze by the rail crossing those wisps seemed to reach for me and repel me at the same moment: Stay away. I’ll make you confront your good fortune and your cosy life and things might not ever be so comfortable again.

I should have stepped back.

But I am not myself these days. Changes happened back there somewhere. If the little boy in The Sixth Sense could see dead people, then I seem to have acquired the gift of seeing live ones. Ones who had hitherto been marginalised by the fit, healthy Leni Riefenstahl-sponsored part of my brain that refused to look directly – really, truly look – at anybody with an obvious mental or physical condition. What if they tore my comfort zone from around me? What if… what if I caught something from them? The cells of my fit body would recoil from the very thought of such grotesquerie.

Until Jacob.

Leni Riefenstahl my backside. God has no more love for my beautiful chromosomal symmetry than he does for my ‘damaged’ son’s awkward perfection. And something happened inside at a level that I don’t ever expect to understand. I saw beyond, to what the old man was. Not some sideshow freak, but a man with more difficulties than me.

The barrier was still down, the DART pulling out from the platform towards town. The helmet looked uncomfortable. I leaned down and saw the person in his eyes. I’ve been so foolish for so long. I smiled a smile that reflected, I hope, the love I felt for humanity.

‘How are you getting on today?’

‘Oh fuck off and ask me arse.’

The Invisible City of the Kidnapped

2009-12-26T08:53:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Living in Invisible Cities on December 13, 2009. It is reproduced here with the author's permission. This particular author does not have a child with Down syndrome, and this post is not about Down syndrome. However, its message is powerful and relevant to many parents in the Ds community, and the author graciously allowed me to include it in this collection. 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.

* * * * *

I have been shanghaied. Taken and stored in a terrible stinking rotten crate aboard a vessel I have not had the courage to name. I have waited for this since Willa’s diagnosis. We knew it was out there, on the high sea, waiting to come in on some moonless night to snatch us away and hold hostage everything we have built up as a wall of defense. We are defenseless. Willa has cancer.

Right after my last post Willa had her routine ultrasound. The Radiologist came into the room and said, “the baby has a large mass in her pelvis.” Again, the darkened quiet room. Why do we always get the worst news in such places? There was a television on in the background playing a cartoon that Willa has no interest in. She smiled at the doctor. She waved. She laughed.

I knew what it was, the nails were hammered into the crate, we were loaded onto the ship.

Next followed the storms of diagnostic testing, the bone scans, the biopsy, the CT, the bone marrow pull… We were tossed about becoming bruised fruit at the feet of those with power. We had word quickly. Rhabdomyosarcoma, Stage III, to date inoperable.

We were transferred to another vessel. Willa will have a year of chemotherapy. Every week we now go to CHOP and she has poison poured into a port by her collarbone. She smiles. She waves. She laughs. My crate has been thrown overboard. I am barely floating, more submerged in a reeking ocean of foreign garbage and dead fish.

But still, I purse my lips and lift them above the water line inside my new home. I keep breathing. I have learned so many lessons of survival from Willa and that knowledge is being tested most acutely now. I have to hope that someone will find me out here. The waves will push me into shore. That some strange ocean animal will befriend me and share what they know of this place. I will gain new sea legs. I may grow gills to breathe.

In the hospital my heart breaks for the other parents. They never saw this coming. They had perfectly healthy typical children and then were given such news, their child has cancer. They wander about the halls with crazy eyes. They cry when pouring their coffee. They mutter under their breath and the smell of fear is everywhere on them. I smile at them as much as I can. I speak when they can hear me. I look them in the eye and try to offer calm because I know that fear. I am just more prepared for this. For us it was a fixed mark on our permanent horizon. We hoped to avoid it but now we are here.

Willa has lost her eyelashes. Her hair is following and then her eyebrows will depart too. She looks different. Her coloring is profoundly altered, her stomach swelled with tumor. Her belly button pushed out, the skin taught and shiny and horribly horribly wrong. But the weeks have passed. The medicine is running like wildfire through her veins and the mass that spelled such tragedy is shrinking.

Our goal is to remove it as soon as it is small enough. She is too young, too delicate for radiation. The protocol is chemo and extraction and more chemo. This ship will be at sea a good long time. This is my message in a bottle. I had feared saying these things out loud. I feared the permanence of writing them down, of thinking them, of sharing because when others read, hear, see, it is real. Totally, unchangeably real.

Willa has cancer.

Will we ever know the feeling of solid ground? Will she ever have a release from all this hurt? Will we continue to have the strength? Can my fingers web? Can my skin grow scales? Can my back allow a fin to break through by which to steer myself in the right direction? Or will we die, locked in these crates, the worms making a deep-sea meal of our hopes?

We are truly invisible now. No one can see us. But hearts beat in these boxes. Their rhythms will make the waves. We will make our own weather.

On My Mind

2009-12-25T12:39:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Finnian's Journey on July 29, 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.

* * * * *

Today was a pretty uneventful day in Finn's life, although he did experience his very first earthquake! He slept through the entire thing, though, while the other kids were freaking out and I was herding them all under the dining room table.

***

I realized today that I don't feel angry anymore. When Finn was admitted to the hospital and had to have surgery, and especially when he was officially diagnosed with Down syndrome, I felt incredibly angry. Michael asked me who I was angry at. There was no person whom I was angry at, I was just angry at the situation, at the unfairness of it all - unfair to me as a mother to have this baby I wasn't prepared for and felt ill-equipped to deal with, and in all honesty for being cheated out of having the "perfect" baby I had expected, unfair to our family for all the ways this would all affect everyone over time, and most of all, unfair to Finn himself for not being given a healthy body and a "normal" life. Yes, I was angry - furious.

I don't think I feel angry anymore, though. Sad? Yes. Scared? Yes. But I've fallen completely in love with my baby boy, and the anger is gone. I love his sweetness. I love how he smells and how soft and warm he feels. I love how he molds perfectly to me when I am nursing him. I love his fuzzy head, and how he has a tuft that perpetually sticks up on top, reminding me of a rooster. I love how he furrows his little brow and looks like a grumpy old man. I love how he loves to be wrapped up tight like a burrito. I love his eyes that are the most beautiful shade of blue. I love how he lets me kiss him all over.

It's getting harder to even remember life before Finn.

***

Not a day goes by that someone doesn't tell me "Special babies are given to special parents . . ." or "Everything happens for a reason . . ." or "God doesn't given anyone more than they can handle . . ." With all due respect, none of that makes any sense to me. Every baby is special, and "special" babies are sometimes given to crappy parents, too. And what possible reason could there be for our family to be given a child with special needs? To teach us compassion, or gratitude? I imagine whatever "reason" people think there might be, it has to do with some lesson we're supposed to get out of it. But where does that leave Finn? Is he just a sacrificial lamb in this scheme? And as far as people not being given more than they can handle, well, come on, folks, what about all the people that go postal? They've obviously been given more than they can handle. I believe that I and my family can and will handle this, as I believe that most people find strength under challenging circumstances that they didn't realize they had. We're not special. We're just an average family with ups and downs, with virtues and faults, just like most other families.

I say all this without bitterness, and it's not my intent to debate whether there is a god or not. Everyone believes what makes them feel able to get through this life. Me? I believe it's all purely random. Sometimes good things happen to bad people, and sometimes bad things happen to good people. I don't believe that Finn was "given" to us for any reason. I do believe that there will be lots of lessons that we'll learn by virtue of his being our son, but I think that's just an incidental result of a random thing that happened in our family. If I believed in God, and if I believed he was responsible for this, then I think I would have more reason to be angry.

***

My friends continue to rally around us, and I still have been unable to find the words to express the depth of my gratitude. We are still being brought meals. I thought it was just through the end of July - and that would have been more than enough. But I was informed a couple days ago that my MOMS Club, as well as some friends who aren't even a part of MOMS Club, have worked out a schedule to continue bringing us meals through August. I feel uncomfortable with all this generosity, but extremely grateful. Last night my friend, Robin, stopped by with a basket of fruit and homemade bread as well as a bag full of breakfast stuff and a beautiful blanket for Finn embroidered with his name and birth stats. My friend Jen came over today with her girls and brought lunch and while she was here and I sat nursing the baby, she put together my new stroller. Judy brought us homemade chicken and dumplings for dinner tonight.

My friends lift me up. I don't know what I'd do without them.

Apparently, I'm a Pollyanna

2009-12-25T11:52:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Simeon's Trail on November 3, 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.

* * * * *

Last week in the UK, news broke that women were experiencing more Down syndrome pregnancies, but fewer births. The increase in pregnancies were related to more women delaying childbearing. The decrease in births were related to "better" screening procedures with more terminations. In reading the articles related to these findings, I found myself reading the comments sections...again (when will I get a clue?).

Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.

There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)

I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.

Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?

Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!

Not My Proudest Moment

2009-12-25T05:40:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Genetically Enhanced on August 20, 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.

* * * * *

Let me first set the stage for this incident...

It was Sheridan's first birthday.
Also, on that day, I found out that Sheridan's early start services will (potentially) no longer be covered by the State of California due to a change in the Lanterman Act that now requires ALL persons receiving assistance related to a disability to first use up whatever your insurance will pay for. And I found out that even if those services are not the same quality, or have a longer wait list, etc. etc. we still cannot get the services he is entitled to - needs! - with the same therapists who have expertise in birth to three (I'm oversimplifying here, and every person's experience will be different depending on their insurance coverage).
So I found out that I will have to fight both our early start regional center AND the insurance company at the same time to ensure Sheridan retains his services (doesn't everybody know fighting a war on two fronts is disasterous?).
AND I found out that the speech therapist who told me Sheridan was ready for weekly ST did not request that in her report. Because "he's so young, we've never requested it for anybody his age before, he'd be the first." So, they are letting his chronological age determine his services rather than his developmental readiness? So, I had a rather, um, assertive conversation with her.
And the shot in my rear end the doctor gave me to help with my severe back pain was wearing off as I was caring my 19 pound son on my hip.

So, with all that in one day, I'm at a local store and...

A man likely in his mid-twenties was behind me in the checkout line. He commented on how striking Sheridan looked.

++++++++++

He's really cute. And there's something really different about his look. He looks exotic.

Oh, thank you!
His eyes are really interesting. His features are really neat. Is he exotic?

[Okay, not sure exactly what he meant by all this exotic talk, but whatever.]
Well, he has Down syndrome and maybe you're noticing some of his unique features?

Oh, wow. So is he retarded or what? You know, how they are all retards?

No more f***ing retarded than you.

++++++++++

Sigh.

I told you it was not my proudest moment.

No matter how exhausted, no matter how frustrated, no matter how difficult being an advocate is at any given moment... it's the life we all live, breathe, sleep, eat, and LOVE.

And I feel like I let Sheridan down. I feel like I let people with special needs down. I know I let myself down... I really struggle sometimes with giving myself permission to not fight every fight.

But I feel it is my duty, my right, my heart's desire, my son's need that I fight. So I'm really regretting that I let my gaurd down and got so defensive on this one. This man's comments came from a place of ignorance, and I have the ability to at least try to fix that.

I still don't know exactly why I had the response that I did (although I do have a sarcastic streak). Maybe I was being the quintessential Mama Bear protecting her cub. Maybe I was just angry that somebody called my son a retard on his first birthday. To his face. Maybe I felt ganged up on after all the other stuff that day. But we all face "stuff" everyday, and will face plenty more and bigger "stuff" in the future.

I just feel the need to apologize. So, I'm sorry for letting my community down. And I'm sorry for letting Sheridan down.

I know I have a lot of fight in me. I know I'm a strong advocate for both my son and other people with special needs. I guess I just need to work on allowing myself to not feel that every fight is my responsibility.

Stolen Embrace

2009-12-25T05:27:00.000-08:00

EDITOR'S NOTE: This post originally appeared on The Unknown Contributor on March 16, 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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“Do you want to hold her?” The nurse asks me. I do want to, but I am nervous. She is very ill now, deeply poisoned by an army of invisible creatures. Her body is so weakened that it has been skipping and faltering. There is a zigzag of wires and tubes connected to her, all feeding her body something it needs to survive this. There is a gaping hole in her flesh just above her stomach, where the stitches surrounding her feeding tube have slipped out. Through the hole I can see her dark red, almost brown, shiny stomach beneath the skin edge. I look away and face the nurse.

“Yes” I say bravely. I settle myself into the chair they have placed beside her metal and plexiglass bassinet. The hard, wide chair is set awkwardly close to the equipment because my baby’s lines don’t go far. I tuck blankets under and around me, trying to mimic the feel of a nursery rocker. It takes me a moment to drape a sweet smelling cotton blanket over me, arranging the pink-edged swath across me to form a barrier between my perhaps germ-infected clothes and my daughter’s fragile body. As I get settled, the nurse adeptly wraps up wires, moves feeders and medicine pumps, disconnects the heater, and scoops my child out of her bed into my waiting arms.

I study her beautiful face. She is so dainty with a rosebud mouth, tiny nub of a nose, and huge dark blue ringed eyes. I want her to smile or somehow indicate that she is happy to be with me, that she knows me to be different from the hoards of others who handle her but she is too sick for such affections. Her six and a half pound body feels very heavy to me. I realize that she is perfectly still, not breathing. Bile and panic rise in the back of my throat.

“She’s not breathing.” I manage to squeak out to the nurse who is hovering over us. The nurse quickly turns to consult the monitor screen. The numbers reassure her.

“She’s ok,” the nurse replies over my shoulder.

“She’s not breathing,” I say again louder with strong emphasis on the word not.

The nurse glances at the screen again. She puts her hand on my shoulder to soothe me and says, “She’s ok. It’s ok.”

A baby girl in our pod has died this morning. Infection, our shared enemy, destroyed her overnight. Not more than an hour ago I was with that mother and child as the mourning process began in the hospital’s small “family” room. That mother and I had passed a bit of NICU time together waiting on our daughters. She held out her baby, already dressed up like a little princess, and I accepted the bundle because no other reaction seemed appropriate.

It has only been a few seconds. The nurse trusts the monitors and she thinks I am having a reaction to the morning’s sorrow. But now I know what it feels like to hold a lifeless baby and this feels exactly the same. I am shaking from an overload of adrenaline in my system. I want to throw my baby into the nurse’s hands. “She is NOT breathing,” I hear myself shouting. My arms will not obey me and I cannot lift her up.

Finally the monitor corroborates with me and sounds the alarms. Immediately the nurse whisks my baby away, up on to the open bassinet, and begins to bag her with a portable mask and oxygen pump. I stare at the monitor watching for my baby’s return. It comes swiftly. The nurse assures me that Kimani is ok, that the apnea has passed.

It is not ok though, because now I don’t want to hold her anymore.

Connections and Retraining the Inner Snark

2009-12-24T04:42:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Only Who I Am on July 31, 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 recently had someone at school look at E and say “is he down?”.
A lot of things ran through my head. Hm, is he down? Well, he was down for a nap, but now he woke up because two kids skipped by, talking excitedly. Is he down? No, he’s feeling rather chipper today, thank you. But I knew what she wanted to know – does he have Down syndrome? Do I just repeat the question for her using appropriate language, or just answer it?
In this case I said “Does he have Down syndrome? Yes, he does.” It was someone who works at the school and there was no reason I needed to burn a bridge there, or cause anyone embarrassment. She was asking because her brother had Down syndrome and she clearly recognized it on E’s face. We talked a little bit about her brother – he has already passed away, and it quite obviously still pained her, so we didn’t dwell on that. To me, in hindsight, it was grand to make a connection with someone associated with the school and have her know what a wonder people with Down syndrome are, because in my world, that’s one more solid brick in the foundation that is going to support my case for E attending the same school as his brother.
And just this week a young person looked at E and quietly said “My cousin had Down syndrome.” I didn’t know what to say, because I heard her hushed tone and the use of the past tense. Had he died? Why had he died? When did he die? And do I really want to get into this with a young person who seems very saddened by the subject? I honestly had no clue where to go with her comment. I smiled at her, because I did appreciate her comment, but I was at a loss, and did not take the conversation any further.
Since E was born, I’ve been busy stocking my arsenal of witty and snarky responses to comments I am expecting to get. Like the above comments to correct someone’s use of inappropriate language to describe his syndrome. Like when he does something clever: “He’s retarded, not stupid.” If he has trouble communicating or is not acting “age-appropriate” when he’s older: “He has Down syndrome, what’s your excuse?” – or my favorite, which is on a t-shirt that made me hoot with laughter the first time I saw it: “It’s called Down syndrome, you f*ing retard!”. (I am crossing my fingers that I will someday be lucky enough to receive sentiment this as a sweet, adorable subversive cross stitch, replete with hearts and yellow-and-blue DS ribbons as a border, from a friend of mine. Since she already knows about it, it’s not a secret wish, right? Nor am I fishing by posting it here, right? Cheryl? Right?)
Truth be told, I would probably hang it in my closet, which is my own little private sanctuary (no comments about being in the closet please. Ha ha, you’re all hilarious). It still makes me giggle, but it’s a bit too brash for me to display for all to see… plus I have come to realize that at this point in E’s life, most everyone who comes in contact with him just thinks he’s a darn adorable kid. Which he is. There are people who feel very sorry for him – most notably my mother-in-law (grr)* – but the majority of them don’t bring it up or even talk to us. Maybe they see him and think “oh, that poor mother and her retarded son”. If they do, they don’t say it to me, and that’s just fine. I think that the rude comments must come years down the road, when children learn to be cruel to one another and to make themselves feel bigger by belittling others. By that time, you’re not standing by your child all the time and mostly won’t have the opportunity to spout venomous witticisms at the offenders. (Besides: the comments are being made out of ignorance and low self-esteem… so what good is a venomous witticism, anyway?)
So I am working really hard to silence that inner snark, that nasty little defensive creature within me who wants to say something biting and sarcastic, because, well, that snark’s not getting a lot of business. Everyone who actually says something about E’s extra chromosome is usually doing so because they have a child with DS, a relative with DS, or a friend or co-worker with DS and they have something positive to say to me. That, my friends, does not deserve snark – it doesn’t even deserve the defensive posture I always pull myself into when someone mentions his syndrome. It’s a lot of work to permit myself to be open to others who have something to say about who he is. Slowly I am realizing, though, that all they are trying to do is create a connection with me, to say “hey, I’m familiar with this and I want you to know that”. Usually it’s because the person who creates that strand between them and me was or is a special person to them. This is why I’m working hard to be open to what they’re saying and the connection they’re trying to create, because those connections – those strands – are lifelines. They’re love. They are what is going to pull me through the times when I’m saying why me? why my kid? why my family? .
Or, they may be the start of a glorious new friendship:
Setting: Target. Scene: check-out. Cast: E, on Jo’s arm, peering out over her shoulder. T holding my hand. Large Black Man (LBM) flirting with E from behind Jo.
(I only mention the color of the skin of the stranger in this setting to paint a more detailed picture – and because it is awfully rare for us to be approached as a family in a Target by a tall, burly Black man.)
LBM: “Aw, how old is he?”
Jo: “6 months.” (smiles)
LBM: “How’s he doin’?”
Jo: “Fine?” (slightly confused quizzical look)
LBM: “Oh, I’m sorry, I’m just asking because I have a son with Down syndrome who’s 18 months old.”
Jo: “OH!” – proceeds to have a very nice conversation with him and pass along information about our parent group we go to -
We regret not giving him our home phone number. In hindsight, we aren’t sure why we didn’t – perhaps because we’re midwestern and we don’t think of just handing out our contact information to complete strangers?
Yes. Connections. Hush, snark. I will work to beat down the defensiveness and open myself to the connections, even if it means that I am opening myself to the potential of being hurt at some point. It will not be the overwhelming response to my (wicked cute) son.

* my mother-in-law, after visiting and spending maybe 3 minutes all told holding her grandson, went home and told Jo’s aunt that every time she looked at him she got “so sad thinking about how hard his life is going to be”. I can’t wait until he proves her wrong. CAN. NOT. WAIT. OK OK I know she’s of a different era, one in which people with Down syndrome were institutionalized, had life expectancies in the 20s or 30s and often spent their days engaged in mind-numbing activities in a sheltered workshop because that was the option available to them. She is an intelligent woman, though, and she does not take the time to educate herself on how people with Down syndrome live today, and chooses instead to just feel pity for her grandkid. Needless to say, we send the grandparents information to Jo’s aunt instead of to her mother.

Mama Bear, Mama Bear, What Do You See?

2009-12-20T09:30:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Down Syndrome New Mama on September 7, 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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Just as newborn babies of differing nationalities or races have visible distinguishing features, so do babies with Down syndrome. While babies with Down syndrome do share some unique features, they mostly look like their biological parents and other family members. All babies are different and not every baby will have all or even most of the physical characteristics described below.

Babies with Down syndrome have very delicate facial features (which have no negative effect on your baby’s senses or intelligence.) You will find that your baby’s features are very proportionate.

Head: your baby may have a marginally smaller head circumference. This size difference is hardly noticeable and you may not even see it or realize it until your pediatrician measures him and marks his growth chart. The back of your baby’s neck may be chunky but this disappears with age. The back of your baby’s head may be a bit less rounded than the average newborn.

Nose: your baby may have a cute button nose with a softly contoured nasal bridge. This smoothness lends itself to a slightly more broad facial appearance.

Eyes: your baby’s eyes may turn gently upward at the outer edge. His actual eyes will be the same size as any other baby but may give the illusion of being beautifully enhanced if your baby has sparkling brushfield spots. Your baby’s eyes may also have small crinkles at the inner corner called epicanthal folds.

Mouth: your baby may have a little rosebud mouth. A smaller mouth may give the illusion that an average sized tongue is bigger than it actually is, (though the jury is still out on whether some children with Ds do have more ample tongues.)

Ears: babies with Ds are graced with petite ears that may or may not have a slight curve at the top. Sometimes baby’s ears are set a little further down on his head though this is hardly noticeable.

Hands: some babies with Ds have a single line on their palms called a transverse palmar crease. This crease occurs in more than 3 percent of the general population.Your baby’s hands may be smaller and his fingers maybe shorter than average. This does not interfere with a baby’s gross or fine motor skills.

Feet: some babies have a small space between their first and second toes which is often accompanied by a vertical crease on the sole at this spot.

Chest: your baby’s chest may appear slightly bowed out or slightly depressed. This minor difference in shape has no negative effect on your baby.

Skin and hair: you may find yourself with a fair-skinned baby who has lighter colored hair than yours. Some babies have very fine soft hair that may be thin in spots. These thinner spots should fill in as your baby grows.

Muscle tone: many babies with Ds have low muscle tone. While this has no bearing on how your baby looks, you will notice that your baby is a bit floppy with an amazing level of flexibility.

So, mama bear, mama bear, what do you see? I see an adorable baby looking at me.

A Conversation Between "The Me Then" When We Just Learned of Reid's Diagnosis and "The Me Now"

2009-12-20T08:29:00.000-08:00

EDITOR'S NOTE: This post originally appeared on Raising Reid on December 18, 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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When we received Reid's diagnosis three years ago on the day of his birth 12/28/06, I wanted so desperately to know about things that were absolutely impossible for me to know at that point...I wanted to know if we were going to be okay, if he was going to be okay, would he die because of his heart defect, when would he walk, would I love him the same way I loved Luke, how was this going to affect Luke and what would their relationship be like, will he have friends, will he be invited to birthday parties, would Reid be able to go to the same preschool Luke went to, would I always be sad that he had Down syndrome, how would this affect my extended family, why me, why us?

Back then there was just no way I could have had answers to any of those questions, the only thing I could do was put one foot in front of the other and trust that all would be okay as I inched forward and learned about this new world I was placed into. However, now that I am three years out I have some of that knowledge I was craving for. If I had been able to have had a conversation with the "Me Now" back in those first few days or weeks and given myself a pep talk or straight answers knowing what I know now...it would have looked something like this.

The Me Then: They just told me Reid has Down syndrome, this has to be a mistake...I keep waiting for the doctors to come tell me they just checked the blood work and there was an error, but no one is coming in here and telling me that, everyone looks so sad. Why aren't they telling me it is a mistake??

The Me Now: Cheri he does have Down syndrome, in a few weeks you will have some tests run to see if he has a type called Mosaic but the answer is no, he has the traditional form of Trisomy 21.....but it is okay, you are going to be okay, I promise you. People in the hospital are quiet and seem sad because they don't know how to respond, and they are trying to let you digest the news I suppose.

The Me Then: But, no one has even asked us his name or congratulated us other than family

The Me Now: Sadly, you are going to find that most of your new friends you will be making who also have a child with Down syndrome experienced this same thing when their child was born, it is another thing you will have in common. But, you are fiesty and though you can't imagine it now at one point you will speak with hospital staff to make sure things change. In a few months a book is going to be coming out called Gifts written by moms who have children with Down syndrome and how much their children enrich their lives....your mother-in-law, fiesty in her own right ;), is actually going to become the "Gifts Fairy" at the hospital she is a labor and delivery nurse at....she purchases these books in bulk and keeps them in her locker and makes sure families are given these when a child with Down syndrome is born there....she wants to make sure no one has the same experience you had and wants to make sure these families know right away what blessings their babies are.

The Me Then: A cardiologist just came in the room and said they were going to take Reid down stairs for a chest x-ray and echocardiogram...what is going on?

The Me Now: You will soon learn that nearly 60% of babies with Down syndrome are also born with a congenital heart defect. Your cardiologist is amazing and is going to take good care of Reid....he is going to come back in here and tell you that Reid has two holes in his heart and a defective mitral valve. What this means is that Reid will need heart surgery to correct these. Reid will need to have surgery when he is 7 and a 1/2 months.....and don't freak out on me but he will actually need a second heart surgery just before he is two as there are some complications with his mitral valve....but he comes out of both surgeries just fine. At this point I can't tell you if there is a third but he is doing great and no longer requires any heart medicine.

The Me Then: How is Toby going to handle this?

The Me Now: Cheri, seriously how can you even ask this...remember it is Toby that you married, the man with the biggest heart you have ever met. Toby is already 5 steps ahead of you in accepting this. Do you remember when you were dating and you were sitting out front of your house in his big red truck...and you asked him where he ultimately saw himself in his career in the coffee industry and he responded by saying he wanted a coffee roasting facility where he could employ people with disabilities? Well, today with Reid's birth and diagnosis a new course has been set and that dream is realized for Toby and your family in Maranatha Import Export and very soon he will be able to bring on his first employee with special needs. In a few days from now you and Toby will discuss that dream and how amazing it is that that was on Toby's heart long before you two even knew you were to be married let alone know that Reid would be in your future. Toby will whisper to you, "We need to move forward with that dream, because Reid and his friends need jobs some day". You will both cry and hold each other, but deep inside you both know that something bigger than you is being set in motion.

The Me Then: What about Luke...will he be disappointed that his brother has Down syndrome? Do we tell him right away or do we wait?

The Me Now: Luke is so amazing with his brother, he is perfect for Reid. You and Toby decide not to tell him for awhile, actually you don't tell him until right before Reid's first Buddy Walk at 9 months. You were afraid it would burden Luke and worry him, in a way I think you were protecting him by wanting him to love Reid wholeheartedly before you gave him the news....but even if you had given him the news earlier Luke would of still felt the same way about Reid....absolutely crazy about him! In fact Down syndrome doesn't bother Luke in the least, he actually acts like he has met a movie star when he sees someone else with Down syndrome and shouts out to alert you....umm yeah, you might want to talk to him about that one. ;)

The Me Then: What about our families, how do they handle it?

The Me Now: Well, let me put it this way, when you first bring him home from the hospital and a neighbor tells you they heard the bad news about Reid's diagnosis your father-in-law steps in and says, "No, there's no bad news here, this little guy found just the right family and we all have a lot of love to give him". And that is the case, your families love him and are excited with each new milestone he achieves. Early on your family asks you what they can do, if they can bring dinner, if there is anything you need... and you decide that what would help you the most is if they each read the book Babies with Down syndrome so they all had a resource on Down syndrome and knew what you were dealing with. You purchased the books and gave them out as late Christmas presents. You had the book too, but your mom is amazing and when she came over one day she brought something up she read in the book and you realize she is way farther ahead than even you. And your mother-in-law, she sees to it that you are stocked with every book on Down syndrome out there and purchases the most beautiful sign language cards and kit to get you started for when you and Reid are ready. No, no need to worry about your family...you have the most incredible extended family and support, not to worry a bit.

The Me Then: Will I always feel sad?

The Me Now: You will feel sad for awhile, you will actually feel a lot of very tough raw emotions and my best advice is to let yourself feel them, it is a natural part of accepting this diagnosis for your son. But, I have to tell you that you are mostly feeling these things because you are scared and don't know what to expect for yourself or for Reid. But no, you will not always feel sad. In fact, you will find yourself saying at one point, "If I knew then what I know now I would not have shed a tear". As I am writing this to you with knowledge of three years under my belt I can confidently tell you how much you love and adore this little guy and there isn't room enough for sadness. Though you feel so sad about his diagnosis now, you will soon see that his extra chromosome becomes a non issue....he is such an incredible blessing Cheri. You are about to gain a new perspective on life as a result of this diagnosis, you are about to become a stronger, more loving and compassionate you....a better you.

The Me Then: One thing that is making me sad is the fact that Reid won't go to the same preschool that Luke goes to....and we love it so much. It makes me sad that Reid won't have the same experiences as Luke.

The Me Now: Again, your assumptions are based on the unknown, remember you don't know a lick about Down syndrome yet! But, good news is.....your little Reid does go to the same preschool Luke did. You actually shared with Luke's preschool teacher right after Reid was born with tears in your eyes that he won't be able to go there, her response to you was, "You never know....". She reminds you of that on the first day of school as Reid wandered in to sit with the other kids and she gave you a big, "See, he did it hug".

The Me Then: When I look at him it is hard for me not to see the Down syndrome, will I always feel like this?

The Me Now: In about a month you are going to meet a family who also has a child with Down syndrome. Their child is a few years older than Reid and they will tell you that there will come a point that you will not even see the Down syndrome. You come to find this to be true as well a few months out, in fact you find it amazing when people come up to you at Disneyland or the grocery store and mention they have a neice or nephew or friend with Down syndrome and you wonder how they knew to say that to you.

.....I need to throw one other thing in, there comes a point where you find such beauty in Down syndrome, the features that once scared you you find absolutely adorable. In fact, I am not sure when this occurred but even though Reid's nickname is Bubbas you always greet Reid with arms stretched out and by saying, "Hiiiiiiiiiiiiiiiiiiii beautiful!!!!!". No, you don't see Down syndrome, you see Reid...and an absolutely beautiful little person that you feel so incredibly lucky to call your son.

The Me Then: Is all of this my fault? Reid was an invitro baby and I am feeling so guilty that maybe I brought this on?

The Me Now: Cheri, no invitro had nothing to do with it. It is a genetic fluke that can happen to anyone. However, you come to believe that he is not a fluke at all. Do you remember going through the process and praying that if you were to get pregnant that God would choose who you were to have....you trusted then that He would choose the child you were to have and you have to choose to believe that now as well. Your infertility specialist confirms this to you in a few days...you ask her the same question and her response will be to you that she can't explain why he made it and not his twin who you carried early on. She told you the only way she could explain it was that he was suppose to be here.

The Me Then: This isn't how I pictured my life, I don't know how to be a parent of a child with special needs.

The Me Now: No one pictures this for themselves and chooses it....at least not at first. Cheri you will fall so in love him with that you don't care about his extra chromosome and you wouldn't want to change a thing about him. You will be so in love with him and his friends that it will absolutely break your heart when you learn that babies in other countries born with Down syndrome are cast aside, put in orphanages and institutions where their outlook is grim if not adopted. Seriously, you who is laying here so heavy hearted and worried would choose this again, you'd choose Reid and his extra chromosome all over again, and you'd adopt every baby out there in those orphanages if you could. And, interestingly enough most of the people who adopt children with Down syndrome already have a child with Down syndrome....so you are about to learn what others parents already know, these babies are not burdens as society may indicate they are beautiful souls with so much love and life to give to this world.

The Me Then: Will I love Reid the same way I do Luke?

The Me Now: Cheri, I completely understand that question because I think it is more common than not to wonder if you could ever love another child as much as you love your first....but if you are asking me that because secretly what you really want to know is if his extra chromosome and the hurdles he will have to overcome will in some way inhibit you from loving him as much as Luke........then without hesitation my answer to you is, No, no way, you absolutely love him every ounce as much as Luke, so much so that at times it takes your breathe away. Your little Reid, the baby you have in your arms who is just hours old is actually going to teach you so much more about love and depth and beauty than you can even imagine at this point, but trust me.... he is an amazing teacher, and ohhhhh soooo cute!

The Me Then: Will he be invited to birthday parties?

The Me Now: Yes. The truth is he is actually invited to more parties in his first three years of life than even Luke was. He is also really popular around Luke's friends....when you are out on the playground after school picking Luke up, Reid tootles along and gets hellos, high fives, "knuckles", and hugs from so many of the kids. He gets a lot of positive attention and this little ham of yours eats it up.

The Me Then: I will really be okay with this?

The Me Now: Yes, so much more than okay.....go snuggle your new love and take a deep breath. The road you are embarking on some might call the road less traveled, but the ones who have gone before you will tell you, as I am confirming now, that it is beautiful..... enjoy the view!