The Only Thing To Fear is Fear Itself

EDITOR'S NOTE: This post originally appeared on Welcome to Illinois on October 2, 2008. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Given the current economic climate it is perhaps appropriate to paraphrase Franklin D. Roosevelt, although I am not referring to the current financial crisis but a prenatal diagnosis of Down’s syndrome.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Doctor or Dinosaur?

EDITOR'S NOTE: This post originally appeared on Yo Mamma Mamma on October 4, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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If you were a pregnant mother, and had been told your child screened positive for Down syndrome, and your fancy doctor who was going to be doing your ultrasound showed you a slide with this information on his web site, what would you think?

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

mental retardation,

growth retardation,

early onset of Alzheimer’s disease,

congenital heart defects,

hearing loss,

eye disorders,

epilepsy,

gastrointestinal malformations,

hypothyroidism,

leukemia,

spinal cord compression,

increased risk for infection,

and infertility.


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

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

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

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

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

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

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

It is the purpose of this Act to--

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

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

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

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

My Fears Found in the "Basement"

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.

Another Baby After Having a Child with Down Syndrome?

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

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

I remember the depression, the overwhelming emotional pain.

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

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

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

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

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

I remember thinking 'Why me?'

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

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

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

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

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

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.

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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

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.

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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.’

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

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!