Of course this time of year is all about being thankful. Of course we have a lot to be thankful for. With the whirlwind that was the last few weeks, I started thinking about all of the things I knew I was thankful for and all of the new things that have come to light. We are blessed in so many ways, with so many gifts of family, friendship, materials and so much more. We can’t complain at all.

Chelle has asked more than once about baby boy’s Downs as being some sort of “evening out” of our fortune. I can’t say it hasn’t crossed my mind, but I also can see how it could just be another of our many gifts. After our visit the other night with our new friends, I am 100% convinced it’s the latter.

On a sour note, I’m not sure what I ate or who I came across in the last couple days, but yesterday after lunch, I started feeling really awful and I’ve spent the last 24 hours in agony. It seems an awful lot like food poisoning, but could be just a 24 hour bug. I am finally feeling a little better, but it caused me to miss Thanksgiving celebrations which were scheduled to be with my mom’s family out at the nursing home where my grandpa lives. I was looking forward to seeing everyone who was going to be there and we had, through one of my aunts, informed them all about baby boy’s DS and they are all so supportive, it would have been great to see them all.

We’ll catch up with everyone soon, I’m sure. For now, I’m thankful for them and all of the other great people in our lives who will certainly play a part in baby boy’s future.

-CH

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Last week when we found out about baby boy’s Down Syndrome, I reached out to a man I know in town with a great family and a Down Syndrome daughter to just talk and start a relationship with their family to help us begin learning and understanding more. Last night we were invited over to their home to talk, get to know each other better and learn all about their daughter.

They have 5 kids and it happened to be their youngest son’s birthday. I know this family from Church and our tight-knit community, but not intimately enough to quite know what to expect. When we drove up, not knowing of the b-day celebration, there were literally 5-6 other cars in the driveway and we could see a whole bunch of people gathered around the dinner table visible through the glass double doors to their home. Needless to say, we were maybe a little apprehensive to start with and the big group of people made us wonder if we were walking into some sort or parenting intervention :-)

We approached the door and were welcomed into the house. They told us of the b-day celebration and introduced us to everyone and it was just awesome, immediately, to see the love and energetic dynamic of the family. They introduced us to their daughter with Downs. She is adorable, shy and clearly sweet as birthday cake…which we were promptly offered!

Then, we went into the living room with the parents to start talking. They grabbed a bunch of photo albums of their daughter to show us everything she’s been through and how completely “normal” it was. I have all of the same scrap books of my childhood. That was great to see and reassuring in countless ways.

It must be said that these people and their kids are probably the happiest and most loving group of people I could imagine exist in the world and it doesn’t seem the least bit phony or forced…purely genuine happiness and love. They also weren’t the least bit shy to share their stories or join in the convo – at different times through our several-hour chat, different kids and girlfriends popped in and joined the conversation, adding in some great perspective.

We could have talked all night and nearly did. Even when we tried to end things knowing it was getting late, as we started to get up, the talk kept going and we stayed another hour. They just felt like old friends and they are so inspiring to me that I wanted to stay and keep talking. We’ll keep the convo going in future get-togethers, I know.

One thing I took away from last night, above all, was one thing that literally every member of the family said, “Congratulations!”. They said it as anyone who would find out we are pregnant would say it, but they all know that baby boy has Downs. I feel like “congratulations” isn’t something we’ll be hearing much from people going forward because they’ll be focused on the Downs and immediately go to feelings of sadness and pity. These folks immediately associated our situation with happiness. That has left me with a great feeling and one that will keep my positivity staying an an up-tick.

So, if you’re reading this and you haven’t seen us since hearing this news, congratulate us! We are excited. We are having a baby boy. Our family is growing. Our circle of friends is growing. Our son is going to make us grow in so many ways we could have never imagined. There is a lot to be congratulated for.

Thanks to that special family for welcoming us into their homes and into their lives. Their spirit and love is something we are looking forward to having in our lives going forward.

AND…Happy 8th Wedding Anniversary to Chelle. We are on life’s journey together and even in moments when life has taken an unexpected path, we’ve got each other’s hand to hold and that’s enough to make it through.

-CH

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Michelle and I are doing better each day with the reality of it all, but one thing we can’t quite get past is the unlikeliness of this whole thing. One of the support books said that one way to tell people is to tell them your risk factor (i.e. 1 in 100) and say “we are that 1″. In our case, Chelle being just 30, certainly not in the risky area of gals in their later 30s, and us having no real family history or any of the few other potential links to Downs, our real risk number was something like 1 in 800. That makes you feel a little worse, honestly when you think that “we are that 1″.

Thinking about how likely it was, and how, based on that number, 799 other parents aren’t go through this, there’s definitely a “WTF?” quality to our “why me” thoughts that creep in. Ultimately, Downs is simply a genetic accident and nothing really causes it nor could it have been avoided so there isn’t really any value in thinking some of these thoughts or questioning anything. That being said, coping takes shape lots of ways and at times being cynical and resentful feels good…then you get over it and start focusing on the right emotions.

I’ve said to a number of people, and I really believe this is true in just about anything – your odds in life are 50/50 – things either are or they aren’t. We had exactly the chance of having another Lydia as we did having baby boy with Downs. It is as simple as that.

Grand scheme of things, our chances of this happening may have been 1 in 800, but our chances of being up for the challenge, being amazing parents and having a great attitude are 1 in 2 – we either will or we won’t. Thankfully, it’s 100% in our control which “1″ we are!

-CH

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Our genetic counselor promised to send us some books and literature, essentially the “So you’re having a baby with Down Syndrome” welcome kit. One of the books is especially helpful in helping us talk to others about our situation and how to respond when people say things that are stupid or unhelpful. I read it and some of the hypotheticals are pretty hilarious.

What else is hilarious is the title of one of the books (see below). I wanna be in the meeting where that title got the thumbs up. LOL.

-CH

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Happy Friday!  This morning is the first day in like a week where the sun is shining. Getting deeper into winter already makes us inherently less cheerful cuz of the lack of sunlight due to short days, but when there’s cloud-cover non-stop for weeks at a time, that’s certainly a more sad-feeling day to wake up to.  Not today!  Sun is brightly shining, Chelle woke up with a smile and a great attitude and that’s wonderful because I maybe didn’t feel so cheery this morning – combo of a headache and bad night’s sleep.  But, her smile brought me right to life and I am grateful for that.

I have planned to take the entire next week off of work, which I planned long before we know about Baby H’s Downs, but given all the heavy stuff from the last couple weeks, a good week off to just relax and spend time with the girls and celebrate Thanksgiving for a couple days will be great. In many ways I am dreading extended family get-togethers because it means we’ll either have to talk about this or people will already know and there will be some social awkwardness, but I think it’s probably going ot be therapeutic and I am worrying for nothing.

Until then, I am just going to plow through a stack of work today and then immerse myself in fun family time for the next 9 days….I might throw some wood-working projects and some holiday decorating in there, too ;-)

Today, our friend Anna texted a photo of this great story/analogy that is right on the money. I believe that perspective is one major thing I’m learning thru this whole ordeal. And, this particular way of looking at our situation is amazing. I’m stoked for my trip to Holland!

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On Tuesday when we got the news from our Genetic Counselor (a medical professional that’s part scientist. part social worker specifically working with families in our situation) about baby boy’s Down Syndrome, she said she’d send us a book, her favorite book, that does a good job explaining how to deal with others. Specifically, she said it was good at how to tell people about the baby and how to deal with people’s reactions or comments.

In the last 48 hours or so, I’ve told my closest friends, a few family members and a couple other select people in our life that I know would be good to tell at this stage. Every single one has been amazing. One friend said  something that, on paper, could be taken the wrong way, “I’m so sorry for you guys”.  I have known him my whole life and I knew exactly what he meant, the word choice didn’t even matter – he meant that he’s sorry for the emotional roller coaster we’re now on, sorry for the complete change in our life’s plan, sorry for the fact that there is now some weird situation we will have to explain to a bunch of people. There IS a lot to be sorry about right now.  But I also know he wasn’t sorry that we were taking this on, still having a wonderful new baby, nor was he sorry that we were given this opportunity that he, like everyone else we’ve been telling, knows is one that only a couple as strong as us can take on. He’s said all the right things and when you care about someone and know someone as long as we have, it’s easy to get the point of someone’s statements – the actual words don’t even matter.

There will be people we don’t know, strangers, acquaintances, even some friends and family that will say the wrong thing at the wrong time and we’re going to need to be prepared to deal with that. There are a lot of people who want to say the right thing and don’t know how, or get nervous and barf up something stupid, but I will tell you now that I won’t judge any of those people because I am not sure I’d know what to say, either. All I know is that if you mean well and are coming from a loving place, then say whatever you want. The words are just words….we’ll get the point ;-)

-CH

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Today is Michelle and my 16th anniversary of being together (wedding anniversary is actually next week, too). This milestone is a special one for a lot of reasons, but right now I can say that we are closer than we’ve ever been.  That’s saying a lot. We’ve been together since we were just kids, really. We’ve gone through virtually every life milestone together, all the big ones at least. Its been half my life now and more than half of Chelle’s. That foundation of friendship, trust and love has made the past couple weeks so much more livable than it would have been with someone who didn’t share that same history.

I’m so blessed to have her for a million reasons, but most of all the fact that she’s brought the most joy into my life as a mommy to Lydia. I know that she’ll do that again with Baby Boy and continue to enrich all of our lives.

Despite the emotional few days with our new reality, today is about love and happiness.

-CH

A few photos from the last 16 years.

A few photos from the last 16 years.

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While yesterday, the day we found out that our baby boy has Down Syndrome, was remarkably upbeat with lots of love pouring in from the small circle of people in the know and a couple very nice new friends reaching out to ensure us that things will be wonderful, today has been a little more difficult.

Today, I decided it was time I told a couple of my best friends – the two best friends I’ve had for the last 20 years or so. Both were exactly as supportive as best friends should be. I expected no less. Both told me they were glad to hear my positive outlook and knew that Chelle and I can handle this.  That’s comforting. They, like virtually everyone we’ve talked to, pledged their full support in anything we need.  I don’t know that we’ll ever call in as many favors as we’re being offered, but it’s nice to know that the well won’t run dry in case we need it.

Right now, frankly, those favors I want to call in are really about shining some sun on Michelle who’s having a tough time. I have been reminding her that it’s 100% normal, 100% expected and 100% acceptable for her to feel sadness, anger, confusion, frustration and a myriad of other emotions. She’s entitled to that. I am too, but I have just found, through a period of rough times in my life, that I am an “all-in” personality, so if I went down the negative path, I’d be miserable and it wouldn’t be easy to find my way out.  So, of course, the opposite is true and I am just buying-in completely to this circumstance being one of great joy and positivity. It’s working for sure.

Michelle has definitely been feeling the weight of our new reality today and it’s making it harder for her to see through to the upside of it all. It will come in time. In the mean time, though, her besties, Anna and Kelsi, are bombarding her with all the love and support that they can. Their relationships are hilarious and wonderful. While they are providing a really genuine love and support, they also sprinkle in enough silly humor to get Chelle snorting (good snorts) and that is why I love those two.  Everyone else in our life that knows, which is still a fairly small circle until we figure out how this all works, has been amazing. We know this is going to be one of those things that changes not only us, but everyone in our lives and I, personally, am excited for that. I already feel closer to many people and know that will continue.

For tonight, that pizza I so desperately sought last night as comfort food will help us out. I’m going to get it myself since my courier, unavailable last night, is booked tonight as wekk, so I’ll make the quick trip and am sicking Anna and Kelsi on Michelle to have an exchange via their new favorite iPhone app, a virtual walkie-talkie engine called Voxer. It’s pretty hilarious, actually.

We’re hanging in there…

-CH

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Today we found out the news we were expecting and, quite honestly, dreading; our son, the baby we’ve been expecting for 20 weeks and thinking was a girl this whole time, has Down Syndrome. Heavy stuff…

No one has visions of kids playing the back yard and one of those kids having Down Syndrome…we just don’t think like that.  The reality, though, is that for thousands of people each year, this unexpected drama becomes their reality – we are just one of many.  The other reality is that we can’t change this situation. By all accounts and from every story we’ve heard and read, we shouldn’t want to change this story because although this wasn’t the dream we’ve been having for all of these years, it’s a dream come true and a blessing beyond our wildest dreams. That’s a hopeful perspective that I am choosing to buy into wholeheartedly.

I am having a great day today because I am really at peace with this reality and am choosing to only see the upsides. Thus, I immediately grabbed my computer and started this blog to document our experience and the changing tide that will be our life for the next several months and years ahead.

Will this be easy? Certainly not.  Will this be scary? Certainly. Will this be doable? ABSOLUTELY! Will this kill us? NO WAY.

I’m not creating a false sense of hope or artificial positivity – I actually am excited for this opportunity and do see this is a special challenge and blessing for us and the reason we are faced with this is because we can handle it – not everyone could, but I KNOW we can.

It’s been easy to let the “why me?” thoughts creep in over the past few weeks of waiting for results and confirmation, but ultimately the answer to “why me” is simple – because this is MY BABY, that’s why. This is MY SON. This is MY FAMILY.  So, why me? Because this baby is part of me and it’s going to need me to do a job that no one else could do but me.  Also, in many ways it’s not about me, it’s about giving this baby every chance in the world to have an amazing life, have an amazing family, and have everything we would have given a “normal” kid. I have a feeling we’ll all be better than we could have ever imagined through this, as well.

Michelle has had a really good day today with this news. I imagine she’ll have some roller-coaster emotions in the next days and weeks and that’s totally OK. I am gonna be strong when she needs me. I will have moments in the days ahead, too, but I am choosing to never let this defeat me, control me or change the fact that I am a father and this is my son. He’s not flawed, he’s not imperfect, he’s not less than any other kid we could have had – he’s simply different and that’s actually a wonderful thing.

I just spoke to a person I know in our community who has a 16 year old daughter with Down Syndrome and I called him to see if we could talk, meet with his family and start building a relationship so we have their support and resources going forward. He could not have been more excited for us. His passion, enthusiasm and positivity was a real inspiration for me right off the bat and an affirmation of the approach I’m taking with this.

One thing he mentioned was that his daughter has been the absolute best thing for their family and he never would have all he’s had if he’d just had another “normal” kid. That was a wonderful thing to hear. I immediately connected with that spirit. I see this boy as someone so special and unique and while we have the most amazing toddler ever in our 2 1/2 year-old daughter Lydia, I am excited for the completely different experience this baby boy will bring us.

I could go on and on. I’m really pumped up today and I know this is gonna be a rocky road for awhile, but I am just gonna choose the positive path at every step in the process and I know it will all turn out great because I won’t let any other outcome happen.

Thanks to everyone (the few of you who know at this point) for your love, prayers and support. That has meant a lot and will continue to be vital in our journey. Feel free to share our story and stay tuned for lots of updates going forward.

-CH

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