Before I start, thanks again. The outpouring of love and support is still overwhelming us and is fabulous, so thank you all.

Also, soon I’ll do a little re-cap of how our little guy came to us so soon. It was a remarkable story and it’ll make for a good read.

So, we’ve now been home for one full week. It’s been a great week filled with visitors, lots of food, lots of snuggling and lots of pooping, etc ;-)  We are so happy to be home and settled in and we are adjusting to being a foursome now, which hasn’t been too difficult. Parker is pretty mellow, as is to be expected for someone who is still negative 3 weeks old. Liddy is doing great as a big sister, but is experiencing some typical spells of acting out a bit to get some attention. She’s also just a really energetic little kid, so I think she isn’t threatened by Parker as much as she’s just feeling the effects of having to wait her turn or hold tight until mom’s done feeding or whatever may be preoccupying us as parents.

In our first week, we had some important milestones for our family. Most importantly, we all went to lunch at our favorite restaurant. That made us feel very normal again. It was settling and, of course, delicious!

Lunch @ Ciatti's!

Lunch @ Ciatti’s!

On Wednesday of last week, we had our first pediatrician appointment for Parker, who was a trooper. He’d gained an inch of height and his weight was a wee bit lower than when we left the hospital, but that’s more a symptom of having not eaten in awhile and having just pooped. As a safety precaution, they sent us home with a scale to monitor his weight, which has steadily risen, so that’s a great thing.

Parker’s bilirubin, the chemical in the blood cells that causes jaundice, was elevated again. On wednesday, they decided to send us home with a Bili-bed, a phototherapy device that looks like a flatbed document scanner which Parker got to lay on to help bring his bilirubin level down. On friday, we returned to the lab for another test on it and it had gone down significantly, so we were given the “all-clear” to discontinue the use of the Bili-bed.  His color seems better and I think we may finally be clear of any worry there, but you never know, so we’ll keep an eye on things.

Otherwise, he is looking really good. He is still small and most visitors’ reaction to their first meeting with Parker is how small he is, but I think it’s just one of those things unless you’ve been around a newborn. He’s not really all that much smaller than other newborns, but in 3 weeks when he is full term, I bet he’ll seem like a big baby…one that would have been a lot of pain to push out ;-)

This week, we are going to attempt some normalcy. Chelle and Liddy wanted to go to class today, but I think the daylight savings time thing may have made them late due to some later sleep schedules. Regardless, they have plans to do the normal school routine, some gymnastics, story hours, etc. There was (and maybe is) still some concern about going out in public with Parker due to his immune system still being a little fragile, as is common with premies, so we’ll be smart.

It’s feeling good to be able to have that normalcy. The weather here in MN, which has been remarkably cold and snowy this year – historic even – has tamed to almost pleasant and much of the mountainous snowbanks surrounding the town has melted and looks to continue to do so. I am sensing this is the start of Spring because my allergies are making my life miserable.  However, I’ll take this misery if it means I get to play outside in the yard with the kids sooner.

Now here are some pictures of the adorable little fellow.

-CH

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So a couple days ago over my lunch break, I wrote something about our experience bringing Parker into our world. It was meant to reach our immediate network of friends to tell them about Parker and hopefully avoid some awkward moments in the future and, honestly, to save us from having to tell the same story hundreds of times over. Also, and one of the things I learned from the “So You’re Having a Baby with Down Syndrome” welcome kit, we wanted to control the message and writing it down with facts and info so no one could speculate or make assumptions was highly recommended. So, that’s what I did.

Well, that was the intention, but what happened blew my mind in about every way possible.

As expected, our friends saw it and read it. Many “Like”d the Facebook post and several made heartfelt and thoughtful comments. What we didn’t expect was the number of people who would share it and repost it and pass it on to friends. It blew up all over the place and didn’t stop for more than two straight days. It led to dozens of new friends and we got dozens of emails from people all over the country. Crazy!

At last check, the story was read nearly 25,000 times…yeah that’s 25 THOUSAND. Insane. I lost track of the Likes because between the original post and the shares, it had over 2000 and about 1800 of those were people I am not friends with. While I did recognize and ultimately reconnect with many of those people, the vast majority of those people were complete strangers.

I’ve been at a loss for words in trying to explain the overwhelming feeling of appreciation and love. It’s weird and wonderful to have someone from some completely different part of the country who is friend of a friend of a friend write you an amazing and uplifting email of support and appreciation. It’s humbling and also kinda makes you feel like you aren’t worthy, honestly. We’d like to think we are doing whatever any other parents would do in our situation, but we know the unfortunate reality is that it’s not always the case.

With no way to really pay back the love and support, I’ll just say a simple thank you to you all. I am glad our story touched so many of you and I’m also glad it’s been something to bring a lot of people together and, more importantly, got a lotta people on board this journey with us. For so many this will be their first experience with DS, as it is ours, and it should be so exciting to get to experience Parker with our whole village of supporters following along and involved.

For those of you who’ve emailed and messaged – I’ve tried to to respond to some of you and will continue to respond til I hopefully catch up… There were literally 100+ messages to respond to, so bear with me :-)

Love to you all and can’t wait to keep you all updated on Parker as he keeps being adorable and amazing.

Cheers!

-CH

I know it’s been several days since my last post and many of you who follow, and certainly those that don’t keep up on facebook (which has it’s fair share of updates) are wanting some updates. Well, the most important update is that we are finally home! 12 long days in the NICU, but we made it through and the little guy is home where he belongs.

In the days ahead, I’ll tell you all about the birth and the first couple weeks. In the meantime, while most of you know most of the story, feel free to take a read of a little story I wrote to share with the many friends in our lives who didn’t know about Parker’s Down Syndrome. I posted it to facebook a little after lunchtime after talking to Michelle. We wanted to be able to tell people, but not necessarily fully in their face, but wanted to tell the whole story so they understood more than just the simple fact that we have a child with DS.

Cute little fella, ain't he?

Cute little fella, ain’t he?

Please click here if you’d like to read the story.

Check back soon for much more and thanks again for following along!

-CH

For more than one reason, I wanted to just take a moment and make a post saying thank you to everyone….so, THANKS!

I’m actually pretty amazed at how many of you have been reading this blog. We’ve had a lot of family, extended family and friend interactions lately between the holidays, the wedding and now the funeral and many of you have mentioned that you’ve been reading the blog. I was actually a bit taken aback by that fact because, while I had certainly told a good chunk of you, it’s been spread around a bit, too, and that’s been kinda cool. I started it, like the first post says, to be a place to just get some of my feelings out, but also to help communicate with everyone while we’re figuring all of this out. It’s been wonderful to know that so many of you have taken your time to keep up with it all, so for that I am thankful.

I also want to thank everyone for your well-wishes and sympathies on the recent passing of my grandpa. It’s nice knowing a lot of people care about our family like we’ve seen the last couple of weeks. I’ve learned more from that man than maybe anyone in my life. In more recent years I was even able to have meaningful conversations with him about his darker days, days which I know are probably hard to talk about, but the lessons from those days are important to me. Alcohol has played a negative role in our lives from the most part. While I never really had a problem myself, I made the decision over 4 years ago to stop drinking completely. It was about the time we started trying to have kids and I decided that I would make a promise to always be in control of myself as a parent and would never let alcohol be an excuse or reason for anything. Had my grandpa not had his struggle, I am not sure I would have been able to see the value in my decision. Had we not been able to have real conversations about what he had been through in his life, what he had missed out on and ultimately what he gained when he gave up drinking, I may not have had the motivation or power to make the decisions I made. I’m grateful for his strength and, certainly, my grandma’s loyalty, love and commitment to him that gave him the strength and reason to clean up. Aside from all that, the guy was just fun to be around. Sure, he was a cranky old fart sometimes, which is EXACTLY where I get it from. He was just a really great guy and we’ll all miss him and I appreciate all the love and support through this time of loss.

Lastly, thank you to the many wonderful and generous folks who have donated to my Polar Plunge fundraiser. This weekend on Saturday, I am jumping into the lake…the lake that’s been freezing in sub-zero temps for months. I am doing this for the Special Olympics and many of you graciously supported the cause by pledging. I wanted to raise $1000, which was the highest goal in the area from what I could find from all the plungers, but I knew I could do it.  Well, as of today, I have more than doubled it!!!! I have over $2000 and our team, the aptly-named “Plungin’ 4 Parker” is the top-earning team, as well. I have come to find out that the team we are leading is from the next town over, has around 12 plungers and their leading earner, who is in second place to me for the individuals, is a young adult with Downs named Sarah. Ironically, I found out that Sarah is the daughter of one of the nurses at the hospice where my grandpa was staying…small world  But get this, her mother, the nurse, put in on our super bowl pool and won the jackpot!  Lucky gal!  It’s too bad that I didn’t find out about her until after my grandpa had passed away, or her and I could have talked about her daughter and about parenting a DS child.  I’m gonna look for her this weekend at the Polar Plunge as I’m sure she’ll be there cheering on Sarah.

There is still time to pledge and every bit helps a lot. I would be so glad to show up on Saturday with a big pile of money to help this great cause. Click here to go to my Plunger page and donate.  And, seriously, thanks so much to everyone who’s supported me.

So, thanks all. I’ll keep writing if you keep reading ;-)

And, one last thing…. Chelle’s feeling like Parker is gonna be here early. Lydia was 3 weeks early. Our due date is March 25. I am gonna say March 6th isn’t out of the question. I have a feeling… ;-)

-CH

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It’s been several days since my last post and with good reason. Sadly, but also sort of joyously, my grandpa passed away on Monday. His body was just ready to be done fighting, but his mind was there the whole time so we got to have him “there” the whole time, which was a blessing.

Of course losing someone you love is tough, but he’s had a great long life and we can be thankful for all of the memories, especially those that happened in his final few days while at a great hospice house just a couple miles from our house. We spent virtually as much time as we could there with him and virtually all of the family. It was a really great reminder of how important family is…we’ll certainly need that support system for us in the months and years ahead.

I learned a lot from my grandpa, but what I learned most is you need the right wife, and man did he ever have the right one. My grandma is one of my heroes. She’s the most selfless person, almost to a fault, she’s super smart, she is the same kind of busy-body that I am and she’s got a backbone like few other gals of her generation could have. She reminds me a lot of Michelle. The nurturing mother is a special thing and I got lucky because that type of person takes care of everyone around them and I sometimes need it as much as any kid would.

We are thinking Parker is gonna be here a little early to get a head start on benefitting from that motherly wonderfulness. It’s a little sad that grandpa didn’t get a chance to meet him, but that just means grandma won’t have to share when we stop by for some great-grandma snuggles…plus, he’ll be looking down, toothpick in his smile, and we’ll feel his love and pride for sure.

-CH

I’m finding myself more and more excited every day as we await Parker’s arrival. Chelle and I were talking the other day about just how scary parenting is because of all the unknowns, DS or not. It’s scary not knowing if this baby will be as healthy as we hope or as good a sleeper was we hope (we REALLY need a good sleeper this time :-) ). Ultimately, there is nothing we won’t be able to handle. If there is one thing I’ve learned as a parent, it’s that you get past even the toughest moment and look back on it as if it was no big deal. We are just getting past one of those things now. Lydia went the better part of two months without sleeping through the night or even much of the night. We were left with very few options to get her some much-needed rest and ultimately the both of us as parents went without a good night’s sleep for most of two months. That was killer, but now, just a few weeks removed, it’s nothing I even think was that tough now that I’m not in the moment.

The lesson I’m learning every day as a parent is to truly take things one day at a time. That’s as true for the good times as it is for the bad. I’d be devastated if I didn’t enjoy the little moments with Lydia that happen every day cuz I was worried about tomorrow or next month or next year. There are just so many wonderful things happening every single day with her that I am amazed by and cherish. I know that if we keep that attitude and perspective with Parker, we’ll have a great life, even if some tough stuff is sprinkled in there.

When we found out about Parker, we kept feeling this difficult sense of shock that our best laid life plans would never quite happen as we had dreamed. Well, good. I’m ok with that now. I think it’s better to not have it all figured out. I can’t control a lot of things, so why even bother. It’s all about not missing opportunities to grow, love and be loved, and to just be happy in the moment.

So, with that, I am very excited…almost to tears sometimes. It’s been surreal at times that we are having another baby at all and with this baby being “special”, I know we’re just gonna have so much to be happy about and thankful for. I drift into daydream a lot…that’s the artist side of me that I can’t control. I think about all of the things I am going to have in my life with Parker and it’s just cool. I want it all now. I want to go to ballgames, play in the yard, learn to ride a bike, go fishing (well, my dad has offered to take Parker fishing and I’ll stay home…I’m an “inside kid”) but you know what I mean. All of the stereotypical memory-making events are things I just can’t wait for. I’m mostly just looking forward to meeting him. What is he gonna be like? Will he be a blondie like his sister or will he have Chelle’s dark hair and skin? I just want to hold my little perfect son in my arms and feel him breathing. That will be enough to start with. We’ll all learn a lot about him and each other in the time ahead. In the time between now and his birth, I’ll just keep getting antsier and antsier in anticipation. It’s gonna be so great and I can’t wait.

-CH

Well, it’s been crazy busy around here. A lot going on and breathing room doesn’t look too close. Amongst the recent and upcoming events are:

  • Advertising Awards Season – some of you know, but I have been highly involved in the American Advertising Awards for the past many years. I recently completed my term on the national Board of Directors and the Council of Governors. It’s been a great run. I have always been highly involved in my local ad club competition, as well, and am again this year. And this past weekend I went up to Fargo to help get their competition steered in a little straighter direction. On the ride up, I brought with me a judge, and former client/colleague from Minneapolis. We had a lot of catching up to do, so it was a nice time in the car. We shared some stories and I mentioned Parker’s DS. He mentioned that his two children go to a charter type school in MPLS where all kids, including many special needs kids, are all immersed together. He asserts that this young generation will be the most accepting of all people, regardless of disability, race, creed, etc. It was a great talk and also gave hope that all the people in Parker’s life will treat him like anyone else.
  • Liddy’s Birthday – #3! Gotta get a plan figured out officially, but it sounds like we’ll be doing a little gymnastics date with her gal-pals (and their mommies) and then some family stuff at some random times due to travel plans for various people.
  • Polar Plunge – only a few weeks away! You can still sign up to be on our team, or donate to our team by checking out THIS POST.
  • Finishing Parker’s room – while this isn’t an official event, it’s a project that needs to happen. Big strides have happened, but there’s still work to do and the clock’s certainly ticking.

There’s lots of other stuff happening, not to mention just coming off Bubba and Hailey’s wedding weekend just 2 weeks after the Holiday season. but it’s just generally been crazy busy.

In other news, my grandpa (my dad’s dad) isn’t doing well, has been in slow decline since late last year and on Saturday he was taken to the hospital where it appears that some of his major organs are continuing to function poorly.  He has had a rough, but long and great life. He’s had many times of trouble, but many more of triumph. He’s been a great example of what to do, and, frankly, what not to do at times. Deep down, he’s this soft-hearted wonderful man. I think his being able to overcome his alcoholism for the good of his family (not to mention himself), is something I think of often. Shortly before Michelle and I decided to try for our first child, I quit drinking and eating poorly. I knew that if I was to be the best parent I could be, it would mean I was always level-headed and I was, well, around to be a parent. Not that I necessarily think I am going to die young, but I figured it’s important to start working toward health in my older age by developing great habits in my younger days.

I’ve been over to visit my grandpa at the hospital a couple days this week and he’s doing much better. They’ve got the big things under control, which is great. We took Liddy over there yesterday and he brightened up quite a bit. She’s so fun and sunny and her smile is contagious. I think he was in better spirits the last couple days anyway, but you know it’s special to have 4 generations in one room enjoying each other’s company. At this point, there is no telling how much longer he has left, but I’m hoping that Parker gets to meet his Great-Grandpa for sure…I think they’ll like each other.

-CH

One thing that has been on my mind a lot over the past couple months was the idea that we didn’t think twice about bringing Parker into this world, regardless of his number of chromosomes. I know this is a touchy subject, but one I think is worth talking about.  In our reading and even more in our discussions with people in the DS community, we’ve heard some staggering statistics about the number of parents who elect to terminate the pregnancy when they find out that they may be having a baby with DS. Some have even suggested the number of early detection abortions is around 90%. WOW. That’s been in my head for sure. Regardless of where you stand on abortion, it’s hard to argue with the fact that some, if not many of those abortions would have resulted in a baby without DS. If I’ve learned anything from our roller-coaster experience, is that NOTHING, NO TEST, NO SCREEN is right all the time. In fact, many are downright unreliable and very ambiguous.

During my brother’s wedding last weekend, I had a nice talk with a life-long family friend who, herself, happened to be adopted. We were talking about our situation and I had mentioned just how common it might actually be if there were less terminations. She made some powerful statements about how important choosing life is because she is the product of someone making that decision. Given all I’ve learned and what we fully expect to be the case about DS people’s quality of life nowadays, I see it as completely selfish and wrong to prevent that child from having a chance.

That all being said, we didn’t consider it our option to terminate this baby. We did, in all honestly, quickly discuss the idea of putting him up for adoption, but once the shock of the situation wore off, we laughed at that moment of weakness.  We are responsible for this baby’s life and we are ready, and even excited, to have him join our lives despite the very unknown nature of what lies ahead for him.

Politics aside, I hope that Parker will be an example of life to everyone around us and help steer people toward valuing all life, it’s certainly reinforced my views.

In lighter news – Parker’s room is gonna be awesome. Almost done and pics to follow, I swear!

-CH

 

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Liddy couldn’t stand to be away from me during the church service, so made her way up to stand by me and the other groomsmen. I couldn’t turn her away…too darn cute. Chelle and I managed one quick photo…not our best work :-)

This past weekend, my brother Bubba, got married. The wedding was at a beautiful lakefront resort about 75 miles north of where we live. It was a pseudo-destination wedding and we all moved into the lodge and it’s surrounding cabins and cottages for the better part of the weekend. Needless to say, it was a nice set-up and a great escape from the city.

I was a combination of excited and anxious to see the hundreds of people I haven’t seen in awhile. Many of those faces were on people who know about Parker, many weren’t. Being part of the wedding gave me a little shelter from a lot of the “what have you been up to?” obligatory chit-chats, but also made it harder to find a lot of time to talk with some of those people I haven’t seen in awhile. Honestly, given the logistics of everything, I did a lot of quick hello’s cuz there just wasn’t really time to have meaningful conversations with a lot of the folks I would have love to have chatted with.

The wedding did, however, clearly demonstrate that many people are reading this. Of the dozens of people I talked to to, almost all of them mentioned they’ve been following, which was pretty cool to hear. It also made me feel less like I had to give everyone a big run-down, and we could get to just talking and catching up. One of my goals in writing this blog was to let people keep up and save me from having to re-hash everything every time I saw a new face.

Everyone had really kind words and a lot of positive reinforcement, as well as compliments about out attitude and approach during what could easily be a sad and trying time. It always feels good when someone says nice things to you, but it’s also nice to know that people care enough to keep up and pledge their support.

When we got back to reality early this week, Chelle and I started talking about how much fun we had and how great it was to see everyone. We also talked about the fact that the reality of it all is getting much closer. If things time out like Lydia’s birth, the baby will be here in the early part of March, so that’s not terribly far away when it comes down to it. Between now and then we have a lot of stuff on our schedule between work things, Liddy’s b-day, the Polar Plunge, etc. It’s gonna come up super quick, so we can’t forget to get all of our ducks in a row…less about parenting a special needs child, but more about PARENTING. It’s been 3 years since we dealt with an infant…I think I forgot how that works ;-)

We’ll be good, but it will be happening sooner than we are ready for.

In other news, support our Polar Plunge effort by clicking HERE

And I did some cool stuff for Parker’s room and I’ll have some photos up soon.

Ciao!

-CH