9 MONTH UPDATE!!!
Today is a really significant day for our family and a meaningful day to reflect. 9 months ago today, Parker came into this world. That is reason enough for significance, but today also happens to be exactly 1 year to the day that we found out that Parker had Down Syndrome. That day, and the days surrounding it are some of the most important, impactful and life-shaping times of our lives, certainly mine.
With a full year under our belt, I thought it was a good time to re-visit that day and share what we were experiencing.
I'm sure most of you can imagine being in our shoes and how unnerving it was going through this type of thing. It would be easy to be cynical or even angry. At the time we were anticipating what seemed like terrible news, I was actually in a really positive place. For a quick moment when we were first told to prepare for our child to have DS, I was apprehensive and a little disheartened, but really from that second on I saw it as my opportunity to take what God is giving us and see the good in it all. For the weeks before the results and certainly those after, I was energized by some force bigger than me. Chelle and I were talking about it recently and I compared it to an out of body experience. Not that I didn't have it in me to be the positive force that our family needed at that time, but I just felt wonderfully out of control of it all. I couldn't even really find dark places or sadness, it was all positive energy and glee, for the most part. I recall Chelle telling some people in our inner circle that by the way I was acting, she thought I would disappointed if the baby didn't have Down Syndrome. Hindsight being 20:20, I would have been for sure.
To be fair, the positive outlook and euphoria didn't mean there weren't tears and sadness. We cried a lot around that time. Not really for the reasons that might be obvious, though. For Chelle it was a number of factors including, completely unreasonably, guilt. She felt somehow responsible. She also was the mother carrying this child who had brought so much uncertainty and fear into our world and there was no escaping the constant reminders. My tears were of compassion and empathy, mostly. It was really hard to see those around me so emotional and sad. We didn't see it coming, obviously, and we didn't really know how to react other than whatever spilled out of us, which manifested itself as tears. It wasn't really sad as much as just a means to get some emotions out.
November 19th came at the height of our emotional uncertainty. We had a couple weeks to digest the possibilities and it was a really difficult time because we both really like to be organized and in control and we could be neither in this case. As a means to cope with our lack of control, we put a lot of energy into preparing for the possibilities of bad news (that was how we saw it at that time). We read everything we could over those weeks. We wanted to know what to expect, but maybe even more, we wanted to know what it meant to parent a child with DS.
Positivity aside, it was a helpless time more than any other I've experienced. I remember for the span of those weeks, we held hands and prayed in bed every night before we went to sleep. It was actually a little ritual we started when pregnant with Lydia. We'd be thankful for the blessings of being given the life inside Michelle and for the start to our family. For this baby, we prayed, too, but we didn't pray for the baby to not have Down Syndrome, we didn't even really pray for him to be anything other than healthy. We prayed for us to be strong, to be prepared and to be able to accept the challenge, if we were given one (what parent isn't?). There were a lot of spiritual moments over that time (and since), but those nights, feeling really alone in the world, those moments of prayer really brought a lot of peace. I wasn't scared of anything. I was just a parent getting ready for a new life to come into my world.
That morning, I got up and got ready for work like I would any other Tuesday. It had been a few days since we'd taken the Verifi genetics test (a new non-invasive chromosome test), and we were told it would be a week to 10 days for the results to be returned. It hadn't quite been a week, but when the phone rang and the genetic counselor was on the other end, we figured this was the moment. Chelle, who had said if/when they called, she'd want to conference me in because she didn't want to take the call alone, was relieved that I was still home and could sit next to her on the bed, hold her hand and hear the results together. The counselor proceeded to give us the news. I recall specifically the way she said it, too, because it caught us both a little off guard. "The results weren't what we expected, " she said, "they were positive for Trisomy 21 (Down Syndrome).". The "weren't what we expected" part was a little odd-sounding. It was because, even after the Perinatologist had taken the odds and dwindled them from 1-1000ish to 1 in 4, that still meant that we had a 75% chance of "normal" (I hate that word).
I remember Chelle being as strong as she could be in finishing the phone call and then hanging up and the tears could finally fall out. We both, however, did look right at each other and sorta nod like "well, this is what we were expecting to hear". And, based on all of the tests we'd had, it really was. That didn't necessarily make it easier news to hear, but it did make it feel somehow softer and it gave us an answer after a lot of uncertainty. Those of you who've read the blog or the other updates know about all of the uncertainty and roller coaster we dealt with around this time and again after the birth, but this moment was the first real definitive answer we'd be given to that point, despite the wishy-washy details that surrounded it, so it was pseudo closure to something.
After a few moments of absorbing the news, we knew we had to start moving forward on this journey. There was a lot to figure out now. We made some phone calls and told some friends and family. Out of some weird instinct, I decided to run an errand. I hopped in the car and went on a bit of a mission. I drove to the workplace of a man I know named Byron. I know him, his wife, PegAnne, and his family through church, school and their business, but did not know them well. I knew they have a teenage daughter with Down Syndrome. I barged into his business and asked for him. He wasn't there, but one of his employees, maybe sensing my desperation, gave me his number. I went to the parking lot, got in my car and dialed him up.
"Hello?" he answered right away. "Hi Byron," I said, "this is Cory Hollenhorst. I am not sure if you remember me. I think you know my parents a little through church and I've hired you guys (his company) for a bunch of events over the years." From there, I sorta rambled frantically, but got to the point and said, "we are expecting a baby and just found out he has Down Syndrome." Before I could say another word, he immediately replied excitedly, "CONGRATULATIONS! That's so cool...you're gonna love it!"
Talk about the perfect response. I was a little shaken up, despite my mostly positive vibe from those weeks, but his words perked me right back up. We talked for about 20 minutes about various things, him constantly reinforcing the positive, wonderful blessing their daughter has been in their lives. His energy was contagious and I was sure I'd done the right thing contacting him, and even more sure that things were going to be just fine. Just as we ended our phone call, he actually pulled into the parking lot, so I drove over to him and said hi in person. As I drove off, he said "Congratulations!" again. I won't forget the fact that he started and ended the conversation with "Congratulations". It's symbolic of a number of things, but most of all it's a reminder to be excited because we were having another baby!
A few days later, we were invited to Byron and PegAnne's home to meet their family and talk all about their experiences in parenting and loving their child with DS. I won't go into deep details about our conversations that night, but we pulled up and their entire family, all 5 kids and respective significant others & Grandma were all there to celebrate a birthday....we were a little intimidated, but it was also the best thing to walk into - a house full of beautiful people and love. We got to see a family being a family and their daughter was just one of the kids. It also allowed us to meet all of them, who joined in the conversation throughout the night. Each of them congratulated us and were genuinely excited for us. They were the role model we needed and it came at a formative time for us as parents. We've been so lucky to have them be in our lives since and have appreciated their mentorship and support more than they know. They represent what we want to be as a family - a solid unit held together with love and support, regardless of circumstance. While our circumstances have been and will be met with pity and sadness by some people, they've reminded us that there is no place for that, it's a blessing and a joy to have a child like this in our lives.
I could go on and on, as I often do. So many other things happened around this time last year, but almost all of it was good stuff. Other than a few moments of weakness where we were scared that this baby would hold us back in some way, we've never looked back. We laugh at that thought and how we could have ever even thought it. It was silly, but emotions will make you think silly thoughts.
One year has passed. We're all a year older, hopefully a year wiser and, for 9 months of that last year, Parker's been the centerpiece of our lives and the greatest blessing I could have ever imagined - he's just plain amazing. If you've read the blog or the other posts, you know the stories from the months following November 19th, 2013 til now, and if you follow us on Facebook or Instagram, you can see how proud we are to have him. It crushes me to think that people rob children like Parker from the chance at life. [steps onto soap box] Sorry to get political, but I hope that our stories and our sharing of his life inspires people to take a look at the value of life. It's very precious and having an extra chromosome just makes Parker more human than you or me, definitely not less and certainly not less worthy of the chance to live life. He's made my life exponentially better and I can see his impact on others. How sad it would be to not have people like him around, [steps off my soap box].
Since the last update, a few significant things have happened. He's getting smarter and more agile by the day. He tries so hard to crawl, but hasn't quite gotten more than a few inches. His sister was a late crawler...some may call it lazy, so he's probably ahead of her. He does roll over both ways and can go from one end of the room to the other, just by rolling. He's grabbing at things and does a pretty decent job of holding his sippy cups or feeding himself crackers. Just yesterday, he decided that Mommy wasn't reading the book fast enough, and turned all the pages on his own. I'm appreciating all of the littlest things because it's just magic for any baby to do anything like that, but Down Syndrome affects some of a child's abilities to do those little things so I'm just in awe all the time. He's very inspiring.
The kid's also getting bigger! At his 6 month check-up, he was measuring in at a solid height...considering my and Michelle's statures, he stands to be tall (pun intended), but he was woefully underweight. He didn't look it, but we were told by the doctor to feed him like a freshman in college cuz he needed to put on the Freshman 15 ;-) He had just started on solids so luckily we were on the road already. He LOVES food and it's so cute to watch him scarf it all down. He's gained probably 3 pounds since then, which is what he needed and has made him SOOOOOOOOO cute and chubby!
He' a daddy's boy, too, so I love that. I have the magic touch to get him to nap and he loves when I sing and play guitars for him. He's awesome! Unfortunately, I'm not his favorite person. He's like a magnet to his big sister. Wherever she is in the room, you can bet he's facing that way. He loves her so much and loves when she smothers him with hugs and kisses. It's such a great thing for him to have siblings. So great, in fact, that we'll be blessing him with a little sister in March! We can't wait for that day. That night last fall when we went to Byron & PegAnne's to meet the family and talk, the second we got in the car to go home, Chelle said "We have to have more kids!". We didn't waste much time ;-)
Life is good. We are lucky and blessed and thankful for all that we have. With Thanksgiving coming soon, we have a lot to be thankful for. We're always thankful for the good wishes and the love from all of you. It's been a great year to have great friends and family and to make a lot of new friends. Parker has brought a lot of us together. That's a great thing.
Thanks again for reading. We love all of the support and involvement from everyone. Don't ever hesitate to reach out or stop by!.
Thanks for reading ;-)
- Cory & Michelle & Liddy
PS: If you need to catch up, read the original birth announcement story or the 6 month update and I have been blogging since the day we found out about Parker's diagnosis, so if you are interested in checking out the whole story and getting caught up from the very beginning, go to endlessupside.com/our-story/ to get started.