To start, my cuties getting ready for winter…
I am not blogging today:)
I have a guest blogger…my husband Curtis.
I wanted him to share some thoughts from his perspective. They are pretty great! (and I am, of course, completely unbiased!!) Enjoy…
Karyn has asked me to write a guest post on her blog and share a bit of my experience through this journey. Like many of you I think Karyn has a gift when it comes to blogging. I think she is very good at sharing her thoughts in an open and honest way, so please forgive me if I’m not quite as good at this as she is. The truth is that my experience has had some unique elements to it, and while we have both been on the same journey I feel like I have experienced things a bit differently being Jake’s father. So as my guest entry to this blog, I thought I’d take this opportunity to describe our “Epic Story” through the lens of being a dad.
Being the first time I would become a dad, I was incredibly excited but also nervous through the whole experience in the delivery room. We didn’t know if we were going to have a girl or a boy, we still had questions about why he was being delivered so prematurely, and we generally had no idea what to expect from our first addition to the family. As soon as Jake was delivered they rushed him over to the table to get cleaned up and hooked up to all of the machines, but they called me over so I could be introduced to my new son. The second I saw him I knew; my son has Down syndrome. My heart sank, up until then I had always said “I don’t care if I have a boy or girl, so long as the baby is healthy!”, but there I was, looking at my son, not even a minute old, and I had a million unanswered questions. Karyn was still lying on the operating table, and since there was so much commotion with the nurses trying to weigh him, clean him, get him breathing, etc., she looked over at me and with strain in her voice asked “Is he okay?”. I stared down at my son, looked back at Karyn and said “he’s perfect”.
I meant it too. At that moment, I didn’t care about the future challenges we would face, to me Jake was perfect, and I was happy to be a new dad. I didn’t tell Karyn about Jake’s Down syndrome right away, I think in hindsight I wanted her to simply be with her new son and enjoy the first few moments of being a new mom without having to worry about anything else. I also didn’t want to unnecessarily worry her in the off-chance that Jake didn’t have Down syndrome. Maybe it was another diagnosis, maybe it was nothing, I didn’t want to say anything before we had official confirmation from the blood tests. Because Karyn didn’t see Jake until he had an oxygen mask over his face, she didn’t know that he had Down syndrome until the next morning when the Resident Geneticist mentioned the additional testing they were doing. She has since asked me why I didn’t say anything about it when she first asked me in the delivery room. I told her that my answer was my honest answer, in my eyes Jake was perfect and in that moment that’s all that mattered.
It’s strange looking back at that time now that we have had the chance to journey with Jake for almost a year and a half. It feels like a lifetime ago, and so much has changed since then. For the first few months of Jake’s life I went through the typical grieving process that most parents go through when they find out that their child is not going to experience a typical life. I found myself wondering if Jake would enjoy doing things with me that I had always imagined doing with my son. Would Jake enjoy playing soccer? How long would it take for him to even learn how to kick a ball? Would Jake find the same joy in science experiments that I did when I was a kid? Would science be too complicated for him to even understand?
For the first few months of Jake’s life I felt like everything we did was being viewed through the lens of his diagnosis. It was almost like driving a car while staring in the rearview mirror, Jake’s diagnosis seemed to be the focal point of everything. But as Jake grew older and his personality started emerging, I found myself focusing less on his Down syndrome and more on who he was as a person. I think the thing that has surprised me the most is that as Jake grows older I see more and more of my own characteristics in him. Jake seems to have acquired my laid-back attitude towards life, he has the same facial expressions as me, and even though he is still young, he also seems to be developing the same sense of humor that I have (sorry Karyn). When I lie on the floor with him, with both of us just staring at each other, I don’t see Jake’s diagnosis anymore. I just see my son.
I’m looking forward to seeing where life takes us. I know it won’t be an easy journey at times, I know there will be struggles and complications along the way, but I can’t wait to see what kind of man Jake will become. I can’t wait to walk this journey with him, to teach him new things, to share life in all its messiness together. And despite the hardships that I know we will encounter, I’m glad our lives will be different than most. Because for me, I believe that it is the harder paths that are the ones that lead to the epic stories.