When we first started to toy with the idea of starting a blog for our son, the intention was to make it a place where we could post updates about his life (which already shows great promise to be exciting and eventful!). While I am sure we will actually do so in more detail than you get on a Facebook news feed, the more I’ve thought about it, the more I’ve realized that this page is probably going to be more for my benefit than anything else.

I have never been much of a blog reader, other than to peruse tasty recipes which I will probably never make and simply content myself to salivate over perfect pictures, and well staged plates. Which also is one of the reasons why, despite many previous attempts, I have never been much of a blog writer. No. Not lack of follow through (okay, yes, that as well). I am rarely well staged, and I definitely don’t like pictures of myself. Since bringing Conner home, I have found myself reading more and more non-nomnom blogs. Usually a breadcrumb trail that I’ve followed after googling some question that I’ve had has led me to the place where another parent, of another special kiddo, is telling their story.

Some of these incredible parents (and don’t get me wrong I have so much respect for them) come off like that food. Impossibly perfect, with everything so well put together, and while simultaneously being paragons of patience, good will and kind thoughts. Lately? I wear sweat pants and a t-shirt that may in part, or whole, have been worn repeatedly this week and maybe I’ve had a shower in the last few days. I’m not always patient, and sometimes I really mentally struggle. But while I sat in line at McDonald’s today, another lazy and questionable decision I made rather than use my perfectly good groceries at home, I had the epiphany that maybe? That’s what someone out there really needs to read, and maybe I need to write it in order to get it out of my head.

All of this brings me, in a rather rambly and round-about way, to the subject of this entry. When I heard the words ‘Down Syndrome’ come out of the mouth of that pediatrician, sitting alone in the hospital bed waiting for my husband to come back with the car seat we had thought we would be taking our baby home in the next day, one of my very first thoughts was something I have come to be intensely ashamed of. They dropped a lot of bombs on me in that one sentence, but the others seemed like temporary and hopefully fixable things. Down Syndrome was permanent, life changing, and in that moment of shock I was so sure that Doug was going to be so very, very disappointed in his son who, up until that moment, had been perfect. The Doctor was bolting through the door already, leaving me to be the bearer of bad news when Doug got back and to fight my own thoughts in the aftermath of that completely unexpected bomb.

We were offered prenatal testing, but everything was perfect on his eighteen week ultrasound. Beyond that my sister had given me some advice even before that, saying that unless a result would change my desire to have this baby that I probably shouldn’t bother. I agreed. Doug and I had been planning for this little pumpkin practically since before we got married. We were both ready, and desirous, to be parents and start our family. We had talked about it before, and both had said that it didn’t matter to us. Something we repeatedly told OB/GYNs and other practitioners (especially the ones who looked at me like I was completely insane after I moved to North Dakota). But sitting alone in my recovery room bed, suddenly it very much did. What did it mean, exactly? Despite having known several people in my life with the diagnosis, I realized I was completely unprepared and uneducated, and in the wake of that ‘might’ the Doctor had told me, my head was filled with so many worst case scenarios. But mostly, what was I going to say to Doug?

Many well-meaning individuals actually made me feel worse about the situation in the next few days. I really couldn’t see it, no matter how hard I looked at my baby’s sweet, still swollen face, and no matter how many times I said in my head I was just going to assume the tests would come back positive, part of me really still just didn’t believe it. When we were told that Thursday that he conclusively had that extra chromosome, Doug was my rock. I knew, beyond a shadow of a doubt when he reaffirmed that it didn’t matter, that it really didn’t. Not in the most important way. It was not going to change how much he loved that little boy already, and each night I watched him snuggle that tiny little baby. Each time I’d see his excitement over buying a box of books to read in the NICU. Every time I watched him so carefully, and tenderly bathe Conner and brush his hair. So many actions that meant so much more to my heart, and traitor brain.

Sometimes, it takes me a while to wrap my head around something, especially if it’s a change from what I was expecting. I struggled with the idea of moving to North Dakota, and I was struggling with Down Syndrome now being a part of our lives. With dreams that I hadn’t realized I had, until someone ‘helpfully’ pointed out to me were no longer possible, now gone. But I will never, ever forget a conversation that we had sitting in our car in front of our apartment. Those were our dreams, and in reality they were probably more like fantasies anyway. I might have had a picture of an All-Star Basketball player in my head, and maybe Conner would have hated sports. My expectations for this child were not his expectations. Right now, everything that he wants and needs out of life are simple things that we can definitely provide. He just wants, and needs, love and that we could and were giving him.

These last four months, which please don’t get me wrong have been so full of happiness and joy and love that the hard moments are pretty much dwarfed in comparison, my husband has been my rock. He sometimes works more than fifty hours a week, at a job that doesn’t actually end when he goes home for the night. Because of him, I’m able to stay home full time with my little guy, which is what I always wanted anyway but is now even more important to me. He always manages to know exactly what to say to make everything okay for me, even when I don’t think he actually knew what I was struggling with. And while I’m sure I would find it in me to manage to do this without him, I wouldn’t want to. His pride in, and love for, Conner James is inspiring to me. Our son is lucky beyond measure to have this man for his Daddy.