Yesterday morning, I was feeding my little guy and as is usual for that 7:30 AM feeding I wasn’t paying a whole lot of attention to what was going on. Typically, I will either put something softly on the television (British Baking/Cooking is MVP and my current obsession), or just space out watching him eat. Then I realized that at some point, not only had the burp cloth/bib slipped away during Conner’s wriggling, but there was no resulting puddle of milk. None of the usual dribbling and sloppy eating, except when he turned his head to check out the racket our dog was making with a toy on the other side of the room.

It felt like at some point during the night my baby had gotten a new skill point in Nursing, and I couldn’t help thinking about one of the strange photos mixed in with the hundreds of shots of my husband, dog and child. Sometimes when I page through them, I think ‘why is this even on here?’ or ‘why am I letting this fill up space on my phone?’ I never delete it though, because it’s a reminder of exactly how far we’ve come. Much of the time that Conner spent in the NICU was due primarily to feeding issues, and he had a feeding tube for a good chunk of his stay. Anytime he was awake for a scheduled feeding, we would try to give him his bottle and a lot of the times it was very frustrating. Knowing that him eating and gaining weight was the giant check box on the go home to-do list meant that I felt so much pressure to get him to eat, and sometimes he just wasn’t interested. From the day he was born, Conner’s had a very distinctive ‘gate closed’ set to his mouth that lets you know when he’s had his fill. It was adorable, and still is, but it was also disheartening at the time. So the very first time that he actually took enough of his bottle from me to not have to have the rest in the feed tube was a huge moment of celebration, and marked with that photograph that I will probably hold onto forever. I was so proud of him, and I was so proud of me.

Doug and I were warned that with Conner’s diagnosis we would probably be spending a great deal of time in doctor’s offices, or at the hospital. That was something that really hit home for me one particular week, when all three of us were sitting at the ER, waiting for the baby to get some fluids to flush his little body. It wasn’t an emergency, just a part of a CT scan he had done, but I couldn’t help commenting to my husband anyway. That this might be our life. Down Syndrome. Emergency Room lobbies and endless trips to the doctor to try and deal with some issue or another. Don’t get me wrong, if that’s what I have to do for my baby then I’ll fix my ponytail, buckle down and get to it, but it isn’t what I wanted for any of us. It also made me recognize a line I will probably walk my whole life going forward from now, because I don’t want to let Conner’s diagnosis be our life. At the same time, I want to be an advocate and push, and fight, for everything he needs or wants out of this life. Much like knowing when to trust what the Doctors were telling me, or recognizing when it’s time to fight for what my instincts said, as I had at the NICU when they didn’t think the time was right to put the baby on ad-lib feedings.

This week feels like a life at the doctor’s office to a degree, but that’s because some routine checks and special tests just happened to all line up in a row. It ends up that way often for us, where we’ll go a month or more with nothing, then two weeks will feel like non-stop trips. I’m grateful that Conner is so easy and happy in his car seat! Last week, he had his four month well baby check, and some vaccines and everyone cooed and gushed over how great he looks. This week, his social schedule is very full between appointments with doctors and early intervention, Baby Rhyme Time at the library, and his baby sign language class.

I normally do not stress a whole lot, but yesterday when I was talking with our early intervention coordinators I realized what a big week this actually is. The two big health concerns for my little dude are the structures and function of his heart, and then the oxygen he’s been on at night for apnea. This morning we saw his cardiologist and had an echo and an EKG done and next Monday we make a trip out to Minneapolis for another sleep study to determine if the o2 is still needed. A prayer I’ve said so many, many times these last four months is one that I’ve had in my heart this week especially. That Conner’s body will have grown and function better, as both conditions the doctors said there’s potential for him to grow out of on his own. Or that I will feel peace, and have the strength to deal with what comes after if it has not. I’m so grateful for how calm I have felt this morning, and for being able to enjoy moments like him smiling at, and playing with, his Doctor rather than just freaking out and waiting for news that ultimately, like his time in the NICU, I know is completely out of my hands.

Instead, I’m just going to look forward to Easter and an excuse to dress Conner up in the adorable little suit his Grandmother sent him.