This day, one year ago, was one of the hardest days for Tom and I. It was the first full day that Tera spent in the NICU when we had to travel to go see her and when we did, we had to maneuver around the 3 lead wires, the IV, the heart monitor , and the NG tube. People who were coming to visit, couldn’t really see her and even if we could bring them up, it could only be one at a time and only a few people could actually hold her. I was also told that what was supposed to only be a two or three day stay at the hospital, would now be at least seven days. But almost as bad as dealing with all of that, was Tom’s role. While I was taking care of Tera that day, he had the heart-wrenching task of telling all the family and friends that came to visit about Tera’s diagnosis. To this day I’m not sure how he did it, but I do know that it made him my hero. Through the past year we have had to lean on each other more than ever and last night was no different.
As I got Tera ready for bed I started to get overwhelmed by emotion. Considering it hadn’t really happened yet, it shouldn’t have been that surprising. I can’t even say for sure what was making me cry, but I think it was just all the meaning that that day carried for us last year. Yes of course it was one of the happiest days of our lives, but it was also one filled with so much hurt and confusion and pain and one year later, that’s not easily forgotten.
We spent a while after putting Tera to bed talking about how we feel now in comparison to a year ago and what things we still struggle with. We both really think a lot about the future. We have no idea what is in store for us, or Tera, and for two people who researched their vacuum cleaner for like a month, that’s not easy to deal with. And for multiple reasons; not only because we can’t plan for every eventuality, but also because it impacts some of the decisions we make now for our futures. I still struggle with people’s comments at times. We have yet to be at the receiving end of an “unfortunate” comment, but there are still some that bother me. I’ve said this before, but if you are reading this and know that you’ve said this to me before, don’t be upset by it, it’s just a personal thing and keep in mind I’m not a person who gets easily offended, I’m just sharing my perspective. It still bothers me to have people tell me Tera was sent to us because we’re somehow especially capable. I’m not any more special than most other parents. Tera’s extra chromosome didn’t magically appear because we’re lucky, it appeared because it does to one out of every 750 or so babies and she managed to beat the odds. I know there are a lot of rotten parents out there, but there are also some very amazing ones of kids who aren’t “blessed” with an extra chromosome and I’m not any better than any of them because of her situation. We don’t want to be different (well, we kind of make ourselves a little different but that’s not what I mean) from other parents, we just want to raise our kid the best we can, screw up as little as possible, hope that she has a happy and fulfilling childhood, and prepare her to be an adult.
We also talked about the moment that is inevitable when Tera is no longer crusing through the milestones and there actually is some measurable delay. I really feel like the last year has left me completely unprepared for how to deal with that since, for the most part, all of her therapists and doctors tell us regularly that she’s doing great and to just keep doing what we’re doing. As amazing as she is to us, I’m fairly certain that at some point, she’ll be delayed and that will devastate us.
So we both had “off” days at work. Neither one of us was overwhelmingly upset I don’t think, but I also don’t think much time went by during the day that we weren’t thinking back to the events of last year. When I got home with Tera, she played, I got some things done, Tom came home and we had dinner. She did really well with all regular food (not baby food) for dinner, did pretty well with her straw cup, and we Skyped with Tom’s parents. It was a pretty normal night overall which I think we kind of needed. After giving Tera her bottle and getting her ready for bed, the three of us just played together on her bed. She was so incredibly silly, smiley, and giggly, that it made the whole day end on such an enjoyable note.
But it’s not always rosy and Tom says that I shouldn’t hold back (I didn’t think that was possible but he assures me there’s more I want to say at times) and he’s convinced there’s a, “this really sucks” type of post long overdue. And I do believe he’s right. I do often try to end on a positive note, and not that that’s a bad idea, but I’m a very pragmatic person as it is and so when I feel like something sucks, I really should say it. My goal is to share our journey with DS and it’s not always fun and smiley. But today, after reliving all the pain and hurt, I looked at my baby and I know that today, she’s one very happy little girl and I can rest easier knowing that.