Phewww! I think I might finally find some time to breathe again! School is out, the Gigi's 5K run is over, and I might, just might, finally find the time to put into words all the thoughts that have been swimming around my head for the past few weeks. Of course, this damn pregnancy brain means I probably won't remember half of what I was thinking about that I wanted to share, but I'll see how it goes.
Right now my thoughts are on the Gigi's event that just happened. It's a great event and it brings our family and friends together, but it is a lot of work. And honestly, until today, I was forgetting at times the whole point of why we do it. It's something I've talked about quite frequently here, but it hasn't changed. Tera has Down Syndrome. I say it all the time to new acquaintances, therapists, teachers, doctors, etc., but I don't always think about what it means; to her and to us. I know what it means of course, we live it, but because it's such a part of our life, it's only sometimes that it really occurs to me what it means. And this is neither good nor bad. I don't want it to be the only thing anybody thinks about when they see or meet Tera, but I also sometimes need to remember that it does make her different.
And it does happen. Saturday night as we listened to Tera crying in her room in what was a bit of a rough night for her, Tom asked out loud, "Can't anything be easy for her?" I wasn't sure at the time if he meant that she tends to be challenging for us frequently, but many times it really does hit us both that this poor kid doesn't get much that comes easily to her. At a friend's birthday party over the weekend as a few people were dragging out a pile of toys for her to play with I commented that it must be nice to be Tera. And then I immediately retracted the statement, because while most of the time I don't think it really affects her that she works so hard, the fact that she does have to put forth so much effort for such little things sometimes, is really hard for us as parents to come to grips with.
Of course in many ways she is like any other three year old, but while many of her peers might spend their summers in swim lessons or learning a new sport, Tera will be in private speech therapy once a week, hippotherapy (which will be a separate speech session, but on a pony) once a week, and she will be starting the literacy program at Gigi's which will help her get ready for reading. This is also her first summer without full time therapy which as her mom, is a relief for scheduling purposes but also makes me a little nervous because I don't want her to regress after all the progress she's made. But I've searched out various sensory activities and we have more than enough strategies to be working on for speech. So hopefully it just gives me a little more time to incorporate some of these new strategies into our daily routine.
Of course no summer with Tera would be complete without an array of doctor appointments. Today was a recheck of a kidney ultrasound for something they thought they saw last year. Nothing screams summer break like a trip to Evanston Hospital so Tera can try and sit still while they get as many images and measurements as possible. And despite the fact that she did great, and of all the procedures she's been through this was pretty low key, I still feel a pain in my heart when I have to hold her down so that she can endure yet another test.
Next week she has her first dentist appointment, her first trip to the Lutheran General Pediatric Down Syndrome Clinic, and a check up with her endocrinologist (which we still have to get blood drawn for). And then I have an OB check up on Thursday (which I'm pretty excited for since I get to guzzle some crappy orange liquid for so they can do my glucose test).
But through it all, I still consider myself pretty lucky that it's not worse. And that I have a job that allows me to spend this time, doctor appointments or not, with my daughter. That I'll have some special Momma/Tera time before the baby comes, and that I get to actually be a full time mom (at least for a few months) instead of a working mom trying to fit it all in but never quite getting there.
And hopefully this time off will allow me to recharge my batteries, reset my priorities, and just plain rest.