It's been a couple of weeks since I wrote much here . . . but its not because I haven't been thinking about blogging. I have been. I've just been a jumble of emotions again, and haven't been able to bring myself to type it all out.
First, the upbeat stuff :o) Two weeks ago, Sammie B and I met two new friends, the mom I connected with via the mommy blog and her daughter that is hypotonic just like our Sammie B. It was SO refreshing for me to see a little girl, almost three, who is doing SO well despite some movement issues/hypotonia early in life. But even more valuable than seeing that was connecting with a mom who truly understands my worries. Who has been right where I am today. Who has had to suit her daughter up in a therapy vest day after day, all the while loathing that damn vest and all that it represented, and just hoping it was worth it. Who has had days where it all seemed okay, and days she couldn't stop the "what-ifs" from creeping in. Such a wonderful connection, and we can't wait to hang out again :o)
Our little family of three had a busy weekend . . . swimming, dinner with friends, a day at the Farmer's Market seeing our friend's singing group perform (the second picture is of Sammie at the farmer's market -- she was watching the performance until I got the camera out and distracted her).
The week ahead is going to be a nervewracking one . . . we have our follow-up appointment with the neurologist (she wanted to see us back in 6 months; I can't believe that time is here already); we have an OT evaluation (we get one monthly) and our regular two PT appointments. The time leading up to these doctor appointments is always horrible for me. I just fear, each time, that we will get some kind of bad news . . . the the rug will get pulled out from under us. And, the anxiety kills me. I can't help but worry. I can't help but obsess. The waiting is the hardest part. And in the appointments, the whole time, I feel tense. . . the doctors/OT/whoever runs through the laundry list of "does she do x? what about y?" and I feel anxious and scared and afraid of what they'll say. I don't like it. Not one bit.
Some recent things that have happened have gotten B and I talking more and more about our experience with parenting. Everyone's experience is unique, I know, but B and I have dealt with adversity we never could have planned on. I've (unhealthy, I know) been allowing myself to go to the "what ifs" again - what if I hadn't worked 70 hour weeks while I was pregnant; what if I hadn't gone to lunch with a friend that day (the day that I went into labor) but instead had stayed home on the couch; what if I hadn't taken the medication to stop pre-term labor . . . what if I'd pushed harder when I was in labor and they hadn't had to use the vaccuum . . . what if what if what if. I KNOW that none of this matters now. I know that science doesn't even back up my irrational fears that I somehow caused Sam's struggles. That I could have somehow prevented them. But sometimes, the what-ifs creep in, and I can't make them go away, no matter how hard I try, or how rational I try to be.
B's perspective (and mine on a healthy-mind day) is that this is Sam's story, and we are writing it together. We don't get to change the beginning, and even if we could, then it wouldn't be Sam's story. I agree . . . I wouldn't change who she is . . . not for anything in the world. But at the same time, I wish I could make the struggling go away. I wish I could make things easier for her. I would do anything in the world to keep her from having to struggle (even though, as B reminds me, she knows nothing different; she's happy; she doesn't know, for instance, that sitting isn't supposed to be this hard!). And sometimes, I just feel so angry with myself for allowing all this worry and panic and anxiety to interfere with my happiness during this precious time that Bean is a baby.
It is Sam's story. I am lucky to be a part of it. But, as I've said before, living a story I don't know the end to, that I can't even really know what the next chapter is, is very very hard for me. So, I struggle. But, we struggle together . . . the three of us. Thank goodness for that. I probably don't say it enough (I know I don't) but I'm so lucky to have B to be the "daddy to my mommy."
I've started following a lot of other mom blogs. There are other moms who've faced adversity like us, and not ended up institutionalized. There are moms who've faced much much worse. And though I don't know them, I learn from them, and for that, I'm thankful.
Sam's been wearing her compression vest most of the time. We put it on her when we dress her, and unless we go somewhere super hot (like the Farmer's Market today), she wears it. We (me, B, nanny) think it's making a difference. Its so hard to tell. She seems to be sitting better, but maybe she's just getting stronger? See the first picture above --- sitting, playing, with NO HANDS!! (I also dig this picture because it captures her little baby mullet we love oh so much). Our feeling is that even if it only helps a tiny tiny bit, its worth doing, because we will give her every advantage possible. But, I hate that vest. Hate it. It's this stupid felt-like thing (made of patented material actually) that comes in three different pieces and is held together with SIXTEEN pieces of velcro. Sixteen. For $500 you'd think they could do better than that. It's a pain in the ass to put on. It makes diaper changes a pain in the ass, and I get irritated every time I do it. I'm not sure if my irritation stems from the "I don't want my child to need this" emotions or just the fact that the thing is really complicated and so not user-friendly. We've borrowed another vest made by another company and its MUCH more user-friendly, so we'll talk to our PT about that as a possibility when we see her this week. Perhaps then I could get through a diaper change with out cussing out the manufacturer of the vest in my head each time.
Our PT was out of town this week, and I'm surprised by how much I missed the appointments. Maybe we didn't plan on it, but the physical therapy appointments and our physical therapist have become a part of our lives. Part of Sam's story.