I haven’t posted in quite awhile, mostly because at night, when the world is sleeping (when I would usually steal time for a blog), I’ve been working. I feel like I work all the time, but somehow the end of the months keep sneaking up on me and my billables are lower than I want them to be. Somehow, what felt like a BREEZE pre-Sammie B (a 200-hour billable month) suddenly seems IMPOSSIBLE. I’ve been working nearly every night after our little Bean is sleeping, and that stinks b/c I’m tired all the time and feel like I get no time with B, but I guess we are surviving. We all are. I’m working on making some changes so that things are a little easier on the work-front, and thus better on the home-front, but that will have to be fodder for a later blog.
We’ve been busy. My parents came to celebrate Sammie B’s birthday with us, and we had a HUGE party. Seriously, it was a blowout. I don’t think B or I really grasped what 10+ mini-people and 45+ adult-people in our house would feel like, but it was chaotic. Fun, but chaotic. We admittedly went over the top. We decorated with pink and purple, and Sam wore the CUTEST party dress and pink mary janes (which she loved; so much in fact that we almost couldn't get a party dress picture because she kept reaching down and grabbing her shoes, totally fascinated with them!).
And we had live music entertainment which was a hit. Funny thing . . . Sammie B smiled for every picture all weekend while my parents were here . . . but in pictures from the party, she pretty much just looks like, “what the hell is going on? why are all of these people at my house?” We’ve had an amazingly wonderful and intense year, it called for a blowout kind of party.
I made Bean a gluten-free cupcake for her birthday, and she loved it. Good thing she’s never had real cake (thus doesn’t know what she’s missing) because I tasted that cupcake and it left a lot to be desired.
We also had Sammie B’s one-year PT evaluation. It was both encouraging and discouraging. She rated at her adjusted age, or a little ahead, on everything EXCEPT gross motor. No surprise really. But, she’s only at 6 months gross motor. The numbers always make it seem so real, and a little depressing. I think any time that your child is being “evaluated,” it just sucks. We work so hard with her, and then sometimes, the numbers feel like a punch in the stomach. But alas, we’ve made GREAT strides since her first evaluation five months ago, and we’ll keep plugging on. The evaluations are just a hard part of our reality.
I’ve been in a good place most of the time lately. Sammie B really has just turned into such a fun little person. The laughs (especially when we say “no!”). The squeals. The smiles. The mimicking. The flirting. The amazingness that is OUR Samantha. I stared at her this morning and thought, “She is such a Samantha.” It’s so funny - I ALWAYS wanted a little girl named Samantha. But, I never had an image to put with that name. Even when I was pregnant, we knew she was “Samantha” but we didn’t have a visual. And, when she was first born, I often wondered if she looked like a Samantha. But suddenly, as she’s become this little person, I know, she’s most definitely a Samantha. She’s OUR Samantha. With her bald head, lavender glasses, and infectious little giggle. She’s part silly, part serious, all fabulous. She’s Samantha. And, she’s on her own little journey on this planet. B and I are just fortunate to be along for the ride. And although it’s a crazy ride at times, it’s the best ride I’ve ever been on. And I wouldn’t get off this ride for anything in the world.
But, I say I’m in a good place “most of the time” because there are moments (fleeting moments most of the time) where the panic and worry creep in. I’ll have a sudden moment of panic, whether it is thinking about the evaluations, seeing a child in a wheelchair, whatever, and suddenly, I’ll think, “what if she never walks? What if they are missing something?” But honestly, it doesn’t matter, and I know that. NONE of it matters. I don’t have a crystal ball, no matter how much I’d like one. But no one does. My brother’s best friend in the world shot himself at 22 years old. His mother didn’t have a crystal ball. My cousin was in a car accident in his 20s that left him blind. His mother didn’t have a crystal ball. So really, we are all just riding along on whatever journey life hands us, and worrying and obsessing about the many “what-ifs” is just silly. So, I won’t let myself do that. Learning to not allow myself to do that will likely be a life-long process for me, but like everything else, I'll keep working on it.
I had a long conversation with Sammie B’s PT about what is and isn’t comforting for special needs parents to hear. She knows how hard these evaluations can be, and was asking what kinds of things comfort us and what things do not. I told her (and I actually meant it, which felt good) that I’m doing okay. I’m okay with the scores. They are what they are, and we just keep trucking. But, it got me thinking . . . what things do make me feel better, and what just doesn’t? I realized the most irritating thing is when people hear (or read) about our story with Sammie B and they act like they pity us . . . like “oh poor you, what terrible things you’ve been through. . . .” Yes, its been a tough year, but I HOPE that I convey to my friends, family, etc. that its also been an amazing year. I know I have to some of you, because I get these amazing comments/messages from you that show that you GET what a FABULOUS time we are having with Sammie B too. That you GET that this has been the absolute best year of my life. You don't focus on the struggles, you get that I NEED to talk about those, but that those experiences aren't what defines my family or my child or my experience as her mother. For that, thank you. If you are my friend/family member/a random internet and you find you don't know WHAT to say . . . then, to you I say this, "Does my Bean LOOK sad? Do we LOOK like we are not enjoying our lives?" Focus on what a magical little Bean I have and how much love and joy she’s brought to our lives, not the obstacles we've faced. Those obstacles do not define us. They are, to quote this year's LA March of Dimes' speaker, just "minor inconveniences on [Sammie B's] way to conquering the world."
And for god’s sake, don’t tell me that my struggles make you grateful for your own children/life/etc. My path is mine, yours is yours, and I wouldn’t trade my journey for anything. It is ours. Saying that hearing about Sammie's struggles makes you grateful is akin to (in my mind) saying, "I'm so glad I am me and not you." To that, I say, "me too." Because I wouldn't want to be anyone but who I am, or to share my life with anyone other than the Bean and B.
We are doing OT with Sammie B once a week (in addition to her two PT sessions) and it is going well. We are much less involved in those sessions – I think it is just the therapist’s style. So, instead of being right there working alongside the therapist, we really are just observers, which has provided us with a different perspective. Sometimes, I look at Sammie B playing with the therapist and I can’t believe how old she looks. She will often do something good in therapy, and when the OT says, “good job,” Sammie B just BEAMS and looks over at me (and usually our nanny whose there also) like she’s making sure we are watching. I may wish that I didn’t always feel like we are “working with” Sam (b/c that’s a heavy burden) but really, this has been such a learning experience, and we are so so fortunate to have such amazing people on our little TEAM SAMMIE B!!!
Because she only has OT once a week, the OT also really notices the progress in between sessions, which is cool. It seems like Sammie B gets a tiny bit stronger each and every week.
She’s not wearing her compression vest right now . . . it had gotten way too short, and I just felt like it had to be a waste to put this ill-fitting thing on her every day. We are meeting with LA’s “expert” in this type of vest for a fitting, and may invest in the next size up. THIS is where I wish I had a crystal ball . . . just some SIGN as to what we SHOULD do would be nice. Even if this thing helps only .1%, I will do it, but I just wish I KNEW . . . but I don’t. We are going “vestless” for a few days and all trying to gauge whether there’s any difference, but what if its so subtle that we miss it?!!!
I'm going to end with some really great PT pictures from Monday . . . PT is a HUGE part of our lives, and these pictures make me smile (as our PT said Monday, Sammie B is a total little worker bee, and she's working SO hard in these pictures). These are also pictures showing (in PT-speak) Sammie B's "protective reflexes" which are emerging in all directions -- that's a GOOD thing, and its also progress. She definitely couldn't do this 5 months ago!
Go Bean Go!!!
And in one LAST little bit of news, the Bean has decided pacifiers are so last year, and she's given them up. On her own. Apparently, now that she's one-year-old, she just doesn't need such "baby" things. . . now if only we could interest her in a sippy cup!