First the blech, then the positive. If you don't feel like reading spewed negativity, please skip ahead to the end. Must.get.this.off.my.chest. I'm just not a person that can always spew about how wonderful life is on my blog. Because my life is wonderful, but sometimes, even a seemingly "wonderful" life is hard.
The last few weeks have weighed on my heart heavily. As I think I mentioned before, the way the Regional Center does things is that Sam's services (her IFSP) are re-reviewed every six months, after ANOTHER evaluation, which also happen every six months. And, at least once a year (;o)) that evaluation/re-review of services falls at her birthday. I hate that. Like come on people, LET ME CELEBRATE MY CHILD'S F'IN BIRTHDAY. DON'T STAIN THIS WITH YOUR STUPID EVALUATIONS. Blech. Plus, many of our "check-ins" with Sam's doctors ALSO fall around her birthday. So it stinks. I don't want her birthday to be weighted with worry. It shouldn't be. It's NOT FAIR.
So, I decided to deal with this by (1) celebrating her birthday BIG by a family trip to San Diego and Sea World (which was MAGICAL and wonderful and fabulous and all that we needed and more) and (2) NOT even letting myself THINK about any of the other icky stuff - the evaluations, the service review, the check-ups until AFTER HER DAY had passed. But what that meant was -- fablulous birthday weekend then boom. . . the next three weeks or so were spent:
- Checking in with doctors
- Another developmental assessment
- Touring multiple center-based programs multiple times because we knew we wanted her in one
- Asking at her service review for approval for a center-based program
- Waiting on approval
- Not getting approval
- Advocating for approval (fighting, gathering letters from doctors, therapists, etc.)
- Finally finally getting said approval and celebrating
So, a whole lot of shit to deal with on top of trying to just be mom & wife, trying to enjoy my magical little bug and our magical little family, and trying not to suck ass at work. I just felt like I was failing at all of these.
I think I just sort of fell into a really angry place. Like I'd read blogs from some of my (usually) favorite mommy-lawyer bloggers who discussed how much they loved being a working mom, and how the "balance" was working for them, how work fulfilled them, etc., and I wanted to throw something through the computer screen at them and tell them to just try "balance" and "fulfillment" with 7 or 8 therapy appointments a week, constant advocacy at work AND on the family front, etc.
I JUST WANTED SOMETHING TO BE EASIER. So, I was angry. And sad. Sad that its not easier. Sad that I feel this constant pressure to "work" with my daughter. My sweet two-year-old bean. Sad that things aren't coming easier to her (even though as I routinely say, she doesn't know she's struggling . . . she's a happy little girl). And, well, I just NEEDED good news. The news of finally getting approval for the center-based program really was JUST the news I needed, so thank goodness for that.
Amidst our check-ins with our other doctors (her pediatrician + the neuro-ophthamologist), we also had an appointment with a new specialist -- a physiatrist. The main reason I wanted to see one is because our PT (who IS good at what she does but so so opinionated) is completely and totally opposed to using any kind of medical walker or gait trainer for Sam. She said, "I only use them when I think a kid has no potential to walk independently." BUT, the PTs at the center-based program Sam will be going to feel differently (they don't take the hard line approaches to many things our PT does, which has always been something we've disliked about her -- nothing in life is that black & white) . . . they think once a kid is two and NOT walking, they start to lose out on opportunities for cognitive development if they aren't given the opportunity to walk using some assistive device, to be at the same eye level as their peers, etc.
So, to the physiatrist we went because I wanted his opinion on gait trainers/walkers. I asked him if he thought Sam would ever walk. He said he didn't have a crystal ball, but that all signs pointed to "probably yes." Well, of course, in my glass-half-empty/prepare-for-the-worst state, I focused on the "probably" and heard "maybe, maybe not," ignoring the "yes" part. He said amongst physiatrists, the general rule of thumb is that if a kid can sit independently by age 3 (which Sam is doing, since age 1) that they have the potential to walk. He also was impressed by how little assistance Sam now needs to go from lying to sitting, something we've really been working hard at. He said that because Sam's trunkal tone is (in his opinion) still her greatest impediment to independent walking, he really thinks she's going to need a walker/gait trainer to get her started. He said that doesn't mean she'll need it forever or 100% of the time, but that he thinks we should check in in a couple months, and then think about getting one for her. Well, per my usual, that sort of sent me reeling for a few days . . . into that familiar place of worry, fear, panic, sadness, etc.. Wishing I could change things. Wishing I could switch bodies with her. Because really, I'd cut off my leg in a heartbeat to make mobility easier for her.
But as it sunk in and as I researched and researched as I do, I came (again, my usual) to a place of peace. I mean really . . . if she needs a little something extra . . . so what!! He still believes she WILL walk . . . and if there's any little girl that can ROCK a walker, its our little one. So, anyway, her center-based program will have some for us to try out and for her to use during her time there, we'll check back in with the physiatrist in a few months (after the JH appointment) and maybe you'll soon see our sweet Bean rocking a purple (OF COURSE) walker. After letting it all sink in, and getting past the initial sting of her "needing something to help her walk," just thinking about her walking around, purple walker in tow, made me smile. So, here I am . . . coming BACK to my place of peace and acceptance. Funny thing is that B didn't really know what I was talking about with all my talk about walkers vs. gait trainers (he spends way less time on google than I do), so I sent him some pictures, and he came home and said the EXACT thing I'd realized during the day -- "I can just see her with a walker, and she'll be so cute." So, if necessary, our rock star WILL ROCK a walker. And as one of my saint of a friends reminded me, I will NOT let the assistive devices scare me -- they are no more permanent than a high chair or a jumper in the door way. They are just "for now." And if they help our sweet girl along the way - along HER way, then THAT is all that matters.
In the midst of all of this, as I usually do when I find myself pre-occupied with the worry and wonder and panic side of things, I sort of fall into this groove where I roll out of bed in the mornings, don't bother putting on nice clothes but just throw on the first "business casual" thing I see and roll into work with wet hair and do just enough to squeek by all day, in between moments of google panic. It's not healthy. That sort of funk permeates my day and its a vicious cycle of drowned-rat looking hair AND a poor attitude. I know that. But it happens.
But after getting word of the approval for the center-based program and AFTER doing my own research on walkers/gait trainers and sort of coming BACK to my place of peace, I'm finally finally feeling like maybe I CAN get back to my groove in LIFE. You know, like blow-dry my hair, bill some hours, and feel GOOD about myself as a lawyer, mom, wife, friend, person, etc. So, I'm losing the 5-year-old-esque "It's NOT FAIR" and trying to get back to the business of living.
I honestly think that as a working mother, particularly a working mother with a SN child, I'm always going to feel like when I'm kicking butt in one area, the other is suffering. And somehow, I just have to learn to hang in that limbo without beating myself up about it. I'll keep trying.
And, even though sometimes I feel like I just DO NOT have it in me to do any more advocacy, to read another evaluation or to see another doctor, I will. I'll always have it in me. Because I'm determined to be the mama to Sammie B that she needs me to be. And I love being her mama. So, there. Done. Done with all the anger/negativity/panic etc. (though its normal that it creeps in from time to time) and on to working on "getting my groove" back. To getting back to that place I was as a lawyer just after trial this summer, and to taking in every magical second I do get with my sweet Bean. My magical little Bean that melts me on a daily basis.
My heart rises and falls with this little girl. And, that's okay. She's so so worth it.