As I sat at Children's Hospital with Sam today and had a little picnic with her before her PT session, I looked at her sitting, in big girl chair at a big girl table, and I felt so proud. She looked like such a little girl. Not a baby, but a little girl. I stared at my big girl in awe and had to stop to snap a few pictures.
As we sat there longer, I found myself focusing less on how awesome it was to sit next to my big girl at a little table, and more on the fact that sitting there, she was wobbly, and my heart went from happy to hurting in an instant. I thought about how hard it must be for her to focus her eyes and pick up food when her body is wobbling. As I've said before, it is not that I want more from Sammie B, I want more FOR her - an easiness that she hasn't yet known. And as I sat there, watching her eat, I was just struck with how something so mundane as picking up her food is made more challenging because her little muscles don't always do what her brain wants them to do. Because balancing in a chair takes work for her. And my heart just hurt. Plain and simple.
And, then we went on to her PT session . . . and I looked around the room. PTs working with a (probably, I'm guessing) 12-year-oldish girl on sitting independently. Another similar-aged girl, non-verbal, with a shaved head and huge scar, probably from a recent brain-surgery. And suddenly, I was hit with it . . . perspective. A reminder about all of Sammie B's "cans" . . . Not that this was the first time I was hit with it . . . it happens often. There's always that "it could be worse" sentiment or the "at least she can do x," or whatever, and don't get me wrong, I am grateful for every single one of Sammie B's cans. EVERY one. For EVERY word that comes out of her mouth, every giggle, every smile, every joke, every song. All of them. We have so many friends on this journey who haven't yet heard their little one's voices, so I am always mindful that Sammie B's voice and every single one of her "cans" is not to be taken for granted. But sometimes, like today, I also just have to give myself permission to let my heart hurt that other things don't come easily to her. That she has to work so hard to sit in a chair and have a little lunch. To sit and notice her wobbling and have my heart just ache because I can't make it easier for her. And I want to . . . so so badly.
Our now twice-weekly trips to a Children's Hospital are sure to keep bringing the lessons in perspective. As I sit there, I'm fully aware, looking around . . . that none of us want to be there. We all wish our children didn't have a reason to make trips to that place. We're all, truthfully, a little jealous of other friends who've never had to step foot in a Children's Hospital, or never had to seek out specialists and therapists. And today, I have to give myself permission to just admit that I wish my Sammie B didn't have to be there. That instead of spending our Wednesday at a therapy appointment, we'd been at the park or the zoo or the pool, or just sitting at home. Of course, I wouldn't trade my Sammie B for a million afternoons at the zoo (or anything else) but I would give a limb or an organ to make things easier for her. Still though . . .
I'm grateful we are there at this amazing Children's Hospital to get help. To meet with a fabulous therapist who does everything she can to make therapy fun, and then we go home. We are there to work toward progress. And to make more of Sammie B's "can'ts" into "cans" that we can celebrate. Perspective.
The challenge in all this is to not let the moments of that "I wish I could change this for her" and the achy heart that goes along with that get in the way of enjoying the moment. Stop me from enjoying my little picnic with my girl. Because she is oh-so-enjoyable.
There's something about this journey, and the other mothers. It doesn't matter how different our children's journeys are, somehow we support each other, we all "get it." I've mentioned before that I'm on a support board for moms of children with delays. On the days like these . . . the days I have to just admit "this sucks, and I wish I could change it for her," I can go there, post how I feel and have 10 messages within two hours that truly do lift my spirits. I've also now been lucky enough to meet some of those women in person -- a few that live locally, and I've even had meals and drinks with moms in DC and Baltimore :o). And, there are a few others (HOUSTON! NYC! NOR-CAL!) that I'm just determined to hug in person someday. We've shared spios and theratogs and walking wings with kiddos in Michigan, Ohio, Nebraska, and Iowa. I've sat outside assessments and sent texts like, "Just about to walk into the evaluation, and I think I might puke," to these mamas (and got great texts back like "ugh, makes me want to puke to just think about it."). These women get it, and I'm so so lucky to know them.
One of the moms from my board recently posted this on her facebook page. I happened to open the link while sitting at a (long) stoplight, and I had to pull over to read when the light turned green. Tears streamed down my face. Because although the author's daughter's issues are more severe and quite different than Sam's, there's that common thread . . . we wish we weren't sitting in Children's Hospitals. We wish we could make it all easier for our children. We start out feeling lost on this journey, and over time, we thrive. Thrive. I forwarded this on to B (which I rarely do) and he loved it. He sat and read with tears in his eyes, and then he forwarded it on.
I've been BOTH of the mothers in that post. I've been the new, lost mother, not believing that I was seeking out a neurologist to take my 7 month-old to see. And, now, I'm the mom that (I think) is coming out on the other side, and thriving, right along with my little family and our "new normal." Thriving doesn't mean that there won't be moments of heartache and "this sucks that I can't make this easier for her," but I guess (?) that I own those moments and those feelings, and move on. And, that's just what I tried to do today, though it did take some support from other mothers to get me there. . . and for their support, I'm oh-so-grateful.
I've been the mom offering support to a newby mom on this journey, and I've been the mom getting it. It is a "club" we never thought we'd be a part of, but one full of amazing people.
Recently, I walked into the restroom at a restaurant (ironically after we'd just come from an appointment with the physiatrist where we'd talked about gait trainers and equipment), and happened to walk in behind a young girl (again, guessing but probably 12 or 13) pushing her walker, with her mom walking closely behind. I looked at her, and my heart thought "oh please let my Sammie B learn to use a walker if that's what she needs," and I noticed that the mom had noticed me watching. I didn't want her to think I was staring to be rude, so I said, "my little girl is almost three, and we are struggling so hard to get her walking, seeing her with that walker just gives me such hope and makes my heart feel so happy." And then, the tears came. And they did for the other mom too. She touched my shoulder, and said, "Oh bless you, I understand. It's been a long road, and I remember the day my daughter got her first wheelchair, and I sat in my car and sobbed. But that wasn't the end of the story. She's worked so hard, and now she's using a walker."
Her wheelchair wasn't the end of the story. No piece of equipment is the end of the story. The image of that girl, with her walker, is etched in my mind. I wonder if that mom realizes what she and her daughter did for me that day. What they gave me in those few quick moments in the restroom. Hope. Optimism. Perspective. NOTHING that happens at three-years-old is the "end" of this story. The sky is the limit, and Sammie B has a lifetime ahead of her to turn "can'ts" into "cans" and to reveal to US what her potential truly is. We are just here to enable her to reach it.
I'm so so blessed to have my magical little girl, who enjoys a picnic and who makes me giggle. I'm so so blessed by every single one of her "cans," and for all the limitless possibility ahead.
I'm also so so blessed to be on this journey with such amazing mothers to support me, to teach me, to be my friends, and to give me some healthy perspective on the days I need it most.
Sammie B - I am so grateful for your every "can," and as your mama, I'd give anything to make the "can'ts" come more easily to you. To make your little body cooperate with your brain. Although I can't magically do it, I promise you this . . . mama will be right beside you, cheering you on through life, doing everything I CAN do to enable you. To help YOU accomplish all you are meant to do in this world. I love you my sweet girl. With all that I am. You make me feel so very happy and proud. Every single day.