Yesterday was a day. It started with a fairly crappy PT session. Sam usually does fabulously well in PT (and LOVES being on the treadmill) but even that made her cry yesterday. I knew she was tired--she's had a few late nights lately--in general we haven't been good about the 8:30 bedtime, including last night, even though therapy was at 8:30 am. And besides, I know KIDS have crabby days. TYPICAL kids have days that everything makes them cry. But for whatever reason, this one made me feel all sulky and sad. Maybe because I'd dressed her in her Team Sammie B shirt from the MOD walk, thinking it would have good PT vibes for sure (there I go trying to control the uncontrollable, again, right?). So, I came home, posted something on my facebook page, and on one of my mommy boards, and of course got tons of messages from my girlfriends reminding me how far we've come, how much promise there is in the future, etc. I'm eternally grateful for those friends that remind me to keep on keeping on. That see Samantha for the beautiful, loving, charming, funny, magical little girl she is, and not for her struggles. That see the PROMISE.
I also happened upon a blog written by a mom whose son has cerebral palsy. She wrote about how she got from where she was years ago when he was a baby and a toddler (a place she describes as filled with worry and darkness) to the place she is now (well-adjusted, and a place of peace). And so, I'm hijacking (though giving credit, see link above!) (I hope she doesn't mind) her list, adding some of my own, and making them into present-tense promises to myself, and to my sweet Bean:
• I will talk about my worries and my grief. I will reach out to friends and family when I need them. As I mentioned above, I have a fabulous group of women in my life, not all close by, but all just a phone call or email away, ready and willing to listen, and to remind me of the PROMISE that lies ahead even in the midst of uncertainty.
• When I have moments of fear about the uncertainty, I will find new ways to savor my sweet Bean (an easy task). We will walk outside and blow bubbles. We will lay together and giggle, or I'll snap a quick picture of her brilliant smile. I will not let the fears of the future overshadow the fact that I have an amazingly delicious little girl. I will not let the therapy appointments (good or bad) or the doctors appointments overshadow the pure love and joy felt every single day in our home.
• In the moments where I feel like, "why does MY child have to struggle?" I will remember that SHE doesn't feel sorry for herself. She is perfectly content. She doesn't know that movement is so much easier for other kids, she's content. Happy. Well-adjusted. Safe. Loved. Loved beyond belief.
•I will NEVER EVER underestimate my Sammie B, or lose sight of the PROMISE that lies within her and ahead of her, and I will surround myself with people that have the same outlook.
• We will be her best cheerleaders, and her best advocates. We will (and have been) put together the best team of experts we can find. We have (and will continue to) research doctors and therapists. If someone doesn't work out, we'll find a replacement. We'll fight the insurance company, the regional center, whoever we need to fight to make sure she gets the quality treatment she deserves. That she gets EVERY step up she can. (I will use this as a means to feel a little bit of control over the uncontrollable).
• I will try not to beat myself up. Between all the therapeutic exercises experts give us, I could easily spend 24/7 working with Sam, but I know I cannot. I will do my best, and I refused to feel guilty about not being able to do every single thing. Putting all that pressure on myself will only made me more stressed, will keep me from enjoying my time with my sweet Bean, and won't do her any good.
• I will quit paying attention to major milestones. [I deleted my subscription to Baby Center updates months ago.] I am only torturing myself by comparing what Sam should have been doing with the reality of her delays.
• We will continue to celebrate the little, every day progress. The progress that sometimes is so slight it could go unnoticed (but not by us!), or the progress that's going on that we can't see, but the progress that is undoubtedly there. The inchstones.
• When I need to, I will hunt down happiness. If I am bummed out, I'll talk to someone to help me remember the BIG things Sam is doing.
This other mom wrote that she "finally got to acceptance. It came excruciatingly slowly because it kept head-butting with hope—my hope that Max would completely prove the doctors in the NICU wrong. As time went on, and it was clear Max had challenges, I readjusted my hopes. I was no longer looking for the miracle; I just really and truly hoped that Max would keep on improving. And he has. As our saint of a neurologist has always said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing.""
So, Sammie B, I look at you.
May I be that strong. May I reach that place of peace. Somedays I think I'm there. Others, the worry and wonder take over, but Sammie B's smile heals me every single day, just as Max's smile healed his mother every single day.
This smile . . .