Borderline

If you’ve spend a lot of time in physical therapy (or accompanying a child to physical therapy), you’ve heard a lot about muscle memory. We do the same tasks and exercises over and over in hopes of building both muscle and muscle memory, which will help with strength and eventually make the job itself easier because your muscles remember what to do and don’t have to work as hard. Personally, I think our brains work similarly. It is amazing how quickly we can develop a patterned response to the same stimuli, isn’t it? I am very much a take charge, type-A person and my emotional patterns tend to be a combination of “knuckle down and do what needs to be done” and “I should have done that better”. Determination and guilt – my two emotional companions since childhood. Who knows why? I just know that it’s an ingrained response – emotional muscle memory, if you will.

I spent this past Saturday at a gathering for women looking to let go of their baggage from last year and choose a word of intention for 2020. It’s not lost on me that two years ago, I’d have rolled my eyes at the very notion, but I found it really rewarding. And, through the day’s exercises, it became apparent to me quite early on that the bags I needed to toss aside were packed full of guilt around Pook. I have felt such a burden for that sweet girl. Logically, I know it’s not my fault. I didn’t eat lunchmeat or sushi or drink caffeine and I took all my vitamins and had excellent prenatal care. I held up my end of the deal. There was no way to predict that she and her brother would arrive two months early (even my OB didn’t see it coming) and no warning at all of her genetic challenges. In my head, I know that Pook’s condition is not my fault.

My heart doesn’t really give a crap what my head has to say, though. For nearly two years, I’ve knuckled down and fought for her. Every appointment, every specialist, every take-home worksheet, every possible way to educate myself on how best to help my girl. I have learned an entirely new vocabulary and developed skills I never wanted in the first place because that’s what it took to keep her alive. And, by God, she was NOT gonna die on me. Those doctors who told me otherwise had no idea that they were tossing down a gauntlet or that I was not the sort of mother who’d take it lightly. I have done all of these things because Pook is worth it, but there’s also a bit of self-flagellation involved in the process because it’s horribly hard and emotionally exhausting and somehow I deserved both because I’d failed her and all of this was my fault.

So. At this retreat, I renounced guilt over Pook. I literally set it on fire and watched it fly away. My chosen word for 2020 is tranquility. And today was my very first opportunity to practice that renunciation because Pook had a 90 minute occupational therapy evaluation at the hospital. I knew walking in there that we’d not be at the level of a typical child, and I was right. My emotional muscle memory had me in tears before I even made it all the way back to the car. Pook was utterly exhausted – she’d worked so hard and my heart ached for the way she has to struggle. It just breaks me to watch her fight for every inch of growth and development. (Please God, let me one day have even a quarter measure of her fierce, unquenchable fire. She’s a marvel.) Pook was nearly asleep before I even got her into her carseat so I took a minute to breathe, to pray, to try and find some tranquility in the black and swirly cloud of guilt that had followed me to the parking garage.

The OT scores evaluations on a whole bunch of aspects – gross motor, fine motor, self-care and social skills. The score for a typical child is between 8 and 12, which translates a score of 10 to the 50th percentile. Pook was a 7. The OT kept referring to Pook’s results as “borderline” and I was awash in emotional muscle memory guilt. What could I have done better? Done more of? How could I have failed her in this? This is, quite literally, my job. And she’s borderline. Not where she needs to be. Obviously, this was on me.

But in the midst of my prayer and my search for tranquility, another perspective occurred to me. Pook has defied every odd and statistic tossed her way. And the majority of that is because she’s just doggone amazing, but the sheer volume of therapists and specialists and surgeries and treatments plays no small part, either. Pook is where she is because we have worked out butts off. She and I together, we decided that nobody was dying on our watch. We decided that no one could tell us she’d never do anything. So a score of 7 might be “borderline” for the therapist, but as far as I’m concerned, it’s seven points more than she’d have scored if we’d listened to those NICU doctors. It’s light years ahead of where she’d be if I hadn’t fought for four months to get her g-tube, which literally saved her beautiful life. It’s a thousand points ahead of dead. Borderline, my ass. My girl is a freaking rockstar.

I came home today with more handouts. More work. Books to read, new exercises and activities to try, more to incorporate into our daily routines. And my emotional muscle memory again raised it’s head and said, “Don’t you think we need to get started on this? Isn’t this why you’re here and not at a career? Don’t you need to earn your keep?” And that tranquil voice simply replied, “No.” So I took a Xanax, I had a good cry, and I took a nap with my babies.

Tomorrow, we regroup and make a new plan. Tonight, I’m on the couch with an old quilt and contenting myself simply to be. Tranquility doesn’t mean things are always peaceful, but it does mean that I can find an internal place of peace amidst the maelstrom. May it be so.