Today I watched--from the pool deck--as Awesome (10 yrs old) floated on her back from one end of the YMCA pool to the other (the deep end) and back again. This was big--for both Awesome and I--in so many ways.
For Awesome it was big because it was the first time that she'd swum across the pool without stopping. And it was double- or even triple-big because she'd set the goal herself and then diligently spent 10 minutes perfecting the skills she needed to accomplish it (without fanfare and without telling me what she was doing). And then, when I objected to her venturing into the deep water, she looked me in the eye as if to say--"I know exactly what I'm doing so don't stop me"--and, all on her own--without her instructor (who'd already left the pool) watching over her--she simply did it. She floated from one end of the pool to the other and back again on her back.
This is even bigger because this is the same girl who, at her swim lesson just two days earlier, couldn't sustain floating on her back--without her instructor's help-- for more than a couple of minutes.
Wow! Awesome, just Wow!!
For me, today was big because of Awesome's accomplishment (what parent wouldn't be proud?!), but also for a different reason.
In the same way that Awesome has been diligently practicing and strengthening her swimming skills and overcoming her fears in the past two weeks, I've been very self-consciously and diligently practicing and strengthening my hands-off parenting skills and overcoming my own fears in doing so.
Should I add the phrase...."with a child with epilepsy"...to my last sentence? No, I won't because, having epilepsy has little to nothing to do with Awesome's accomplishment and so it doesn't belong here. In fact, I am more and more determined to (responsibly) facilitate Awesome's taking back some of the territory that we had, in fear, ceded to epilepsy.Safety, yes. But not at the cost of strangling the beauty, joy, and wonder from Awesome's childhood. And not at the cost of strangling the beauty, joy, and wonder out of the beautiful process of Awesome's becoming. Becoming what? Just becoming. All children are in the process of becoming. Of growing up. And becoming the person that they already are and are meant to be. I am more and more determined to be all about safeguarding that becoming....despite epilepsy......or maybe even because of epilepsy and the danger it represents in stifling or hijacking that process of becoming. Safety, yes. But taking Awesome's life back from epilepsy, even more so , yes! And facilitating Awesome's becoming--her enjoyment of her childhood and life--even more so. So absolutely, yes!
It's been a stretching last few weeks for me in this regard. I can start to feel myself maturing as the parent of a child with epilepsy. I'll save my ruminations on the longer process for a different post; for this one, I simply want to concentrate on the process of the last two weeks. This process of practicing and strengthening my hands-off parenting skills, of overcoming my fears, and of clearing the way so that Awesome can take back her life from epilepsy.
Watching Awesome swim across the pool today was a kind of a bump up to another level for me--a really big step after a two weeks of smaller but also big steps.
The first big step--which required a huge effort of letting go for me--occurred last week. Awesome went off alone (meaning, without me) for the first time for an afternoon at her best friend "Ellie's"--house.
In some ways it wasn't really a first. Awesome's played at Ellie's house alone (without me) many times. But that was when Ellie lived next door. And since Ellie had lived next door, if Awesome were to have a seizure emergency (all her big seizures are seizure emergencies) I could easily be there--out our door and in Ellie's family's door--to make the necessary judgments and handle the rescue meds--in less than a minute.
But now Ellie and her family live in a different house in a different neighborhood. That new house is a 15 minute drive--more like 20-25 minutes with traffic--from ours. And, of course, that means that if Awesome were to have a seizure emergency while at Ellie's, I wouldn't be there.
For the last year and a half since Awesome's seizures began again, I've trust Ellie's mom Lisa to watch Awesome closely enough to notice a seizure within the first minutes. Now I also have to trust her to do what needs done if Awesome should have a seizure. I have to trust Lisa to administer Awesome's emergency meds, and to watch Awesome for signs of trouble--and to make the judgments involved in both of those things. Judgments which are NOT necessarily all that easy.
It really helps that Lisa, Ellie, and their family lived right next door to us for 9 years (since before Ellie was born). Awesome and Ellie have grown up together--and our families know each other well. In some ways we are like family. And so I do trust them with Awesome. I really do. But it's still hard.
The hardest part is that I also have to trust myself to be good with not being right there if Awesome has a seizure. And I have to trust knowing that I'll be frantically driving to Lisa and Ellie's house while all that drama and judging takes place. Which is a lot to ask of myself as a mom.
But I did manage it last week (with no seizure--which helped). I can't say I wasn't nervous. I was. But it came off without a hitch. And Awesome and Ellie--who consider themselves not only BFF's (best friends forever) but also honorary sisters--had a wonderful time.
And so we took back a little of Awesome's childhood from epilepsy last week. And I practiced a little flexing of my parental letting-go and letting Awesome muscle.
And there was even more taking back and even more parental muscle flexing last week as Awesome also restarted swimming lessons. That was really hard. Letting go while Awesome was in the water made sending Awesome off to Ellie's seem easy. That first day at swimming lessons, I held my breath a lot (literally--so that I had to remind myself to breathe). Shannon, her swim instructor knows that Awesome has a seizure disorder. Shannon was right beside her, watching her. And a lifeguard also sat right there at poolside watching carefully. But it was still hard for me.Shannon doesn't want Awesome to fear the deep end--she wants her to be confident in her abilities, and so Shannon and Awesome went freely to the deep end and back repeatedly while I sat on the bench and practiced my relaxation and intercessory prayer skills.
The hardest thing was watching Awesome learn to tread water--in the deep end. I tried not to hold my breath the whole time that Shannon slowly counted to 12. Or to worry as Awesome's head slipped under the water--only to bob up again a second later. But the scariest thing of all for me last week was contemplating the fact that these first steps I was sweating through are only the beginning of the journey of letting go. (I have to say that my learning curve has been steep--what was worrying me last week didn't worry me this week--no more breath holding for me during lessons!)
But, it's time to ask this of myself. It's time for me to start letting go. In this way. And in other ways (I'm planning another post about seizure monitoring and all the ways that technology will be helping Awesome and other children with epilepsy take back their lives from epilepsy).
It's time for my husband and I to start giving Awesome more independence. And for us to get back to growing her sense of possibility. For us to turn back onto the road we were on before epilepsy reared its ugly head again about two years ago. It's time to stop letting epilepsy force us onto a dark, fearful, time-wasting detour. Perhaps that detour was necessary for awhile in the beginning, but if this is a long term thing, we can't stay there on that detour. We've got to forge our way back to the main road. It's time for us to no longer allow epilepsy to limit or push Awesome around any more than it absolutely has to.
In this, Awesome's pediatric neurologist has been helpful. He tells us that he doesn't limit his patients' participation in activities. He doesn't tell them that they can't or shouldn't do various activities. And so he has patients who play football and soccer, who dance, who swim competitively, and who do about everything. When we asked about Awesome and competitive swimming (three of Awesome's brothers have been competitive swimmers), he said he didn't see any reason not to go for it so long as she's closely supervised. He said that the way that seizures work, it was very unlikely that she'd have a seizure while swimming--while her heart is pumping hard and her blood is flowing well. (He said he couldn't promise what would happen while she's hanging on the side of the pool with her friends between sets--but that she'd just have to be watched more closely then.) We have the go-ahead, but both Awesome and I have some maturing and journeying and growing to do before that go-ahead might be a reality. (But we're on it..)It's easy to keep a child alive by keeping them safe; it's harder to keep their spirit and sense of the beauty, wonder, and joy in life alive. It can all be a gamble. A balancing act. But then, isn't all of life--whether you have epilepsy or not--a balancing act? We would all be safer if we never traveled by car, plane, boat, or train. We'd all be safer if we sat in hermetically sealed padded cells. We'd all be safer if we limited human contact so as to avoid getting sick with diseases, bacteria, and viruses. Almost everything we humans like to do has its inherent dangers. But we don't stop doing the things we like to do. We take reasonable precautions to cut the worst risks (helmets, seat belts, the buddy system, guide wires, air bags, emergency plans, etc.). And then.....we do those activities. And we enjoy them. Because we all live only once. And because life is meant to be lived and enjoyed.
We want to live life not only with our bodies intact--but also, our spirits. Our sense of wonder, joy, and possibility.
And so today, I and the lifeguard, stood on the pool edge, watching Awesome float across the deep end on her back with no one beside her. And when I lost my nerve for a moment--what if Awesome suddenly lost HER nerve in the deep end??--and told the lifeguard (a buff young man twirling his his whistle on a string around his fingers) whom I was walking past as I tracked Awesome, "You know, she can't swim," he good-naturedly set me straight by saying, "She can't swim, but she CAN float. You don't have to swim if you can float ." He was right, of course.
Still, few seconds later when Awesome faltered and lost her nerve for a second, the fact that he sprang from his chair at the ready, made me feel better. Awesome quickly recovered her composure and calmly continued on to the wall at the deep end.
When she grabbed onto the side and came upright again, she looked my way. I smiled at her and gave her the thumbs up sign. A moment later, she launched herself again, on a trek back across to the other side of the pool.
I still watched her as she came back. And the lifeguard, back on his seat now and again twirling his whistle, watched her too.
But this time I watched her in a different way as she floated back the entire length of the pool. I watched her not as a child with epilepsy--a floating time bomb that might start ticking and need to be diffused at any time--but as a person who had just set and accomplished a goal, a swimmer to be, and person of competency who was--if I could just clear the way for her and stay out of her way myself--becoming the person she always has been and has always been meant to be.
I let go and let Awesome.
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