Coach Camryn, who is throwing marbles into the water, shadows the shark, who is practicing blowing bubbles with his face half submerged.
As I watch, Awesome bursts to the surface. She's there long enough to look up, smile at me, and gulp another breath of air before disappearing to the pool bottom again. She's having a great time. As the foursome complete the lap, Awesome comes to the surface all smiles and happiness, and deposits a dripping handful of marbles into Coach Camryn's outstretched hand. Who wants to be the shark this time? Awesome doesn't; she wants to continue to be a mermaid diving for marbles. Another little girl readily agrees to be the shark, and the four start another lap down the length of the pool.
As I take up my position behind Coach Camryn watching Awesome for signs of unwelcome trouble, the sun is warm on my face, and I feel a joy like I haven't felt in a long time.
**********************
Is it crazy that we're seriously considering signing our child who has intractable epilepsy up for swim team?I've asked myself this question too many times to count in the last year. I've argued it one way in my mind. I've argued it the other way. I've sat on the fence. I've walked away from the question. And I've returned to it. Over and over again.
My husband David and I, together with our adult sons, debated it among ourselves.
And so too, I've asked our daughter's epileptologist (neurologist who has special training in treating epilepsy) for his input:
"Is it totally crazy to contemplate swim team for Awesome?" It was the third time I'd asked in as many appointments, but I wanted to hear the answer again. Adding the words "totally crazy" made the question more pointed, giving him a wide-open opportunity, perhaps even an invitation--especially in light of Awesome's recent seizure record--to change his mind--or at least to express some new doubts.
He didn't. "Not at all," he replied, "It's not at all crazy for Awesome to be on swim team. As long as she's well-supervised, it's safe." He then proceeded to explain the reasoning behind his answer. And though I already knew what he was going to say because I'd heard his thoughts on the subject twice before, I really wanted to hear them again. I needed to know with certainty that from his point of view--with 25 years of experience treating kids with epilepsy and advising parents of kids with epilepsy--and then seeing the outcomes over the long term---we wouldn't be doing something really stupid if we decided to sign Awesome up for swim team.
First he offered some reassuring words about how seizures become far less likely when the body is in exercise mode--when pulse is elevated, the heart is pumping hard, and the blood is coursing through the veins. And then he stated that, although there are no guarantees in life and certainly not in epilepsy, the likelihood that Awesome would have a seizure while actively engaged in a vigorous exercise like swimming, was very small.
Quick on the heels of the reassurances he reminded us about Awesome's special need for constant, close supervision whenever she's in the pool. Not just while she was swimming, but also when she wasn't, because, as unlikely as seizures are while she's swimming, "I can't promise what will happen while she's hanging on the side of the pool with her friends." When less active, Awesome's heart rate would slow and return to normal. And when it did, the likelihood of seizures would increase again--back up into the normal range for her. Diligent supervision would therefore be doubly important during down times in the pool--like between sets when she was hanging on the side of the pool.
In short, diligent supervision would be required every moment Awesome was in the pool. If we could provide this, then there was no reason why Awesome shouldn't be on swim team.
***********************
Why swimming? Each family has its own grooves or traditions--ways it tends to do things. For our family, organized, disciplined daily exercise--mostly either running or swimming--has been a major, indispensable part of how we do things. Especially in the middle school and high school years.
Various of our kids have, at various times, attended public school, private school, or homeschool. For our kids who've homeschooled during the middle and high school years, it's been very important to us--and them--that they get out of the house, away from us, with their peers, and under other adult mentors on a regular basis---while they're doing something worth doing. For our youngest three sons--Eli, Peter, and Jonas--swim team fit the bill. Whether they liked the idea or not--and two of them initially didn't--they went off to swimming 3 to 6 days a week for 1 to 3 1/2 hours a day during their middle school and high school years. Inevitably, they all came to love swimming; they were also grateful to have a sphere in which Mom and Dad didn't figure except in minor ways.
It was on swim team that they learned many good things. Among them: the habit of disciplined daily exercise; the real-life lesson that diligent, sustained effort over a long time nets results; the discipline to show up and do what was required of them day in and day out-- rain, shine, cold, or scorching; and a bazillion other things. Our sons formed lasting friendships. They were mentored by coaches and got to know their teammates' parents. They hung out for endless hours at swim meets and enjoyed team travel. They learned to compete only against themselves--to better their own times--while cheering on teammates who were both slower and also far faster then themselves. Their peers were good kids who were good students--and mostly good influences. And because swim team demanded more and more time as they got older (including 5 AM practices two days a week), they learned time management skills.
And as they got older, our sons became mentors for younger swimmers, spent summers coaching on summer swim league teams, and earned their life guard certificates. One of our sons became one of the regular coaches on swim team in his senior year of high school and then in college during summers and holidays. All of our sons learned both following skills and leadership skills--how to encourage and correct, inspire and discipline, and keep a group of children safe in the water and on the pool deck--all while ensuring that the group and the individuals in it, got things done--that goals were met.
Our sons became physically fit, buff young men, who could carry themselves with dignity while not taking themselves too seriously. And twice a year they helped in the massive team undertaking of installing and then taking down the huge plastic bubble (hot air dome) over the city pool--working diligently (and more and more skillfully over the years until they were indispensable at what they did) for hour after hour over two or three days with hundreds of teammates and teammates' parents until they were dirty, hot, sunburned, and exhausted. In short, swim team was a major positive force in our youngest three sons' lives from 2004 through 2014, during some of their most formative years.
And so we assumed that Awesome (who is also homeschooled), when she was old enough, would continue our family's swim team tradition. And in the process, gain all these valuable positives.
But then epilepsy happened. And it brought all that into question. Would Awesome swim on swim team? Should Awesome swim on swim team?
As we pulled into the city pool parking lot this afternoon, I was a little apprehensive. In terms of Awesome's little absence-like seizures (short 3-7 second seizures that are over almost as soon as they start), it had not been a stellar day so far. I actively worried about whether going to practice on a day like today was wise. Back in the spring of 2016 when we--Awesome and I--were off-road biking 5 miles a day several days a week, we'd have simply taken the day off. But with a hurricane forecast early in the week and an appointment to get braces for her teeth later in the week, next week's swim practices could easily be a complete wash-out. And so we've decided to swim while it's possible, despite Awesome's tiredness and little seizures.
The sun is bright and both the sky and the water are a sparkling blue as we walk onto the pool deck. I find the rescue equipment and put it on the deck at the ready. The older swim groups are already swimming in the middle section of the pool. Awesome and the other swimmers in the lower groups help the coaches pull the insulating blanket off the pool--a nod to cooler nights and a sun that is rapidly becoming less effective at heating the pool as we head into fall--and then they slip into the pool to get their warm-up instructions.
As they swim their warm up laps, I walk along the pool deck beside Awesome keeping my eyes on her. Already since starting swim team, Awesome is becoming much more at home in the water. After warm-up, most of today's practice is spent working on the component parts of breast stroke: waterfall head, gorilla arms, and ice cream bowl arms.
During the last 20 minutes of practice, Coach Camryn and Coach Kayleigh move the lower group kids to the deep end of the pool where a lane has been cleared so the two coaches can instruct the younger kids on the proper ways to dive into the water. Having followed with the rescue tube, I sit nearby watching the kids take turns as the coaches help them learn the four diving positions. Whenever it's Awesome's turn, she, like the others, dives into the water--streamline position into the deep end of the pool. Awesome clearly loves the deep end of the pool. Instead of climbing out of the pool, she and a couple of other girls linger over by the pool ladder, bobbing deep down into the depths of the pool to try to touch bottom.
There must be something freeing for Awesome in daring to do this. Some line in her mind that she crosses with courage, a line that somehow proves that epilepsy doesn't have her totally in its grasps. That proves that she is a normal member of swim team, not bounded by the tightened reins that she must live with so constantly. That she both accepts, but also hates.
Is this really true? Perhaps I'm merely projecting onto Awesome my perspective of what I think she's feeling? Maybe Awesome is not thinking anything like this at all. Maybe she's simply being the normal kid that she is and enjoying the feeling of being in deep water. Maybe her thoughts are no different than the other girls she's with. Perhaps epilepsy and the limitations it imposes are the furthest thing from her mind right now. I decide that I hope that it is. I hope that she has forgotten for awhile that she has epilepsy. I'm hoping that she simply feels free and happy.
There is some part of me that is fearful as I watch Awesome linger in the deep end and bob and then dip under the water to touch the bottom. There's a part of me that simply wants her to climb up the ladder out of the deep end as quickly as possible. Not to stay in the deep water. Not to bob down in the water to try to touch the bottom. There's a part of me that wants to reach out and bring her in to safety. That wants to reign her in. Impose limits on her that are very different from the other girls bobbing in the water in the deep end.
But there is another part of me that knows that I have to let go. And let Awesome live her life. That same part of me knows that I haven't seen a single seizure of any kind in the seven swim practices she's had so far--more than 8 hours in the water. That part of me also knows that Awesome should be allowed to do as the others girls are doing right now--to bob and dip and try to touch the bottom of the pool. After all, Awesome's within the bounds of the special safety parameters that we've set for her. I'm sitting here--on the rescue tube--watching her. Her coaches are ten feet away. Two more coaches are nearby. We could rescue her in an instant. She is safe.
Awesome is a totally normal kid during the 99.99% of the time--during the time that she's not seizing or post-ictal. During this vast majority of the time, Awesome has no special needs or impairments or special anything. The only thing different about her during this 99.99% of the time is that she has a need for special supervision. She needs to be watched carefully so as ensure that she's not heading into that 0.01% of the time when she is special needs, when she's seizing, when she needs rescued, when she needs prompt medical care.
I ask myself if I would I prefer that Awesome simply sit at home instead? Sequestered because of the 0.01% possibility of trouble? Awesome's doctor says no. I too feel strongly inclined to say no.
Would it be fair to Awesome to live that 99.99% of her life in a way that is less satisfying because of the 0.01% of her life that things go wrong? That's not a rhetorical question. It's a real question. How should we decide what is and isn't reasonable? What is and isn't safe? Where does caution end and fearful avoidance begin? Where does fearful avoidance end and courage begin? What is courage in this situation? What is the right thing?
And what if we get it wrong? What if we err on the side of freedom and she's unsafe? What if we keep her safe but squash her spirit and, in the process, banish all the things that makes life amazing? Would it have been worth it? Is the chance to let Awesome's life flower with growth worth the risk? Would siding with safety be worth the high risk of that we'd wring all the joy, happiness, and amazing out of life?
These are the questions that epilepsy parents wrestle with every day. There are no easy answers. Making these judgments is hard. We are always between a rock and a hard place. There are downsides on every side. Whatever choice we make, we lie awake at night wondering if we've made the right choice. And to fail to choose is itself a choice. A choice to shut down, close off, and live a less-than-it-should-have-been life. And so we choose. And we hope we've made the right choice.
Various of our kids have, at various times, attended public school, private school, or homeschool. For our kids who've homeschooled during the middle and high school years, it's been very important to us--and them--that they get out of the house, away from us, with their peers, and under other adult mentors on a regular basis---while they're doing something worth doing. For our youngest three sons--Eli, Peter, and Jonas--swim team fit the bill. Whether they liked the idea or not--and two of them initially didn't--they went off to swimming 3 to 6 days a week for 1 to 3 1/2 hours a day during their middle school and high school years. Inevitably, they all came to love swimming; they were also grateful to have a sphere in which Mom and Dad didn't figure except in minor ways.
It was on swim team that they learned many good things. Among them: the habit of disciplined daily exercise; the real-life lesson that diligent, sustained effort over a long time nets results; the discipline to show up and do what was required of them day in and day out-- rain, shine, cold, or scorching; and a bazillion other things. Our sons formed lasting friendships. They were mentored by coaches and got to know their teammates' parents. They hung out for endless hours at swim meets and enjoyed team travel. They learned to compete only against themselves--to better their own times--while cheering on teammates who were both slower and also far faster then themselves. Their peers were good kids who were good students--and mostly good influences. And because swim team demanded more and more time as they got older (including 5 AM practices two days a week), they learned time management skills.
And as they got older, our sons became mentors for younger swimmers, spent summers coaching on summer swim league teams, and earned their life guard certificates. One of our sons became one of the regular coaches on swim team in his senior year of high school and then in college during summers and holidays. All of our sons learned both following skills and leadership skills--how to encourage and correct, inspire and discipline, and keep a group of children safe in the water and on the pool deck--all while ensuring that the group and the individuals in it, got things done--that goals were met.
Our sons became physically fit, buff young men, who could carry themselves with dignity while not taking themselves too seriously. And twice a year they helped in the massive team undertaking of installing and then taking down the huge plastic bubble (hot air dome) over the city pool--working diligently (and more and more skillfully over the years until they were indispensable at what they did) for hour after hour over two or three days with hundreds of teammates and teammates' parents until they were dirty, hot, sunburned, and exhausted. In short, swim team was a major positive force in our youngest three sons' lives from 2004 through 2014, during some of their most formative years.
And so we assumed that Awesome (who is also homeschooled), when she was old enough, would continue our family's swim team tradition. And in the process, gain all these valuable positives.
But then epilepsy happened. And it brought all that into question. Would Awesome swim on swim team? Should Awesome swim on swim team?
*******************
Between a hurricane, stormy days (no swimming when there's audible thunder or visible lightning), and a few seizure days (Awesome's often too wiped out to swim after having had a big seizure earlier in the day), attendance-wise, it's been a sketchy first month of swim practice. Swim team for Awesome is still unfamiliar--something she's still getting used to. Every practice still feels new and different and a little strange.
Me: "Given the choice between off-road biking and swim team, which is safer?"
Epileptologist: "Swimming. Swimming is safer."
My "why?" take-away: There's no way to rescue a seizing person from a moving bicycle. Unable to continue to balance and steer--or even continue to ride--a crash is inevitable. Injuries will result; the only question is what kind and how serious.
While swimming, a seizing person--if closely supervised--can be quickly rescued from the water. Potentially, without injury. That, at least, is the hope.
Off road biking: moderate danger. Swimming: less dangerous than biking.
My "why?" take-away: There's no way to rescue a seizing person from a moving bicycle. Unable to continue to balance and steer--or even continue to ride--a crash is inevitable. Injuries will result; the only question is what kind and how serious.
While swimming, a seizing person--if closely supervised--can be quickly rescued from the water. Potentially, without injury. That, at least, is the hope.
Off road biking: moderate danger. Swimming: less dangerous than biking.
****************
I'm reassured to learn that there are a handful of families in the online epilepsy support groups I frequent whose kids with epilepsy--some of them with intractable epilepsy--swim on competitive swim teams.
Second-, third-, and fourth-hand, through our son Eli--a young adult who swims in Masters (adult level competitive swimming) in another city--I am happy to hear that many of his current and former coaches either have a child with epilepsy as a member of their swim team--or know of teams who have as a member, a child with epilepsy. Kids with epilepsy do swim on swim teams. And through these same second-, third-, or fourth-hand conversations, I learn that most of those kids have NOT had seizures in the water, but a few have--and that everything turned out OK. The kid with epilepsy was being supervised closely enough that the signs of a seizure were recognized fairly early. The child's head was kept above water during the seizure and then the child was pulled from the water. No serious harm resulted.
Precedent. I need to know that we aren't alone. That Awesome isn't alone. That she isn't the only swimmer with epilepsy. And not the only swimmer with intractable, drug-resistant epilepsy.
I'm reassured to learn that there are a handful of families in the online epilepsy support groups I frequent whose kids with epilepsy--some of them with intractable epilepsy--swim on competitive swim teams.
Second-, third-, and fourth-hand, through our son Eli--a young adult who swims in Masters (adult level competitive swimming) in another city--I am happy to hear that many of his current and former coaches either have a child with epilepsy as a member of their swim team--or know of teams who have as a member, a child with epilepsy. Kids with epilepsy do swim on swim teams. And through these same second-, third-, or fourth-hand conversations, I learn that most of those kids have NOT had seizures in the water, but a few have--and that everything turned out OK. The kid with epilepsy was being supervised closely enough that the signs of a seizure were recognized fairly early. The child's head was kept above water during the seizure and then the child was pulled from the water. No serious harm resulted.
So too, precedent of another kind: A fellow epilepsy parent--who is herself an open water marathon swimmer--recently arranged for her 10 year old son, who has epilepsy, and a friend (also a child) to swim the channel from Alcatraz to San Francisco. The two children completed the swim without incident, shadowed, as all who do open water swims are, by a kayak and a boat at the ready to help if needed. I saw the photo of the two kids standing on the shore after the swim, arms loosely around each other's shoulders, looking triumphant and happy. The Alcatraz swim was the child with epilepsy's second marathon open water swim; his first--a relay--had been a few months earlier in the Gulf of Mexico. It helps me to know that there are kids with epilepsy doing even (carefully supervised) open water swims. And so my conception of the world, and of what is not only theoretically possible, but is actually being done gets wider. Freer. Less cramped. More expansive.
Knowing of all this precedent helps me feel better about Awesome and swim team. She'll be in a swimming pool surrounded by coaches and strong swimmers, with close one-on-one supervision. The idea of Awesome being on swim team starts to seem more reasonable.
Knowing of all this precedent helps me feel better about Awesome and swim team. She'll be in a swimming pool surrounded by coaches and strong swimmers, with close one-on-one supervision. The idea of Awesome being on swim team starts to seem more reasonable.
*******************
And so, after wrestling with the question of swim team for a year and then too over this last summer, we finally took the plunge.
We signed Awesome up for competitive swim team.
I prayed that we'd made the right decision as we began to work our way through the steps to make the decision a reality.
We signed Awesome up for competitive swim team.
I prayed that we'd made the right decision as we began to work our way through the steps to make the decision a reality.
The first step was to talk to our swim team's head coach. I wrote a brief email explaining our history with this swim team (3 of our Awesome's older brothers had been members), Awesome's situation (including her having epilepsy), and asking for an appointment to talk further with him about Awesome's special supervision needs. Were they willing to work with us to make swim team work for Awesome?
The gracious email I received in reply was beautifully welcoming. It was everything that inclusion should look like in practice. (See my earlier post for what the ugly opposite--exclusion--looks like: Excluded by Inclusion Activists: The Cost of the Failure of Epilepsy Awareness )
The gracious email I received in reply was beautifully welcoming. It was everything that inclusion should look like in practice. (See my earlier post for what the ugly opposite--exclusion--looks like: Excluded by Inclusion Activists: The Cost of the Failure of Epilepsy Awareness )
I was even more impressed by our phone conversation a week later. The head coach readily agreed to my request that I be allowed on the pool deck during swim practice--usually a very strict no-no for parents--so as to be a set of eyes dedicated to just my daughter, looking out for signs of an impending seizure during practice.
If she should have a seizure while in the water during practice, the coach thought rescuing her shouldn't be a problem. There would be at least four adult coaches at every practice who were very strong swimmers and were life guard and CPR certified--as well as a host of other older swimmers who could also help.
The weeks between talking to the head coach and the first swim practice--right after Labor Day--were anxious ones for me. I lay awake at night wondering if we'd made the right decision.
If she should have a seizure while in the water during practice, the coach thought rescuing her shouldn't be a problem. There would be at least four adult coaches at every practice who were very strong swimmers and were life guard and CPR certified--as well as a host of other older swimmers who could also help.
The weeks between talking to the head coach and the first swim practice--right after Labor Day--were anxious ones for me. I lay awake at night wondering if we'd made the right decision.
At the first swim practice, once we'd met Awesome's coaches, we spent some time talking through procedures and rescue plans for what would happen if Awesome had a seizure while in the water. Lifeguards are trained both in seizure first aid and in techniques for assisting a person having a seizure in the water. After all, one in ten people will have a seizure at some point in their lives, and a certain number of these seizures take place in the water. We agreed that once Awesome was out of danger, I would take over administering seizure first aid--as I do at home--according to her doctor's individualized instructions. So too, assuming that this was a normal seizure and no water had been breathed, I would decide whether 911 should be called.
We worked out exactly what equipment would be needed to rescue Awesome. At every single practice, that equipment would need to be on the pool deck, ready at hand, should it be needed. Awesome shouldn't be allowed in the water until the equipment was on the pool deck. Since Awesome would always be under my watchful eye, I was also charged with blowing my coaches' whistle to sound the alarm at the first sign of a seizure. And then whoever was closest to Awesome would jump in the pool--if that's me, I'd jump in fully clothed (minus my watch and phone--which I put in a safe place at the start of practice)--and keep her head above water. At the sound of the whistle, the coaches would come running to facilitate the rescue. In figuring out what to do and how best to do it, the coaches consulted with lifeguards who've rescued seizing persons from the water; the coaches have also--since Awesome joined the team--practiced the rescue procedures on a volunteer of similar height and weight. So there is a plan. It's been rehearsed. The equipment's close at hand. Of course we pray that none of these rescue plans are ever needed.
If Awesome should have a big seizure in the water, every second would count. Therefore whenever Awesome's in the water, I'm on the pool deck with my eyes always on her. It's not a time of relaxation. I'm on duty. There is no daydreaming. No book reading. No texting. No messing with my phone. No distractions.
I am literally Awesome's life guard. Always watching. Because, I know all too well--from the school of hard knocks--that seizures come when you least expect them. All is well one minute; all is not well the next.
We worked out exactly what equipment would be needed to rescue Awesome. At every single practice, that equipment would need to be on the pool deck, ready at hand, should it be needed. Awesome shouldn't be allowed in the water until the equipment was on the pool deck. Since Awesome would always be under my watchful eye, I was also charged with blowing my coaches' whistle to sound the alarm at the first sign of a seizure. And then whoever was closest to Awesome would jump in the pool--if that's me, I'd jump in fully clothed (minus my watch and phone--which I put in a safe place at the start of practice)--and keep her head above water. At the sound of the whistle, the coaches would come running to facilitate the rescue. In figuring out what to do and how best to do it, the coaches consulted with lifeguards who've rescued seizing persons from the water; the coaches have also--since Awesome joined the team--practiced the rescue procedures on a volunteer of similar height and weight. So there is a plan. It's been rehearsed. The equipment's close at hand. Of course we pray that none of these rescue plans are ever needed.
If Awesome should have a big seizure in the water, every second would count. Therefore whenever Awesome's in the water, I'm on the pool deck with my eyes always on her. It's not a time of relaxation. I'm on duty. There is no daydreaming. No book reading. No texting. No messing with my phone. No distractions.
I am literally Awesome's life guard. Always watching. Because, I know all too well--from the school of hard knocks--that seizures come when you least expect them. All is well one minute; all is not well the next.
There is something daunting about having your child with intractable epilepsy on swim team. There are definitely days when, despite all the her doctor's reassurances and all the known precedent, I wonder if we're crazy for signing Awesome up for swim team, but at the same time, I can also see all the positives that have already resulted in the short time she's been swimming. Seeing all those positives several times a week is one of the brightest spots in our lives these days. Watching her at swim practice makes me happy--because Awesome is so happy and so free.
*********************
Awesome's swim coaches Coach Camryn and Kayleigh are totally amazing. Coach Kayleigh is, by day, a special ed teacher. And since one of her students has seizures, she is somewhat familiar with epilepsy--though not Awesome's particular brand of it. And Coach Camryn, a 51 year old former professor--who introduced herself as someone who has ADD--brings to her coaching such energy, optimism, intelligence, and creativity, all while making the kids feel at ease with both themselves and her--and also with their swimming successes and failures....well, we couldn't have asked for a better fit for Awesome. These coaches both take Awesome on her own terms and bring out the best in her.
And Awesome, it turns out, is a very hard worker in the pool. Very persevering. Awesome's official practice time is only an hour a day at her level (the bottom level--which used to be called "green group" and is now called "foundations."), but she routinely stays an extra half an hour, to continue to practice.
And Awesome, it turns out, is a very hard worker in the pool. Very persevering. Awesome's official practice time is only an hour a day at her level (the bottom level--which used to be called "green group" and is now called "foundations."), but she routinely stays an extra half an hour, to continue to practice.
Awesome is not yet an ace swimmer by any stretch of the imagination. To be on swim team, you basically simply have to swim across the pool--any way you can. Awesome's foundations group is all about learning the basics of the four swim strokes. It's a lot of hard work learning to coordinate your body in the water.
*********************
As we pulled into the city pool parking lot this afternoon, I was a little apprehensive. In terms of Awesome's little absence-like seizures (short 3-7 second seizures that are over almost as soon as they start), it had not been a stellar day so far. I actively worried about whether going to practice on a day like today was wise. Back in the spring of 2016 when we--Awesome and I--were off-road biking 5 miles a day several days a week, we'd have simply taken the day off. But with a hurricane forecast early in the week and an appointment to get braces for her teeth later in the week, next week's swim practices could easily be a complete wash-out. And so we've decided to swim while it's possible, despite Awesome's tiredness and little seizures.
The sun is bright and both the sky and the water are a sparkling blue as we walk onto the pool deck. I find the rescue equipment and put it on the deck at the ready. The older swim groups are already swimming in the middle section of the pool. Awesome and the other swimmers in the lower groups help the coaches pull the insulating blanket off the pool--a nod to cooler nights and a sun that is rapidly becoming less effective at heating the pool as we head into fall--and then they slip into the pool to get their warm-up instructions.
As they swim their warm up laps, I walk along the pool deck beside Awesome keeping my eyes on her. Already since starting swim team, Awesome is becoming much more at home in the water. After warm-up, most of today's practice is spent working on the component parts of breast stroke: waterfall head, gorilla arms, and ice cream bowl arms.
During the last 20 minutes of practice, Coach Camryn and Coach Kayleigh move the lower group kids to the deep end of the pool where a lane has been cleared so the two coaches can instruct the younger kids on the proper ways to dive into the water. Having followed with the rescue tube, I sit nearby watching the kids take turns as the coaches help them learn the four diving positions. Whenever it's Awesome's turn, she, like the others, dives into the water--streamline position into the deep end of the pool. Awesome clearly loves the deep end of the pool. Instead of climbing out of the pool, she and a couple of other girls linger over by the pool ladder, bobbing deep down into the depths of the pool to try to touch bottom.
There must be something freeing for Awesome in daring to do this. Some line in her mind that she crosses with courage, a line that somehow proves that epilepsy doesn't have her totally in its grasps. That proves that she is a normal member of swim team, not bounded by the tightened reins that she must live with so constantly. That she both accepts, but also hates.
Is this really true? Perhaps I'm merely projecting onto Awesome my perspective of what I think she's feeling? Maybe Awesome is not thinking anything like this at all. Maybe she's simply being the normal kid that she is and enjoying the feeling of being in deep water. Maybe her thoughts are no different than the other girls she's with. Perhaps epilepsy and the limitations it imposes are the furthest thing from her mind right now. I decide that I hope that it is. I hope that she has forgotten for awhile that she has epilepsy. I'm hoping that she simply feels free and happy.
There is some part of me that is fearful as I watch Awesome linger in the deep end and bob and then dip under the water to touch the bottom. There's a part of me that simply wants her to climb up the ladder out of the deep end as quickly as possible. Not to stay in the deep water. Not to bob down in the water to try to touch the bottom. There's a part of me that wants to reach out and bring her in to safety. That wants to reign her in. Impose limits on her that are very different from the other girls bobbing in the water in the deep end.
But there is another part of me that knows that I have to let go. And let Awesome live her life. That same part of me knows that I haven't seen a single seizure of any kind in the seven swim practices she's had so far--more than 8 hours in the water. That part of me also knows that Awesome should be allowed to do as the others girls are doing right now--to bob and dip and try to touch the bottom of the pool. After all, Awesome's within the bounds of the special safety parameters that we've set for her. I'm sitting here--on the rescue tube--watching her. Her coaches are ten feet away. Two more coaches are nearby. We could rescue her in an instant. She is safe.
Awesome is a totally normal kid during the 99.99% of the time--during the time that she's not seizing or post-ictal. During this vast majority of the time, Awesome has no special needs or impairments or special anything. The only thing different about her during this 99.99% of the time is that she has a need for special supervision. She needs to be watched carefully so as ensure that she's not heading into that 0.01% of the time when she is special needs, when she's seizing, when she needs rescued, when she needs prompt medical care.
I ask myself if I would I prefer that Awesome simply sit at home instead? Sequestered because of the 0.01% possibility of trouble? Awesome's doctor says no. I too feel strongly inclined to say no.
Would it be fair to Awesome to live that 99.99% of her life in a way that is less satisfying because of the 0.01% of her life that things go wrong? That's not a rhetorical question. It's a real question. How should we decide what is and isn't reasonable? What is and isn't safe? Where does caution end and fearful avoidance begin? Where does fearful avoidance end and courage begin? What is courage in this situation? What is the right thing?
And what if we get it wrong? What if we err on the side of freedom and she's unsafe? What if we keep her safe but squash her spirit and, in the process, banish all the things that makes life amazing? Would it have been worth it? Is the chance to let Awesome's life flower with growth worth the risk? Would siding with safety be worth the high risk of that we'd wring all the joy, happiness, and amazing out of life?
These are the questions that epilepsy parents wrestle with every day. There are no easy answers. Making these judgments is hard. We are always between a rock and a hard place. There are downsides on every side. Whatever choice we make, we lie awake at night wondering if we've made the right choice. And to fail to choose is itself a choice. A choice to shut down, close off, and live a less-than-it-should-have-been life. And so we choose. And we hope we've made the right choice.
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Today as we left the pool after swim practice, Awesome bounded up the sidewalk ahead of me, a totally different child from the one I'd brought to practice.
The Awesome that I'd brought to practice was tired, doubtful, and holding life at arm's length, unsure of whether she wanted to participate in it--prone to holing up with her computer and shutting out the world. The Awesome that I'd brought to practice had already had 21 short absence seizures that day. She was struggling seizure wise.
The Awesome that I was taking home from swim practice was energetic, optimistic, happy, and engaged, grasping life by the horns and talking about what she wanted to do this weekend. The Awesome that I brought home from practice hadn't had a single seizure in the past hour and a half that she'd been at practice--and would be seizure-free for the rest of the evening. Somehow that hour and a half of exercise had driven away her seizures for the rest of the day.
As I unlock the car door and Awesome slides into her seat, looks up at me, and smiles, her epileptologist's words echo in my mind, "Not at all. It's not at all crazy for Awesome to be on swim team."
As I unlock the car door and Awesome slides into her seat, looks up at me, and smiles, her epileptologist's words echo in my mind, "Not at all. It's not at all crazy for Awesome to be on swim team."
What a great, inspirational story. My son loves the water, he was in the pool long before he could walk, and we were afraid epilepsy would take that from him. We're grateful it hasn't, and Awesome's story opens up a new world of hope and possibility to those who heard "no water again every" when they got the epilepsy diagnosis. ~Dave, Epilepsy Dad
ReplyDeleteThanks for visiting my blog and for leaving your kind comment! Your daughter sounds terrific, and I think it's awesome that you're letting her "live her life" and swim. How glorious. I wish her a fun and SAFE period on the swim team. I know you will be vigilant, and I hope you are able to exult in this freedom that you're giving her.
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