When I Had to Tell My Daughter With a Heart Condition She Couldn’t Swim to the Deep End of the Lake

Just a couple of years ago, my 13-year-old daughter was invited to a beach birthday party by one of the girls at her school. This was a big deal because she had been struggling to make friends.  Living with chronic illness and being hard of hearing can at times make it difficult for her to relate to others her age.

The party was held at a beautiful private sandy beach on a local inland lake. The shallower swimming area was roped off, and beyond that was a raft with a diving board located in much deeper water known as “the drop-off.” She seemed to be having a good time, and was doing a pretty good job keeping up with the others despite her tendency to become easily fatigued, and her inability to hear very well without her hearing aids.  Hearing aids cannot be worn while swimming.

I was watching the activity from the shore when I realized the group of bubbly teen girls were heading out towards the raft in the drop-off.  I saw my daughter hang back for a moment, contemplating being left behind once again or pushing on through her discomfort in order to just be “one of the girls.” I began to panic as she started to follow the others into the deep water of the drop-off.

At that moment, I was faced with making a heart-wrenching decision. Should I let her go or should I stop her?  Did she have the strength to make it to the raft, there and back?

My daughter lives with chronic cardiac issues, and becomes fatigued very quickly when she is doing something like climbing stairs, walking for a long period of time and especially swimming. Only a few weeks prior, she had to wear a 24-hour heart monitor which had shown a 5-second episode of what appeared to be complete heart block. This means there is a misfiring in the electrical activity of her heart; specifically, she has long PR intervals and she skips heartbeats. It is a condition we and her pediatric cardiologist have been monitoring closely.

I was growing anxious as I began to have visions of her making it halfway to the raft, struggling and slipping beneath the surface of the dark water, as I watched helplessly from the shore.

I had to make a decision, and quickly.

It only took a split second for fear and logic to override any concerns I might have for my daughter’s social life as I began shouting her name from the shore.  There was no way in hell I was going to let anything happen to my baby.

The other parents and the lifeguards looked up, startled, trying to locate any potential emergency.

She did not respond.

Again, I shouted her name, my fear beginning to mount as I realized she might not be able to hear me because she did not have her hearing aids. I am not sure how it happened, either she heard me or she just happened to glance in my direction, but I somehow managed to get her full attention.

I clearly shook my head back and forth as I made the signs for “No” and “Stop” in ASL (American Sign Language). I could tell by the look on her face that she was beyond embarrassed at the attention I had drawn her way.

There was a part of me that did not blame her one bit.

She came back to shore and defiantly said to me, “I know how to swim.  You never let me do anything on my own!  I hate you!” with tears forming in her eyes.

I tried to respond calmly, but my own heart was beating uncontrollably and my voice likely shrill and on edge.

“I know you can swim, sweetie, but do you remember how tired you got in the pool in Florida last month when swimming that short race with Grandma? You could not catch your breath afterwards. If you get tired out there, in the drop-off, there is no place for you to put your feet down and rest. Honey, I am sorry, but this is a safety issue.”  She looked back out towards the girls diving off of the raft, laughing and having a good time. I could tell she was contemplating what might happen if she disobeyed my direct order and tried to swim to the raft anyway.

In a very firm voice I stated, “And if I see you go out there anyway, I promise you that I will come in after you fully clothed in front of everyone here at this party.  Do you understand?”

She huffed off back into the water and swam by herself until the girls came back. After assuring the other adults that everything was “all right,” I stood on the shore alone, hiding tears under my dark sunglasses.

I tried to fix the situation by asking if she could take a flotation device with her out to the raft, but the lifeguards would not allow any floating devices to go beyond the swimming area, and they would not allow individuals who require a life jacket to swim to the raft either.

If I had let her go, she would have been completely on her own out there… where the water dropped off into a dark black hole.

I felt as if I had betrayed my daughter.  I stopped her from joining in with all of the other girls her age, with whom she so desperately wanted to fit in, and I did it in a very public and and frantic way. I was sad and angry with myself. Sad that my daughter had to deal with so much at such a young age, and angry that I had to be the one to set the hard limits necessary to keep her safe.

I have worked so hard for many years trying to help her realize all of her wonderful abilities. I wanted her to see herself as an individual who could do many of the same things that other kids her age could do. I did not want for anyone to define her, or what she could and could not do because of her medical conditions.

But there I was, guilty of doing that very thing.

It sucked beyond the telling of it from my perspective, so I can only imagine what it felt like for her.

I hope someday she will understand just how many difficult decisions I have had to make on her behalf… and that she might forgive me.

The truth is, I wanted nothing more than to let my daughter swim out to the raft in the drop-off with all the other girls on that day. In a perfect world, instead of standing alone on the shore, I would have been at the party, socializing with the other parents, leaving any potential life-and-death situations for the “professional lifeguards” to handle.

But I couldn’t. Could I?

I hope I got this one right…

I hope…

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? Check out our Submit a Story page for more about our submission guidelines.