Trusting My Community With the Ultimate: My Son’s Care

Although it's painful, my commitment to the military in Afghanistan will help me honor my commitment to keeping my son, Cohen -- and the rest of my kids -- healthy.

| 5 min read
Lesley-Lykins-Headshot
Lesley Lykins
Lesley-Lykins-Uniform-Family-Featured-Rectangle

I walked back to the pool after a run on the treadmill, my Bluetooth® headset still on. My 2-year-old son, Cohen, had just finished a swim lesson and was excitedly enjoying the after-lesson playtime. As he came back to me with a rubber duck and two inflatable balls, he cut the corner of the pool too short. One leg dropped into the pool, the rest of his little body following rapidly.

I was about a foot closer than the lifeguard and jumped into the pool fully clothed -- complete with the headset. I pulled Cohen back above the water maybe four seconds from his initial splash.

A parent will do anything for her child -- that's why I'm leaving my family.

The Navy has been a part of my life for the past 17 years and I'm being deployed to Afghanistan for at least nine months. It's a bit hard to stomach when your child has cystic fibrosis, as Cohen, who's now 6 years old, does. I've been the one who has controlled his daily treatments and medication, educated others and myself, and advocated for him. But, my military service comes with medical insurance that is critical for Cohen's care.

So, while I prepare to depart for Afghanistan to provide Cohen with medical coverage, it won't be me that provides him with daily care this year.  That's the irony of this whole situation: By leaving my family -- by leaving Cohen -- I will be taking care of him.

I've been deployed twice before, but this will be the first time that I've been deployed since having children. My husband, Jason, and I have four children ages 10, 7, 6, and 2. It can be humbling to realize life can and will go on back home while I'm away and that my kids -- Cohen, especially -- will be taken care of while I'm gone. So, here are a few ways I've decided to prepare both my family and myself:

  1. Start Teaching and Educating Everyone Around Us About CF ... Now

Our family is fully committed to building a strong team of support in the community around us. We've taught babysitters how to do Cohen's daily treatments. We have presented to his class about CF, including a show-and-tell during which his classmates tried on Cohen's vest. We've worked with the school nurse to ensure she can provide back-up coverage, and his best friend's mom has some of his pills on hand. Cohen and his older siblings know what medications he takes throughout the day and how to run his treatments.

Lesley-Lykins-Cohen-At-School-Rectangle

When Cohen was on home IV (intravenous) antibiotics we made sure my parents knew how to administer them. We also asked a retired nurse to assist them while I was traveling for work and my husband was at his job and couldn't break away. I feel better knowing that we've prepared not only ourselves, but also others close to us to pitch in with Cohen's care.

  1. Reflect on What You Can and Can't Control

I'll be on the other side of the world in a war zone. Ensuring that Cohen puts on his vest, that his vitamins are ordered and arrive on time, and that he is actually drinking his daily dose of Miralax® -- those are things I won't be able to control and shouldn't try to when I need to be focused on what I'm doing elsewhere. One of my favorite prayers says:

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

While in Afghanistan, I'll need to remain focused on the work I'm doing and to be safe. I'll have to accept that what's going on at home is beyond my control.

  1. Dig Deep and Demonstrate Trust

So, here's the thing … the part of me that likes to be in control realizes there is so much at stake right now. It is so important to keep my son's body as healthy as possible so when advanced treatments like CFTR modulators and gene editing become available to him, Cohen will be in the best health he can.

How much damage could happen from missed treatments or lapses in medications while I'm away? The ugly part of me gets bitter when I think about being away while those on the home front could potentially slack on the daily care causing irreparable damage. Then, sanity comes back to me and I realize that my husband's love for our son is as strong as my own. I have no choice in this scenario but to trust Cohen's care to Jason, my parents, and the support team we've built up while I'm away.

Lesley-Lykins-Uniform-Family-Featured-Rectangle

The night before I deploy, we'll be back at that same swimming pool, this time with family and friends (and lifeguards) to celebrate a year's worth of birthdays that will continue while I'm deployed. We will be with a whole community of caregivers ready to do what's needed, from jumping into the pool to making sure Cohen takes his enzymes before he eats cake. He's in good hands.

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Topics
Caring for a Child With CF | Parents & Guardians | Social Life and Relationships
Lesley-Lykins-Headshot

Lesley is the mom of Cohen, her 6-year-old son born with cystic fibrosis. She grew up on a farm in northern Ohio milking goats and dreamed of living in California. After graduating college, she started her career driving warships. Today, she is a full-time working mother and Navy reserve public affairs officer. She has returned to live in Ohio (no goats) with her husband and four kids. Follow her on Twitter at @lyfsgr8 or her blog Of Grit and Grace.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.