Twin Sisters With CF Find Support in Each Other

On National Sisters Day, twin sisters with cystic fibrosis share their special bond and hope that all people with CF can find that special “person” in their lives.

July 31, 2020 | 8 min read
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Melissa Jones
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Melissa Jones: Sometimes you don't even realize you had your “person” all along. I would say this was the case with my twin sister and me. We lovingly refer to each other as “twinnies.” Being a support to each other has taken on different roles and intensity over the years, but one thing is constant: She has my back and I have hers!

Although we were not diagnosed right away, we started our cystic fibrosis journey together right from the start. Our mom didn't know she was having twins until one week before she gave birth to us! She was feeling “extra pregnant” and requested an ultrasound to check on things. And surprise! Twinnies! My twinnie had been playing a lil' game of hide and seek all that time. We arrived six weeks early in March 1981. I was born and my twin needed to come out by cesarean section, so we ended up being born 20 minutes apart -- a bonus baby that arrived with a lot of action!

We each weighed about 4 pounds -- a little less than a sack of flour. Our mom recalls spending her time in the newborn ICU, holding and loving on her little twinnies and said despite our early arrival and being tiny and jaundiced that we were both strong. After only 10 days in the hospital, we were healthy enough to go home. Yay!

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In the next few years, we kept our parents on their toes, taking turns being sick. We had a lot of gastrointestinal troubles and pneumonia. We were not thriving or growing well. We were not even on the growth charts at all for many years. Our parents were doing everything they could to get to the bottom of what was happening with their twinnies.

We were finally diagnosed with CF at age 4. Our parents felt a feeling of devastation yet relief at the same time -- devastated by the thought of their daughters having CF, but relieved to know what was ailing us so that they could take action. Our parents were each other's person for love, support, understanding and relied on each other to take care of their family. We have memories seeing them crying deeply together, laughing together, and being frustrated together. When our little brother, Andy, was diagnosed with Type 1 diabetes at age 10, the feeling of devastation and relief was like pressing repeat on a song for them. But, they were again ready to spring into action and drew strength from one another.

Because of their own bond, our dad and mom set us up to basically take charge of our CF and to be each other's person. Being young and having a lot to learn, we did not fully appreciate or realize the impact of being a support to one another. We just did it not even realizing that's what we were doing.

Our parents integrated our treatments and needs until it felt as normal as breathing. Helping each other through our airway clearance techniques seemed normal to us. We each had big bears -- mine was brown and Sue's was black -- and we lay on these bears while we clapped each other on the back for airway clearance. We went to all our doctors' appointments together. Our unique CF life was our “normal” together.

We also grew up with our own individual difficulties with CF, and we learned to support one another in ways that, perhaps, we did not need ourselves. Fast forward many years later, it was when we started “adulting” that we had our “aha!” moment of how important it is to realize and appreciate who your person is.

I realized it when we were 20 years old in 2001 when my twinnie had her first adult CF hospital stay. It felt a lot different than having a hospital stay when we were kids and our parents handled all the technical stuff and were with us each step of the way. Sue lived in Colorado and I lived in Arizona at this time. I felt a strong inner urge to be there with her, so my husband and I drove 15 hours to get there. Of course, I felt like I couldn't do much, but just being close by her made me feel better. Remember that time, twinnie?

Susan Dowling: Oh yes, I remember. I felt so cared for with you both putting forth such efforts during a time I so needed to feel that connection and support. That visit was really special. Remember when I was discharged and we walked around the local zoo together? It was such a normal thing to partake in.

One thing we've always helped each other with is supporting as “normal” a life as possible, rising up from the lows CF can bring and blazing forward. My heart caught up to the realization that you were my person -- literally the other half of my heart -- when we shared some major triumphs in 2017.

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Having suffered the tragic and abrupt end of my marriage and life as I knew it, I retreated to what I realized is my safe place -- my twin! Remember when we took to the coastal scene on bikes? That epic 40-mile ride? That ridiculous steep hill we both pedaled up with no stopping? (I was so deeply proud of us -- and of you -- that we crushed such a challenge together.) Riding to your favorite local food shops? Do you remember when I let down my guard and allowed myself to be vulnerable and cried on your shoulder at the neighbor's beautiful garden?

It was then, in the wake of severe heartbreak, that I realized you were, are, and always will be my person.

When you have your person, you can feel and be everything to each other. Your special person helps you to not feel alone. They cheer you on through your good days and bad. They want to give you that extra boost to keep on trying. Once we realized we were each other's person, we embraced it. We can tell each other the silliest, most serious, or downright absurd things about our CF. Having your person means you can get a lil' annoyed when they give you the tough love, when they see you not taking good care of yourself because you are too busy with other things. But usually that annoyance turns to gratitude that they speak up because they feel that close to you and know what you need even when you don't want to admit it. We also seem to have our not-so-good days opposite to one another; this allows us to take care of each other even better.

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Having your person isn't limited by miles. We live 1,483 miles apart yet show our together-ness in so many ways. Our hope for our CF community is that you too find your person ... maybe it is a family member, spouse, bestie, or a CF friend through the amazing virtual means available today. Maybe your person has been there the entire time and you just didn't realize it -- like my twinnie and me. We are grateful to have realized this at a time when we appreciate and need each other the most. We are convinced part of our success in coping and thriving with CF is having each other, and we are ever grateful to be twinnies. Your person may or may not have CF, but one thing they will always have is your back.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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.

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Melissa happily lives in southeastern Arizona on her “prairie” with her wonderful husband of nearly 20 years. She gave up a career-oriented lifestyle to focus on the joys of giving. Melissa enjoys helping people learn the encouraging truths in the Bible. She loves kids and volunteers with Make A Wish, helping to grant the wishes of critically sick kids. For fun she enjoys hiking, is a “crazy chicken lady,” and loves cooking for friends. Her contagious laughter is her super power. She is thankful to the Cystic Fibrosis Foundation for continually helping her and her twin sister, Susan, live their best lives.

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