How One Blood Draw Helped Us Grow as Parents

Our parenting style wasn't something my husband and I figured out before our son was born. But given all the unexpected challenges CF throws at us, that flexibility has helped us grow as parents, able to change course if something doesn't work.

| 8 min read
Jaclyn-Strube-Headshot
Jaclyn Strube
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Discuss how you want to parent your children BEFORE you have them, they said. Who is “they?” Everyone! Parents, siblings, faith communities, and friends. Does anyone actually do that? Maybe you did -- clearly, we didn't. But I now believe that people give this advice largely because there are some things they wish they'd discussed, things they wish they had known. Still, it just isn't possible to know it all before having kids. Finding common ground on how to raise a human, in partnership with another human, is just really challenging some days.

We want to get it right and shape a productive member of society. Give them structure without overwhelming them. Give them boundaries without stifling them. Love them without smothering them. It's a complicated dance, one filled with the greatest joys and sorrows I've ever known.

So, no, we didn't discuss how we'd raise our child. We discussed birth plans, feeding and diapering, nap schedules, sleep training, all the technical stuff. But that isn't how you raise a child. How you parent, how you discipline -- we didn't discuss any of that. As it turned out, I think that worked in our favor. No one knows what their child will be like or how they'll change as they grow up, and your parenting style has to change as your child does. We didn't know that our sweet son would be tough as nails yet tender-hearted, or that he'd be articulate beyond his years, or that he would love superheroes. We also didn't know that he would have cystic fibrosis.

After we climbed out of the fog that surrounded us the first few days after our son's diagnosis, we stood as new parents with one leading core value: We had a baby. That meant first and foremost, we had a baby, who would become a child, a teenager, and then a man. Our son is many things besides a person with cystic fibrosis. So, we should treat him as such and expect that everyone in his life do the same.

This core value has served us, and I like to think our son, so well. It is the guiding light in all decisions we make. First, we plan our day, then we determine where to fit in CF care. At this point in the CF journey, we are able to do that, and we remain thankful for that.

As our little baby has become a preschooler, we've had some moments where we had a baby hasn't worked. Recently, our little guy had a stretch where he was poked and prodded a lot more than normal. Lots of blood draws, extra doctors' appointments, and many new things that he (and we) weren't used to. As usual, we forged ahead with encouragement and love, almost becoming cheerleaders at times. We were getting through it.

Then one night after a blood draw, it was time to remove the tape around the site where the needle had been. The tape used was much stickier than normal. My son asked me to get it started, then he would pull it off himself. As I struggled to pull up the corner, I knew we were in for trouble. His face immediately crumbled as I saw his skin lift up from the sticky tape. He ripped his arm away. My husband, Drew, was nearby, and we both started to encourage him by reminding him it would only hurt for a second and it was just like a Band-Aid -- though it clearly wasn't. We were being cheerleaders, piling on encouragement. He let us pull again for a moment and then he burst into tears another time. He was now adamant that we leave the tape on him forever. Drew and I were getting frustrated. We were all tired and wanted to get to bed. We continued to go in circles, trying to convince our son to let us remove it, telling him it wasn't going to hurt that bad. It really wasn't in the grand scheme of things -- he's been through worse for sure.

As we told him how it wouldn't hurt, and I saw how frustrated we were, I realized something. It wasn't the worst pain of the season for our son, but it did hurt. To him, the pain was bigger than just the tape. It was not the first pain of the day, so it carried some emotional pain, too. I told him to just sit tight and start coloring a picture, and asked Drew to come to the kitchen with me.

We huddled. I told Drew we had to let our child own this pain and we couldn't keep telling him it didn't hurt, because that wasn't true. We needed to let him be mad.

Drew was resistant at first, but when I said our current approach wasn't working, he agreed we had to pivot. We went back over to our little guy with a new and more honest resolve and told him it was up to him to decide how to remove the tape at his own pace. We told him that we knew it hurt and it wasn't fair. He decided to slowly remove the tape, which probably hurt more than ripping it off, but that was his choice. I held his hand and told him I was proud of him for working through it. He asked me not to talk anymore, so I honored that. When the last bit of tape came off, he collapsed into our arms, letting all the emotions of the past few weeks spill out. I told him it was OK to be mad, Drew told him it was OK to feel terrible.

We took the opportunity to talk that night about how our son had a lot of extra things to do because of cystic fibrosis. That day we really couldn't lead with we had a baby. We had to focus on the other value that doesn't always lead our decisions -- we had a baby who has cystic fibrosis. Because of CF, we had to parent differently. Because of CF, we had to pivot. And because of CF, we had to huddle after the first play to come up with a better one. Because our child does have cystic fibrosis, and sometimes that will have to impact our parenting philosophy.

Drew and I decided that night that we needed to have a signal to each other if we ever needed to change our approach, or if we ever needed to huddle again. We haven't had to use it yet, but knowing it's there has made us feel more like a team. We don't have to always agree on how to parent, but we do have to agree that we will find some common ground and move forward. With this comes better trust between Drew and me that we will speak up if unhappy, and I hope that our sweet son trusts us because he can see us considering his changing needs.

We had a baby. And he is kind, tough, tender-hearted, and articulate. He is wildly funny, confident, and he has cystic fibrosis. And if you know Drew, we should have always known that our son would like superheroes.

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Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.

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