Advice for Parents with Chronically Ill Kids, From Parents Who Know

Every time Jaxson had a scheduled hospital stay, Judy decked out his room with Ninja Turtles, Mickey Mouse, Captain America, Cars and more. 

Juan Martinez of Uvalde, TX, is a firefighter and EMT who says his wife, Judy, is the strongest person he knows. But this dynamic duo didn’t feel brave or strong when their 2-year-old son, Jaxson, was diagnosed with neuroblastoma, an aggressive cancer.

“We were terrified,” Juan said. “The worst thoughts go through your mind.” But then, as parents do, the couple pushed back their fears and got to work on behalf of their son.

10 Inspiring Tips to Cope with a Chronically Ill Child

While Judy and Juan wish that no child and family would ever have to walk the path of cancer, they offer inspiring advice for those who fight the battle. Here are 10 tips for parenting a child with chronic illness:

1. Never Give Up

“Just don’t give up. You’re going to have hard days, but you’re going to have amazing days, too. Sometimes a little of both on the same day. And eventually, the good days will outnumber the bad days.”

2. Advocate for Your Child

Juan and Jaxson
Juan seldom left his son Jaxson’s side. With Judy pregnant, the young parents had to divide and conquer.

“At 2 years old, Jaxson could barely speak. He could not explain what pain is. But as a parent, you know when something is not right. Don’t hesitate to speak up if there is something of concern. You don’t have to worry about hurting anyone’s feelings.”

3. Let Them Be Regular Kids

“Try to make things fun for your child. Try to keep them happy and smiling. Don’t ever make them feel like they’re sick. I think it helps for children who are sick to just keep going … let them be regular little boys and girls. Every time Jaxson had a scheduled hospital stay, we decked out his room … Ninja Turtles, Mickey Mouse, Captain America, Cars …”

4. Ask Questions

“Don’t be afraid to ask questions. You are getting thrown into a world you know absolutely nothing about, and you’re going to get a crash course in whatever the diagnosis is. It is going to require a lot of asking questions. Write down whatever information you need to remember, so you can refer back to it when you need to.”

5. Document Everything

“I remember Juan had gone to the hospital break room to get a snack, and he met up with another father, who told him, ‘Get yourself a notebook, right now!’ So we wrote down everything … the names of medications, the dosage, the times, the effects they were having. We knew we had to keep track, too, because your child is not the only patient the nurses are taking care of.”

6. Stick by Your Faith

“If you believe in God, know that he’s with you, no matter what. I know in the beginning it might not feel that way. But God will take care of you, all the way through.”

7. Communicate!

“Always be in communication with your spouse. No one knows your child the way the two of you do. You hear a lot of stories about how things like this can either break you or make you. Don’t let it break you. Juan and I had a close relationship to begin with, but this made us closer.”

8. Spend Time Together

“I remember being in the hospital for one of our wedding anniversaries. We went out to a restaurant while family stayed with Jaxson. We both felt so guilty for being away from our son. But we knew we had to spend time with one another. We hadn’t seen each other for a good while, and hadn’t spent any time with just the two of us. Doing this is really important.”

9. Limit Screen Time

“Don’t let electronics pull your attention away from your family. Be there with your child and never take time for granted. I appreciate this because there were days when I thought, ‘This is it. We won’t have him anymore.’ So, look up from the electronics.”

10. Let People Help

“Our families helped us out a lot, and our community. A lot of people were behind us, and they still are. We still have people who come up to us and tell us, ‘We’re praying for Jaxson. How’s he doing? We heard he had scans. We heard he’s still getting this medicine.’ They are all part of what you are going through.”

Tip: To help coordinate tasks like meal sign up, picking up meds, and more, the CaringBridge Planner is an all-inclusive scheduling tool to help you request and receive – support with everyday tasks. It’s all there, with a time and place for each task and space for anyone who wants to help.

Don’t Go Through Your Health Journey Alone

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All of this is ready for you when you start your personal CaringBridge site, which is completely free of charge, ad-free, private and secure. Don’t spend another minute alone!

Please Share Your Tips for Parenting a Chronically Ill Kid

We’d love to find out how you have parented a chronically ill kid (and how you’ve coped with it, yourself). You can tell us and CaringBridge users everywhere about any tips and techniques you’ve used successfully and what advice you’d give to other parents. Comment with your ideas and stories below.

  • Caryn Sullivan

    All great tips. I especially like number 10. I like to remind people that it is as much a gift to accept an offer of help as to extend one.

  • G. Hagopian

    I haven’t had to care for a chronically ill child……but I just want to share some encouraging words:

    The close bond between mother and baby was designed by our loving Creator, Jehovah God.* King David credited God with bringing him “out of the womb” and making him feel secure in his mother’s embrace. He prayed: “I have been entrusted to your care from birth; from my mother’s womb, you have been my God.” —Psalm 22:9, 10.
    If God created such a complex system to ensure that a human mother will tenderly observe her baby and respond to the infant’s needs, does it not seem logical that God also takes a personal interest in us, “the children of God”? —Acts 17:29.
    Jesus Christ, who knows the Creator better than anyone else, taught: “Two sparrows sell for a coin of small value, do they not? Yet not one of them will fall to the ground without your Father’s knowledge. But even the hairs of your head are all numbered. So have no fear; you are worth more than many sparrows.” —Matthew 10:29-31.
    Few of us pay attention to every small bird we see, let alone notice when one of them falls to the ground. But our heavenly Father notices each one of them! And birds —even many birds— are never worth more to him than a human. The lesson, therefore, is clear: You should “have no fear” that God does not notice you. On the contrary, he is deeply interested in you!
    Hope this brings some encouragement,
    “I will rejoice greatly in your loyal love, for you have seen my affliction; you are aware of my deep distress.” Psalm 31:7