It’s Okay to Say No (When Your Child Is Sick or Recently Diagnosed)

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After going through so much this past year — on the go between emergency rooms and clinic visits, in and out and of the hospital and ending up there for months with my 13-month-old — I realized I never took (or even had) the time to just breathe or have a moment.

Now . . . don’t take this as a complaint. My firstborn rarely saw a hospital unless it was time for a yearly checkup or shots. This was all very new to me. Months went by, and my now 23-month-old child got sick out of nowhere. He ended up going through many different tests, biopsies, and getting a port placed in his chest.

I wouldn’t want any mom or child to ever go through all we have been through this past year. I thought I’d share my take on why it’s okay to say no when your child is recently diagnosed or waiting on a diagnosis. 

Medical Decisions

While being inpatient in the hospital, you see multiple doctors and nurses. By the end of your diagnosis, you end up having a care team as full as a football roster. Seriously, when your child is going through testing for a diagnosis, it’s okay to sleep on it. If you have the time, think before making a decision when it comes to your child.

I look back on some decisions while we were inpatient and say to myself, “If only I weren’t so anxious, overwhelmed, or controlled by emotions. Or quick to say yes rather than stopping to pray about it and then coming to agreement with immediate family members.”

Another decision you have the right to make is your medical care team. With all due respect, trust your intuition. You know your child better than anyone else. Thinking about it takes away the unnecessary stress — especially when going through your child’s diagnosis.

Mother and kids
Photo by Cameron Holland

Visitations

This was a BIG one for me. Don’t get me wrong — I love visits. But if it’s not a healthy environment, everybody has to go. When your child has recently been diagnosed, there is already so much going on. So quickly, your life changes — in the blink of an eye, just like that.

For us, there was a lot of testing, transfusions, and fevers. Camden ended up isolated where he couldn’t come out of his room. He had sepsis at one point, when he was immediately taken out of my hands, and sleepless nights due to being in a lot of pain. Family members, friends, and anyone who wasn’t coming in good spirits, I didn’t want around. I could do without the company.

Babies can sense and feel when something isn’t right. Camden would automatically scream when doctors, nurses, or any staff cracked opened the door. To protect his peace and my sanity, I made sure he had a peaceful environment with soothing music or lights. On days we had surgeries, radiation, x-rays, or (I won’t forget) 24-hour fasts for scans — HELLO, cranky baby and sleepless mom! — the last thing I could use was company. All I wanted was to sleep and comfort my baby.

Knowledge

Instead of trying to figure out everything all at once, take time to breathe and relax. I have found from living in the hospital for months that it’s okay not to know everything and to take the backseat on certain situations.

Be persistent about getting the care your child needs. It’s okay to ask a lot of questions, even over and over again. Use the many resources available, like your medical care team. Take that walk, and catch a breath of fresh air — and don’t run!

I can’t express enough how thankful I am for my child’s care team. Even when the nights felt long — and at times when I felt as if Camden wasn’t going to get better — there was someone there to say no in many circumstances. 

To any mom out there whose child has been diagnosed with childhood cancer, life-threatening illness, and a rare (or any) diagnosis: It’s okay to say no. For the moms who are in and out of the hospital or clinic visits, just going home to regular scheduled routines and daily medicines — catching a break because you deserve to be physically, emotionally, and mentally stable — is very important.

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Cameron
Cameron, daughter of retired veteran James Holland, Sr., was born in Germany and raised right here in Fort Worth. She is raising two rambunctious boys, Aiden James (five years) and Camden (18 months). When able to catch a break, she enjoys coffee, blogging, singing, and loving Jesus. She’s always had a passion for helping others and wanting to conquer the world. She hopes to start her own non-profit organization raising awareness of langerhans cell histiocytosis for children and parents all over the world. When one emergency room visit to Cook Children’s led to a rare diagnosis, her life changed in the blink of an eye, and she’s not letting that stop her from leaving her mark on the world.

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