Why Siblings of Children With Illnesses May Need the Most Attention

“He’s ruined all my birthdays, Mom,” Eli told me. “He was sick for every single birthday.” His statement is pretty accurate. Every birthday Eli is most likely to remember, from ages 4 to 7, Sam was sick. It was like clockwork every year, right in the middle of Eli’s party. 

The first year Sam had just been diagnosed and was lying on the couch sleeping most of the day. I couldn’t leave Sam’s side so I sat inside with him while everyone celebrated outside.

The year after that, I planned a huge party for Eli to make up for the year before. Sam got sick in the middle of the party. I had to leave my house full of 50 people and my sweet birthday boy to take Sam to the ER and get admitted.

Then Sam spiked a fever again during Eli’s party the next year and the following year.

Long stays in the hospital triggered anxiety for Eli. He always believed Sam would die, and I would never come home. When my husband, Rick, and Eli would leave to go home, Eli would scream through the hallway all the way to the parking lot. I often thought security would try to stop Rick from leaving the hospital because Eli would be screaming, “No! I want my Mommy!” as Rick was carrying him out the front door like he was stealing Eli from the unit or something. That always went through my mind as I sobbed uncontrollably, thinking of Eli screaming through the hospital for me. True story.

Eli once said to me monsters put bugs in Sam and that’s why he has cancer. Eli was 4 when he said that. I knew then he was wise beyond his years and he would be scarred for life. I’ve talked to others about this, and we’re all in somewhat of an agreement that although the child with cancer’s life is dramatically changes, the sibling’s life also changes just as much, if not more. The child with cancer is trying to survive, while the sibling is trying to help them survive and trying to have a normal childhood. There is nothing remotely normal about their childhood.

I will admit there are many times when Eli has gotten the short end of the stick. There are times when I have begged Eli to sit with his brother because Sam would cry for him, but Eli didn’t want to stay to watch what was going on. Just this week, while Sam was getting blood work, Eli didn’t want to stay in the room. Sam was crying for Eli, who was trying to walk out the door. I begged Eli to stay. He stayed, reluctantly. What am I doing to this poor child, I thought to myself. What am I doing? I see the resentment Eli has for Sam occasionally, but I also see the worry he has when Sam is not well. He becomes a 7-year-old mother, feeling Sam’s head and making sure he is comfortable. Sad and beautiful all at the same time.

The sibling effect is a complicated and neglected part of childhood cancer. It pains me to see how this has changed Eli, but it also makes me so freaking proud. The last few years have shaped Eli into this caring, anxiety-filled child who thinks if he gets a cut on his arm it will get infected and he will lose a limb. Too much down time in the hospital, I guess.

Just a word of advice: If you know a family with a child who is chronically or terminally ill, always remember the sibling. Include them in everything. Never let them feel left out. To be honest, they’re the ones that need the most attention.

Follow this journey on Chemo and Donuts.

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