Home 22q11.2 Explaining 22q to the Boys

Explaining 22q to the Boys

by Summerly Rowlands

Because we didn’t anticipate that something would go wrong and we didn’t know the situation we would be in until we were in it, we never had the opportunity before Izzy’s hospitalization to sit the boys down and explain to them her condition or health concerns. Once Sterling and I were at Children’s, we weren’t leaving – for 18 days – 18 days we hadn’t planned for. Thankfully we had family who could step in and step up to help us with Kam and Eli, but that time was still a whirlwind not only for us, but for the boys, as well. When we spoke on the phone, they would get confused or upset, asking when we would be home and what was going on.

While at the hospital, we didn’t want either of them to worry about Izzy like we knew they would. We wanted them to enjoy their time with family and not live nervously thinking about their sister. Ultimately we told them that Izzy was being taken care of by the doctors and we would be home when they made her all better. With two pre-kindergarteners, there wasn’t too many follow up questions; they know what a doctor is, they know what it means to be sick, they presumed it was because she was just born and had to go back to the hospital for whatever reason, and that was that. Their sister would be home to see them soon.

I know there may be people who disagree with my decision on how I chose to explain Izzy’s health to my other children, but I did it in a way that works for me and for us, and I think that any parent who has to explain a child’s diagnosis to siblings should do just that – whatever works for you. It could be the straight facts and medical terminology, which I completely understand the benefits and reality to that. It could be a very loose set of facts with stories made up of unicorns and princesses, which I also understand because no one wants their children to take on adult worries. Or it could be a mixture of both – which is what I think I chose. But truly, explaining a diagnosis or illness or disability to siblings while they are so young can be difficult and worrisome and confusing, so I believe whatever brings comfort to you and yours is how you should approach it. I also know that as my boys get older, the simplicity of my explanation will fade and the straight facts will replace. Izzy’s condition isn’t going anywhere so her brothers will learn more and understand more as they all grow.

Here is how I explained 22q to Kam and Eli:

First and foremost, when we got home from the long hospital stay, they were very excited. Their questions about where we were and why quickly disappeared – as long they were waking up in their own beds with all 5 of us at the house, then all was right in their worlds.

Because of Covid, masks were already a thing, so truthfully that helped us. And that’s where I started. We enrolled the boys into Kindergarten and their school was mask-optional; parents could sign a paper saying they required their son or daughter to wear a mask or they didn’t. We signed ‘required’. Although most kids started the year in masks, not everyone did. Our boys were really good (and still are really good) about wearing theirs, but they did wonder why they had to keep them on at school if others weren’t. My response to them was that they could bring home lots of germs from school that could get their sister sick and that she’s very special so we don’t want that. Both boys are obsessed with Izzy, so this was a no-brainer for them. ‘We don’t want her to end up back at the doctor’s or hospital so we need to make sure we’re wearing our masks.’ That was that. I honestly could have stopped there with my explanation, but both boys came with us to a few of Izzy’s appointments and they’ve seen her get sick once or twice… or ten times, so I gave them a bit more information without getting into all of the poking and prodding details.

Posing @ AKC after one of Izzy’s outpatient appointments 😋

One thing I’ve always harped on is that Izzy is very special; your sister is very special. We have to keep her safe and healthy. They took this to heart and remain very aware of keeping their hands clean, not touching or getting too close to her face, and keeping their distance if they’re not feeling well. They also ask when she’s sick who she’s been around and who gave her the germs. It’s pretty cute how protective they are… one day she might not love it so much 😆 But anyways… the talk of Izzy being special and keeping her healthy grew into another conversation where I shared with them that their sister is built differently. And actually I owe Go-Gurt a big thank you for this because it was their snack that gave me the idea! All of our Go-Gurts are full of fun facts and trivia so when the boys eat them, they typically ask me to read theirs. That day, one of them happened to be the banana fact!

“Half of the DNA in our body is an exact match to the DNA in a banana.” 🍌

What’s DNA? they asked me. So… I went with it. I told them that DNA is what our bodies are made up of and we all have it. However, remember how Izzy is so special? Well that’s because she’s built differently than we are. We all have DNA numbers inside of us from 1 through 22, but Izzy doesn’t have the number 22 – that’s pretty cool, huh?! Since she doesn’t have the number 22, we have to be very careful with her & make sure we always keep our germs away from her as best we can because without the number 22, she can get very, very sick. And again, that was that. A quick “science-y” lesson to give the most basic sense of her 22q – and that’s all they needed at this point – the basic knowledge to keep their sister healthy.

Since then, the boys have worn their my22qt shirts & celebrated 2/22/22 day at school, to which Eli proudly came home to tell us that 2/22/22 was Izzy’s day & now whenever he sees a 22, he excitedly says, “22! Like Izzy!” or “22! Izzy’s number!” 🥰 They may not know the medical terms or the specifics of what their sister went through or continues to go through, but one day they will. For now, they associate Izzy with hearts & love & the number 22, they believe she is the most special & perfect little sister, and they know how important it is to keep her healthy and away from germs. I’d say that’s a win for two 6 year old minds.

Lastly, for those who are curious, below is a link about banana DNA. I was amazed by the fact so I had to look it up… maybe Go-Gurt exaggerated a littleeeee bit 😅 but still super cool!


However you see fit to explain a child’s diagnosis to other children or siblings is not wrong. Have some mercy on yourself, these topics aren’t easy 💜

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