Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day.
In this episode, Katherine shares what it was like for her and gives us the DL on what we can do and be aware of to be the best possible parents to all of our children.
When Katherine was young, she was unaware that Jonathon was “different”. Three years her senior, she didn’t know a world without him. She summed up her attitude as a kid:
“There's the sun, moon, stars, my parents, my brother. This was my world.”
But as she grew, she began to notice that she and her brother didn’t match the sibling relationships of her peers and friends. She spent a lot of time with her family in and out of the hospital, and they developed a bit of a resentment toward each other—he resented that she could walk and talk and do all the things so easily, and she resented that he received so much more attention than she did.
Now, as mother to her own child with a (different) diagnosis, Katherine is very intentional about creating an environment where both her children are cared for in the way she wished she had been growing up.
As you can imagine, I was all ears to learn what I can do to better support my own healthy daughter Wendy.
Firstly, she warned against seeing our “typical” child as the nonproblem child, as she was perceived. It is so important for all children in the family to have the license to have problems and to have those needs met. As she pointed out, they may be less obvious or imminent as the sibling with medical needs, but they are just as dangerous and vital to their health. We need to help them develop healthy coping skills so they don’t struggle with things like depression, anxiety, drugs, alcohol and eating disorders as adults. Katherine admittedly “dabbled” in each of these but was able to turn to academics to deal with the trauma and lack of attention she received. She counsels us to guide our children to the activities and hobbies that can help them cope in a healthy way.
She also says we need to protect the sibling from trauma as much as we can. Being in the hospital as much as she was as a child really impacted her. Of course, there is no way to completely shield them from the other child’s struggles, nor should we try to eliminate it entirely, but we as parents should do all we can to minimize how long they are exposed to their suffering. And, we need to use their questions (or lack thereof) as our guides in knowing how much and what to tell them about medical developments. Katherine said:
“They don't need to have a total front seat to the pain that their sibling is going through. Ask yourself, is there an upside to my typically developing child seeing this or knowing about this? And a lot of times, there just isn't.”
This was one of the points that really hit home for me personally. I think it feels comforting to me to tell her what’s going on and keep her informed. But Katherine is absolutely right, there really isn’t any benefit for her in that. There is no need for her to be dragged through traumatic experiences with us. And sometimes there’s nothing we can do to protect her from that, but we should do our best to limit it.
And lastly, we talked about giving our healthy child attention. It’s hard when our other child needs so much extra attention to stay alive or to meet milestones, but that other child can really suffer from getting that short end of the stick, as Katherine did. She said even if you figure out a 70/30 or 80/20 ratio of time and attention, it’s something. A lot of it comes down to being aware of the impacts of our focused attention and how our other child may be feeling. That goes a long way.
It broke my heart when she talked about feeling left out, not only from her peers who had vastly different home lives, but also from her family. Her parents were a unit. Her brother Jonathon and mom were a unit. And then there was Katherine. Of course, we never want that for any member of our family. I vowed to do better and give Wendy more of my undivided attention and love.
Feeling overwhelmed and inadequate? Yeah, me too. But the reassuring truth behind all of the advice and efforts was summed up well by Katherine:
“The love will shine through. The love will make a huge difference. Your children will know about that love. And that will carry them through a bunch of difficult things.”
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