The Impact of Having a Medically Complex Child/Sibling
I think there are things that come up for us, specifically our kids Yasmeen and Leena, that really put into perspective how having a medically complex child/sibling impacts everyday things.
Last week, Leena’s friend April had a fever, which Leena was exposed to. After learning this, I went into full panic mode about how it would impact Soraya should Leena get sick. Leena was immediately put in a mask and separated from Soraya for her health.
While this is what we always do when anyone even so much as sniffles in our house, this is not necessarily the most fun thing for Yasmeen and Leena.
To make matters more challenging, April was planning on attending another event (a party!) less than 24 hours later. Safi’s initial reaction was: “Nope, Leena you’re not going!”
Down came the water works from Leena. She asked, “Why am I being punished for someone else’s illness?”
Leena’s tears prompted Yasmeen and Soraya to gather around to support her, and all of a sudden we were in a family meeting of how we were going to navigate this. Leena kept crying about how this is “so unfair.” Yasmeen went through all the sports, activities, etc. she has missed because of similar situations. I reminded Leena of the time we made her miss Trick-Or-Treating when she was sick to help not get others sick too.
With lots of back and forth, we decided to (uncomfortably!) ask for help in making the solution we came up with – that Leena could attend if she wore a mask – more comfortable for her. Leena was hesitant because she did not want to be singled out or have to explain Soraya’s health to everyone. So I stepped in and asked all the other parents at the party to see if they’d be willing to wear a mask to support Leena.
Of course, I felt I had to disclose the ‘why’ behind this request. So again, I bared my soul and shared that Soraya was in hospice as I also humbled myself in asking strangers to support Leena.
What developed was beautiful. I dropped Leena off at the party and each one of her friends wore a mask!!! It was a wonderful feeling to know that Leena was not alone, but man it’s hard and exhausting to navigate these situations 🫠