Sam and I have never sat our older kids down just to discuss that Sonzee's genetic mutation puts her at an increased risk for leaving us sooner than we would want, however, over the past 23 months various situations have occurred that have exposed their innocent and (should be) sheltered minds to a different reality than most children. They are smart kids and notice everything, we do our best to discuss the most challenging topics when they are not around, but then there is just the reality of it all that cannot be hidden. We encourage an open dialogue because we want them all to be able to feel comfortable and sort through their individual feelings in the way that best suits each of them, so we have no secrets. While I took many classes in psychology, I will be the first to admit that this department is completely out of my league.
Last year prior to Sonzee's month long hospitalization, our two oldest kids had a debate in the back of the car over whether G-d allows children to die. It was settled by explaining that we all go back to G-d when our mission is complete and unfortunately for some it is when they are a child. I doubted the adequacy of that answer for a while, but never wanted the answer to backfire so I felt that for our religious belief that was the "safest" reply. CDKL5 has forced our children to be exposed to nuances that other children are (thankfully) spared. During Sonzee's longest hospitalization our oldest decided after a week she did not want to visit her sister in the hospital anymore. I was so afraid of what the outcome could have been for Sonzee and that as our oldest got older she might regret the decision she made. Despite me feeling torn on the matter, we supported her decision and did not force her to go. Thankfully, the outcome was positive. As we continue this journey our children get older and obviously, their understanding of the situation becomes greater, unfortunately for me I feel like I need a cheat sheet of the top 5 most difficult questions a child can ask (randomly) regarding their medically complex sibling so that I will be more prepared.
Yesterday we attended the Friendship Circle's Jonathan's walk. Friendship circle is a fantastic organization that bridges special needs families and the community by giving "buddies" to special needs children. They also host events such as Jonathan's Walk to honor a child who unfortunately passed away. (I would highly recommend those of my friends who have a child with special needs to consider this organization near you). Last night as Sam tucked in our oldest it was his turn to be faced with the challenging question. (Yahtzee!). She has a glitter tattoo on her arm from the walk and was looking at it when she asks, "Aba, when Sonzee dies will we do a walk for her?", Sam was caught off guard so he said he didn't want to talk about (I won't hold it against him, but we are creating a list of answers that explain how we all handle the situation differently and while we encourage questions and discussion sometimes a person isn't wanting to have the discussion right then.). Our daughter then continued to say, "Yes, Sonzee's walk, I like that, we'll do that".
We can add this to the group of "things that are challenging when you have a child who has CDKL5 or a terminal illness and he/she has siblings". I wish her mind did not have to have these thoughts. I wish it was not such a "routine" type of thought, as if she was asking for a drink of water before bed. I do not know what hurts me more right now, the fact that one day we might have a "Sonzee's walk", the fact that my 7-year-old is the one who mentioned it, or the fact that we are all exposed to this as "our life".
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