A lot of my time in the past couple of years has been devoted to quiet contemplation. I've always enjoyed solitude and having time to just think and ponder, but since my son's diagnosis, I've really, almost, needed these times of peace and reflection. I've found that as a coping mechanism, bring able to think things over has really helped.
A couple of months ago, it must've been around Halloween, my daughter brought these pyjamas. They're black and have this whole body glow-in-the-dark skeleton on the front. The hips and legs are printed on the pant and the torso and arms are printed on the long-sleeve top. (It's actually quite an effective skeleton - especially if she wears the cloths outside for a while and lets the sun 'charge' the glowing material!)
Not long after she got these pyjamas, I took to calling her 'bones', because of the obvious alignment with the print, and also because, who doesn't like a solid nickname!? Here in Australia, we love them! To my surprise, she really liked the idea and ran with it, to the point where every time she wears these, I am reminded that bones was now in residence and that she need to be addressed by that name. My wife has even been brought into the fold and is now asked to use the name Bones when the pyjamas are being worn.
Nothing really jumped out at me as this being wrong or concerning. It's fun, and she likes the nickname. About a month ago, one night, I was instructed that she now needed to be referred to as 'stripes', because the 'bones' p.j.'s had been put in the wash and she was wearing ones with a stripe pattern, hence the new nickname. However, because this pattern was less distinctive, found myself being constantly ignored, or reminded, that I needed to call her 'stripes'. She's been quite adamant about me keeping to the nickname, and I thought nothing of it. Until I did.
Last week I was going through a moment of pensiveness and, as will often happen, a thought flashed into my mind which I grasped onto quickly and began extrapolating more. And that thought is the basis for this post - what if she (my daughter) is using these nicknames and a way of being noticed and having attention drawn to her? And from that, I got the deeper revelation of - what if she's, more and more, feeling invisible as a result of her brother's disability?
I've been acutely aware of the dangers of siblings feeling left out and/or abandoned when they have a sibling with a disability. I know that already, my daughter has asked why she doesn't get to go to the doctors as much as her brother, and it breaks my heart, because, well, try and explain to a six year old that her brother doesn't attend a doctor so often because it's a fun place to be. She doesn't understand that I'd trade all the visits to doctor's and specialists for my son's health. She just see's her brother getting to spend time with Dad without having an understanding of the real implications. I've been very mindful that this may happen and have made sure that I balance my time between the two, but due to his condition, inevitably, my son does get more focus - not out of want, but out of need.
I wrote a post a couple of months ago about my commitment to help her learn to (finally) ride a bike, and I know that I neglected this rite of passage as a result of her brother's diagnosis. But I'm now wanting to find ways to make sure that she knows explicitly that she is just as valued as he is, regardless of how it may appear on the surface. As I wrote in the previous paragraph, he can't help that he really does need a lot more of our attention. I know she knows that we love her, but I can't help thinking about those stories you hear of daughters who don't get the attention and love they need from their father and end up looking for it in all the wrong places, and I'm loathe to the idea that this could ever happen. I'm not saying it will, but with a mind that likes to consider every possible outcome, I've thought about it, and I guess that at least I'm aware and can make sure I'm doing everything possible to not allow her to ever feel that she's been completely abandoned.
I don't know if this phenomena is actually a 'thing', but I can imagine that it is. (The phenomena being that siblings who have a disabled brother or sister will feel invisible or that they matter less because of the increased amount of care that is required by the child with the condition.) If any psychologists (or someone who has experienced this before) happen to read this, I'd really be interested to know if this is something that can/will occur in this type of situation, and if there are any resources to help in such a situation. I love to read them.
In a similar philosophy to ownership, perhaps being aware is nine-tenths of the issue. Is awareness all that's needed? That I've thought about this might be the remedy, or at least the commencement of a remedy, that this problem requires. Regardless, I just want to offer both my children the best life that I can offer them. For my daughter, I particularly want to make sure that she doesn't become a victim of this condition. I want her to know that she's not invisible and that she will always be seen.
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Header image - NEOM on Unsplash.