Adelaide the kid

April 2019, 3.5 years

April 2019, 3.5 years

I have been struh-uh-ugling with the realization that Adelaide is physically growing up. I mean, who gave her permission? I realize this is something all parents have a hard time with as I experience it regularly with Jackson whenever he does something on his own that used to require assistance or, lately, when he requests his privacy. Selfishly, it can be hard to watch our kids need us less but we want them to grow and flourish, to be strong, independent individuals. But what happens when your child looks older but developmentally isn’t aging at all? How do you still celebrate physical growth with the absence of the mental/intellectual? For the record, these are all rhetorical questions cuz goodness knows I haven’t figured them out yet. In fact, to be morbidly honest, I never really allowed myself to envision Adelaide’s future until recently because I wasn’t sure she would get to grow up. I still believe that every day with her is a gift but for the first time since, well, 2016 I’ve begun imagining her as a child at 6, 8 and 13. Then I remember that this is why I live in inchstones because the future is ludicrously overwhelming. But for the purpose of today’s blog, and because my brain is running high speed down this path anyway, I am going to try and process my feelings around Adelaide the kid vs Adelaide the baby. 

My first thoughts go to how much more challenging it will be to care for her the bigger she gets. Thanks to a slow metabolism, consistent steroid use and genetics (her brother was a chunky monkey till age 4), Adelaide currently weighs in at 35lbs of dead weight. Out of stubbornness and lack of need, since Adelaide does not yet attend school, we have avoided a proper wheelchair and have elected for strollers out of convenience. But that will likely change within the year. Realizations wash over me that we will need a wheelchair accessible van, shower and home in the not so distant future. Will we modify our current home? Move to a new one? While we’re at it, could the Hamilton gods please tell us if we will still be living in Chicago a year from now?

April 2018, 2.5 years

April 2018, 2.5 years

It is also not lost on me that the world, in general, is more accessible for physically smaller people with disabilities. Adelaide will probably never be potty trained but rarely do you see a changing table than can accommodate a child, teen or adult. Adelaide already wears a size 5 diaper and they only go up to size 6 in the grocery store. I can’t even begin to wrap my head around puberty changes that are coming - and for children with neurological disorders they often start much earlier than normal. Seriously, Nature, can you cut us some slack?

But the worry that has been keeping me up at night recently is the change in the public perception of differently abled children as they age. Currently, my social media posts are filled with comments about how adorable, precious and beautiful Adelaide is. As they should be because she is (said her unbiased mother)! But I also know that as long as she is young and (relatively) small and cute, her otherness is less intimidating. Even so, some people are already awkward around her (see The Adelaide Effect) and I know that is only going to get worse as she gets older and bigger and less traditionally cute. Adelaide will always be beautiful to me but others will see eyes that don’t always track together, teeth that don’t fit neatly in her mouth, and drool that she can’t control. To be clear, I could really care less if people think my child is attractive, my concern isn’t for vanity. My concern begins and ends with the fact that I still want/need people to care. 

April 2017, 1.5 years

April 2017, 1.5 years

My end goal for every single blog or social media post is to raise awareness and ideally research money to help children like Adelaide. I also want to build community and be an honest source of information about life with a medically complex kiddo. Will the volume on my megaphone get turned down as Adelaide ages? Will less people care if their initial response to a social media post isn’t a heart eye emoji? I have no idea what Adelaide’s future holds but I know the need for awareness and research dollars is not going away. Which is why I will never stop writing, speaking and posting but as Adelaide’s physical age grows farther and farther from her developmental age she will unfortunately, and for no good reason I might add, make others uncomfortable. Which leads me finally to: do I need to begin to brace for negative comments from online trolls? I never want to have to think twice about posting a photo of my child because of cruel comments it may incite. Several families I follow have been public about the vitriol they receive on social media and it is shocking. Take one look at the fierce, super mama Natalie Weaver’s instagram to see what I mean. She has made it her mission to fight hate-speech on social media against those with disabilities and deformities after being a victim of cyber-bullying herself over photos she’s posted of her incredibly sweet daughter, Sophia. In a weird way we have been lucky that Adelaide’s disabilities could fly under the radar but I know this privilege will fade as she ages.

As I leaned on families that had walked in our shoes when we first started this journey, I imagine I will do the same for this next phase. I remain forever grateful for our support circle as we navigate Adelaide’s physical growth vs developmental growth. I also know that our Adelaideybug may be entirely dependent upon on us her entire life but she will continue to be the most independent spirit I’ve ever encountered and have strength in spades. Pffft, potty training is overrated anyway.

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April 2016, 6 months

April 2016, 6 months