Posts tagged disability
The ‘H’ word

The Cervantes family has had quite a week with something for everyone to celebrate - and we absolutely have. But lurking in the shadows of every celebration is chronic illness just waiting to take back the spotlight - and it has. I don’t use the word “hate” lightly. In fact, there is only one thing Jackson is allowed to say that he hates: epilepsy. But for some reason, using this word has been considered taboo in the community for years. So, I tried to figure out why.

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Privacy Schmivacy

As parents we learn to live with very little privacy. I mean seriously, when was the last time you used the bathroom in peace? But what about when you have physical therapy, palliative care, an oxygen tank delivery, and your daughter’s usual home nursing care all in your home before noon. We are incredibly grateful that Adelaide is able to receive as many services in our home as she is but I can’t help but feel sometimes that we live in a much smaller, but still very public, Grand Central station.

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Summertime stressin

These last couple weeks have been emotionally challenging and not for any one specific reason that I can determine. Don’t get me wrong I have laid in bed, stood in the shower and gotten lost in thought at a red traffic light coming up with all sorts of reasons as to why my heart is now paying rent to my throat. The winter holiday season is a well-known anxiety fueled host serving up a feast of emotional booby traps. But, maybe not so well-known, is that the summer season offers its own debilitating fare.

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Adelaide the kid

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?

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