Grandma POV

I remember sitting across from my mother at dinner one night as she finally let me see how Adelaide’s health was emotionally effecting her. I was floored to learn that she grieved not only for Adelaide but for me as well. Since then, I’ve connected with a number of special needs grandparents who have expressed to me their feelings of helplessness and grief but also that they didn’t feel that there was a space for them to express this. With that in mind, I asked my mom to step in this week and share her experience from the Grandma POV.

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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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Mama bear

This stunning photo was taken by our dear friend and photographer, Megan Allen, as part of "a day in the life of Adelaide" photo series she shot for us last month. From the meds, to the syringes they're in, to our nurse delivering them, we rely on our insurance to cover all you see in this photo so that we can give Adelaide, and our family, the best quality of life possible. What would a full repeal of the ACA actually mean for our family? For millions of others? Please read this week's blog to understand why this mama bear is roaring and has no intention of stopping.

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Inchstones

What do Hamilton, developmental disabilities and my motto, “taking life one inchstone at a time” all have in common? They were in full effect last Saturday when, after several months, I once again took our kids to the theater to visit Miguel/Daddy at work. I’m slightly ashamed to admit that I’ve written over 30 blogs posts (yes, I counted them) and I have yet to do a deep dive explanation of my own motto. I can tell you are clearly as shocked and appalled by this as I am. So let’s get to it!

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Hunting hope

Life with a chronic incurable illness is hard AF. Societal standards tell us to downplay our struggles for a variety of reasons, to focus on the good. Somedays that's just not possible. Recently we've found ourselves in a rut with Adelaide's care and honestly, I'm just really tired. When there is no light at the end of the tunnel how do you hunt down hope? 

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What about CBD?

After watching this week’s “Seizing Life” podcast episode on CBD, I felt the need to breakdown my love/hate relationship with this seizure treatment. It’s, um, complicated. I love the attention CBD brings to epilepsy but I hate the misinformation that comes along with it. This post reflects our personal experience and may be a little rougher around the edges than usual. What can I say, I’m nothing if not honest 🤷‍♀️

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Mast cell 101

It should come as no shock that Adelaide's body likes to keep us on our toes. Just over a year ago we added a new rare disease to Adelaide's growing list of diagnosis: Mast Cell Activation Syndrome. With Rare Disease Day shining a light on so many conditions yesterday, today seemed like the perfect opportunity to share a little bit about Adelaide's other not so fun disease. Who's ready for mast cell 101?! Don't worry I explain it all in typical Kelly fashion: a little bit of science with a lot bit of sass. 

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The Adelaide effect

At the end of the day I’m a woman who is a mom with a child that happens to have special needs. Those descriptors should make us more interesting not make those around us uncomfortable. This week I discuss how as Adelaide gets older, and in turn her disabilities more visible, the way people treat her is changing. How do I recommend you interact with a caregiver and her child with disabilities? Read on to find out!

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