All Posts

Dear Addie, This week has been deeply challenging. Your auditory system felt relentless, turning against you and causing nothing but constant distress. Every sound, and even the anticipation of one, sparked an internal battle you couldn’t escape. A war you had no energy to fight. No where felt safe, no where felt calm. Not even headphones could protect you. You were walking a tight rope at every step while cautiously looking out the corner of your eye. Times like these are tr

Dear Addie, Today, we walked. Not just in steps, not just one foot in front of the other, but with intention, with hearts set on a path where hope dares to become real. We didn’t walk for autism this time, but for blinding diseases, different roads, yet somehow the same destination. Both life-changing. Both asking us to hold tight to four small letters that somehow carry the weight of everything: hope. Addie, no one wakes up and wishes for a reason like this, no one dreams of

Dear Addie, I found this picture today of you at three years old. You had already learned to swing, pumping your legs all on your own at just two and could be found at any time of day from sunrise to sunset on the swings. Well before I understood that your love of swinging back and forth, all day, every day, was connected to words much bigger than you then, words like vestibular and proprioceptive. I mean what?!?! Say those three times fast! Never in my wildest dreams did I t

Dear Addie, If we ignore the ongoing pesky illness, this week was basically a highlight reel in your world. The weather couldn’t quite make up its mind giving the classic “fake spring,” bouncing from warm to chilly and back again, but let’s be honest, it never stood a chance of keeping you inside. I mean there was a swing that wasn’t going to swing itself and plenty of unsuspecting bugs living their everyday lives, just waiting to be plucked and inspected by you after all. Th

Dear Addie, This week, big sister Clara was home from college for spring break, and it was a beautiful reminder that with the change of seasons often comes great transition, as we can’t help but relish in her presence at the brilliant, independent adult she has become. When the cool, crisp air starts to warm, it feels like standing at a fork in the road, like some new and unknown adventure awaits! Two paths, both full of wonder, waiting to be discovered. A few weeks ago I tal

Dear Addie, This week was a bit rough, but it wasn’t without its wins. Allow me to explain. After receiving a few more diagnoses last week, it’s becoming clearer that the beginning of all of this health chaos was likely a melting pot of so many things. There are pieces we may never fully understand, questions that may never have clear answers about what came first or how it all unfolded. A real-life chicken or the egg scenario. With additional treatment plans now in place, we

Dear Addie, One very informative doctor’s appointment, one unfortunate sick day, and more of your infectious smiles than I could count. I’ll take that kind of week. Keep it up baby girl! Love, Mom

Dear Addie, It’s said that things often get worse before they get better, and this week felt exactly like that. For three days, we witnessed some of the worst sickness we’ve seen in quite some time. It left us in an unfortunate, but familiar conversation questioning whether we would ever truly understand what was happening, or if this had simply become our new normal. Was our life destined to be brief glimmers of hope, only to have the rug pulled out from underneath us again?

Dear Addie, And then it was the week before one of my favorite holidays, Valentine’s Day! I know what you are thinking,  “Mom… is it even a real holiday. And perhaps also? Aren’t ALL holidays your favorite?” First of all, bite your tongue! Second of all, yes. Every holiday is my favorite. Arbor Day? Love it, I mean, why not have a day for planting a tree?Groundhog Day? Meteorologist Rodent, can you say Iconic? Random Tuesday? Practically sacred. If there is even the faintest

Dear Addie, I sat down to write you a letter, only to realize that not much has changed. There was just a feeling of welcomed calm. Your beloved class pet, Scout, is still with us. You’re happily attending school when the weather allows, of course. Having said that, we adapted when the weather threw us multiple curveballs. Nana and Papa came to visit, and all was well there. It wasn’t until I was walking around the house, straightening things up, that I had a quiet realizatio

Dear Addie, This week, we pivoted. What I once knew only as a dance move (if you know, you know) has become a life lesson, proof that pivoting isn’t just motion, but a way of survival, growth, and grace. A strategic shift in your plan while keeping your core vision intact. Something that initially feels frustrating and unnatural, and from my own experience can bring you to tears in a heartbeat if you let it, but over time becomes organic and simply part of everyday life. If i

Dear Addie, I haven’t been very present lately in my writing of letters, and I want to acknowledge that. The past few weeks have been difficult, and I’ve needed some time to regroup and find our footing again. Every few days, I find myself spiraling...angry, hopeless, deeply sad. It’s become part of our “new normal”, and I hate every second of it. But it’s hard not to fall into that place when you’re watching your child struggle in ways you can’t fix, explain, or protect them

Dear Addie, And just like that, during the busiest time of year, we turned the page to another chapter. And then you were 15. Somehow, I know we are here, yet in the very same moment, I can’t quite believe it. Every birthday seems to arrive carrying an abundance of love and the quiet wonder of what’s next. I think back to birthdays past, the ones where I wondered if this would be the year for — fill in the blank. I suppose the truth of the matter is on this journey, the wond

Dear Addie, “Be the reason someone smiles. Be the reason someone feels loved and believes in the goodness in people.” -Roy T. Bennett Addie, we found the reason. But to understand it, I need to take you back to the very start, so hold on this is a long one. The day you were born, our family felt complete as a party of five. From the very beginning, there were quiet signs that an unfamiliar journey was ahead of us, though it would take years before we truly understood what tha

Dear Addie, This past week ran the gamut of emotions, from optimistic and hopeful to frustrated, sad, happy, and proud. A real whiplash kind of week. It all started the way so many of our weeks do right now: with a doctor’s appointment. One we had been looking forward to for a long time, and one that, looking back, we probably put too much stock in, hoping it would finally give us a clear, black-and-white answer to a rather gray situation. Instead, we left with a working theo

Dear Addie, It truly is the most wonderful time of the year, filled with cookies, twinkle lights, laughter, more cookies, and an abundance of warmth, joy, and kindness. Add in all things Grinchy (if you know, you know, he’s my fav), and not to mention your birthday sneaking up on us before we know it… and honestly, my dear? That’s a recipe for perfection in my book (year-round). Also, did I mention cookies? As we continue to try and find a sense of normalcy, whatever that lo

Dear Addie, Thanksgiving 2025. We made plans, core memory–type plans, and then had to pivot. We made different plans, super exciting bucket-list–type plans, and pivoted once more. The challenge of trying to live a life of semi-normalcy while staying cautiously optimistic that your health is heading in the right direction has been a dance all its own. Is today going to be a good day or a bad day? Will food be your friend or your foe? Will we leave the house, or will fatigue wi

Dear Addie, Let’s be honest, Gatorade has practically been our new best friend these last couple of months. So when the store only had the giant bottles, we poured half into a glass to make sure it would stay our best friend… and not end up at the bottom of a mop bucket. Food and drink intake are a delicate balance these days, but I digress. Thanksgiving Day, our little party of five sat together watching the Macy’s parade (one of my favorite holiday traditions) when I looked

My sweet Addie, I’m sorry I didn’t write to you last week. I was caught up in my thoughts and feelings,  something I honestly don’t like to admit, but it happens. People are always talking about self-care and reducing stress, and I know they mean well, but when you’re living this life every single day, I don’t know how anyone can simply think, " oh well, everything is going to work out.” There is a harsh reality here. We put a lot of hope in that statement, but sometimes it

Dear Addie, *For the record I think you said this picture was a dinosaur lol This week, you drew a picture that I’m starting to think might actually be a true depiction of your health journey map. We’ve continued to experience much of what has become our new “normal” — managing symptoms, meeting new doctors, hearing new theories, and, of course, drawing up, you guessed it, more new maps. Oddly enough this all reminds me of a saying people use about throwing spaghetti at the w