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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

Dear Addie, And then we were home. No more IVs, NG tubes, tests, hospital gowns, or 2 a.m. vitals — we were home. Home, with relief that the first round of tests showed nothing major behind the chaos consuming you. But that relief also came with a prescription for an outside-the-box theory — and a tightrope to walk. We left the hospital hopeful, but weary, as we’ve been here before. A natural reaction, I’m sure. We’re seeing more smiles this week than we have in a long while

Dear Addie, This past weekend, we packed our bags and prepared for a week away—not the kind of “away” that means checking into a Marriott for a fun-filled vacation, but rather checking into the pediatric hospital for a week of additional testing. It was a lesson in wants and needs, because while nobody wanted this, it was something we needed at this time. There has been glimmers of progress and tiny signs that gave us hope that recovery was near. It felt within reach, like

Dear Addie, This week, we tried. Not naive to the reality of life, with everyone growing older, calendars packed with school, work, and social plans, we made an effort. We tried for a family picture. Clara was home for the weekend. Gabe didn’t have rehearsal until later in the afternoon. You, though a little lethargic, were in a good mood. The Lions weren’t playing until later, and of course, it was raining - because why wouldn’t it be? We said - Let’s do this. Everybody say

Dear Addie, This week was rough, there’s really no better way to put it. Mentally and physically, it felt like there was no safe space to...

Dear Addie, Sometimes, I find myself reflecting on our parenting journey, caught in a wave of “remember when” moments. I think about the...

Dear Addie, For the first time since starting these letters, I didn’t get to my writing last week. It ate away at me a bit to think I had...

Dear Addie, Our days and nights all seem long right now, or maybe not long, but often a blur of where day and night begin and end. Right...

Dear Addie, ...And then you were a freshman. The week we had been waiting for has finally arrived as we headed back to school. A week...

Dear Addie, This week has been really hard. I’ve felt tired, sad, a little angry, and pretty down about where we are with your health...

Dear Addie, Change is in the air. With fall schedules starting, our family is settling into new routines. Clara is back at college, and...

Dear Addie, After an unavoidable stay in the hospital last week, we finally returned home, exhausted, eager for a meal that wasn’t...