One Year

On our trip to LA a few weeks ago, the study coordinator reminded me that we had just reached a big milestone. This week was Millie’s one year anniversary of being in the study and receiving treatments. After getting this reminder, I immediately started ugly crying in the hospital, much to the dismay and confusion of the staff there. They didn’t understand why something like that could be so upsetting. Shouldn’t I be happy? We were doing all we could for Millie; I should be proud.

Their reaction made me equally confused. How could this be exciting? When we’ve lost so much in the last few months? Proud? Excited? I’m terrified. I’m exhausted. I don’t know what to do, how to feel, where to place my hopes.

And then it hit me: these kind people don’t know my Millie. They don’t know the little girl who cruised around our Chicago apartment with her walker looking for chocolate covered raisins. The girl who giggled uncontrollably when her dog chased bubbles. The girl who had chubby cheeks and a little belly from eating m&m pancakes and peanut butter and avocado sandwiches and too many donuts. The girl who would help me read books and tell stories, who would ask to hear Van sing songs, who would spend hours in her tower watching me navigate our increasingly complicated life. The girl who loved to play with her babies, and make food in her play kitchen, and cook on the barbeque in her house. These people don’t know her. But I do. And I miss her every minute of every day.

The last few months have been hard. As much as we keep hoping and trying new things, Millie is not getting any better. And it feels like a little more of my girl slips away from me everyday. I still catch glimpses of her, but the smiles are harder to come by. And the smiles are really all we have. To be honest, I don’t know where to go from here, or what to do. I’m just trying to love her as best I can and be whatever she needs me to be. But I can’t help but remember and miss that little girl; I would give just about anything to hear her say my name, or give me a hug, or hold my hand.

I believe in miracles. But through this journey, I’m beginning to see that miracles come in all shapes and sizes. And as much as I want a big miracle for us, maybe it’s not in the cards. Maybe our miracle was having some extra good time with Millie, to watch her grow and shine and be her beautiful self for a few extra months. And…

This post has sat like this as a draft for a few weeks. I didn’t know what to say next. There’s more. So much more. More to be said, more to be felt. But right now, this is all I have. I can’t do “more” right now.

So I’ll end with this. My sweet cousin made us “miracle Millie” bracelets, and I would like to share then with anyone who will wear them (I have lots, don’t worry!). Wear the bracelet on your wrist, and hold my family in your heart. Send me a text or email or leave a note on the comments and I’ll get them to you. We have regular and youth sizes, but some adults (myself included) may like the youth size better.

And then this set in my drafts for another week or two. It felt unfinished. And today I realized what else I needed to say to you all.

First, thank you, for your love, support, prayers, check ins, positivity. For all of it. If love and happy thoughts were enough, Millie wouldn’t have a care in the world. I know you all care about us and the journey we are on, and I’m sorry it’s taken me so long to post an update. I struggle to share news that isn’t good, but it’s time.

Second, this post sounds very dramatic. Reading and rereading it makes me wonder whether or not I should post it. But here it goes. I guess I just want to say that there are still good things happening. We get smiles, we have easier days. We recently figured out how to get Millie back in a bike seat and she still loves it. There are happy moments and that’s what I need to remember.

And one more thing… I’ve suspended all my social media accounts in the hopes of improving my mental health a bit. So if you reach out on those platforms, I’m not ignoring you. Keep the love and positive vibes coming our way. Our fight is far from over ❤️