Milanah’s Micro Journey

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Milanah’s Micro Journey

1lb 1oz princess this is my journey

06/11/2026

This morning while doing Milanah’s hair in the bathroom mirror, she asked me why she has one big nostril and one small nostril. Immediately, my mind went back to my tiny little one pound baby in her incubator literally fighting for her life. The flashback was wild.

When she was born I was told she might be too small to even be intubated, that the tubes might not fit. Thankfully they did. But after months of life saving support, there ended up being a small difference between her nostrils.

And leave it to Milanah to notice.

I told her it was because she was a warrior, and that one day she would fully understand exactly what I meant by that. I told her she was absolutely beautiful and that it was part of her story. Everyone has something that makes them unique, and that’s one of hers. On the inside though, I didn’t quite know what to say. Sometimes it’s so surreal being on the other side of it all. Like a strange dream. Yet little pieces of the reality we lived through still remain.

The mother bear in me immediately wanted to ask if someone had commented on it, or if she had simply noticed it herself.

When she asked me about it I was immediately flooded with memories of why, but how would I explain it properly? Because to me, that tiny difference isn’t something I see when I look at her.

I see the most fragile few hundred grams of determination.
I see 132 days of fighting in the NICU, that turned into many more years beyond that
I see a little girl who was never supposed to have it easy and didn’t for a long time, yet somehow has the most beautiful/bright little soul.

What she sees as one nostril being bigger than the other, I see as a reminder of just how hard she fought to be here. I don’t know if she’ll remember asking me that question years from now. But I’ll remember it.

Because for a moment, I wasn’t standing in my bathroom. I was sitting beside an incubator again, watching my tiny baby fight for her life.. And then I looked back at the mirror and saw the same little girl staring back at me. Sometimes that’s when it really hits me how far we’ve come.

06/01/2026

Today I bought the tutu

Did we need it? Another one? Absolutely not.

But this one is blue, and pretty, and she just had to have it. She lit right up when she saw it.

We must already have at least 8 others at home..

But one day she won’t light up with excitement and joy and tell me that we simply must get it… One day she’ll walk right past those things because she’s too cool, and too old.

So yes, I bought the tutu. Because one day she won’t ask me… And I’ll wish so badly that I could go back and buy a few more.

So today I bought the tutu, for her and for my future self… 💙

05/30/2026

You only get 18 summers with your kids..
And this one right now is one of them, if that’s not perspective I don’t know what is.

05/28/2026

My little petunia 🥹🥹🥹🥹

Last night I went and got her from her bed and brought her into mine. Sounds crazy? It’s kind of our thing. For a long time she slept beside me, especially when she was sick. When she started going back into her own room, I’d always tell her, “If you need me, you know where to find me.”

Some nights when I tucked her in, she’d say it right back “If you need me, you know where to find me… just come get me and bring me into your bed.” 🥺

So sometimes I do. Just because.

And last night while I was carrying her down the hall, I realized how much bigger she felt in my arms. These months of good health have finally let her grow the way she was always meant to. It’s beautiful and heartbreaking all at once realizing how much her little body spent so long just trying to keep up. And now suddenly she’s growing so fast right in front of me.

Someone slow time down 😫

05/20/2026

The greatest love of all. 🩷

05/13/2026

Milanah came home with this for Mother’s Day. I asked her tonight what she meant about the
‘she gives people water’ piece and she said “remember that time we were in the car and there was that man in the middle of the road, you gave him a water bottle” … She was talking about a homeless man we saw 2 years ago on a hot summer day. He was standing in the middle of the road, sunburnt, and I handed him a cold water bottle from the car. She was only 3 years old at the time.

I barely remembered that moment. She never forgot it. The fact that through all the other little in between moments this is one of the ones that stuck with her when she was asked why she loves me… Really blows my mind.

It wasn’t a toy, a game, a trip, an activity… It was the way I treated someone on a random day in the middle of one of our regular everyday outings. That means compassion registered deeply enough in her little brain to become part of how she defines me, even at such a young age.

I think this is the reminder everyone needs to remember to be kind, your kids are watching. 🩷

04/30/2026

As long as I’m living my baby you’ll be. ✨🩷🌸

04/26/2026

My little pumpkin pie butterfly… A million lifetimes would simply never be enough for me. 🌸✨🩷

04/15/2026

It’s been a while since I posted something about Milanah’s medical journey here… Which is amazing because this used to be my outlet when she was sick. And she’s been so healthy lately. It’s been like we’re living in a dream. But dreams don’t exist without reality.. and lately Ive been brought back a few times.

One thing I haven’t really posted about has been Milanah’s physical capabilities. Because from the outside looking in, it looks like she’s doing extremely well. And don’t get me wrong. She certainly is which is almost why I didn’t ever feel like I should post about it. I’ve always had an inkling that may be Milanah had some slight cerebral palsy. It was the way she would hesitate before taking a step up when she was a toddler. It looks like her brain just wasn’t aligning with her body. She learned to do a lot in ways that suited her and I was always just so happy that she was able to do them that my mind never accepted that maybe they were a little bit different.

Maybe accept it isn’t the right word they acknowledged is better. Truly, I was just so thankful that she could do the things that even if they were a little bit different I didn’t think it mattered. But as she gets older, and I see her with her peers, I realize that it’s maybe more apparent than I realized. We did get a confirmed diagnosis last summer after some Physio and some doctors appointments. When she was smaller, it didn’t seem so apparent but since starting school it’s become more clear that it is something that impacts her physically and as a parent, I’m really struggling and realizing that it may be more of a difficulty for her than I thought.

This is something I’m still learning how to navigate as her mom… but I think it’s time I start sharing that part too. I’ll be opening up more about it in my next post.

03/01/2026

Mommy & Milanah brunch date 🌸✨🩷

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