amelia · birthdays · clinically isolated syndrome · writing

A Six Year Milestone (for Amelia’s Birthday)


Dear Amelia,

Today you are six.

Once upon a time I marked these milestones pretty well with blog posts.

Well, I hit one and two and three and four… but there’s a noticeable gap for last year. I wonder if someday you’ll ask me why because you’ll have forgotten.

I’m not sure I want you to forget.

One year ago today, on your fifth birthday, we drove home from the Children’s Hospital of Alabama after meeting with a neurological specialist. We still had few answers and more questions.

You were just giddy that when you got home Ellie was here with her Gigi and had brought pizza and cookie cake and a big, giant balloon.

I remember your laughter the way I remember all the tears you’ve shed since the day of your very first scan. But, while I don’t want you to remember the trauma of an emergency CT or the IV or even the two days spent at Scottish Rite, what I do want you to remember is how very, very loved you are.


God told Moses to build an altar. A remembrance. A place to never forget the deliverance.

Your little life is my milestone in so many ways. You are my altar. My place where I laid it all down and gave it all over and you have taught me to sacrifice in so many wonderful ways.

Having you gave me the courage to believe I could stay home. But on your first birthday, the bank was closed and Daddy lost his job. By the time you were two, you had loved me through the unexpectedness of baby brother, and when you were three? You were all sass and sweetness with a big, beautiful smile. At four, you were content home with me after your little school had to close, and you let me savor all the little moments.

I didn’t even know I had this picture. I think you’re two.

Then you approached five and all my fears came to light.

But even in the worst times, you never stopped smiling. Your tears always dried and that blithe little spirit returned.

But sometimes, that’s taken a little while.

It’s been the hardest part of recovery, you know. The times that are darkest are when you’re not my sweet, laid-back Amelia. When you’re struggling without the words to name your own fears and this erupts in tantrums and stand-offs and screaming when I leave you at the door of kindergarten.

One of these days I’ll make a collage of all the pictures I have where you’re dancing in the rain wearing a bathing suit and waving a frilly umbrella.

The doctors think maybe we’ve turned a corner. You’re stable, they say. Maybe, maybe never you’ll be 100% well, but then again, is anyone ever fully well? Aren’t we all weak in some way? Yours manifests itself in the stiffness of that not-so-little hand that grips mine as we traipse the steps to clinic at UGA.

You cling to me for dear life, because by the end of the day, you’re tired and balance is just one more challenge you’ve learned to compensate for.


You hold me tighter.

And, baby girl, I’ll never let you go.

Happy Birthday, Amelia Hope!

2 thoughts on “A Six Year Milestone (for Amelia’s Birthday)

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