Dear Charlotte: Loving You

Dear Charlotte Amalie,

This week was your first one back to school, after a long summer two week break. (No rest for the special education department!) You woke up enthusiastic about your day. You grabbed your pre-selected outfit and demanded we get you dressed immediately. You patiently waited for the bus with anticipation and climbed aboard without a single glance in my direction. “Bye, Momma! I love you! Make good choices!” you declared as you ran out the door. So much maturity in such an immature body.

I wonder how you see the world around you. As you climb on that bus, what do you see? What to do anticipate about the day? Do you know, Miss Charlotte Amalie, how much strength you have within you? Do you understand what you have accomplished in your few short years of life? Do you have any sense of the inspiration you are to me? To those around you?

As you get older, does it weigh on you? Do you feel the pressure to conform to my idea of who you are, and who you should become?

I worry that I’ve created a narrative for you; that I have along the way usurped the tale you have to tell. I worry that someday you will read this and feel a certain pressure to live up to some unobtainable bar. I worry that I will be one more voice in a chorus of anthems, telling you to be something that doesn’t resonate with your soul.

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Charlotte also thinks she is hysterical.

All I want to tell you is how much I desperately love you. It’s not the diagnoses, or the incredible story you have to tell. It’s not the inspiration I feel when I look at you. It’s not the trials you have overcome, or the way you adapt to your special accessories. Those things are peripheral to the individual you are becoming.

My dearest little girl, I love you.

I love the way you stumble as you run (often into walls). I love the way you jump up and down, feet never quite leaving the ground, when you get excited. I love the way you talk. as. though. every. word. has. punctuation. after. it. I love the way you shout, “That is not correct!” when someone isn’t doing something your way.

I love watching you get up and try again. You fail, oh so often, at oh so many thing, my dear. I’m not sure I could handle it myself. But you are so proud of yourself when you can come running out of a Physical Therapy session and declare, “I did it, Mama! I did it!”

I hope you never lose that excitement to succeed, that pride in your hard work. It teaches me to be a better person– to try more, and complain less.

Last night you fell asleep during your CPT session. As I picked your sleeping body up out of the chair, I saw how much you have grown. How quickly you are turning into a young girl; no longer the sick, fragile infant in the ICU. You spend so much of your life in motion, it was humbling to see you so still. Resting, preparing for another day. A day to concur, to challenge, to overcome.

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Charlotte will take on the world. One maniacal smile at a time.

Charlotte Amalie, your days don’t come easy. You fight tooth and nail for every single milestone. You are feisty and stubborn and determined. You are resilient. And vibrant. And remarkable.

And I love that about you.

I love it all.

You have so much faith in yourself, my dear. Girls are so often told they aren’t enough: not smart enough, not strong enough, not beautiful enough, not humble enough, not tough enough. Simply, not enough to cut it in this world. It scares me that someday you might hear that message and believe it.


Disneyland, Aug 2013. We all know she’s a princess.

This morning, as I disconnected the ventilator, pulse oximeter and feeding tube, I told you how beautiful you were. You replied, “Beautiful in the whole wide world?”

Yes, my dear, the most beautiful in the whole wide world. Inside and out. Please, I beg of you, never stop believing that.

Don’t ever let anyone, even me, tell you what your story should be.

I will tell you this, though: No matter what your story becomes, I know I’m going to love the heck outta it.

Yours always,


5 responses

  1. Charlotte is a super lucky kid to have you as her Mommy. I am confident our kids will develop their own narrative… but the ones we started for them may influence them. But I don’t think that’s a negative. We’re offering years of positive energy in their direction. And that’s pretty special.

  2. Again, you amaze me with your ability to express yourself. Again, I
    get all teary eyed and sigh! What a beautiful little girl Charlotte is
    and what a truly beautiful woman her mother is. Love you both….Bala

  3. Wow, Amanda…
    Still impressing me after all these years.
    I have been reading your posts and am so moved by the beautiful photos. She is amazing. I feel like I can hear her voice in my ears. Your writing is incredible and so uplifting and honest.
    Thank you for sharing in this journey,

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