Dear Amelia,

You were born, January 28, 2009, amid the whirring and clicking of the NICU team, over my frantic wails, and my doctor’s shouts of “GET THE NICU IN HERE STAT,” a whopper of a baby. Your rolls had rolls, making you look like a mini Stay Puft Marshmallow Baby. I longed, from my place on the bed where I lay weeping, to examine every one of those rolls. There’s nothing I love more than a brand new roly-poly, chubby cheeked, shit machine.

(you, post surgery)

But it wasn’t so simple, was it?

Amelia, you were born with a defect on your head. Right after you were born, it seemed as though it was probably a cosmetic issue, a benign cyst upon your wee head. The alternative, I knew from years of medical and nursing training, was a big. fucking. deal. indeed.

Guess which one you had?

My daughter, you are always the overachiever.

We had about twelve hours between birth and diagnosis in which we feverishly hoped that it was a boring cyst – your daddy and I and your Internet Aunts and Uncles hoped and prayed that you would be okay. It was only after your first CT Scan (I have to note that there is NO heading in your baby book for “Baby’s First CT Scan” which makes me think those baby book people have it ALL WRONG)(Okay, you don’t have a baby book. I really WISH you did, but you don’t)(sorry kiddo) that we learned that you were more of an overachiever than your mother.

It took hours to talk to a doctor that day, but when we did, the news wasn’t good. You’d already been ripped away from me and whisked off to the NICU, leaving your daddy and I to howl in sadness in our now-empty room. Your dad had tracked down your neurologist and was told that you had a neural tube defect. An encephalocele. You would need major neurosurgery and soon.

Amelia, why did you have to be such an overachiever?

It was there in the NICU that you were given your middle name – Grace. For you, in the face of all this adversity, showed me what grace looked like. Your father, he named you there.

The diagnosis left the future full of question marks (and you with a scar that neatly bisects the back of your head). Would you be normal? Would you survive? Would you learn as your brothers had?

The answer has always been a resounding *shrugs*

See most kids, my tiny overachiever, who have neural tube defects in the location that you did, do not survive. Most die before or after birth. Such a small handful of children with posterior encephaloceles survive that there is almost no data about them.

You are not only a million dollar baby, but a one in a million child.

For you are easily the smartest of my three very smart children. The connections you make between things. The way you understand concepts that puzzle most adults, that is nothing short of a miracle.

You are nothing short of a miracle.

In your short years, Amelia, you have done more good than any three-year old should be capable of. While your birth shattered me, you’ve helped assemble me back into a new person; a better person. You have given hope to people who have never met you, hope for parents whose children have the very same diagnosis – encephalocele – that you do.

You are the sole reason that Band Back Together exists. Through The Band, you have saved lives – actual lives.

That is nothing short of a miracle.

So to you, on the day before your third birthday, my darling girl, I want to thank you. For all you have given me. For the light you’ve bestowed upon the world, and your light – a light that continues to shine.

May your light always shine brightly, Amelia Grace.

Always.

Love,

Mommy

Comments

comments

83 thoughts on “And Now You Are Three

  1. Aw, have a happy birthday Miss Amelia! The internets loves you and your mommy. You are a beautiful example of triumph and strength over the seemingly impossible.

  2. Happy birthday to my awesome Internet niece Amelia Grace. One day, you will rule the world and I can’t wait to see it.

    Bex, you’ve done well – keep doing it. We’ll hold you up.

    ((hugs))

  3. Mimi, I hope your mommy saves and shows you all the love that so many people have for you, the love that you have brought to others and the bonds that you made. You made the Band and babygirl you look AMAZING for a 3 year old that birthed a movement, created change, kicked stigmas life, brought light to the dark. YOU are glitter and unicorns and cupcakes and bacon, all wrapped up in one curly package. Your mama aint too bad either. I love you both madly. Happy Birthday darling girl !

  4. Thank you Amelia. And thank you to your mommy. BBT has been such a resource and support to me, I’m forever grateful. Your story gives me hope that maybe the child I fear I’m going to lose will make it into this world after all.

    Happy Birthday, sweet girl.

  5. Her story is as remarkable as her mother is.

    Through your own overachieving ways (The Band) countless parents and children have been able to share and support each other while battling incredible obstacles. You’re one Badass amazing woman Becky!! Mucho love to you.

    Have a wonderful birthday full of giggles and squeals of delight precious little Amelia!

  6. Holy shit – that knocked me on my tear filled face! What a GORGEOUS love letter to a fabulous, delicious, wondrous little love. Now THAT post you should save for her non-existent baby book! (And it’s never too late to do one, you know! Mine’s 14 and I am still working on his toddler years – what I can remember…..)

  7. Happy Birthday, sweet Mimi! You are indeed so very special to so many of us. Love you, darling girl!

    Beautiful post, Becky. I’m choking back tears here. Loves you, woman.

  8. Although we are all individuals and special in our own way, Amelia certainly is a little more special and amazing than the rest of us. HAPPY BIRTHDAY cutie! You are so lucky to have a wonderful family who loves you and a whole internet family who loves you, too.

  9. I’ll use your own words. ” For the light you’ve bestowed upon the world, and your light – a light that continues to shine.”

    “May your light always shine brightly.”

    It’s clear she was made in your image. Strong, smart, and a fighter. Attributes like that have to come from somewhere…you. When she was born there’s no doubt a sepcial light was set upon the earth, but I think all of us would agree the same applies to the day you were born…our Aunt Becky. So not only is the world brighter because of her, but twice as bright because of you! Both of you will never know the true extent of the good that has happened because of her birth.

    “While we try to teach our children all about life…our children teach us what life is all about.” – Angela Schwindt

    May she walk in your footsteps, shining her light along the way…knowing her family is of the millions. Happy birthday Amelia! And to you AB, Happy Birth!

  10. Why you gotta make me cry? A touching and beautiful story of triumph over all odds…I’m a sucker for a happy ending and for doing things that people say you can’t- go Amelia! Keep conquering the world you precious little biscuit!

  11. Oh my god, beautiful child! I’m so sorry you all have to go through such heartache, but am grateful you share her story with us. My brother struggles with muscular dystrophy and when I think of how unfair it is that children have hardships, I almost can’t bear it.

    Happy Birthday Amelia, thank you for shining your light on us!

  12. If you wanted to make me cry, mission accomplished! Seriously though, she is a miracle and a blessing to everyone associated with you and BB2G. I think of Amelia when my own pain seems to be too much to bear or when I feel like hiding in a corner. She fought her way through something far worse than what I’m going through. She inspires me to keep fighting. She inspires me to help others. She inspires me to be stronger.

    Thank you, Amelia and happy birthday. I’m so glad you’re here.

  13. Pass the tissues.

    Oh, beautiful girl. I can’t wait to come visit you and your sweet momma in real life. I hope you don’t mind when I scoop you up and give you a huge hug! Happy Birthday Mimi!

  14. A tribute befitting the Princess of the Realm, indeed. Happy third birthday to your miracle Cinnamon Girl.

    Much love to you both.

  15. Damn, yo, here I am trying to get through lunch- all while grumbling about my 3 year old twins being.. well, 3 year olds and BAM! This post. Happy Birthday to your little miracle, you’re both so inspiring and you help to put stuff in perspective, for a lot of us, I think. Have a wonderful birthday with your angel! 🙂

    Chrys

  16. Happy Birthday, Amelia! You are quite the little fighter and an inspiration to us all! Your mommy and daddy are very lucky to have such a brave, smart and beautiful little one such as yourself. You keep on doing what you do best…being awesome and keeping those big brothers of yours in line! Much love from another Chicago Suburbanite!

  17. Crying. Happy 3rd Birthday Sweet Girl.
    Thank you and your Mommy for BBT..
    I may just be one of those lives you have helped save.
    You are an amazing little girl with an amazing Mommy!

  18. Bawling happy tears. In the middle of my cube, praying no one walks in.
    YAY YOU, Amelia Grace!!!! You’ve kicked butt before you could take names.
    YAY YOU, Aunt Becky!!!! You are a fearless charger into the unknown and give others courage from your travels.

    Love love love to the fam.

  19. I may not get the chance to say this tomorrow (or be able to do so without crying), but thank you, Amelia Grace, for being so strong and brave for ALL of us. The world is a more beautiful place with you in it, obvi, and you have no idea how many lives you’ve already touched/saved. Least of which is mine, but I thank you for saving it nonetheless. Happy birthday, you amazing little rocket, you!

  20. Oh, and there are the tears. Happy birthday sweet Mimi! You are a blessing in this world (and I’ll tell you a secret, your momma is too!).

  21. Aunt Becky,
    Thank you so much. I’ve told you this before, but I want you to know that your baby girl, and The Band she influenced are super close to my heart. If it weren’t for her amazing overachieverhood, I would be dead. Yes, I am one of those actual, real life people that Mimi has saved. Bella loves Mimi, and she doesn’t know why, but she just knows how special that little girl is to me. Things happen and people happen for a reason. Your amazing strength and courage in the face of the unknown with YOUR CHILD (and we all know you don’t fuck with the kids) has made you an inspiration to so many. And to take what uncertainty, doubt, guilt, and all the shit PTSD takes away from you and use it to give? Give life, and hope, and comfort, and just the knowing that we’re not alone in all this mess, well, you’re just admirable. I love you!!! Give Amelia big hugs and kisses from me and Bella. Now that I’m a snotty, crying, tear-stained mess, that is all.
    Love yous!!
    Kristin

  22. Happy Birthday Mimi, you are one of the reasons that I believe in hope and miracles. I hope you are loving your pink bedroom on your BIG Three birthday 🙂

  23. The tears, they are a flowing my dearest Becky. Much love to you all. And Mimi, the happiest of happy birthdays to you my darling girl. You have made us all fall in love with you from the moment you first graced this blog.

  24. happy birthday Dear Amelia,
    You truly are a inspiration to others’ and are a SURVIVOR too. Your parents are remarkable too and very lucky to have such a sweet child, to nuture and raise .
    I wish for you on your 3rd birthday, all good things, enjoy your special day with family and friends.
    thank you for sharing such an inspiring story with everyone.
    Aloha,
    a Gramma from Hawaii

  25. Happy Birthday Miss Cinna-mimi you bring hope to so many through your mama’s voice. Keep being your awesome self !

  26. Becky and Amelia, I don’t comment here often but today I had to. A miracle raised by a fighter. May you both have the most incredible year and enjoy your special day. Hugs to both of you. And thank you for sharing.

  27. Happy Birthday little Mimi!

    Now, if you will excuse me this room is really dusty and has my eyes all waterey…shut your whore mouth, Im not crying damn it!

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