When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.

I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.

Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.

Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.

When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.

It’s hard to believe that my daughter is now a patient.

In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.

Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.

I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ‘em and know when to fold ‘em and stuff.

I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.

For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.

Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.

At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.

Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.

Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.

Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.

I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”

And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.

Shine on, you crazy baby, shine on.

Comments = full of the awesome. Like gravy. I can haz an RSS RSS feed .

142 Responses to Darkness and Light

  • Mae says:

    You both have such beautiful spirits. She’s going to do amazing things.

  • Maria says:

    I don’t know what to say, dude. I hate that you have these unknowns and worries. But I also know that you are strong and bright and fiery and your daughter is too. You guys are awesome.

    Love.

  • melanie says:

    keep the faith….. she will kick ass!

  • amber says:

    I have no words. But I wish you all the luck in the world…not that you’ll need it.

  • Lorraine says:

    Aunt Becky and Amelia, Your stories have brought me a lot of laughs and sighs and more than a few tears over the last years. I wish you bright light to guide you both.
    Love from Canada,
    L

  • Miss Grace says:

    Your daughter is lovely, as are you.
    You will both survive.

  • Judie says:

    I spent many hours at Children’s Memorial (down town Chi.) after my son was born. You are in good hands, and Milli is in good hands having you for a mother.

  • jana says:

    Her light and her spirit is contagious and everyone in her path will catch it. And she gets it from her fabulous mother. Prayers for her new journey and yours as you navigate new corridors.

  • dana says:

    But God are your posts bringing back long-buried memories from six years ago. I’m glad you found a kind neurologist. We did too. And we knew enough to be SHOCKED at her awesome bedside nature (my older brother has severe epilepsy and I’ve spent a lifetime hearing about ass hat neurologists). My oldest got cleared by the neurologist at about 18 months but, wouldn’t you know it, now she has to see an infectious disease specialist! Didn’t know they were ass hats too. Sigh.

  • Nancy P says:

    no words…. Much love to you Aunt Becky.

  • sarah says:

    I’m sorry there are so many unknowns going forward. I’m wishing only the best for Mili and you–she’s so lucky to have you on her side.

  • Amelia has the best mom to take her through this journey. Bless you both and be well.

    HM

  • The iHubby says:

    You and Amelia exhibit the strength that I saw in my wife and I one year ago. My prayers and thoughts are with you and yours. She is going to come through all this and be able to share martini’s with her mommy someday.

  • Maryline says:

    “There’s the light”. You made me cry at work, hope you’re happy to brag about that :)
    Amelia is so brave. You are too. You know all of that.
    I don’t know what else to say, I’d like to have you as a neighbor so I could protect you and we would be friends. And maybe you’d convince me to get a tatoo :)

  • cagey says:

    Whoa. I am feeling completely punk’d over here. You were HILARIOUS in your session at BlogHer and I thought I would subscribe to you in the hopes I would get some light reading material to get me laughing. Certainly, I did not expect tears (on my part) and introspection.

    Also? Am totally not unsubscribing. Thank you for sharing your story and experiences. Thank you for digging deep and putting yourself out there. Thank you for finding humor in this shell game called “life”.

    Thank you.

    Am wishing only peace for you and your family, Aunt Becky.

  • Tara says:

    As usual, your beautiful words bring me to tears. Sending so many prayers and healthy vibes to you and your amazing daughter.

  • There’s nothing more I can say than I love you from the very depths of my soul. Amelia too.

  • Heather says:

    You go, little girl! Our little miracle is cheering for you.

  • alexandra cunningham says:

    my daughter josie was born two months after your daughter, in los angeles, with a previously undetected occipital encephalocele. she had it removed fifteen hours later, then five days later developed hydrocephalus as a result of the surgery and had a vp shunt put in. then we had a lot more similar fun in the next however many months, and here we are. josie walks, and says a lot of words, and i have no idea what the future holds.
    i know you’ve found a lot of friends and support through this blog, which you deserve. i just wanted to chime in and say i’m pulling for you too. obviously my personal experience doesn’t mean my support means more than anyone else’s – but it does mean i know a little more specifically what you’re going through. i’d never even heard of an encephalocele before the neurosurgeon came to my room to give us the statistics on what he was about to do. and i still wish i didn’t know what one is. but i do and so do you. so if you ever want to talk about anything at all related to that, please don’t hesitate to email me. i know that blogs like yours kept me from killing myself in the early months – but there aren’t so many of them, because there aren’t so many babies like amelia and josie. however, i absolutely don’t want to impose. i’m just putting it out there. and no matter what the best of luck, because amelia is bad ass.

    • alexandra cunningham says:

      i’m not a robot. i’m a television writer – which maybe isn’t all that different from being a robot.

  • mia says:

    She’s such a cutie ^_^

  • avasmommy says:

    She is her mother’s daughter. She’ll kick ass and take names. Hugs and love to you, Becky.

  • PrincessJenn says:

    This can be a hard road to walk because there are no simple answers. But she is lucky she has you in her corner to advocate for her. xoxo

  • a says:

    So, they’re saying that there is nothing new going on in there, then? That’s the good news, right?

    Then all that remains is for Amelia to retrain those other brain cells to make up for whatever else is going on. Hard work, yes, but I think she can do it. She is a little shining star! (Yes, I know I’m oversimplifying, but there’s no indication of any kind of additional anatomical issue that might prevent her brain from remaking the pathways that are missing, correct? The brain is a wonderful and mysterious thing, so I have faith that she can do it!)

  • cyndi says:

    She’s going to be their star patient and everyone is going to be stunned. :D We’re all going to look like idiots in the shine of her brilliance!

  • krlr says:

    I so very very much hope for the best.

  • CycleNinja says:

    We love you both, Becky. XOXO.

  • Carrie says:

    You and your daughter are such an inspiration!

  • Moosilaneous says:

    Thinnking of you, your little girl, as I walk the halls in the wonderful kids hospital where I work.
    I can just see her – and her indomitable mother.
    Hang in there.

  • Dualmom says:

    You express your love, fear and hope more beautifully than anyone I know.

    When they told me my son, who was 14 hours old may suffer permanent brain damage because of a severe port wine stain that potentially ruptured the blood vessels on the surface of his brain I remember holding him and whispering, “You’re perfect, just the way you are. You’re my perfect little man”

    Amelia is perfect. She’s perfect. But you know that….

  • angi says:

    she is beautiful and strong and brave…because you are. Fight on, angels.

  • Jerseygirl89 says:

    I am sorry that you and Amelia have to face this, but I have complete faith in both of you.

  • Meg says:

    As always, beautiful writing.
    You’re so strong and a wonderful role model for you little girl.

  • There’s certainly nothing I could say (witty or otherwise) about this blog other than to say that it was beautifully written and I hope therapeutic for you.

    Sending love and positive thoughts to you and your beautiful little girl.

  • Karen says:

    Glad the doc was awesome. I love her spirit and I know there are awesome things ahead for your littlest one!

  • Paula says:

    As a mom of a special needs daughter, your fear is an all too familiar emotion. But I know you’re a very strong mom, and if Amelia has even half of your strength, she’ll make it through this world just fine.

  • So sad-and I am so glad you got her a enw necklace, these will mean so much to her when she is older-your blog will too.

  • Adrienne says:

    My youngest child suffered a perinatal brain injury, probably a stroke although we’ll never know for sure.

    There is much darkness, but there is much light, too.

    When mine flickers? I borrow from others. You can borrow from me anytime.

  • Jenn says:

    I can’t even imagine how difficult and frustrating this must be for you. I think of you every day (in a non-stalkerish way) and I do believe that whatever comes of this, Amelia has a wonderful life ahead of her. Because she’s got you and, as parents go, they don’t get much better than you. xoxo

  • choosy says:

    Oh Amelia and her mommy. And her daddy.
    I have only good thoughts for you on this journey.
    Beautiful things happen.
    All the time.
    You’re due.

  • Melissa says:

    Her light will guide her all right! YOU are her light, and you are kick ass, and she is going to kick ass too.

  • Coco says:

    Oh, I love that song. Don’t the lyrics fit her?

    “You reached for the secret too soon
    You cried for the moon
    Shine on you crazy diamond
    Threatened by shadow and might
    and exposed in the light
    Shine on you crazy diamond”

    Honey, I wish I could make it all better, easier, finished and gone. But I can’t. I can’t. I don’t want to insult you with something trite or tell you everything will be fine, because who the hell knows? Here’s what I do know; Amelia is already a miracle. Hold fast to that, Becky darling. No matter what happens, you are the perfect mother for this miracle, and you will take her right up to the stars.

  • amy d says:

    I thought of you and Mili often yesterday. I am just so sad that you and your family are having to climb this hurdle.

    When I first stumbled upon the Awesomeness that is your blog, you were in your third trimester with Amelia. I feel as though I have gotten to know that sweet baby girl through your writing and my heart is now dark too with these latest events.

    Keep your spirit about you Bex. You have an army of pranksters praying for your beautiful girl.

    All my love and support. xoxo

  • Venti Vixen says:

    She will kick ass and take names, don’t you worry! Hang in there, Mama!

  • Brooke says:

    I’m so relieved for you that your visit to the hopsital is over. Let the new battle begin.

  • Leah says:

    My heart goes out to you and your beautiful family. If anyone can fight this big of a battle, it’s Amelia. I’m not religious, but I will be praying for you along with every single one of your Pranksters.

  • Kristin says:

    That was absolutely beautiful. It brought tears to my eyes. I know Amelia will find her way, she is a gorgeous, brave, and strong child, she’s already made it this far. Follow all of the light that shines for you Princess Amelia.

  • I’m glad this is past you but I can’t imagine the frustration that comes with the unknown. If anything is certain in this situation it is that she seems to be her mother’s child, with a fighting spirit and a light that can’t be outdone. Little Amelia is going to do amazing things, clearly we all are able to agree on that one thing. Prayers are with you, friend.

  • Mary says:

    No one can predict the future, but I am sure that your precious baby will grow up to be an amazing woman and will kick life in the balls.

    Prayers, good wishes,and hugs (if I could).

  • You just keep on making me feel both inspired and scared at the same time. It’s very disorienting, but beautiful.

  • Rebecca says:

    While we are fighting different demons, Aunt Becky, I’m right beside you. You with Amelia and Me with Joey. They will fight every battle and come out ahead.

  • Fight sweet girl, and take no prisoners. You are a warrior of the light. And you will win.

  • KYouell says:

    I can’t read the other comments. Just want to say that I love you (in a totally non-creepy, non-stalker, just another mama who’s spent too much time in hospitals with her baby way)(which of course is what all the creepy stalkers say).

  • KYouell says:

    Oh, and you totally made me want to google “dr sherrick”.

  • Toni says:

    Amazing entry, and amazing spirit. Best wishes to you and your family, and keep fighting.

  • Blessings to you and Miss Mili! Prayers are coming your way!

    :-)

    Megan

  • Gamanda says:

    The unknowing of what’s to come is the worst. I’m pulling for you and Amelia. If she’s even half as feisty as you, no competitor of hers stands a chance!

  • Kristy says:

    The inner strength it takes to deal with your child’s illness, condition, whatever it is – is unbelievable! Warm thoughts to you and your family!!!

  • What a precious little light she is! I am new to this blog, so I was trying to figure out what could be wrong with her as I saw the pictures of her striding ahead through the halls. She reminded me of my own daughter (20 months old). Clearly, you and she are fighters, and I know you will continue to overcome. You will be in my prayers, and I will be following along from this point forward. Look forward to reading about your future successes!

  • Zak says:

    She is gonna kick ass and take names, I can just tell.

    Love to you guys.

  • Like everyone else is saying, she’s going to kick ass. She’ll be telling this story on her own blog one day…..or whatever the kids will be calling it in 15 years.

  • Dora says:

    Such a hard day. Been thinking of you and your warrior princess. xoxo

  • angi says:

    I *may* have read your entire blog today…Sorry, hope you don’t find it creepy. And now I will profess my undying love…and return for each new post to get a little bit more Aunt Becky love.

  • Tanya says:

    People with pacifiers shouldn’t be patients. But she will absolutely kick ass. Thinking good thoughts for you all.

  • You keep on fighting. You know your Pranksters have got your back!!

    I’d give you a big, mushy hug. . . if my arms could reach all the way to Chicago!

  • Aimee says:

    Beautiful post even with the sad inner lining. What a perfect little star necklace to make a point to your daughter that she is destined to be here for all the good in life. You, while fucked up funny, are one hell of an amazing Mom.

  • k@lakly says:

    I believe with every ounce of my war torn heart< she will continue to defy the odds and kick the holy shit out of anything that gets in her way. Just like her momma does.
    Shine on beautiful girl!
    xxoo

  • Betty M says:

    I’ve been away and have come back to devour your posts as usual. You and Amelia will get through this latest hurdle cos you rock the pair of you.

  • When I hear my windchimes, they make me think of Mimi. Her voice will ring out loud and clear, it’s just a matter of when. Keep on fighting, both of you.

  • Alicia says:

    She’s awesome. You’re awesome.

  • Erin says:

    Such a beautiful girl, Amelia. In all kinds of ways.

  • becky says:

    this made me want to cry. she’s beautiful and she’s doing amazingly.

  • Jacquie says:

    Oy, the pediatric neurologist. Quite a beast. We were immersed in this world for a while this last spring, and we came out okay. You know how amazingly resilient a child’s brain is, and your steadfast advocacy will bring Amelia all of the support,intervention, confidence, and love that she’ll need to plow right through any obstacles in her path toward continued awesomeness.

    (linky to the blog I kept while my boy when through is brain stuff)

  • anotherbecky says:

    Your daughter is so beautiful. She is an amazing child and I just know she will do amazing things. She has already beat the odds, she is going to be amazing :)

  • MXW says:

    What a gorgeous girl :) My mother has been a labor and delivery nurse for 20 something years and has always said neurologists are weird and have ego issues. Haha!

    A friend of mine lost a baby just a few weeks ago. She was just born too early to live. Her name was Mili.

    All the luck in the world to your beautiful fighter. She’s already done unbelievable things in the world, I’m excited to see/read what she gets up to next :)

  • CKJ411 says:

    A hug for you both.

  • Jessica says:

    Tears. Amelia is her mother’s daughter. You’ll both shine and shimmer on. Big hugs, love and light. “In lumine tuo videbimus lumen.”

  • Emmie Bee says:

    I’m a recent subscriber & this post was just amazing. You two are amazing.

  • Babe_Chilla says:

    I’m new to your blog, and your story. I love your writing style, and your spirit.

    Also, Amelia is oh so beautiful. I hope things get easier and more clear for you all very soon!

  • May The Force be with you, my friend!

  • Sherri says:

    New follower…can’t remember how I got here, but wow what a story. Your daughter has already been through more in her little life than most of us will ever face, and so have you. She is adorable, and I love how you bought her the necklace for the next battle.

  • Camilla says:

    Brain things are so scary. My daughter has static encephalitis (cerebral palsy) and I know what you mean about neurologists! Good luck to you and your beautiful little girl!

  • Opto Mom says:

    OMG, just look at her! She is so precious, and look how far you’ve come! She is a lucky baby, and you are a lucky mommy. I know, sometimes you feel like the unluckiest person in the world, but that sweet face will blow away the bad stuff every day!

    My cousin (who is like my brother) and his wife had twins that were born 13 weeks early, so they were both under 2 pounds. At this time, I was 8 months pregnant with my daughter so I was a big fat crybaby at the drop of a hat anyway. They lost one of the twins, and the other struggled for his life every day. After lots of therapy of every kind, he is a sweet, intelligent, healthy 9 year old today. He started out with all kinds of developmental delays, and it was hard as hell for everyone, but he has NO delays of any kind now. Just to see him running around with my daughter (generally getting scraped knees and other assorted boo boos) just makes me burst with laughter!

  • I want to tell you I hate you. Not in a stalk you and make your life miserable kind of way. In an “I want to be on the next plane to Chicago to give you a hug” hate you kind of way.

    You’re amazing. The Daver, Ben, and Alex are amazing. With the three of you, that little girl stands a zero percent change of not being awesome. And she’s got pranksters. Pretty sure she’s the only 1 year old I know with their own band of merry pranksters.

    We got this (and you). In that, I am certain.

  • Ann says:

    God Bless you, Aunt Becky- and your darling baby girl too! Cannot imagine your shoes and my heart hurts for you.

  • So glad your ped. neurologist was full of the awesome. I know that isn’t always the case. Thank you for sharing your story and Amelia’s. I think it helps people more than you can ever know. xoxo, stark. raving. mad. mommy.

  • aunt becky, you and amelia rock my socks. now please stop making me cry.

  • Denise says:

    She is a beautiful girl and she will kick all sorts of ass.

  • katrina says:

    Aunt Becky, you’re pulling my heart strings again…. you have written so beautifully about something so very difficult. Amelia will fight and shine even more brightly after this hurdle. She is your daughter, after all.

  • Kirsten says:

    As several commenters have said, the unknown is so very hard. But there is so much good going on with Amelia right now. So much. We will all keep hoping for more.

  • Bridget says:

    Hugs and prayers Aunt Becky – something tells me Amelia is gonna kick ASS and take names later!

  • Krissa says:

    Amelia is, indeed, full of light and beauty. From what you describe of her it is inside as well as obviously outside.
    I was in a car accident when I was almost 15 and, (long story short), hit my head very hard incurring an acute subdural hematoma.
    I have seen countless neurologists in the time since then, (1978), and they were all kind of dicks. Efficient. That is all.
    I was given a 5% chance to make it before they took me in to surgery and I thank God, quite often, that of all the desirable personality traits my doctor could have, he was… efficient.
    God bless you and Amelia. I will be praying for you.

  • Hockeymandad says:

    Awww, big mushy hugs and wet sloppy kisses to you all. You decide who gets what.

  • No Good says:

    “Mili always finds her way” Exactly right!

  • No Good says:

    “Mili always finds her way” Exactly right!

  • Chibi Jeebs says:

    “…because Mili always finds her way… ”

    You said it yourself, dear heart. She does and she will, I promise. <3

  • Mikaila says:

    I find it amusing that you think EXACTLY the way I do about neurologists because I was just telling my coworkers (in a medical records office in a hospital) YESTERDAY how rude and stuffy neurologists are! They are my least favorite practice.

    I am so glad this new one is full of awesome.

  • Mikaila says:

    I find it amusing that you think EXACTLY the way I do about neurologists because I was just telling my coworkers (in a medical records office in a hospital) YESTERDAY how rude and stuffy neurologists are! They are my least favorite practice.

    I am so glad this new one is full of awesome.

  • Oh, gosh. She’s beautiful. And perfect. (I have goosebumps. You are in my thoughts…)

  • God bless that sweet angel!

  • andygirl says:

    you’re such an amazing mom. woman. person. :D

  • Sarah P says:

    I hate the smell of lilies for the same reason.

    You have an amazing daughter, and based on what you’ve written about her so far, nothing ever wills stop her.

  • Sarah P says:

    I hate the smell of lilies for the same reason.

    You have an amazing daughter, and based on what you’ve written about her so far, nothing ever will stop her.

  • leanne says:

    What a precious little girl Amelia is. But you already knew that. My love and hugs to you all…

  • Emily R says:

    I am thinking of her. And you.

  • Johanne says:

    It sounds like she has been one amazing little fighter thus far, and I hope and pray that she will continue to kick ass and take no prisoners. Thinking good thoughts for you and Amelia.

  • sarah says:

    Beautifully written. Stunning…. and thank you for sharing. It inspires me to write more about Emerson :).

  • Aw Becky … you know that I enjoy your writing and especially your humor. But it’s posts like THIS ONE that I absolutely, without a doubt, LOVE. Mili is going to be just as wonderful … just as beautiful … just as STRONG as you!

  • Biz says:

    It’s a horrible, awful, unfair thing that children are ever “sick” – at any degree. You’ve got a strong, beautiful girl there who’s got one hell of a future ahead of her full of the light. She is lucky to have you and she’ll be lucky to turn out just like her mama.

  • Ashola says:

    Hordes of love and good wishes for you both.

  • The strength and beauty that you see if your little girl is in you too. I wish both of you the best. {hugs}

  • I’m married to a man who is in his residency toward becoming a pediatric neurologist. And so help me Jesus if he ever treats a family the way you describe, I’ll never have to divorce him because he’ll be dead. DEAD.

    If you ever need anything, assvice (with some input from a budding pediatric neurologist), an ear, a shoulder, I’m around.

    Me and your kid, with the brains that are too awesome to contain only in our skulls, we have to support each other. xoxo

    • Your Aunt Becky
      Twitter: mommywantsvodka
      says:

      I’m laughing because I know you and I know you’d have his balls if he treated someone like shit. Thanks, Katie. Also: you have to meet my Mili. I need a picture of my ass-kicking ladies. It’ll mean something to me, okay?

  • ABCfibi says:

    I am heartbroke that you and your beautiful baby girl have to go through this. Babies should not have to go see neurosurgeons. I am also convinced that you are both incredibly strong and Mili will grow to be an amazing woman like her mommy.

    I am blessed that I found your blog. You make me laugh and cry. Your writing is powerful.

  • Kristin
    Twitter: dragondream
    says:

    I told you, your Princess of Bells is going to conquer the world.

  • Jen says:

    Thinking of you. Seeing Amelia happy and whole and talking up a storm.

  • Kate says:

    I understand. In a way I wish I didn’t, but I do. Therefore, I have no words because I know there isn’t a thing I can say that is going to help right now, today.

    For what it’s worth, I know you’ll be okay. Not because you have no other option, but because you possess an inner strength that will enable you to keep going & still be okay, even when things suck.

    (((( Aunt Becky ))))

  • So glad your neuro is full of the awesome.I am abiding with you and the Princess of the Bells, Becky. Hoping for the best possible outcome.

    (And I’m sorry we didn’t get to connect more at BlogHer. You are one sought-after lady!)

    XOXO

  • When our son Brett was 2, he had a big stroke. They said he’d never talk or walk again. With years of therapy and lots of work and prayers he’s now a DJ in Austin. Keep the faith kiddo.

  • Heather says:

    You know I keep Princess Amelia in my prayers. I know the Lord has big plans for her. My own little Princess Penelope was born with a meningeocele. I have had to deal with neurologists for my own back issues from a car wreck so I know exactly what you are talking about when you say they are dicks. Surprisingly Penelope’s neuro is really nice. Her surgery has been scheduled for Oct. 5th.

  • GingerB says:

    Hey, we just saw a neurologist too. Hannah didn’t just get anoxic brain injury, she had an actual stroke. Woo-fucking-hoo. Damn neurologist is now off for a week so I can only get info from her nurse, not her. They are bastard people and I hate their ass faces. But you my dear, Hannah and I, we love you and Amelia Grace. Let’s kick some ass together.

  • karen says:

    Thinking of you all.

  • WeaselMomma says:

    Milli is a beautiful girl. This is some extraordinarily beautiful writing that is the kind that can only come from deep within the soul and the core of emotion. Thank you for sharing Milli and your soul with me. I hope that this journey is a smooth road full of gorgeous scenery and calm breezes.

  • Ms. Moon says:

    That girl is amazing as is her mama. We are all different in one way or another. Her difference was visible at birth. She will not be like everyone else but that is okay and that is fine. Her differences will make her stronger. Your love makes her whole.

  • Mrs Soup says:

    Shine on, Princess. Shine on.

  • Yvonne says:

    Just seeing those picture of Mili leading the way makes me believe that she’ll kick ass in this, too. Praying for you all, as the unknown becomes known. Blessings.

  • Michelle says:

    As funny of a woman as you are…your brilliant writing today brought me to tears..not the graceful one tear streaming down the cheek cry but the snot coming out of my nose cry. We all know that what ever obstacle you face you ladies will kick it in the balls and take names! hugs to both of you….

  • daisybv2 says:

    The Princess will kick some butt… Hugs to you both

  • Ah there those tears are again…

  • Mwa says:

    You have me in your corner, lovely girls. I wish you all the best. xxx

  • Andra says:

    I wish that no parent ever had to see their child in pain, or go through hurt of any kind. I hope that everything is proven to be wonderful for Princess Amelia! Its almost impossible to tell yourself that everything is going to be fine, when you can smell the hospital disinfectants burning the lining of your nose, and knowing that being fine is not the thing hospitals are know for. Have faith. Things are going to be perfect. How can they not? With this much love surrounding you, it HAS to be!

  • Mer says:

    Your strength, and Amelia’s strength, they both amaze me. Thinking of you.

  • MamaCas says:

    Hugs and love.

  • the image of her running through the halls… perfect. she will conquer.

  • biatch, I am always here for you. I might not be around much but I am thinking of you, always.

  • StacieT says:

    I have no doubt in my mind that she is going to shine. In fact, she is going to wow the world with the brilliance of her light. She is amazing!

    Sending love and hugs your way. I know this appointment took you to some dark places. Focus on Amelia’s light. She will see you through…

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