Fresh from the surgical floor, because she was a tiny baby, they brought my daughter down to the PICU to recover. We nervously paced about the Family Waiting room for her nurse to come and get us so that we could see her, I can’t even tell you how long we sat there. Time in the PICU, like the NICU and any other ICU is kind of timeless. 3AM and 3PM aren’t a whole lot different, although there are a lot less visitors at 3AM. If things are good, that is.

After what seemed at least 20 hours, but was probably 7 or 8 minutes, the nurse came to grab us to take us to our daughter. And there she was, in that pesky ICU room RIGHTNEXTTO the nurse’s station again (different floor, sameish room arrangement) because she was fresh post-op from brain surgery and probably the most critical patient on the floor.

But there she was, head swaddled in yards of bandages and what looked like painting tape but was (let’s hope) not. She was awake and hoarse from being trach-ed, confused and crying. Her precious hand, her best friend, was currently splinted and unavailable for her noming pleasure, and she was very obviously swollen from surgery, but she was alive. Amelia, she was alive.

While it may have bothered some to see their child this way, trust me, this was a relief.

She calmed down and eventually fell asleep. As she slept off her surgery there in the PICU breathing the plastic smell of anesthesia in and out with every breath after miraculous breath. Her father hovered near her crib, her blonde shadow, unwilling to leave his only daughter for a moment, and feeling particularly restless, I wandered down to the gift shop.

I’m a total sucker for gift shops, ESPECIALLY those aimed at children. I pulled out my AMEX there and bought pretty much every pink frilly thing I could find. I bought a swarm of balloons–the big sparkly Mylar ones that all proudly claimed “IT’S A GIRL!”–probably 10 or 12 different huge balloons. I was celebrating the way I couldn’t before. My daughter was HERE, dammit, and I was going to shout it from the rooftops.

I teared up a little as I paid for my carefully chosen purchases, running my hands over the corny chocolate “IT’S A GIRL” cigars that I’d bought for the boys and marveling at how quickly one could go from miserable and numb to mind-blowingly happy. The volunteer gave me a weird look as I signed my name gleefully to the exorbitant price slip, and I suppose I must have looked weird. Maybe she thought that I was crying over the cost of it all, but she didn’t know I’d have paid 30 times the amount listed there.

The good news just kept rolling in.

As a testament to her grace and strength rather than being discharged 3-5 days later, Amelia was sent home with her adoring fans the very next day with a rather ugly 2 inch scar up the back of her head. We went home with our other children (who’d happened to be there when she was discharged) all of them crammed into our CR-V, a whole family at last. I don’t remember much about that night, except celebrating with crappy champagne and awesome Chinese food.

Your guess is as good as mine as to how this will affect her in the long run. The likelihood that she is affected somehow is, well, you read the statistics. And since she is being followed by pretty much every state and government program you can think of (and THEN some), they’ll probably find something of note. Because examine anyone under a microscope, and you’ll find something wrong.

She seems normal, and if I didn’t see the stretching scar bisecting the back of her precious head (it now takes up a good portion of her head) and feel the skull implant below, I’d not have thought anything wrong with her. Truthfully, as I told her in the NICU, crying into her newborn head, I don’t care if she’s stupid or slow or ugly. And I don’t.

My daughter is perfect and lovely just the way she is. And after all she’s been through, I have no doubt she will become a particle physicist. Because that is what will happen. And if she’s not, well, as I always say (usually referring to myself), the world needs ditch diggers too.

As for rest of us, we’ve all come out the other side a little different. I don’t know how you can’t.

Ben hates hospitals because “they make mom cry,” Alex flips the shit OUT when I’m not home with him, immediately thinking I’ll be gone for longer than 20 minutes. Dave is, well, still Dave.

We’ve both lost a few friends during this ordeal, and maybe these were relationships that were doomed from well before this, it makes us both sad. I’m tired of losing friends during Major Life Changes, but I suppose it happens to us all. Dave has lost some of his naivety but his rose colored glasses always turn the world into a happier place than it is. I love this about him.

(I also hate this about him sometimes, when I want someone to cry and Rage Against The Man with me, but this is not important for this entry)

And as for me, you know that I have a touch of PTSD. I wrote this whole story down here, in my blog so that maybe some of what happened could be let out, like draining a puss-filled wound or dumping out a shitty martini. I hope that the malignancy of this whole effed up situation will have been sussed out and lose some of the power over me.

One day, I hope this will just turn into another story I can tell, just like when I went to the hospital because I peed my pants (twice!) or when I had my first colonoscopy at age 23. I hope that I eventually stop associating the smell of alcohol and hospital soap with my daughter and pray that as her hair grows over the scar, I am able to make as much peace with this as best as I can.

I love my daughter, she is here, and she is well. That is blissfully simple.

I am lucky to be able to do this, to burrow my face into her sweet smelling face while she gnaws wetly on my nose or my cheek, kissing her while I tear up with joy, because I have my daughter. But I will always think of those who weren’t so fortunate, and I will cry and shake my fist at the sky, because that is what you do when you realize the world is not a fair place. Because it’s not.

And while I know that I will never look back on this and laugh, because it’s just not funny, I hope to always look back to see how blessed we are. I want to remember the amazing grace; the simple unbearable good that we’ve found along the way.

I will never take this, any of this for granted.




70 thoughts on “Amazing Grace

  1. Well done, Becky! She is a peach – adorable, pink, and fuzzy – and I have no doubt that she will grow up to make her mark on the world. She’s already made one on our hearts.

  2. One of my daughters was hit by a car and injured terribly fifteen years ago. I still can’t think or talk about that day without crying, although she is fine and healthy now. Look- I am NOT one of those people who think that everything happens for a reason. I do not believe that. Some things just happen. BUT, having gone through them, we are stronger and more grateful people and we live our lives and we love our loves differently and probably better.
    I know you will.

  3. And again SOB. I am so glad she is okay now. I am taking a Psychology class this summer and one of the articles I was reading was about PTSD in parents of children dx with life threatening problems. I can completely understand how it would happen to you.
    As for losing friends through this, I agree. When we lost Kai we lost a lot of “friends” too. If someone cant stick with you through the hardest times, they arent worthy of your love and friendship.

  4. I generally blog while I pump, and if this batch of milk is all full of salty tears, Hannah will blame you, Becks, because here I am weeping on a sunny Sunday afternoon, again! But at least they are tears of joy at the outcome and only some for sadness, for the pain of your journey. I wish you didn’t have to go through this to be able to see what your blessings are, as I wish I didn’t have my own similar journey and perioidic trips to the “oh fuck” zone where I am reminded that my dear baby is worth any pain and fear and hell because here she is, in all her glory. Daughters! We are indeed, lucky, lucky, lucky.

  5. There. Now doesn’t it feel better? (That’s what I tell my kids when they’ve done something hard all by themselves.)

    You are an amazing mama. Love you.

  6. Pingback: Amazing Grace | plastic surgery
  7. Becky

    I love the way you express yourself in your writing…you write beautiful words. God Bless your family

  8. Thank you for writing this. I hate that you had to go through it. But I love you. And next time I am stateside, I am coming to stalk you. Fo’ reals!

  9. Wow. Just finished reading all of your missed posts, and rather than comment each, I figured I’d just leave one here: thank you for sharing in detail that ordeal. I’m sure it must have been impossible to experience, yet somehow you did, and you have Amelia for it.

  10. Thank goodness your sweet little baby made it through all of that. I am so happy that you have your daughter. Your totally adorable pink little bundle of sweetness 🙂

  11. Oh sweetie! I was tearing up just reading this.
    I know she’ll be just fine. My nephew had major surgery on his head when he was 6 months old and he’s now a perfectly normal moody teenager. She’ll grow up to scream and yell about how you just don’t understand before you know it 😉 And you’ll just be so thankful for that!
    Hugs and enjoy every minute!!!

  12. I am grateful that you decided to share your story with us. I understand exactly what you mean about losing friends during major life changes. Thanks to my last one I lost nearly every friend I (thought I) had. Sometimes, it is for the better in the long run, but it still sucks. You learn to cherish the friends that stick by you and to choose your new friends more wisely I think. The most important thing is that you came out of it with your best friends – your husband, sons, and daughter.

  13. When you wonder how such awful things can ever happen, sometimes you can see all the lessons that have been learned from it, and all the good that has formed around all the bad, and almost, ALMOST think that there was a good reason for it all. (And still sometimes you want to say “F— You” to the God that made it happen, but we try not to think that way, right?)

  14. From the perspective of 22 years on, I can tell you: This WILL turn into another story you can tell. There is all kinds of awesome awaiting. Your daughter will continue to delight you with what she does. The wonderful gift from an experience like this (despite asshole neurosurgeons and “well-meaning” educational professionals in my son’s and mine) is perspective. We are more than capable of eliminating the stressors and distractions that preoccupy the days of many, because they simply don’t matter by comparison. And someday, your daughter will read this and marvel, too.

  15. When my sister’s son was born with a malformed hand, she said to her husband that everyone has something wrong with them, his just happens to be physical. Here’s hoping the only thing “wrong” with Amelia is that scar. But even if it’s not, it’s not the end of the world – and she has a great Mom to see her through any troubles she has.

  16. I have been reading every bit of this story. It’s funny … well, more odd than funny … that although the challenges I have faced with my own son (now 13) are much different, the feelings – the agony – the joy – are so very much the same.

    Thank you for sharing this!

  17. Thank God this story has been told and that all is well so far. Like you said, she is perfect and we all love her, though I still need to get my hands on her. I guess June passed us by before we knew it.
    Question for you, maybe I missed it in another entry but I am too lazy to go back are read THEM ALL again. 😉 Anyway, what is the skull implant you mentioned? I thought they just removed the tissue that was on the back of her head. Did they actually have to repair a hole in her skull?
    I am so glad to see that I am not the only one who ended up with a bald daughter though. 😉 Marjorie at 18 months finally had enough hair to put in one teeny little pony tail and then I trimmed her hair and I swear it sucked back into her head and is short again now. 😉

  18. I can totally relate to what you said about losing friends during Major Life Changes, and it sucks. But the good thing about it is that your true friends always come through.

    I can’t say it enough-she is beautiful!!

  19. how the FUCK IS SHE THAT BIG already?!?! and really, beautiful too.

    as the three grew, i started to see little white spots on them all. it took me a long time to figure out what it was. SCARS. nicu scars, little dots from the iv lines and little lines from the heel pricks. they weren’t visible until the kids were probably, i don’t know, 18 months? i was so freaked out by the reminder of their (totally uneventful, btw) nicu stay…then the other, way more horrible thing happened. now i DO laugh when i see those piddly little silvery dots and dashes. and, like you, i am grateful, too. tiny reminders that they are HERE.

  20. wow, just wow. I’ve been sniffling and smiling that everything went well. I’m so glad I got to share in the entire story. I don’t think I was a reader when you were actually going through this, but I’m very happy I got to participate now.
    Go Amelia!

  21. I am new to your blog– came here through Twitter, and I love it. These past entries about your daughter’s birth have been amazing reads. I cried my face off at the pink balloon and cigar part. You’re a fantastic writer, and your daughter is beautiful!

  22. I think it’s so brave and great that you are writing all this down. It will be amazing to share it with Amelia when she’s older. Good for you!

  23. Aunt Becky once again an amazing story! I hope that your PTSD gets better I am thinking of you as it is something I am dealing with as well.

    Hang in there and keep writing. God Bless your family and Amelia

  24. Your daughter is georgous!!! You are amazing I would be batshit crazy if I went through something like that! My BF of 16 years lost her daughter last year. I will never forget standing in the kitchen and getting the phone call. I was 39 weeks pregnant and left that night and drove 6 and 1/2 hours back to my home town in Tennessee to be with her. We layed her angel daughter to rest on what would have been her 2nd birthday. A true friend will always be there for you as I was for her and she would be for me. You think of your best friend before yourself. I was about 2 hours out before I thought oh shit I might want to call my dr. and make sure he thinks its ok I leave the state 39 weeks prego. It turned out the poor girl had carpo miopathy (spelling). Anyways glad to see your daughter is ok.

  25. May I add my tears of joy to yours? My daughter was T-boned by an asshole who ran a stoplight in a pickup truck three years ago as she rode her bike to work. She was 27 at the time. It totally crushed her knee and she’s had several surgeries since. She’s able to walk well enough now but still has pain. When she called to tell me about the accident – oh yeah… I was notified after the fact – cussed her too I did – I thought I was going to vomit, have a heart attack, stroke out, you name it. The fear of losing a child never goes away. It just hides out somewhere in the dark recesses of brain parts you don’t use much because it would make us all totally nuts if we had to live with it on a daily basis. Looking at Amelia’s photos, I think she’s going to prove to all those neuroguys she’s perfectly perfect. And Mommy can stop worrying… at least about this. Even with all the periods of parenthood that scare you shitless, I wouldn’t trade it for anything. Hug your children for me. They are so lucky to have you as their mother.

  26. Your daughter is so amazingly beautiful, just like you. Those friends that you lost? They would probably have left otherwise…at least in this event, you had something else to occupy your mind instead of crappy friends leaving when you needed them.

    I pray daily that everything continues to go perfect. That your daughter continuously grows stronger and better and remains as amazing as she is. I’ve prayed this ever since I first found your blog and know that it will happen.

    You may have lost loser friends, but I’d like to think you gained some pretty nice ones in exchange.


  27. As I have said before, you and the Daver should be so proud of yourselves. Such strength you have shown through this ordeal. And to share it like this; touching so many people and allowing them to experience it with you. Thank you.
    Sending you and Amelia many hugs and squishes from me! She is quite the Princess. So I guess that makes you the Queen, right? 😉

  28. I am sitting at work crying. I am so happy that things seem to be working out. And those friends you lost- they might be back someday, if you want them. You’re young, and lots of people, young and old, don’t know how to deal in difficult times. They’re afraid their going to do the wrong thing, so they do nothing. But most learn, and realize what assholes they were when they were younger.
    Blessings to you and your beautiful family. Thanks for sharing. Hope it is cathartic!

  29. She’s gorgeous! I am so glad she is ok. I hope you can chalk this up to a one time ordeal that soon becomes a memory from a long time ago. And keep writing and get that PTSD out.

  30. That experience would cause trauma to the hardest person. I’m so glad it turned out so well. I intend to ignore statistics now since I had a less than 10% chance of having a child, and I beat the odds. Whatever the chances are that she’ll have a disability, there is also a chance she won’t.

  31. Hi – I love your blog SOOOOOOOO much. I want to encourage you Becky. I was born 14 weeks early in 1984 and I am totally fine. Miracles can and do happen. I have two scars one on my chest and one on my neck – and I hate math – but other than that I escaped unscathed. I’m happily married, going to art school and getting straight A’s.

    My parents also decided to love me no matter what shape I would end up in, and I think that is pretty awesome. My parents are pretty amazing anyways…but that’s another story.

    If your daughter needs tutoring someday, get her tutoring and most importantly – help her find SOMETHING she is good at. Of course this goes for all children because far before they find out they are great at art or ballet they KNOW they suck at math.

    Best of luck to you.

  32. Thank you for telling us your story. I want to say I’m glad you’re all ok, but “ok” just doesn’t seem like the right word. Because you’ve all been altered,too, and the word ‘ok’ just doesn’t do that justice.

  33. I hope that it helped to write it down; I know that I was deeply touched by being able to read it. I am very grateful that you are able and willing to share your story. It makes me a lot more grateful for all the good things I have–and whenever I have worries, large or small, it makes me think that one way or another, I will in fact get through it. You may come out the other side different, and you may end up with the worst outcome, but somehow, you will get through it. That’s a good thing to remember.

  34. You may have lost some friends durning this whole process but you gained some as well.

    “Some people come into our lives and quickly go.
    Some people move our souls to dance. They awaken us to
    new understanding with the passing whisper of their wisdom.
    Some people make the sky more beautiful to gaze upon.
    They stay in our lives for awhile, leave footprints
    on our hearts, and we are never ever the same.”
    ~ Flavia Weedn

    May your heart be lighter, the future brighter and may your children blossom under your love. Your children are very blessed to have you for a mother. <3

  35. Rebecca, I never saw your blog before today, just one of those happy accidents. Some day every person on the planet will be connected with every other person on the planet via a hyperlink eh?

    I wanted you to know what you have done is nothing short of miraculous. I’m on the computer everyday (unemployed) and I am an avid reader, only an avid reader of books, magazines, cereal boxes…

    But on the computer I am textbook ADD. I like my reading to be blurb length, optimally with a hearty LOL at the end… My writing on the internets too, is blurb length. I am a member of a ridiculous number of forums.

    BUT I sat here immobile for I think 2 hrs, ok I peed… reading your story.
    It’s been a long time since someone’s writing ran me so thoroughly thru the gamut of emotions that yours did.

    My “baby” is 26 and I am no longer in the land of mommies…nor do I particularly want to be at this point *sheepish grin*

    But my estrogen red lined today.

    In some weird way I’m mourning that I was late and not one of the “Internet” out there trying in vain to comfort you, and at the same time immensely relieved that I wasn’t reading it in real time, unsure of what would happen, god that sounds awful, but I’m not deleting it.
    I shed copious tears of joy and relief at the end.

    You have a reader as long as you continue to write.

    Thank you for sharing, and know in doing so you have sent out into the world…….. a ripple.

  36. Aunt Becky – I don’t know how I got here (insomnia for me tends to equal link hopping), but I’m so glad I did. I usually lurk for a long while before I venture into comment making territory, but I just had to say something about these posts…Thank you for sharing your story, Amelia’s story. I don’t have anything awesome to say, just wanted you to know how much your writing touched me. I hope that that is enough.

  37. I have just reread this whole series of posts. All your posts while this nightmare was happening were heartbreaking but it is so moving to read the reflections now we know the ending is so good. Good on you Aunt Becky. Wishing you and yours all happiness. x

  38. Yeah … so I just finished reading the whole beautiful/tragic saga and that was just beautiful. I wish I would have “known” you then. I was going through the worst period of my life as well, but in a relationship sense. My pain is/was microscopic to what you were going through. Wow. I am now 31 weeks along with my 2nd. He’s a boy. My little man. I can’t wait to see his little face and tiny fingers!

    While it’s scary to think we’re not out of the woods yet, I still enjoy (is that the right word?) your story because I felt like I was right there with you. Your husband is a bad ass. Seriously. Imagine going through that shit with a selfish weakling.

    Amelia’s just beautiful and glowing and perfect in every way. Thanks, Aunt Becky.

    1. I wish I’d known you, too and I’m sorry that things were so tough for you. I’ve gone through bad relationships too and I know how that can be. I hope that you find peace and strength in your son. You will. I know it.

      Our pain is what defines us and makes us who we are. At the end of all of this, I wouldn’t change it. Maybe it’s because I’ve had the outcome that I did, but it’s changed me. I like the new me more than who I was before. My priorities have shifted and I am different.

  39. just wanted to say how much your story moved me, I had to read it beginning to end. so so glad you have your daughter & that she is doing so well. it feels funny to care so much, since I don’t know you & just started reading your blog, but I do, & I’m just so glad for you.

  40. I came across your (hilarious) blog in the webbie awards; I too have a daughter who was born with an encephalocele, except hers was anterior and right between her eyes. After many experiences like yours, scary as shit doctor reports, therapists, interventions, treatments, assessments and that stuff—she is now a 7 year old DYNAMO….she’s smart, sassy, and wonderful. She just got “most improved” in her 1st grade class for the first sememster. She’s reading and doing all the things they told us she’d never do.

    I’m glad to read your success story and my success story and we give others hope. I lost two babies in utero; now we know this genetic disease (arthrogryposis multiplex congenita; hechts-beals syndrome) we carry most likely caused a massive encephalocele that was not compatitble with life.

    Anyhow, happy trails to your beautiful Amelia as she sets sail on life and rips it up!!!! She’s gonna be a rockstar 🙂

    My daughter’s name is Marcy, by the way.

    1. GO MARCY! And nice to meet you! I’m hoping to know more about you both. Believe it or not, I haven’t met very many of us along the way with the same type of neural tube defect.

      Give Marcy a kiss for me and I hope to read your blog later today. So glad to have met you.

  41. I also came across your blog on the bloggies site, and rather than chock myself full of hilarity in your typical posts, I went straight for the heartstrings and am so glad. Such a great story and such an amazing outcome. As someone with no normal life experiences yet, I cannot empathize with being a mother, but for some reason, I find this series immensely comforting and plan on following and finding out exactly what this little miracle has in store!

    1. I’m so glad that you found Mimi’s story. She’s such an amazing kiddo and she amazes me every single day. Pretty sure she’s going to take over the world. Hope she uses that power for good 😉

      It’s so very nice to meet you. xoxo

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