Part I

Part II

Part III

Part IV

Part V

Part VI

Part VII

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 (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, I’ve got some post traumatic stress disorder that I’m working through slowly.

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.

In her short time on the planet, she’s taught me so much. She’s made me a better, kinder, more compassionate person, and she’s touched so many people along the way. Her life, it seems, even for being so small, has been so big.

I love my daughter, she is here, and she is well. That, if nothing else, 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, 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. The world is a good place. I believe that wholly and with all that I am.

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

amelia-grace

Part IX

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

5 Responses to Amazing Grace

  • Lauren Gold says:

    Hi Becky,
    I just wanted to comment that I recently found your blog and I really love it. My son Aaron was born with hypoxic ischemic encephalopathy (his blog is above) and something about this post about your daughter, puts into words EXACTLY how I feel about my boy. So glad you have your precious girl!
    Lauren

  • Deanna Longo says:

    Hi Aunt Becky – I just found your site and I have spent most of the day reading your archives. This story about your daughter is amazing. I know you’ve had other readers post their experiences, but I couldn’t help but share mine. When my now 19year old was born he was rushed off and taken by helecopter to UCLA Medical Center in Westwood, California – He was my second child and I thought I had this whole newborn thing down. I worked at the local hospital as an admitting clerk in the Emergency Room and I worked the graveyard shift. Everyone thought that I was crazy to keep working but I just told them that if i went into labor just wheel me upstairs. Well that never happened and me becoming the human water ballon made my doctor take me off work and i was admitted a couple of days later where i spent 17 hours being induced to get him here. I had originally really wanted another girl,but after i had him my mom thought i was too standoffish and said to me “what is your problem? you really wanted a girl that bad” to which i replyed that if anyone had been listening to me i think there is something wrong with him. I couldn’t explain it… just like you i had this overwhelming fear that just wouldn’t go away, then about 20 minutes later all hell broke loose. My doctor was there and they were running as many tests as they could do at this small community hospital and before i new it the life flight crew was here and they were poking him and getting him ready for the ride off. I sat in a wheelchair in the ambulance bay and watched as they put in and ALL the stuff into that helecopter and took off with him. It was the begining of a really long night. He had a congential heart defcit – Transposition of the Great Vessels. He needed open heart surgery, however he needed to get stable first – its a long story and i won’t bore you with the details, but trust me i think you already know how i felt. Turns out he was going to be the 5th patient in the country to have the type of surgery that fixed this. Excuse me??? 5th? WTF??? The night before surgery I sat down with the doctors and had to sign all these forms all of which said that he could die. Talk about hard… Now i have worked in the ER for about 3 years now and i was starting to embark into nursing school, so i only knew enough stuff to make myself dangerous! 5 days after he was born he had his surgery which lasted about 71/2 hours. He was one the ventilator, off the vent, on, off, on, off, on, off, on, off – then another surgery to plicate his diaphram because the right side of his diaphram wasn’t working and it was collapsing his lung – after 33 days in the NICU I was finally able to bring him home. He was brusied, stitched, medicated, lost weight, but he was home and he was mine. Just how you feel. Trust me your daughter will be the light of your life forever. Her story will get eaiser to tell, and it wont make you cry as much. However i warn you… whenever some minor milestone happens in her life you WILL cry and for those HUGE moments in their life you WILL SOB!!! it is what it is! Thanks for reading and you have a fan in me for life! BTW – My kid ended up being a wrestler in High School… He’s now wrestling at the Community College level! It will amaze you just how “normal” she will be!

  • Jessica says:

    Typing through tears, this is such an amazing story and I can’t tell you how much I love the end and all you have learned from what you went through. My triplets were born three months early and we lost one of our daughters as an infant as a result. We watched the other two struggle to survive and the whole experience gave me an appreciate for life that is beyond description. You have it. You described it.

  • Kathleen May says:

    I am writing from a small island called San Andrés in Colombi, South America. I have been so touched by your story taht I am in tears. I have a 7 month old daughter who’s my little miracle but I didn’t have to go through even half of what you did. Putting it shortly: she will show along the way.
    I write to say THANK YOU with heartfelt passiona and sincerity; thank you for sharing, thank you for giving me hope and strenght through your powerful words.

  • Ali says:

    I just came across the site from some random Google search, and I’m sort of glad for Google whacking, because you are awesome as hell. Way better to hit upon this than to hit upon some awful story about Miley Cyrus’ camel toe or whatever. I hope beautiful Amelia’s doing well, and at least meets you halfway on the pink and the frilly.

    “We’ve both lost a few friends during this ordeal, and maybe these were relationships that were doomed from well before this.”

    I’ll tell you what? One of the few bright spots of your awful experience is that you’re probably found some new friends who think you’re worth plenty, through the best of times and through times like this that truly separate the wheat from the chaff. (And also? As a student nurse to be? This is great reading to reinforce what I *don’t* want to be, so thank you from the bottom of my heart for sharing. I am so very glad that you were able to receive comfort from people near and far at what was obviously a time so frightening and scary I can’t even imagine.)

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