Encephalocele

This post is going to be harder for me to write than my daughter's birth story, Uncertain Blessings.

Sure, it wasn't easy to talk about how my baby was diagnosed, in utero, with a potentially lethal neural tube defect (encephalocele) and a Chiari Malformation. It wasn't easy to talk about the fear, and later the hope, that I felt as I went through the remaining 18 weeks of my pregnancy. It wasn't easy to describe how I felt as we waited to see if our baby girl would survive her birth, but it was a little easier to talk about all of that because she survived.

She not only survived, she is kicking ass! Born four weeks early, she had neurosurgery at 11 days old and just 3 days later she went home from the NICU and became the star of my world. Even though she was on C-PAP for her first three days in the NICU, and she didn't start breastfeeding until she was five days old, she was a champ and nursed until she stopped on her own at 13 and a half months.

She was a little late to roll over, but she could sit unassisted at five and a half months. She started crawling a little late at 13 months, and at 16 months she has only one real word, but she can sign a few words, and point to more than 10 of her body parts!

Her words may be a little slow to come, but she is amazing! She has no serious medical issues related to the encephalocele or the Chiari malformation. She is a great eater, a great sleeper, and a super cool kiddo. She loves books and music, and she recently began to take interest in playing with our super lazy dog, Samson. In short, life is good.

So why am I still scared?

We didn't move Lily into her own room until she was 8 months old. There weren't any medical reasons behind this.  Sure, I was still breastfeeding, but that is not why we kept her in our room for so long. She stayed with us because I was not ready to let her move across the hall. I wasn't ready to let her out of my sight.

I was scared to death that something would happen to her in the middle of the night, and I would lose her. I wanted to keep her close so I could literally hear her breathing. So I did, for 8 months. I would only agreed to move her if we could buy one of those stupidly expensive video monitors. My husband agreed because he knew that if she slept in her own room that we would all get more sleep. Of course, he was right. When we moved her to her crib, everyone slept better, but I still worried.

At first, I would wake up every couple of hours in a panic and I would check the monitor. Truth be told, I did this for several months when she was still sleeping in our room. I would fall asleep and then I would suddenly remember, "I have a baby! What if she stopped breathing? How could I be so irresponsible as to fall asleep?" I would jump up and gently lay my hand on her back to make sure she was breathing.

Now that she is in her own room, I still wake in the middle of the night and try to focus my eyes enough to see her breathing on the monitor.  If I can't see the gentle rise and fall of her little chest then I quietly creep into her room to either listen for her breathing or lay my hand upon her to check. Sometimes I do both.

Here is the confession that I have to make, the reason I am writing this post.

The thing that I have never said out loud to anyone.

Every time I lay my hand upon her small body I almost expect that, this time, she won't be breathing. I prepare myself for the worst: I have lost her. She is gone.

Wow, just reading that scares the shit out of me. Why do I think that? It drives me crazy. In some ways, I blame my mother, she always thinks the worst things are going to happen to the people that she loves and it seems she has passed that irrational thought process down to me. She says she is just trying to prepare herself for the worst, but I don't buy it.

So why do I feel this way? I wish I knew.

Maybe it's because my dad left us when I was young, so I expect to be abandoned. Maybe it's because I lost so many family members and attended countless funerals before I was even a teenager, that I expect everyone I love to die.  Maybe I am slowing losing my mind. I don't know why I think the worst, but I do, and it sucks.

In the weeks before I got married, every time my husband left the house without me I prayed that he would make it home alive to me.  I had a completely irrational fear that the love of my life was going to die before I could marry him. I still worry about him when we're not together, but not as much as I worry about Lily.

I just wish it would stop. I wish I could get the image of her lifeless body out of my head. I hate that I feel this way because she deserves better. She is such a fighter and I KNOW she is a fighter, but I can't shake this feeling. I don't know how to stop, and I really wish I could because she deserves better.

My husband deserves better. I deserve better.

“It’s fine, she’s been grabbing me for the last half hour,” my husband grumbles as I pull my daughter’s stubby little fingers from his shirt for the tenth time. Lily Grace turns back towards me, flashes me a smile, and blows a raspberry. It’s six in the morning, and while neither one of us like being up at this hour, we can’t help but find our daughter hilarious. The thing is, a year ago, we weren’t even sure that our child would be breathing, much less smiling.

We found out that I was pregnant on our one-year anniversary, and we were beyond excited. Aside from a minor bleeding incident at around 12 weeks, things were going well with the pregnancy. I had a terrible experience with my first OB, so at around 15 weeks I switched to a different doctor who happened to be affiliated with one of the best children’s hospitals in New York.

On January 20, 2010 – one year ago today – my husband and I went to the doctor’s for the "routine" 20-week anatomy scan. It was one of those mornings where everything was going right. Even though it was mid-January, the sun was shining, and we had actually arrived on time (for once), and we even found a sweet parking spot in front of the two-hour meters!

We couldn’t wait to get another peek of out little one. When we entered the ultrasound room, the tech told us that she would do the scan and then the doctor would come in to talk to us after. As I lay on the table, my newly swollen belly covered in globby goo, the tech went through all the images one by one, measuring each precious part of our baby, being careful not to reveal the baby’s gender (this is our first, and we didn’t want to know).

I remember thinking to myself that she seemed rather somber, but I figured that she was just focused, which was fine with me. After the scan, the tech left and shortly thereafter, the doctor (who I had never met before) walked in and said, "Well, there is a big problem with the baby's head, a big problem."

This is how our journey began.

It’s not like me to forget the details, but even as I sit here writing this, I really cannot remember a word the doctor said after she made her terrible announcement.

I do remember that I started to cry, and the doctor told me, “Go ahead, you will be doing a lot of that.” I know she pointed to things on the screen, things on our baby, and explained what they were, but when I walked out of there, I really did not know what was wrong with our baby. My husband tells me I was in shock.

I started to snap out of it when I got on the phone with my OB and I heard her say, “incompatible with life,” and “the genetic counselor will be scheduling you for a termination next week.” An appointment to meet with the genetic counselor was made, but we had to wait an hour.

I will never forget those sixty minutes. Ever.

The sun smacked us in the face as soon as we exited the doctor’s office, and even though it wasn’t really that cold for January, we were chilled to the bone. We walked across the street to a little courtyard, sat on an icy bench, and waited. I remember wondering out loud why this was happening, as if my poor husband had an answer to that. Why would God give us a child only to take it away?

We paced back and forth from bench to bench, careful to avoid the glances of others passing by us. I felt empty, as if the child inside of me was already gone. That doctor took it from me the moment she walked into the ultrasound room exalting her news about our baby’s head. Our baby, a baby we would never raise.

An hour later, we picked ourselves up and made our way over to the genetic counselor’s office to plan the beginning of the end. Once we got there, the clouds parted a bit, and things got a little brighter in that small little room.  We were told that the ultrasound revealed that the baby had a posterior encephalocele.

An encephalocele is a neural tube defect. The neural tube is the tissue of an embryo that becomes the brain, spinal cord, and the surrounding bones. It is a rare disorder in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain (the meninges) can protrude into a sac-like formation.

In the United States, encephaloceles occur in approximately 1-4 per 10,000 live births, but only 21%, or one in five, are born alive. Of those born alive, only half will survive.

This, however, was not the only issue found. The ultrasound also revealed a possible Chiari Malformation, which is an abnormal formation of the cerebellum. This malformation can be asymptomatic, or it can cause muscle weakness, fatigue, difficulty breathing and swallowing, paralysis and even death. Still, there was hope.

The counselor explained that our first option (now we had options?) was to have an amniocentesis done to determine whether there were any chromosomal abnormalities, and to undergo genetic testing to rule out any genetic defects. If there were no lethal abnormalities were detected then we would proceed to an MRI to see if the encephalocele was filled with fluid or brain matter.

Now we were confused.

We walked in there thinking that we were going to lose our baby, and now we were hearing that the baby could survive. We were cautiously informed that IF the amniocentesis came back with no abnormalities, AND the genetic screening came back without issues, AND the encephalocele was not filled with brain matter, AND the baby survived after birth, then maybe, just maybe, the baby would only have slight developmental delays.

Always the rational one, Will stopped the counselor before she could say another word and told her that there has to be some mistake because we were told that our baby would not even survive the pregnancy.

After a few phone calls, the counselor reached the doctor and confirmed that the baby appeared to have a posterior encephalocele, and while rare and potentially lethal, our baby could possibly survive that particular defect (we later learned that my OB thought the attending doctor said that the baby had an anencephaly, a fatal birth defect).

Once this was cleared up, the counselor asked us what we wanted to do.

At first we didn’t understand what she was asking, but then we realized – she was asking us if we wanted to continue with the pregnancy. I looked into my husband’s eyes and our answer was a resounding yes.

If there was hope, we wanted to keep going.

The first of many blessings to come was the fact that we were already at an amazing hospital, and we were able to do the amniocentesis and the genetic testing that same day.

Two excruciating, dark, cold and isolating days later we learned that there were no chromosomal abnormalities and no genetic defects. We had just won our first victory. Not only was this pivotal to our baby’s prognosis, but it also meant that the likelihood that this would happen in a subsequent pregnancy was very, very low. We were later told by the neurosurgeon that her encephalocele was simply a fluke.

Not knowing where to turn, I scoured the Internet for information, a glimmer of hope, or at least someone who had gone through what we were experiencing. The stories were few and far between, and the ones that I did find were awful.

Then my mom found Amelia Grace’s story. She called me and told me she had come across a blog written by the mother of a baby born with an encephalocele, and her encephalocele was filled with brain matter, but the baby survived!

As soon as I heard that, I jumped online and googled Amelia Grace and encephalocele, and that is when I found Aunt Becky’s blog. Anyone who follows AB knows how wonderfully witty and sarcastic she is, but her kindness and genuine care and concern is unparalleled.

I emailed her after we got the amnio results and she responded immediately. Her story brought my family and I the hope that we needed to get through the next several months. It was no coincidence that our MRI was scheduled on the day of Amelia’s first birthday.

I knew this was a good sign.

We met with the neurosurgeon a week later to discuss the results of the MRI, but the meeting did not go as I thought it would. I really thought that after the meeting we would have a clearer picture of the future. Instead, the neurosurgeon told us that he really could not give us statistics because so few people decide to go forward with a pregnancy where an encephalocele is detected. The possible outcomes were all over the place. There was a chance that the baby could be born with only minor developmental delays, or the baby could have severe neurological and developmental impairments, requiring assistance throughout his or her life, or the baby could be born with severe pulmonary issues, and would die soon after the birth.

At the end of the meeting, he told us to take some time to process everything and get back to him about what we wanted to do. What we wanted to do? I thought we had already made that decision. Now he was asking us again in the face of such a bleak outcome? Once again we returned to a cold, dark, and isolated place. My husband and I decided to take some time to come to our decision.

In my case, the baby made the decision for me. With each retelling of our story to various friends and relatives, the kicks in my belly grew stronger. From the very start, our child was a fighter.

Once we made the decision to go forward, we also made the decision to leave the darkness behind us. If we were going to do this, we had to have hope. We had to have faith. We had to believe. And we had to love each other. That was another blessing, the love of my husband. In a situation where some may grow apart, somehow I became closer to this man that I had known for over a decade. Putting his own fears and sadness aside, he protected my heart with every fiber of his being, and he filled our life with love and light.

The final blessing in this story was the prayers that we received from so many people. Our family prayed. Our friends prayed. Our family’s friends prayed, and their friends prayed. Even some of AB’s Pranksters prayed. It was amazing. With each prayer, I felt the baby inside of me grow stronger.

The rest of the pregnancy was rather uneventful.

After reviewing the MRI, the neurosurgeon believed that there was no brain matter in the sac, but there was no way he could be sure. Everything was wait-and-see. Still, our baby thrived. With each ultrasound, the baby got bigger and bigger, but amazingly, the sac remained relatively the same size.

I was scheduled for a c-section on June 14, but our baby had other plans.

On May 22, 2010, at 11:06am, Lily Grace Woods entered the world four weeks early. Because she was early, she needed a little help to regulate her breathing, but there were no pulmonary issues.

In fact, there were no discernable issues at all, aside from the golf-ball-sized sac on the back of her head. She remained in the NICU after her birth, and when she was a mere 11 days old, she had neurosurgery and the encephalocele was removed.

Three days later, Lily Grace Woods went home to her family, and to begin to say thank you to everyone who prayed for her.

Today Lily is thriving. So far there are no perceptible delays. She amazes us everyday. She exudes happiness, and she brings, joy, love and light to everyone she meets. I could write another 20 pages about what this experience has done to me, and some day I will.

But for now, a year after we began this weary journey, I just want to say thank you. Thank you to everyone who prayed for us. Thank you to everyone who has ever put aside their own concerns to acknowledge the concerns of another.

And thank you to my daughter, Lily, who is the strongest little person that I have ever known.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.

I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a  room, more like a  broom closet. She was sandwiched in between two misbehaving ("misbehaving" means that their alarms were constantly blaring) babies who I could hear misbehaving.

Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That's NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It''s always evoked a pleasant picture of a garden of freshly hatched babies.  A Baby Garden.

Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.

According to her room placement, though, she was the most ill.

Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.

My ass firmly planted now onto the chair (I'd had a traumatic vaginal birth mere hours before), I held Amelia's lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.

It was hard to believe only thirty or so minutes had passed since we'd heard "there's something sinister on your daughter's CT scan."

Our--Amelia's--nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi's sock and my iPhone - where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.

I handed off the box of kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.

We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.

I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone's head somewhere other than the NICU. It's probably good I didn't know where he was or I'd have stalked him down and dragged him to my daughter for a diagnosis.

The neonatologist - the one I'd met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something - he came over to Amelia's "room" and he told us that there was a "bright spot" on Amelia's CT Scan. He didn't mean diamonds.

I had no fucking clue what that meant and he didn't follow it up with much, although I did see his lips move, I couldn't understand his words.

Guess that's panic for you.

After the doctor left, the nurse came back in to ask if we'd wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.

She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.

And she is so, so blessed.

We sat there in the NICU; just the three of us. I couldn't tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.

Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.

Back in my room, I saw that I'd gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn't in a Good Place.

Alex and Ben came in a bit after I'd gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he'd colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a "sister" was, let alone what being "sick" meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.

Talk about being torn.

I cried as I said goodbye to my youngest son--my eldest just wanted to get home and I couldn't find fault with that--and he cried and yowled "Mooommmmyyy" as he was led away to the elevators that would dump him back into the outside world.

By myself for the first time, I tearfully found my way back to the Secret Place, The Land of  Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.

I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn't care what was wrong with her so long as she made it out alive. I begged God to take me instead. I'd had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I'd give my life to save her in a moment.

Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.

After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.

In the brief time I'd been gone we'd gotten a new nurse.

When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn't know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.

She looked pretty aghast that we'd been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.

That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn't feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.

The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up  to nurse every 2 hours (the NICU runs like clockwork. It's no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver's snores, and waited, trying to fall asleep.

Unsurprisingly to no one, I couldn't get anywhere close to sleep that night. This made the tally of nights without sleep 3.

I was about to lose it.

Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I'd sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.

I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.

Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don't remember what she did, but she didn't want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.

Fucking bitch.

She told me to "relax" and then left.

I tried to "relax" which was as useful as punching myself in the face with a hammer. It didn't work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.

My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.

I didn't end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.

It sounds, in retelling this, that they were all there to help, but it wasn't really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.

Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They'd turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.

Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she'd done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.

Then (dun, dun, DUN), the absolute worst person to show up did.

Lactation services.

Lactation Services showed up, because they say they'll come by every day you're in the hospital with a new baby, and they do. It's awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.

(also: why are people in the Lamaze videos always naked?)

But I didn't need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn't get the hint.

No.

She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.

I expected this to be enough for her, but no, she followed that up with, "Do you have any concerns about breastfeeding?" Wrong question, dipshit. Time, place, all that.

"You know what?" I snarled, "I'm MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?"

Again, she could have gracefully bid be farewell. But no. She kept on keeping on.

"Well, what about your concerns with BREASTFEEDING?" She asked, just not getting it.

I responded with, "Look, if she's dead, I'm not going to give a FUCK about colostrum, okay? Please!"

I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn't going to help an encephalocele.

Dave told her to get the fuck out of our room.

Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.

I awoke when The Daver bounded in and announced, "the neurosurgeon ordered an MRI! And he's really nice! And not concerned! He thinks it's an encephalocele! It's a piece of brain or something that's herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you'd met him. He was so, so nice."

And just like that, we went from critical to discharged in less than 36 hours.

This weekend was The March of Dimes March for Babies, (not to be confused with the March ON Babies, which would be a completely different kind of march) and I've been looking forward to it since last year. I would have marched then, but I was kind of a quivering mass of Jello and I could barely organize myself to walk to the bathroom, let alone walk for babies.

But I'm not really a "details person." I'm just sort of the person who organizes things broadly and let's other people worry about the other things. Like dates, or plane tickets, or whatever. I assume that I'll figure it out, or if I don't, whatever.

So I thought the walk was on Sunday, although I didn't specifically LOOK at the date and like circle it in big puffy hearts on the calendar, right? Then I made an appointment to get my eyes checked on Saturday and The Daver was all "ZOMG, THE WALK IS THAT DAY, YOU MORON!" and I was all, "Whoops!" sheepishly because that really is something I would do.

I canceled the appointment, got the kids off to my mom's house on Saturday morning, printed out the sponsor sheets and got in my walkin' gear. We showed up to the walk site and....

....

....

No one was there.

Yep.

Turns out I was motherfucking RIGHT all along. It was pretty hilarious to sit in the empty parking lot and laugh at The Daver, who was FURIOUS GEORGE (I should add that I was not furious when I thought that I was wrong).

We used the opportunity to sneakily eat some motherfucking breakfast without our crotch parasites and then ambled on home. BRILLIANTLY, I took it upon myself to do a bit of Bushwacking because the best thing to do when you are about to walk 5.5 miles with a foot injury is to do some really strenuous digging. Of course, I hurt myself. Of course it was with the pickax.

Really, no one is surprised.

I mean, it's just a giant knot on my leg and I knarfed up my foot again, but really, did I HAVE to get out there and attempt to dig out the bushes before the walk? CLEARLY I did. Anyway, the bushes, like my stupidity, are going nowhere. Those motherfucking roots are of The Devil. If I see the person who invented evergreen bushes, I will punch him in the testicle.

Sunday dawned beautifully, and while I may not have been able to move comfortably, I was beyond happy to be walking, although I was eying Amelia's stroller jealously.

The park where the March of Dimes walk was held was the very same park where we, in high school, used to hang out and party every night, so to be there in a very different fashion was completely discomfiting to me. But when we walked in and saw all of the March of Dimes families gearing up to walk, I'm going to admit to you that I got choked up.

Just knowing that we were there--that we'd all survived--it made it all that much more real to me. I don't sit around all day every day thinking about my daughter or about all of my nieces and nephews that have been born too soon, or stillborn, or those who have passed. They're always with me, but I couldn't possibly function if I thought about that all the time.

But standing there in the park, the ghost of who I was and who I am, now a March of Dimes Mom, beside each other, my daughter chirping away in her stroller, her scar very visible in the morning sun, it was as much a celebration of life as it was a mourning of what could have been and what once was.

I walked for all of the names on my Wall of Remembrance, all of my nieces and nephews on that wall; I walked for my friend Heather's daughter Maddie Spohr; I walked so that some day all babies will be born healthy.

And I walked proudly with you, my Amelia, who defied the odds. Born with a very serious neural tube defect, an encephalocele, that should have killed you, you now take life by the balls and you make it your bitch. There's nothing about you that doesn't make me proud to be your mother.

Because you will continue to help give a voice to those who cannot speak. You will give a face to babies who are sick or dying. You will help give hope to those who need it most. You will help make the world a better place.

I know this to be true, love, because you already have.

You let your light shine, baby girl. Clearly, you're showing us the way.