Letters to Charlotte: Progress

Dear Charlotte Amalie,

Last night, your nurse told me how you were trying so hard to make the "la-la-la" sound. You would go through the motions, desperately willing your body to function as your mind wished it would.

Yesterday, this was not possible.

This morning, out of the corner of my eye, I watched you effortlessly roll from your back to your front, push yourself up and practically fly into the crawling position.

Last week, this was not possible.

Right now, you are precariously perched on your feet, in a stance that cannot be comfortable. You are holding yourself up, leaning over Caleb's yellow dump truck, attempting to laugh at the laws of physics, as you recklessly lunge towards the wheels. Spinning them around and around, you throw your head back and laugh. Laugh at the world, baby girl, laugh as much as you can.

Last month, this was not possible.

Tonight, I will place you in your crib. In your own home, I will lay you down for a night of sleep and slumber. I will attach your monitors and push medicine through your feeding tubes. I will swaddle you as you smile and kick your legs. You're the only baby I know who is so ecstatic to be swaddled. I will sing you a song, and then walk into the kitchen to wash the dishes. When I finish, I will walk back to you, and find you sleeping. I will gently place your BiPAP over your face, and I will stand frozen for a moment, mesmerized by your image; hypnotized by your presence.


Last year, this was not possible.


Baby girl, if you are certain of nothing in this life, be certain of this:

Anything, anything at all, is possible. 

And no one can ever count you out.

All my love,
Mama

In Which I Write About Something I Only Know Tangentially

I find myself in an odd position sometimes. Charlotte straddles the line between "normal" (what does that mean anyway?) and "special needs". Clearly, she has a lot of special needs. But now that she's not on oxygen anymore, her needs are much less obvious to the random person we see on the street. It takes a medical professional to realize the tube running down her leg is a feeding tube. Usually people just smile and say, "Her backpack is so cute! Where can I get one?" {Her feeding pump and formula are kept in a backpack that she wears on her back so her tube doesn't pull out. And really? You definitely don't want this kinda backpack, lady.}

More often than not, people see Charlotte, and not her vast amount of special needs. We hear all the time, "She doesn't even look like a preemie!" {which makes me roll my eyes, but I know, I KNOW, people are trying to be nice, so whatever} or "You'd never know how hard she's had it." Which is great and all, but it kinda ignores the incredible path we've had to take. Like we can just forget about the horrors we've experienced because she doesn't LOOK like she has special needs now.

On the other hand, it's true: Charlotte doesn't look like she has special needs. I cannot imagine what it is like to be the mother of a child who so clearly has special needs, especially cognitive special needs. Nor can I imagine what it is like to hear people throw around terms like , "You're so retarded" {spread the word to end the word} or, "Man, I was totally autistic!" knowing that people are comparing the syndrome your own child, the love of your life, has to an action or person that is being ridiculed.

Recently an article ran in GQ magazine, saying Boston had "a kind of Style Down Syndrome, where a little extra ends up ruining everything." There has been a very public outcry (here and here and here and here and I could go on), but only private apologies. It breaks my heart that people think that's OK. That someone thought, "Gee, look how witty I am!" instead of thinking about what a child with Down Syndrome, or an adult with Down Syndrome really is.

Thankfully, not everyone in the public media feels this way. Nordstrom and Target recently ran these ads:

{source}

{source}

Look people, kids (and adults) with special needs are just that. People first and foremost. They are children who have grandparents, parents, brothers, sisters, teachers, therapists, caretakers, and friends who love and play with them. They are children who need more help along the way. They simply have special needs. They are not defined by those needs, they simply have them.

That girl you see in the grocery store isn't "retarded". She is a little girl who has "mental retardation" (a medical term that is often met with some controversy) or "intellectual disabilities" or "developmental delays." That boy on the playground isn't a "downs kid" he's a boy who has Down Syndrome. Those children own those titles. The titles don't own them.

And it's never appropriate to throw around terms like you own them when you clearly don't. So just don't do it. Just don't. Ever.

Oh My

Warning: Caleb may or may not be running around in his underwear in this video. That's how we roll around here.

I love this video. To me, it shows what Charlotte has become. Who she is. What she is capable of doing. It shows the love she has for everyone around her. It shows her hope; her faith. This video tells me that there will be hard days, but she will be just fine. When I watch it, I see a future of pillow fights and pranks pulled on siblings. I see a little girl who is determined to be happy, and a big brother who doesn't mind providing the entertainment along the way.

This video shows me that I have two beautiful, loving children. It shows me that no matter how rough the beginning may be, siblings can find a way to love each other.

It shows me that sometimes I worry a little too much.

It shows me just how blessed I am.

Adjustments

Dear Charlotte Amalie,

We're all making adjustments around here. That father of yours is adjusting to being a *real* doctor (crazy, I know!). Your brother is adjusting to a new home, and new people. You are adjusting to new doctors, new nurses, and no oxygen (woohoo!)

I'm adjusting to it all, as well.

I think the thing I'm adjusting to the most is seeing you as a little girl. You're not my baby anymore. Someone once told me I was lucky, in a sense, because you would be a baby for so much longer. (Umm, thanks? Did you think that one through before you said it? No? Oh, OK...). But even though you aren't doing "toddler" things, I'm watching you slowly shift out of being a baby and into toddler land.  Your face is getting thinner, your legs are getting longer. Your belly, while still impressively large, mind you, is becoming less of a belly and more of a torso.

You are also changing in non-physical ways. You are letting me rock you to sleep, something you haven't done since the early days in the NICU. You are laughing and playing with your brother. (You're also annoying him to death. #couldyoustopthat? #willyouknowhatthismeans?) You are exploring the world in new ways; trying to crawl, picking up toys, figuring out cause and effect. I watch you and wonder.

Do you know what a miracle you are? Do you know how much you have accomplished? Do you know that I live in awe of your strength, your resolve? Do you understand how I long for the future and fear it at the same time? How am I to teach you anything? How I am to guide you, when you have already guided so many; when you have been a source of faith and hope for those around you? For me?

I wonder if you are frustrated. If you know your potential and understand that you are delayed in reaching it. I wonder if you know that your body just doesn't work the way it should all the time. I wonder if you wish things were different.

I wonder if I wish things were different.

I wonder how it is even possible that things have changed so much. So much change. You've gone to a grocery store, to church, to the pool, to Target, to Sports class with Caleb. The strangers in the isles and on the street don't wonder about you. They don't know. It's a miracle they don't know. I'm adjusting to the idea that others don't know our story. Don't understand the fight we've had and the battle scars we carry.

But you, my little girl, you're adjusting to a world with carpeted floors and swimming pools. You are focused on getting.to.the.other.side.of.the.room.

And like all past adjustments, your adjustment is so much faster than mine. Your acceptance is whole. Peaceful. Complete.

I watch you and I realize that once again, I'm learning from you; I'm growing because of your strength. It's an adjustment, as a mother, I didn't expect to make.

But I'm adjusting. Thank you for making it happen.

Always Yours,
Momma

PS. Caleb would like to nickname you Charlie, but pronounced "Shar-ley". I'm gonna go with no on that, right?

Under the Weather

Charlotte's a bit sick today, and so I think we all need a "pick-me-up" post. 'Cause I'm oh-so-good at writing those, right?

Peter graduated from medical school this week!  Woohoo! Here's to a few more years of never seeing him :) All jokes aside, we're so proud of his accomplishment. Peter has worked so hard. He's done so much to get here. At a young age, Peter was diagnosed with Dyslexia. In some stroke of luck, Pete's teachers were amazing. They worked in a way that we would all hope teachers would work when our children have special needs. He was held back for half of 2nd grade, attending 1st grade for half the day, and 2nd grade for the rest of the day. During those early years, he would sit up at the teacher's desk while she read him his test and he would verbally take the test. He couldn't read.

In fifth grade, he was able to start reading picture books. He was in special ed classes until middle and high school when he started to mainstream back into "regular" classes. His senior year, when he was in all mainstream classes, he had an instructor who would meet with him once a week or so and go over all his classwork. This instructor would meet with his teachers throughout the week and find out what Pete needed to work on, what tests were coming up, what projects were due.

His school is does not have a large tax base. It's mostly rural, Amish countryside. They don't have large donors, or wealthy incomes to rely on. But they did the best with what they had. They never let him label himself, or allow him to slack off because he was in special ed. They (and his parents!) required him to fulfill his potential. Nothing more. Nothing less. They told him to keep going. To work hard. To find a way that he could learn, and then go with it.

As I watch Charlotte struggle to achieve milestones, or regress in areas that were once strengths, I think of her father. If this man, who hardly had a "normal" course, can walk across that stage, fulfilling his life long dream, then Charlotte can accomplish hers. No matter what holds her back, no matter what "others" may say, Charlotte will succeed.

She may not become a doctor. She may not run a marathon. But she will accomplish anything she wants to. It's not about what I want her to do. It's not about what others say she is capable of doing. If she can accomplish what she sets out to do, then she has succeeded.

And so have we.

Congratulations, Peter. We're so proud of you and all that you have accomplished as well.

Mother's Day

In my church, the "sermon" on Sunday is given by members of the congregation. A week or two (if you are lucky) prior to your "assignment" a member of the clergy asks you to speak and gives you a topic. Traditionally, you are asked to speak if you are new to the congregation, as an "introduction" talk, and you are typically asked to speak if you are leaving the congregation. Since we're heading out to California, we knew this was coming.

Peter managed to weasel his way out of giving a talk by moving sooner than the Bishopric expected, and I was left with the task of giving our farewell talk.

I was asked to speak on Mother's Day, with the topic of "The Virtue of Mothers". A few asked to have a copy of the text, so I figured I'd just put it here on the blog. And this way, my mom can read it, too.

So happy Mother's day y'all. Happy Mother's Day. 

Last year I spent Mother's Day with my daughter in the Neonatal Intensive Care Unit. She had gained not quite twice her body weight since birth, tipping the scales at a whopping 2 pounds, 1 ounce.

I was laying down that Sunday for the obligatory post-church nap, when we received the phone call. Charlotte was not doing well and was being placed back on the ventilator. As we rushed back to the NICU, we learned that she was requiring quite a lot of support. We spoke with the neonatologist and gravely agreed with their plan. We'd try one more course of heavy steroids to attempt to lower her ventilator settings. If that did not work, we would remove care. 

I learned a lesson that day, and many times since. It's a lesson I probably should have learned, from watching my mother, grandmothers, and mother-in-law, but one I never really quite grasped. I felt like the Grinch, in his moment of epiphany, only my lesson was not about Christmas, but rather, the role of mothers. 

Motherhood, I learned, is not the same idea as I had been told. It wasn't the same role that I had been taught in oh so many Young Women's or Relief Society lessons. Motherhood, I learned, was so much more.

Sure, there are parts of being a mother that involve driving kids to school, tucking them in at night, and counseling them about decisions. Sometimes motherhood does in fact involve getting pregnant and physically delivering a child.

But more often than not, motherhood has nothing to do with the physical acts we so often associate with being a mom.

The virtue of mothers is that it lies within us all. Whether we be biological mothers, step mothers, adoptive mothers, mother-to-be, mothers of full term kids, or special needs kids, or special-because-they-are-our kids. Whether as women we have children, are desperately waiting for children, or have buried our children. Whether we're not sure if we even want children or if we can't stop trying for "just one more." Whether we work outside the home, or in the home, or are employed by our own families. The virtue of mothers lies within us all.

In fact, just to be a little controversial, I'd even say it lies within our husbands, fathers, and brothers. Every Sunday while Charlotte was in the Chester County NICU, Peter and I would spend the afternoon with her. It was a special time, our time to spend together, just the three of us. Each Sunday, Peter would spend that time with Charlotte, barely the size of his hand, doing Kangaroo Care. During this time, Charlotte's vital signs always improved, and she was the most stable of any point throughout the week. Sitting there, watching my husband warm our tiny little girl on his chest, I was reminded that some of the most important moments in mothering come from those whom the world would not recognize as mothers. 

In my congregation growing up, there was a wonderful couple who did not have children of their own. Jeff was our home teacher, and became a second father to me. His wife, Bonnie, worked in the library at church. Despite never bearing a child of her own, Bonnie is one of the most poignant examples of the virtue of mothering. A young man in our ward struggled with social and academic situations. Often viewed as the troublemaker, this boy found it difficult to related to others. Yet every week, you could find him sitting in the library with Bonnie, as she spun her own wool, telling her about the snakes he saw, or the stones he collected throughout the week. Bonnie did not try to befriend him, she simply befriended him. She did not act interested, she was interested. She may not have tucked that boy in at night, but by the genuine smile on the face of a young man who was often forlorn, everyone knew- Bonnie had the virtue of a mother.

My own experience in mothering has not been the one I imagined as a child. Despite our circumstances, or maybe because of them, I've come to believe that few experiences with mothering are as we imagined. Few are the mothers who fit the idolized fantasy: marry the prince, have a baby (or four), enjoy the task of raising the perfect children, and step back to watch them continue the cycle.

For so many of us, true mothering occurs when that fantasy is shattered. We don't get married, or we can't bear children, or our children are sick, or die, or grow up only to go astray. Maybe we find ourselves divorced or widowed, with children still to raise. Maybe we find ourselves grandparents, raising another generation long after we though we would be done. Maybe our husbands lose their job, or we have chosen to be the breadwinner. Maybe in the quiet moments of honesty we admit that we're exhausted, overlooked and worn out.

And yet, in those moments, when our lives are nowhere near the picture painted in Sunday School lessons or Family blogs, we pick ourselves up. Many times, very slowly, many times after great delay. But we pick ourselves up none the less and continue the work. 

It is a work very different from the one we may have imagined. And yet, the blessings of that work are just as unimaginable as the work itself. Watching Charlotte this morning, nine times the size she was a year ago-- an incredible eighteen times the size she was at birth-- I am struck by the power and magnitude of mothering. Today, my children test me in ways I had not foreseen, and I am blessed by that same measure.

This is not to say that mothering is all difficulties or quick adaptations. Part of the virtue of mothering is the ability to savor the moments. Like when Caleb points to a man with a pony-tail and very clearly asks, "Why are you a lady?" Or in the more uplifting moments, when we sit down to dinner and he quietly exclaims, "Mommy, I love spending time with you."

The virtue of mothering comes as we learn to embrace what we have, the situations we have come to live in and we simply make the most of it. That virtue fills our lives as we learn to stop comparing our inside to everyone else's outside.

May you all have the most Happy of Mother's Days.

Employment

Dear Charlotte,

Today is just one of those days. Maybe its because Mother's Day is around the corner, maybe it's because Daddy is out of town, or because we've had to experience the loss of a grandparent. Or maybe it's just because its raining today. Who knows. These days come and go without a mention of return, without a warning of arrival.

We're so proud of you little girl. We're so amazed by how well you are doing. We're so blessed to have the smiling, interactive baby that we have. Because we know how bad it could have been. We know too many who have faced headstones and caskets, too many who have never had their children look into their eyes. We'll never, ever understand how bad it could have been-- no one can; no one who has not actually laid their child to rest can ever understand. But we know of it. We've lived around it and in it and we've walked through it.

Despite our knowledge, on days like today, I feel marginalized. As though the whole of society continues about their days, supporting causes like "Breastfeeding in Public" and "Home Births for All" and I want to scream. I want to scream, not because I am angry at their causes. Not because I do not believe in their vision.

Rather, I want to scream because I just want your situation be noticed. I want someone to understand. I want the world to know that not everyone gets a "choice" in their birthing plan, nor do they care. Those people are more worried about the ventilator settings and the results of blood tests. They are more concerned about MRI results and ultrasound findings. Those people just want their baby to live, forget how they entered the world.

I want your journey to be recognized by those who have not had to take this path. I want to be understood by people who have not spent months upon months in the NICU. I want to feel as though others are concerned, others are devoted to your cause, not because they too have been touched by this plight, but because it is something that has been normalized, something that has been accepted, confronted and recognized. I want to not have to educate so many on the effects of prematurity. I want to be able to explain that my daughter was born 16 weeks early and have someone understand just a little about what that means. Just as a cancer patient does not have to explain how difficult chemo is, I want a basis of understanding.

I know that understanding only comes through education. I know that I have a job to do. I know that as a parent of a premature child, the only way prematurity will ever be understood is if I help to educate those I interact with on a daily basis. But on days like today, I just want to curl up in bed and cry. I didn't ask for this job, and I really don't want it.

And then I look at you, and my feelings of pity and frustration feel trite and ridiculous.

I wanted you. I want you.

And I have you.

If I have to take this job to get you, I'll do it a million times over.

Consider my position full time.

Your Faithful Employee-
Mama

Reminded

I am completely and acutely aware how incredibly lucky we are to have Miss Charlotte around. I am reminded of our luck each and every day.

I see it each time I look into her eyes and see her pupils dilate differently. I'm reminded each time I change her clothes and touch the scars that cover her body. I'm reminded by the fact that CHOP has a special ringer on my cell phone so that I can make sure I don't ignore a doctor's phone call. I'm reminded by the massive oxygen tanks that are delivered weekly. I'm reminded by the therapists and nurses who spend time in our home each and every day. I'm reminded by the friends Caleb can't have over. I'm reminded by the Purell dispensers on the wall.

I'm reminded by the size of the diapers she first wore. I carry one in my purse to remind me. To remind me of how far she has come, how much she has beaten. So on those days that I wonder how we will get through one more phone call, one more appointment, one more set back, I reach into my purse and pull it out and think about the days when we had to cut them in half because they were too large. I think about the day we took a picture of one next to a Bic pen. I remember how I was trying to find something--anything--to distract me. The doctors had just told us that Charlotte was experiencing heart failure and there weren't many options for us. I sat there that day wondering if she would live long enough to wear the next size diaper. {She did. And the next larger size. And the next larger size. And the next three larger sizes after that.}

 

So yes, I live with reminders. Reminders of how close we came. I've watched friends bury their children and while I will never, ever, ever claim to understand or even imagine their loss, I am acutely and vividly aware that we have escaped it.

And despite that awareness, despite all the reminders of how blessed we truly are, this month has been hard.

Last year at this time, I was struggling to maintain a pregnancy. We had no idea what was about to happen. I had a PICC line placed shortly after Christmas 2009 and was taking many, many doses of anti-nausea medications each day, as well as two liters of fluids, vitamins and nutrients while I slept.

I feel like the past year has been an effort to stay afloat, to just make it one more day. Most days, we do really well. We pull ourselves together and we accomplish what we need to accomplish. And we do it without all that much effort. {Yet another way we've been blessed.} But other days, I feel like I'm right back there in the first few days of Charlotte's life when we had to decide how far we would push this. At what point do we stop trying to save her life, and instead make her comfortable? At what point do we stop intervening?

As Charlotte Amalie's birthday approaches, I wonder that about myself sometimes, too. How long do I keep trying to work out the pain and anguish and guilt and yadda yadda yadda surrounding it all? When do I say, "Heck.with.it. Make me comfortable."

Because, believe you me, I have those "make me comfortable" days. I wallow. I just want to be comfortable. I wonder how we'll ever get past the medicine and finally see the daughter. 

And then, on those nights that I need it the most, she falls asleep in my arms. Suddenly, instead of tending to a patient, I place my baby in her crib, and I kiss my girl goodnight.

In yet another way, perhaps in the best possible way, I am reminded.

Reminded of her.

When It Hits You

I made a decision a while back, maybe in May or so, that I was going to stop wallowing. That I would take Charlotte's diagnosis and roll with it. That no matter what we were told, we would be realistic and make plans to work through her challenges.

For the most part, I feel like we've done it. Of course, we have our days, but really, truly, we are comfortable with the "problems" Charlotte faces. We know that there will be lots and lots and lots of therapy in our future. We also know that no matter what, Charlotte will succeed. It might not be our definition or your definition of success, but it will be her definition of success. And that's what matters.

However, I'm not perfect. There are things that seem to get to me. And in an effort to provide support to any other preemie moms or dads out there, who may or may not read this in the future, I feel like it's our responsibility to document those "things". Because, yeah, we have pity parties some days. Because despite how well Charlotte is doing, sometimes things get to us.

And I'm here to say, that's OK. It's alright to feel defeated at times. It's OK to wonder how everything will work out. It's fine to run to your car and cry your eyes out when you see a child hit a milestone your kid should have hit months ago.

Maybe it's the pregnant mom that gets to you. Or the self-righteous mom who tells you that feeding your child formula is akin to giving them poison without knowing how hard you tried to breastfeed. And you might snap. You might spend hours beating yourself up. And it might take an hour or a day or a week or a month to pull yourself together again. But find a way to do it.

Build a swing set. Write a blog. Join a support group. Start running, or painting, or knitting or prank calling people. Actually, scratch that. Stay away from knitting. Those needles can be dangerous.

Basically, take care of yourself. You have a baby who really, really, really needs you. Sometimes that pressure is just too much. So call one of the nurses from the NICU and beg her to come over and watch your kid while you shower. Or go to the doctor and ask for some medicine or go to the grocery store or finally do some laundry. Do whatever it takes to take care of you.

'Cause you're important. Really.

The Luck and/or Guilt

The night Charlotte hit her 24 week viability marker, a doctor from the NICU came to speak with me in the hospital.

She explained the risks. 30% of babies born at Charlotte's gestation survive. 70% do not.

The week after Charlotte was born we had a meeting with another doctor from the NICU. He explained the risks. 90% of babies born, who do survive, at Charlotte's gestation have a morbidity.

Those were the statistics, but not the reality.

By all means Charlotte has not only survived, she has thrived.

Sure, she has a g-tube, is on oxygen and has visual impairment (the level of which is unknown). Yeah, she's developmentally delayed.

But there's an equally long list of things that didn't happen. Things that SHOULD have happened. Things like death, brain bleeds, shunts, trachs, and NEC. Charlotte has a general sense of her surroundings. She can move her arms and her legs. She has made progress in every area.

We have every reason to believe that even if Charlotte develops Cerebral Palsy, she will have a mild form. We can, with caution, say that Charlotte both hears and sees well enough to lead an ordinary life. {Everything we say is with caution... there seem to be NICU gods who laugh at our successes :)}

We feel incredibly lucky. Scratch that. We feel blessed.

We also feel guilty.

We escaped things that we should not have escaped. Statistically, we should have buried our daughter. That's the reality of Charlotte. She should not have survived. But she did. And every time I hear someone's baby lost their NICU battle, I feel guilty that Charlotte did.

Not that I would trade away our success, well, for anything. But I feel guilty that we have been given so much. when others have lost so much. I wonder, why us? Why is that wonderful, loving, caring family going through so much? It's not even a comparison between babies who lived and babies who didn't. I feel intense guilt when I meet a preemie who is blind and deaf. It eats away at me when I see a child with a trach. I could go on, but I won't.

I know there is no rhyme or reason. Charlotte did not come early because of anything I did. She did not live because she's a fighter-- believe me, I've seen more "fighter" in babies who have passed away than in any child who has ever lived. Charlotte lives because she does. And that's what it comes down to. She has a purpose here and she has been given the skills she needs to complete it. Other children have different purposes. And they need different skills. We are given what we need.

And that's the reality of parenting a preemie. You are living in a land of limbo, somewhere between being incredibly angry at the hand you have been dealt, and feeling incredibly guilty for all that you have survived, all the while being so grateful you've even been given the chance to try.

And so, we remember that that is the moral of parenting in general. Whether we are parents of a preemie, a full term child, a child with disabilities or a child who has passed away, we simply try. Sometimes we are overwhelmed with guilt. Other times we feel incredibly blessed to have such a special individual as a part of our lives.

But we try. We don't always do it properly. But we try.

The Whole New World

The past few posts have been a bit of a downer, so here's your dose of smiles.

Being a parent of a preemie opens a world to you. A world you had no idea existed. Sure, you read about things like viability and premature labor when you (or your wife, or your friend) were pregnant, but they didn't mean anything to you.

It's like how you can never understand how much you'll love your own child until you see them there, dirty and sticky, covered in a lollipop, reaching up for you, saying, "Mommy, I wanna snuggle." Anyone but a parent would run the other direction (alright, even as a parent, I've been guilty of doing JUST that... but I digress). But as a parent, the dirt, the snot, the poop, the cries-- they don't get in the way of seeing this little human as something miraculous. And you just cannot understand until you are a parent yourself.

So it is in the preemie world.

You just cannot understand how much these parents devote their lives to their children. Being only a few months into this world, I feel very much like an outsider. Like a new kid at school, I'm not sure where to sit at lunchtime. But not in a "they don't like me" kinda way. More in a "I wish I could be as cool as my older sister" kinda way. I am, by all means, a novice. And I wish I could explain the power that these parents bring to the table.

Have a question regarding an IEP? I can give you the names of 5 parents, 3 lawyers and 3 school board officials who will go to bat for you.

Have an inkling that something might not be right with your kid? You'll get an answer of 15 different possibilities with 15 detailed experiences of kids with the same symptoms.

Need information on a medication? A medical device? A nursing agency? Wondering how to confront your insurance company? Not sure what to expect at an appointment with an Ophthalmologist? Or an ENT? Or what will happen during your child's surgery? No worries. I have people to help with that, too.

These people are incredible.

The most incredible part of this New World is that the civilians of Preemie World are living right under your nose. They go to your grocery story, they shop at your mall, they work with you, their kids go to school with your kids... they are everywhere.

Before Charlotte, I really, honestly thought that people went to the hospital at 40 weeks pregnant and came home three days later with a child. When I was in labor with Caleb, Peter and I walked through the parking garage on our way to the hospital. I looked at him and said, "When I walk back here, we'll be carrying a baby!"

I was totally ignorant of the world of the NICU. I hadn't thought that some people make that walk no longer pregnant, but without a child. I didn't realize that people walked back to their car and called a funeral home. I never though that we might not have need of the nursery at home. In that sense, we are incredibly lucky (yet another post, for tomorrow). Charlotte has come home. She uses her nursery. We know her. And no matter what happens to her tomorrow, or the day after that, we know her. We will always know her.

As much as this journey has pained us, I am so grateful for the world we now know exists. I am a better person because of the people I have met through all of this. And when I don't live up to the standards of this Whole New World, I know there are people surrounding me who will assist in whatever way I need.

The Comparison

It's inevitable. Every parent does it. Especially those parents who say that they don't.

As parents, we compare our children to others. We track their progress by seeing what other children are doing. We smile when our children are ahead. We worry when our children are behind. We calculate how long we have to make milestones. We don't necessarily do it to be competitive (but we all know a parent who does...) we do it to keep track, to keep on top of the next goal, the next big deal.

For preemies, the comparison game is always lose-lose. Compared to children her age, Charlotte is grossly delayed. Compared to children her adjusted age, Charlotte is generally delayed. Compared to other preemies, Charlotte is above average in some cases, below average in others. But even if she is "better" at something than another preemie, how can you be happy about it? For one thing, it doesn't necessarily mean your child is doing well, and for another, you are trying to one up a micropreemie... how pathetic is that?! (Not to mention the guilt it induces... but that's a whole 'nother post) It's easier to avoid the comparison game. But it's not always possible. A friend will have a full term baby. So will a brother or a sister or a cousin. There is always going to be a reminder of where your baby *should* be.

And it hurts. Sometimes, you are prepared for it. Sometimes you aren't. And you never really know when it will hit you. You'll see a baby breastfeeding, or a toddler walking up the stairs and you'll realize my baby will never eat normally, or my second grader still can't walk up the stairs correctly. People will make comments like, "Next year at this time, when your baby is running around everywhere," and you have to choke back the tears.

Charlotte won't be running around anywhere next year. She's eight months old, and she doesn't roll over. But that's OK. I'm fine with where Charlotte is.

It's where she isn't that hurts.

It's not a pity party. As parents of micropreemies, we are more proud of our children's accomplishments than most. We yearn for the day they finally "get it." Today, Charlotte looked at her hand and her therapist and I did a happy dance. Seriously. We danced. I told everyone. "Charlotte looked at her hand! She's starting to recognize her own body!" I'm as proud of her as I would be if she was accepted to Harvard.

But we mourn the loss of "normal." We wish these accomplishments could go unnoticed. Because we want the most for our children. So we mourn the things our children will never know. And we worry.

We worry that someday, they will compare as well.

In Regards to Miracles

The last few months have filled our lives with miracles. On a daily basis, we are reminded of the constant need we have. The need to ask for more, to expect one more blessing, to beg for one more day that surpasses expectations.

We also experience the undying, overwhelming, constant emotion of gratitude. Grateful for one more day. For one more hour, one more test result, one more afternoon of holding our baby-- grateful for the chance to touch her skin and not tear it open, grateful for the periods of apnea, because it means she's breathing on her own every other moment. Grateful for the high heart rate because it means her heart is beating. It's working. Her heart; it works.

Grateful she's alive.

Ever so grateful she's alive.

And so as we struggle with the juxtaposition of our two realities-- the yearning for miracles and the all encompassing feeling of gratitude-- we realize that the greatest miracle we have is this conundrum. The very fact that we struggle to balance the need to ask for "more, more, more" and the emotional high of having so much, it means we have a child here. A child that's trying so hard to be here. A child that's struggling each day a little less than the day before.

And so as we talk of miracles, we recognize that we've already received the greatest miracle possible. A child. A child who doesn't need to ever see, ever walk, ever talk, ever swallow to be a miracle.

Her very existence is the miracle. The one we will be incredibly grateful for, for the rest of our lives. We can hope and pray and be grateful for anything else that comes along, any other ability that she may possess, but those "talents" are not her shining stars. Those abilities are not manifestations of a Higher Power.

She is the manifestation.

She always will be.

And we're ever so grateful.