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?

What a Difference a Year Makes

June 14, 2010

 Our little miracle has come a long way in a year, hasn't she?

June 10, 2011

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.

Sleepy Sleepy

Tomorrow we head back to CHOP for another sleep study. This one will tell us whether or not the hours of fighting with Charlotte to put the darn CPAP on every night are actually doing any good. Cross your fingers.

We also have an appointment with the NICU at CCH tomorrow, to track Charlotte developmentally. Crossing our fingers that she's testing as well as we think she is :)

And because she's much cuter than anything I have to say... here are some pictures:

Post nap, prior to getting her O2 back. She's so happy to have the CPAP off!

We call it her wrestling helmet. The CPAP head straps go on before she falls asleep, and then we add the mask once she's in a deep sleep.

Unless, of course, she falls asleep while you are holding her. Then you just have to keep holding her, because it might be another six months before she'll do that again.

We were told to put the CPAP on her during the day while awake so she wouldn't be frightened by it if she woke up with it on. Yeah. I don't know about that..

I could eat.her.up. Yummy.

- Posted using BlogPress from my iPhone

Vacation Pictures

All the Farr cousins. Believe me. This is the best shot we could manage.

Charlotte at the beach!

Siblings. Charlotte 14 months actual, Caleb 3.5 years

Charlotte and her cousin, Sophie. Sophie was SO good with Charlotte.

Have chupi, will travel. Not to pacify, mind you, rather, just to chew on.

The last week of April my siblings, parents, and paternal grandparents rented a house in the Outer Banks. It has been almost 5 years since all of my siblings have been able to attend a vacation together, so it was great. Even better, this is the first time all the cousins have been together. Last summer almost all of them were present for my sister's wedding, but Charlotte was still in the NICU, so she was absent.

Not to get all emotional or anything (that's a hint that I'm about to get all emotional), but seeing Charlotte together with all the other cousins was pretty amazing. Last year at this time, Charlotte was a pretty sick little girl. She was on the oscillator vent and we weren't really quite sure if she could get off of it. To see her sitting around, spending time with her cousins was a gift I just wasn't expecting. It was pretty amazing. At one point, Maeli remarked, "I think Charlotte really likes me! I love spending time with her." I may or may not have run to the bathroom and cried my eyes out. Cried out some big old tears of pure joy.

Maybe.

But I wouldn't tell you if I did.

Wrapping Things Up

These days we are working hard to start wrapping up Charlotte's medical care here in Philadelphia and preparing to descend on the poor, unsuspecting doctors in San Diego. I don't think they have any idea what they are about to deal with, and I'm not referring to Charlotte's medical needs. More like Charlotte's needy mother.

This week we see pulmonary and surgery. Next week is nutrition and GI. After that we have NICU follow up and a final appointment with her pediatrician for her 15 month check up and vaccines. We've already checked in with cardiology, ENT, and ophthalmology. We've set up a sleep study in San Diego and we've been assigned specialists and a primary care doctor.

Phew. I'm exhausted. Here's a picture of how darn cute she is to remind us that she's worth it all.





Yupp. Definitely worth it. That, and so much more.

- Posted using BlogPress from my iPhone

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.

Still Giddy

This picture has nothing to do with anything, but I know it will make my Bala happy.
And that has everything to do with everything :)

Just had to mention that I'm still so super excited about the news we got regarding Charlotte's eyes. I mean, seriously? So happy about it.

I'm in a "grab my hands, jump up and down, yell, 'Yayyy!!'" kinda mood.

Apparently this post has nothing to do with anything as well.

Eh, it happens.