bewildered by grace

Hi Schnipps,

Tomorrow we head across the ferry to Children's Hospital one last time. I have my pink ferry slip in my wallet, an appointment for a consult with an expert, and test results faxed through. Wait, I should know better. I need to double check that the clinic faxed them. Okay, now we're all set. Wait, I should call in my ferry form, sometimes the system goes down. Okay, now we are all set. Promise. Do you know I know that number off by heart? 1-800-661-2668. I also know that you then press 2, 2, referring doctor number, then 2, then practitioner number, 1, date of appointment, 1, 1, 1 and then you get your confirmation number. I know all sorts of information like that. I know your care card number off by heart. I know the name of the best and only compounding pharmacy in Nanaimo, and that the head pharmacist there, Nick, knew that you liked tutti fruity flavoured medicine, with a little enzyme in there that was similar to pop rocks, it made your mouth tingle so you'd reflexively swallow as a baby. My mind used to be consumed with all these little bits of information that I'd need multiple times a week in order to keep you healthy. I know when your dermatologist does procedure days and appointment days. For example, you can't get an appointment on a Tuesday. Only Mondays and Wednesdays. If we did Monday, we could also see the ophthalmologist, but not the cardiologist, because those are procedure days for him. Or was it the other way around? You see? Something magical is happening. I'm beginning to forget. What was the pharmacists number? I used to know. Now I don't. Magic.

First Trip.

We had our last appointment with dear Dr Prendiville a couple of months ago. The head nurse Joanie was there and hugged us and remembered when I called five years ago in a panic from a campground in the US because you'd fainted for the first time, and I was afraid it was related. Joanie and I used to email, because their phones were so busy and it was easier for her to get my question, ask the doctor on her coffee break and e mail me back right away. She's an angel, Joanie. There's also Alice in surgical recovery who snuggled you when you were a baby, and later also cuddled with tiny Emma so I could focus on you. She gives you presents when you go in, and rubs my shoulder when I cry every single time, and doesn't make me feel stupid about it. 

Six years and two weeks ago.

Dr. Prendiville gave us a gift last time we were in. She ignored me. She set you up on the bed, and looked straight into your face and asked you in her adorable singing way, 
"Soooo Miss Bella. How do you feel about your laser surgeries?" 
"I hate them."
"I bet you do. Do you hate them as much as your birthmark?"
"Well, I used to hate my birthmark, but my mama taught me it wasn't a bad thing, it made me different and special. So now I'm okay with it. I hate the surgeries more. Way more."
"Well there you have it then. You seem like a smart little girl, and it's your body and if you don't want any more surgeries, then I'm not doing any more. If you get older one day and decide you'd like to try again, you can call me. How does that make you feel?"
"It makes me happy. I don't have to do any more ever?"
"Not if you don't want to. You're perfect. We are all done."
I may as well have not been there at all. I was taken aback, and then deeply relieved. 
I told her about the next surgery they have planned for you, the one to fix your hearing. She made a face like she'd tasted something awful, and finally spoke to me in the same way.
"How do you feel about that?"
"I feel tired. I don't know how much they can improve her hearing, and it's a much more invasive surgery than the lasers. I don't want them to cut into her skull. Plus the tests beforehand are a lot. CT scans, MRI's... And it seems like she's doing okay. We've adjusted, she's adjusting. But that makes me feel selfish. If they can make it better, don't I owe it to her to try that?"
"No. If she's happy and well, why isn't that enough? Why can't you be done?"

We love Dr. Prendiville.

Why can't we be done?

Bella, I remember holding you in my arms six years ago and thinking about two years of trips to Children's. That idea made be breathless. I remember thinking, "the medicine will work faster. We have to be done before then. I can't do two years of this. I can't." But then there was your heart, and your sight, and that your birthmark didn't fade the way it was "supposed to" and now your hearing. We have been traveling to Children's Hospital for six years. And because medically you're really unique, I'm starting to wonder if we are maybe stuck in this weird purgatory where you're not sick, but you're still a medical challenge. We could keep doing incremental improvements to your hearing, to your birthmark... or we could say it's enough. YOU are enough. 

Happy perfect little face.

I flash back to you being three and asking me if the surgery will make our faces "match" and how I sat on the steps of our house and my heart broke that you understood that your face looked different from mine, and you didn't like it. I keep flashing forward to you being sixteen one day and putting makeup on your birthmark and hating me because I didn't force you to have surgery now. Or being thirteen and self-conscious about asking people to repeat themselves because they were standing on your left side and you didn't hear them. I wonder if you'll glare at me one day and say, "you could have helped with this. Who cares what I thought when I was six?!" I guess the short answer is that I did. I do. Last Christmas you hit a turning point where you wouldn't let anyone look at the side of your face. You covered it with your hair and cried. You couldn't understand why if it wasn't a bad thing, we were doing a surgery every two months to make it go away. And I didn't have an answer for you. I can see how those would seem like two competing messages. So we took a break from surgery, and I concentrated on telling you that it was fine. And your friends didn't care or notice it. They even think it's pretty. 

Free.

Tomorrow we do one last trip, one last time, where a specialist looks at your unchanging hearing function tests and says, "well, we could try..." and I'm going to politely refuse the invasive hearing surgery. Because we are done. It's enough. It's okay that you ask us to repeat ourselves and we make sure that we sit on your other side. It's okay. I don't see your birthmark any more, and I used to not believe that would ever happen.

You have never had a life that didn't have an upcoming doctors appointment. You have never just been done. There's never been a time where I wasn't worried about the next thing, the next time, the next trip. This has always been a part of your life, Children's Hospital, tests over here, referrals and checks, and the phrase "that's really odd. That's not supposed to happen. But we could fix it. Come back in..." 

About to go in. Before the tears.

I'm done. I think you've been done for a while now. One day, if you're sixteen and reading this, here is why we stopped, why I didn't force you:

Because you are whole. You are well. You are enough. You're not sick, and so we're not going anymore.

I think we've all been trying to help you for when you're all grown up but not thinking enough about you now. Your birthmark isn't going away. They thought it would on its own, but it didn't, then they thought the surgeries would help, but they didn't. They thought your hearing would improve as your mark did, but again, that's not happening. So you're going to have a birthmark and impaired hearing for the rest of your life. I have been fighting with all my might to keep us from those words for your entire life, and I think this is where we hold up a white flag because this really isn't a terrible battle to lose. It doesn't matter. I used to think it mattered so much, and it doesn't matter to me anymore. 

It mattered because I so want to make life perfect for you. I thought that maybe that meant that we went as far as we could to fix everything we could. I think when it's paid for you just take it. It seems like a gift. "At least we are here where you can have all these appointments and surgeries and we never worry about the cost." But I wonder then if we've taken things as gifts that are just more things to worry about that we can't change. Or that we can change but at a cost to you that I'm no longer interested in paying. 

So I've called in our ferry form for the last time and now I'm going to forget the phone number. I'm going to free up that space in my head. I'm going to start paying for the ferry like a normal person (drat). I'm going to stop worrying about you and let you grow up the way you are, because you're perfect. You're enough. The world is going to tell you that you're not for so many reasons that don't make any sense. They'll want you to look a certain way, and act a certain way, and fit, and say things that make you uncomfortable, and to make yourself less and more all at once.  

Far more than I want you to have perfect hearing and a face with no red marks, I want you to know when to say, "enough. I am enough. I don't have to fit. I don't need to match."  

Love you much.

Oh, Schnipps. Six? What can I say about who you are right now? How can I put you into words so that one day when you're thirty with babies of your own you will be able to go back here, to see yourself through my eyes?

You are incredibly smart. We've done your first year of homeschooling and are just about to begin your second year. It's going exactly as I thought it would in your last letter, sometimes it's perfect, sometimes it's so difficult. You've skipped first grade already, which because we are homeschooling, is a bit of a technicality. You're still in the first grade community class at school - you go once a week and it starts soon. You loved it last year and you can't wait to go again.

Something that is new about you in the last year is that all of a sudden, you became brave. I don't know how this happened. My sweet cautious girl who was once afraid of playground equipment is swinging out on ropes over the lake. You showed me a video of you doing this with Daddy and I just had to see it for myself, so I made you both take me back to the spot you found and show it to me again. Daddy held you and pulled you back so far and then just let go, just like that. You flew out over the lake, your hair flying in the breeze and it took my breath away. A year ago you wouldn't have even considered doing something like this. You're teaching yourself to swim and Daddy is teaching you to climb mountains and you're so amazing, the way you move and run and sing and try. I love watching you grow up - it's the most beautiful thing in the world. Once from an airplane, I watched the sun set for about five hours - it feels like that. It goes on and on and if I stop to think about it too much the fleeting beauty of it hits me in the stomach and I forget to breathe for a second.

We learned a few weeks ago that technically, you're known as a "gifted child". I don't love the way that sounds because it makes it sound like other children don't have gifts or abilities that make them special, which is obviously untrue. What it does mean is that your brain works in a really unique way. A better way to say it is that you're an asynchronous learner. Your brain has developed much faster than your physical body or your emotions. You're able to understand and memorize things incredibly quickly. You have an incredibly high IQ. We had you tested at the beginning of this school year, and the psychologist was amazed at you. I was relieved - it means I'm not crazy. I do not have an incredibly high IQ and sometimes I struggle to really understand you. There is something about you that's just different. Not better or worse, just different. Can I tell you something? This is tricky for me. It's tricky because it does make you really difficult to parent sometimes. You're so logical, you understand so much, and you tend to argue a lot in an effort to understand something completely. Sometimes this makes me very tired. The other part that is tricky is that sometimes it's hard to be proud of you publicly or to explain to people what you are like without sounding like I'm bragging instead of just really proud. I have always cared too much what other people think, and I think sometimes when people hear how smart you are, they can act differently toward you. People (including me) can be really silly. You have a friend who is such an amazing artist, which is something you and I are not very good at. I just love seeing the art that he makes. I know of another kid who can karate chop a board in half. I know a two year old who colors perfectly. That's amazing to me. I love that kids are different and amazing in all sorts of ways. You happen to be remarkably intelligent. That's not bragging - it's part of who God made you to be and I want to be able to celebrate that in an honest way. It's obviously part of His amazing plan for your life, just like I think that art is a part of who God made your friend to be. All of those things are beautiful expressions of who He is, and I love seeing the parts of His personality played out in different people. It's why we're all needed, it shows me we all have a part to play. There is no way in the world, that even if I tried my hardest, I could be a neurosurgeon. You could. I can see it in you. I can see the incredibly meticulous way you do things, I can see you make connections and form concepts and then think in a really implicational way about those concepts and draw conclusions. You've just always been like that. I can't change it any more than I could change the fact that you're very short and tiny. I'm stunned by you on a continual basis.

I heard once that true humility is the ability to be knows for exactly who you are, no more AND no less. Making you seem like less is just as unjust as making yourself seem like more. We are trying to teach you that it's okay that "all the kids in the gymnastics class are better and faster than you" as well as that, "technically, you're kind of a genius." Both statements are true. It's who you are, and I love all of it. I love that you keep trying gymnastics, even though you struggle with it. I love seeing you be brave and persistent. I love watching you do a math problem or write a story, or build and invent something. You're amazing. All of you.

I pray somehow that I can raise you to be the kind of person who doesn't base her worth on the way we are compared to others. I think comparison is a fact of life, it's something we all do. It can be good. It shows us where we are, like a spot on a map. Somehow though, you need to know that if you become a neurosurgeon or a waitress, a ballerina or a construction worker, I want you to be happy and proud of who you ARE. Not what you can do. I pray that the former never gets lost in the latter. That you find your identity in your character instead of your ability. If somehow I can teach you that, then you're set. All the rest will just be details.

You are smart.
You are brave.
You are kind.
You are compassionate.
You are beautiful.
You are independent.
You are funny.
You are strong.
You are enough.
You are so deeply and wildly loved by Jesus.

You are also so incredibly loved by me. All of you. I love your wild hair and your huge questioning eyes. I love your fierce determination and your calculating logic. I love the way you dance and sing. I love that you are funny and silly and sweet. I love that you are a protective big sister, and a strong-willed daughter. I wouldn't change you for anything in the whole world - you are exactly as you were meant to be, and I'm really honored to be your Mama.

I love you much Isabella. So so much.
Mama