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.
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.
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?"
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.
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.
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..."
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."
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. |
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. |
