You Asked

Some have asked about this post. Please continue to pray, as we are. Stefan was laid off from his job on January 12th, and it was completely unexpected. Stefan is an incredibly hard worker and very good at what he did. It has been a difficult transition for us, me in particular, but that might be just because men don't pour it all out like women tend to do! So, you can modify your prayers a bit by asking the Lord to provide for us in ways we can't even imagine right now. He knows what we need, and it seems like there are so many things I think of adding to the list of possible "what ifs", that it's overwhelming. I have to leave it in His hands and at His feet, or else I might just go crazy, and in some respects, I already thought I was at crazy. I continue to go to work every day, and I do feel an increased amount of stress, among other feelings that seem very huge right now.

On another note, Scarlet's bronchoscopy at Beaumont's Pediatric Intensive Care Unit has been scheduled for February 5th. As much as I don't want her to go through this invasive procedure, I know an answer lies on the other side of that test. I claim that angels will surround her while she is undergoing her bronchoscopy, and when she awakes, she will physically be just fine, and we will better know how to help her. Please pray for her physician, Dr. Doshi, as well as the nurses and other medical staff that will be helping her that day. Also, Scarlet was pretty much traumatized by her stay in the hospital, and she just starts screaming and looking terrified when anyone "medical" comes in the room. I don't want her to go to sleep that day scared, so please pray for peace for all of us. I will keep you updated.

Memory Monday

This photo of a 3-month old Spencer with his great grandparents (my side) was taken in December of 2001. Thinking back, life was much simpler then, but not better. Not being able to live in the past, pictures help us, me especially, be thankful for the joys we have today. These are some sweet ones in the picture!

Consolation

So, here's someone that has felt worse than I have in the last 10 days or so. It's never fun to be a guest at a pity party, but this guy is allowed to do whatever he wants, in my book. Read on. I've quickly become addicted.

Asking

It's been a rough week. I thought that last month of 2008 was hard with all the health stuff, but 2009 has turned out to be quite a doozy. I don't mean the car broke down, the weather was too cold, the kids were kids, or somebody got sick. I mean worse. For now, please pray for us. That's about all I can manage to say at this point. I don't usually ask you to do that, unless Scarlet has been sick, but she's okay right now. Please pray for me and Stefan. We'll keep in touch.

And the answer is.....

bronchomalacia. For more about all the details of that, you can go back and read this previous post. We saw Dr. Doshi today, but in his office this time and not the hospital, thankfully. He said he is almost certain that she has bronchomalacia, and that it is more prominent on the left side in the left bronchioles and lung. He also believes that she is a "combo", meaning that she has virally induced asthma. I can deal with that part of it because most kids do not struggle with this type of asthma much after early childhood, and we know from experience because Spencer was the same way, but is now medication free and experiences no issues at all. The more difficult reality is the bronchomalacia. We know it will go away as she grows, but it's a congenital birth defect, so that's not easy to swallow. Dr. Doshi is still going to complete a bronchoscopy under sedation in the pediatric intensive care unit. Hopefully, this can be done sooner rather than later, but at the worst, the first week of February.

Doctors typically don't tell you something they don't really feel strongly about or that they believe to be true. You must understand that this doctor knows his junk; he's a pediatric lung specialist and he is incredibly confident and very personable, to boot. I do have total faith in him, and I am pleased that he wants to cover all the bases and complete the bronchoscopy just to make an accurate and final diagnosis. Also good news: he will probably take her off all medications except one, and she will no longer be on an inhaled daily steroid. It doesn't help the bronchomalacia in any way, and so that is on its way out the door. We do have to be careful about the sickies....family, friends, crowds, etc. She will not, as we know from recent experience, be able to kick the common cold or worse germs and bugs very easily like other kids because her airways inflame and collapse, and her lungs are unable to clear out the bad stuff. That leads to lung infections and it can get pretty vicious. It also means that she doesn't oxygenate well during those times, and that of course can be very dangerous. When she gets any kind of respiratory virus, she'll sound worse, do worse, and be sick longer than a kid who has normal lungs and airways. Basically, I have to become more of a watchdog than I already am, if you can believe that is possible. She's almost one now, and if we can just make it until she's two, things really settle down at that point. Until then, I'm high strung.

Without a doubt, you can believe that we continue to trust in the Creator, who made Scarlet just the way she is. We believe that He will protect her and keep her, and we just won't let go of that.

Oooohhh

That's what I say. I say, "Ooohhh," with whispered awe when I come across an author that makes reading resonate. I have found many such authors, and if you know me at all, you know I LOVE to read. I love to read so much that I will read anything if I am bored, and most of the time, I am not bored because I have a book in my purse, or the car, or the diaper bag, and usually more than one. My husband shakes his head at me, as if this weird disease will some day get the best of me, and I will admit, I have excluded him for the comfort of a written page on more than one occasion. Poor thing. There could be worse vices in life, so let's leave it at that!

I was recently lucky enough (Thanks, Stefan) to spend uninterrupted hours! in Barnes and Noble with money that was not my own (gift certificates). I can't think of a better position in which to be. At the Barnes and Noble closest to me, there is a used book section, and sometimes, yes, it is filled with the cast offs that will never make a best seller list. Books like 101 Uses for Baking Soda and How to Socialize with Your Pet. But some of the time, you hit paydirt, as I did last Saturday night. Seven books in the used section that seemed worth it, which meant I basically tripled the value of my gift cards. I happened to come across one by Kelly Corrigan, and it was a hardcover. I thought $12 was a little high for a used hard cover, but the colors and cover picture caught my eye, and in the cloudiest recesses of my brain's book storage, I remembered that maybe I had heard of this. I carefully placed it on the top of the pile in my arms that was threatening to topple over. Because of course I had more than seven books. The bookstore method involves spending about thirty minutes finding and collecting everything that you might possibly interested in reading, and because there are no carts or anything, you have to hold them in one arm so the other hand can grab them off the shelf. Then it's necessary to find a table in the cafe or a chair or a corner and sort them into groups. Magazines to read now, kids books to look for at the library or tell family for gifts, books to request at the library for yourself, and then the smallest pile: books that actually go home with you, worthy of buying or using coveted gift cards.

Well, I deemed The Middle Place was worthy of the last pile. But I thought I would check the regular shelf to see if there was a paperback that was not $12. Sure enough, the regular shelf held both the soft and hard cover versions of the book, but it was one of the books that was facing out so the front was visible, and not the spine. That's always a good sign, at least for the author. What it usually means for the reader is that there is no paperback or the paperback is one of the elites that is $15, and that's what I found. So I bought my used book and brought it home and then today, visited Kelly Corrigan's website, and although the subject matter might not be the most uplifting, she is one of the strongest and most captivating writers I have read in a long time, much like some of my favorites, Catherine Newman and Jim Griffioen. Here is a sample of why I cannot wait to read her book. So much so, that in some weird way, I put off the reading of the really good stuff so it lasts a little bit longer; it's the best dessert.

From kellycorrigan.com
Looking Back
[This one was published in last month's O Magazine and is reprinted here for the Young Survivors I met last week at the Gilda's Club event.]

It’s clear to you immediately that you can have anything you want when you have cancer.

Your doctor called at 1pm and since that moment, your husband has met your every need, even anticipating needs (proving that he had been capable of such all along).

Word spreads and your doorstep shows it -- a cheery bunch of Gerber daisies, a little tin of peanut butter cookies, a calla lily. The phone calls are endless. You think to yourself that your diagnosis is probably generating as much curiosity and awkwardness as winning the lottery would.

Everyone treats you like you are a saint, an elderly disabled saint.

Except two people who still want you to find their bunny -- not that one! -- and fill their sippy cups and read them a book. They never say please and they always interrupt and they lean into you even when you are so hot already. And their ignorant self-centeredness is proof that you are still managing to put your children first even when you are in the crisis of your life.

Claire comes towards you with her bulging diaper and her hair is stuck to her forehead with the musty sweat that builds up during her morning nap. She knocks over your tall pilsner glass of iced peppermint tea, the one that Edward made for you in a moment as romantic as the one in which he proposed. Claire doesn’t say she’s sorry, she just cries because her t-shirt is wet on the bottom part and she loves her Elmo and Rosita t-shirt. Georgia also cries, because the tea went onto her paper where she is scribbling. She is so close to three. Her party is in five days. You’ve been talking about it for months -- when you push her in the swing, when you put her to bed, when you cut up her apple.

“Guess what’s happening in two weeks from today?” you say.

Then, between calls to medical centers, long sessions on breastcancer.org, and emails to work colleagues, Edward says, “We’re not gonna do the party, right? It’s too much.” But you say “No! She has to have it!” because you are feeling dramatic and magnanimous and like you can’t possibly let cancer have it’s way with your daughter’s first real birthday party. He says, “She’ll never even remember it.”

“I will,” you say.

On Wednesday, you swing into the Mammography center to pick up your films to take them over to the national expert you will wait three hours to see, making lists and pretending to sleep and reading old People magazines about Jen and Brad and that Angelina Jolie. On the way home, even though you’ve just been told you will do chemo for 5 months and then probably have a mastectomy after that, even though it’s dinnertime, you pass Michael’s craft store and you tell Edward to pull in -- “real quick” -- so you can get some decorations and order the helium balloons and he looks at you like you’ve just cut your own hair with a kitchen knife.

But then you’re in there, at Michael's, and it’s so exciting to be in line with the other people whose great concerns are finding three matching green photo mats and some extra wide gross grain ribbon for their fall door wreath. You’re up and the tired cashier says, “How are you tonight?” and you say, “Good!” and it’s the biggest lie you ever told as well as the God’s honest truth and you don’t really know what you’re doing but someone’s gonna have a great birthday on Saturday and it’ll all be because of you and you aren’t irrelevant yet, even if you are defective and are messing everything up for your family.

You are perky coming out of the store, even holding the door for the woman behind you, who is having a bad day, you can tell. Edward is slumped over the steering wheel like he’s been shot from behind, which he kinda has. He sits up when he feels you coming towards the car. He is “fine, just tired.”

Your kids are asleep when you get home and Sophie, the babysitter who breaks out every time she has a pop quiz, looks at you tragically but you divert her by saying, “Look! Look at these great party hats -- they go with the plates -- see?” You sound like Mrs. Dalloway. Edward hands Sophie a wad of twenties and says, “Thanks Soph.”

You unpack your shopping bag from Michael’s and show Edward the candy decorations for the cake you haven’t made but will and he says “Good” and you can’t bear to ask him how he is again because it might come out this time for real and so you just turn on the stereo and as he heads to the answering machine, you say, “Let’s do that tomorrow” because the machine says 14 people called and every one of them wants to tell you that you are in their prayers and that God doesn’t give you anything you can’t handle and what doesn’t kill us makes us stronger but Edward is responsible and level-headed and says, “It could be about your bone scan.” You realize you forgot something in the car, maybe, so you say “OK, I gotta go get something in the trunk anyway” and when you come back he says, “The scan is on Friday. I’ll call Sophie.”

The party is scheduled for Saturday afternoon and when you send out the email about it -- yes, it’s happening, please no cancer talk -- you realize you will have to have a conversation with your children before all these people come over. You google talking to children about cancer and you start to worry that some kid will say “My grandma died of cancer” and then you realize your daughters don’t know what death is. Because why should they?

Then you find this line: “Cancer is like weeds in a garden.” That’s really good. You think you should send a thank you card to the person who came up with that phrase. See how important words are, you think.

The bone scan makes you cry. “Stay still please,” says the technician, who has an Irish accent and looks like a guy who loves his pub. It’s so big, the machine, it’s so Willy Wonka/Mike TV and you can tell it is extremely expensive and you know very little but still enough to know that if they find it in your bones, you’ll probably die before you turn 40. And that’s why you cry and that’s why the technician asks you again to “stay very still” but when he comes to your side to help you up off the table, he has tears in his eyes and you know that he does this every day so why would he cry?

Friday is a two-Ambien night. Sleep is deep and black and divine.

Saturday! The party. Georgia is at your feet in no time. “Mommy! I’m three! I’m three years old!”

“You are, do you feel any different?”

“No.”

“Are you sure?”

“No, I don’t feel anything. Everything feels exactly the same.” She looks concerned, like maybe if she can’t feel it, it didn’t happen.

“Well, even if you can’t feel it, it’s real,” you say, newly expert in the matter.

Edward comes in and lifts Georgia up and she is so happy and the party will be great.

Everyone will come with a bigger gift that they had planned -- at the last minute they will tape something extra on the top; a recorder, a pony tail holder, a My Pretty Pony. Claire will also get a pile of gifts. In an hour, Georgia will blow out her candles and there will be wrapping paper everywhere and the goodie bags that compliment the paper plates will be torn through and it’ll all be on film and towards the end, after about half the people have left and the afternoon is drifting towards five o clock, you will open a bottle of chardonnay and the remaining mothers will gather around and fill little polka dot paper cups and you will all stand in the sun and look at each other and your children and shake your heads and make that little sound you do when you don’t know what else to say, the little sound that says didn’t see this coming and you will lean into one of them and feel that tiny contraction in your throat that means you’re going to cry and you will decide to let it come, it’s really okay now, because Georgia is running in circles on the back deck with her new butterfly wings on and a hot pink helium balloon tied to each wrist and needs absolutely not one more thing from you.

For now.


posted by Kelly Corrigan

Is it...

too crazy to be afraid to hope? Not in the sense that "all hope is lost" or anything like that. But Scarlet has sounded so good in the last 10 days. I can hardly believe it. I have been waiting for the other shoe to drop, so to speak, but she has been sounding, well, normal. It has been the longest stretch of time since the end of August that she has not had some type of wheezing or noisy breathing. To top it all off, she is on NO medicine except one tiny little inhaled steroid, which she has been on for 2 months anyway. She goes back to daycare on Monday. Please keep that one right on the top of your prayer list (good naps = healthy, happy baby and a mama with peace of mind). She also goes to see the pediatric pulmonologist on Thursday, 1-8 @ 3:30. That would be a good time to pray for wisdom and clarity in a diagnosis and next steps forward to solving this mystery. In the last week or so when she has had a "weird" moment, and I have almost started freaking out (because at this point in the game, I have two levels...okay and NOT OKAY!!), my heart has, almost instantly, heard a quiet whisper of trust.

The (good) chaos that is our life begins again in full force on Monday, and I am gearing up for that journey, let me tell ya. If I sound more hopeful in this post, I guess I am, but cautiously so. I'm sure you have all experienced, in one way or another, the letdown of getting your hopes up for something that is good, only to have been lulled into a false sense that it's all gonna work out..this time. I don't want to experience the after effects of that, so let's just say I am moving through the days and obligations with my fingers crossed behind my back and holding my breath...just maybe not as much as before.

As far as Christmas goes, what can I say? I won't bore you with the details of what everyone gave and received (although, Santa was very generous). I had hoped differently for a first Christmas as a family of five. However, I guess that means we don't have to do too much to go way above and beyond expectations next year! Scarlet and I will wear our Christmas duds to church this Sunday since we missed the official coming out party and spent that Sunday at home with me willing her to eat and breathe in and out and then of course, there was the infamous ambulance ride to the hospital (let me repeat...awful and terrifying).

My only prayer for 2009 was for peace and good health. For you, too.