Eighteen

This is a photo of me and my godson, Ryan. (He’s also my cousin.)

I was fifteen when he was born. When I received my transplant, he was seven years old.

I loved him insanely. I kept his photos in my locker, and my friend Amilia remembers that we used to call him “baby.” (I still love him insanely, don’t get me wrong. The insanity of love does’t wane.)

He’s 25 now. He works in Pittsburgh and has a degree in economics. He’s learning Japanese.

When I was on the list, when I thought I might not get to see him grow up, one of the things I wrote during that time was a letter to him—things I wanted him to know.

Fortunately he never received that letter, because I did get to see him grow up. I saw him lose teeth, make his first communion, heard his voice break and his body shoot up in height, and I went to his high school graduation party and I know him as an adult.

Patty is three years old. When I had my transplant, her mother (my cousin) wasn’t even married. Neither were my siblings.

My nieces—sweet Madeleine and Hailey—weren’t even possibilities at that point.

Melanie and Madeleine (aka, Maddie, Baby Bear, Sweetheart, Baby Maddie….)

Bryan and Hailey (aka, Hails, Hailey Bug, Baby Bear, Munchkin, Baby Girl…)

Cheering on her favorite baseball player with Mommy!

There are so many gifts. So many things I didn’t even think of when I was twenty-three.

So many things I would have missed.

For some reason, I didn’t miss them. I got to experience them.

“I am, among all men, most richly blessed.”

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Please consider becoming an organ donor, so that more families like mine can be blessed.

Also, my annual signed book sale is on! Get a signed copy of my book, a specially designed bookmark and prayer card, and free shipping, for $15! Email me with your address.

Life Lesson: Get In The Picture

The other day, I was going through my photo stash on my computer. I’m sure I’m not the only one who suddenly realizes, I have thousands of photos on my phone, I should do something about that, and then goes on a deleting/organizing spree.

As I as going through them I found a lot of older photos of me, obviously. Photos that, at the time, I had hated. Take the photo above. I didn’t like the way I looked in that photo when it was actually taken. This has been a pretty constant thing for me, in all the years post-transplant. I rarely like how I look in photos.

This is because, pre-transplant, I was tiny. My body was actually eating itself to stay alive. I was actively dying in some photos. But damn I looked good in photos. Girls told me that they wanted to be me. I was a size 0 (00 didn’t exist then). I had a skirt from Gap that was an XXXS. That’s right. A triple small.

I weighed around 103 lbs in college. Before transplant, I weighed 85 pounds. I was the size of a middle schooler.

But I looked good in photographs.

Now, going back, I can see that I didn’t. I didn’t have good color, for one. I’ve always been fair, and I still am, but this was sick fair. Consumptive fair, Lucy-being-drained-of-blood-by-Dracula fair.

This is me in college—when I was healthier, when I weighed about 103 pounds or so.

It’s not a great picture, but you get the idea.

But our culture—and really, it is our culture—is so screwed up that we think that a girl who wears a 00 and is dying is something to be emulated, that this is a “good look”, that this is a good thing.

It is not a good thing. I’m sure some people thought I was anorexic and that I did this on purpose. I didn’t.

CF, for girls, can make you look really “pretty”. You’re thin, for one, so that helps. People think you look good. But it hides the fact that ours bodies are cannibalizing ourselves to stay alive. A CF person needs about 5-6,000 calories a day. I wasn’t getting that. Even on TPN (total parietal nutrition—essentially tube feedings, via an IV that was hooked up while I slept), I wasn’t gaining weight.

But I didn’t mind having my picture taken.

Post-transplant, I mind. I mind a lot. There were maybe a few months where I felt OK about having my photo taken, but generally, over the past 16 years, I try to hide in photos. I don’t like seeing myself in photos.

I’m much healthier now, obviously. I’m not on the brink of death, and that’s not an exaggeration. I have muscles, my body doesn’t try to eat itself to give itself fuel. But there are lots of other issues—not the least is trying to re-learn how to eat after 23 years of “eat whatever you want”—and with diabetes, the fact that you can have to eat things like candy, or drink juice, just to keep your blood glucose happy, is a lot of balls to juggle.

I try not to complain about it. But it’s hard to see myself in photos.

But anyway, as I looked at the photo of Di and Frankie and I (above), I thought. I am glad I got in that picture. I am glad that I have this memory of that moment, of Frankie being that age and Di and I enjoying being together. I am glad that I am in this photo.

Over the weekend, Diane texted me and said that Bridget had found a photo of us, taken when I was on vacation, on her mom’s phone, and that it was “her favorite.”

And I realized, Bridget doesn’t care that I don’t like how I look. What she cares about is that I was in a photo with her. That we have this memory.

This doesn’t mean that I don’t want to be stronger, that I don’t want to be in better shape. (I finished a workout right before I wrote this.) I do.

But so many times we don’t want to be in the picture until we “look better.”

But the important thing is that we make the memories. Because that’s what matters. That we have these things to look at later, and that people have these when we’re not there.

Get in the picture, folks.

Seven Quick Takes--Sinuses & Stats

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Hey everyone! Welcome to fall. (AKA, the return of hockey season!)

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On the blog this past week, I wrote a piece that I think is pretty important, and if you haven’t read it, here it is: Lies, Damn Lies, and Statistics.

If you’ve been a reader here for any length of time, you know that I take the idea that “everyone has worth” seriously. This is because I have been frequently told that because my genetic code is messed up, my life is “too hard”.

Life is hard for everyone. Everyone will suffer. Everyone will die. I wrote a book about this, for Pete’s sake.

Yet some people think we can control suffering. We can control unhappiness.

We can’t.

So whenever the ugly head of eugenics rears its face, I try to play whack-a-mole with it and beat it down into the dust where it belongs. This piece is my latest Whack-A-Mole entry, but with the caveat of a really, really grim statistics at the beginning.

95% of children with CF are aborted in utero.

Anyway, read the piece to get all the sad facts and see exactly how I feel about this. :)

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Happy news, yes? :) How about some Patty?

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Also in HUGE news, I’m an auntie to a little girl! I have a niece coming! Her name is Madeleine Grace and she will arrive in the world in January and I am so excitedddd. (She is my sister and her husband’s little girl)

This is the first grandchild for my parents, so obviously we are all really excited.

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I’m having sinus surgery in December! My ENT had a CT of my sinuses taken and apparently there is lots of “mucus and junk” hanging out in my ethmoid sinuses (which are really cool, btw), so he’s going to go in, get the crap out, and then flush in lots of antibiotic stuff to keep things happy!

This is all part of CF. The mucus that’s really think and causes so many issues in my lungs also causes issues in other places, mostly the sinuses, the pancreas, and the reproductive tract (most men with CF are sterile—not sure if it’s all, but most are.) For me, my transplant took care of about 98% of my CF issues—but not my sinuses. Fortunately I have really good sinuses (I had a friend who needed sinus surgery every nine months) but it’s been about 10 years since I had a clean out and that means I’m overdue. So, December! Surgery! Yay!

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Dad and I are reading the Cormorant Strike series and we love them. I just started watching the TV series. Have you read these? I’m not super into mysteries/crime, but I love these. And I mean it helps that they’re ghost written—it’s actually JK Rowling who write them. :) So as a massive Harry fan, that helps. (I didn’t like her first adult novel, btw. So that’s why I was slow to pick these up. But these are good.)

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Knitting? I finished the Beatrice Shawl, and I’ve got four colors for a mystery KAL.

Beatrice shawl on the mats

The KAL is a 6 week thing, and I have five of the clues so far, so I joined late, but I’m really chomping at the bit to get started. I just needed some more size 4 needles, so once those arrive I can dive in!

I get knocked down, but I get up again!

“At the Millinery Shop”, Degas

If you weren’t a 90s kid/teen, you might not know this song:

(Yes, I just dated myself. And no, I’ve never seen the video, so I hope it’s not questionable. :-P)

(Also for some reason “Danny Boy” is involved. Never was sure why.)

Anyway, that’s a lot of what my life is like, and my dad said this to me yesterday.

“It’s like you start to exercise and have plans and then….you get sick! And you can’t do those things!”

“Welcome to my life,” I said.

And it’s true. It’s sort of frustrating, but it happens a lot. It happens in the hospital when I was 19 and had to learn how to…..sit up again. Or go to the bathroom unassisted. The body is durable, but it’s also surprisingly forgetful. “Huh? We used to ….sit up? All day? Nah.”

So that’s what’s going on right now. The Cipro caused my Achilles’ tendons, especially on my right foot, to get unhappy. Not so unhappy that something actually snapped or swelled, but enough that I went, “OK, we can’t use that foot.” I spent Sunday not putting weight on it, and most of yesterday was the same. It’s feeling OK today. I’m waiting on word from clinic to see if I should stop the Cipro early or if they want me to finish it and damn the torpedoes.

But….that means that my house was sort of a wreck. To put it kindly. Because I was sick most of the month of August, and then I got on the Cipro, which limited my movement, and even with limited movement, I still ended up with issues.

Fortunately my parents are a big help here and will help me dig out from under the avalanche of…stuff. But the other thing means that since I can’t stand for too long, I can’t really cook, which is detrimental both to health and to me, because I like to cook. I have lots of recipes I want to try out. But it’s hard because I can’t stand over something and stir or chop or slice. There is one recipe I have that I love and is really non labor intensive, so I’m making that tonight for dinner, but….I like to cook!

I am very thankful for my parents’ help (and my brother’s, when needed.). It can be hard to feel like a bump on a log and I hate having people clean up after me because I feel like the world’s biggest slacker. But…allowing people to help you in a part of growing in humility. So I’m growing, I guess.

The hope is that I’ve kicked this infection and I can resume regularly scheduled programming soon. I see my ENT next week and I’m going to see if we can do some antibiotic rinse in my sinuses to keep them happier long term, because I’ve been getting a lot of sinus things lately and I don’t really want that to continue (especially if my body can’t tolerate the antibiotics anymore….fingers crossed we can still do them.). So we will investigate some long-term solutions, if there are any.

All this to say that, yes, in life we have setbacks, sometimes huge setbacks, an it can seem like we’re not going to recover from them. But most of the time, we get knocked down and we get up again. :)

Billy Love

Getting to meet Billy on Sunday

The first post I wrote about Billy is, far and away, the most popular thing I’ve ever written.

I’m so glad that so many people got to know this incredible little boy and his fabulous parents. I’m so glad—and overwhelmed in a good way—by all the comments, prayers, and e-notes I’ve received saying they are praying for Billy and his family.

Sadly, Billy passed away in his father’s arms this morning (Tuesday, March 23).

He was loved, and so cared for, until the end.

These six days they had with him were an incredible gift from God. They were a miracle. I’m sure about that. Billy wasn’t expected to last an hour. Instead, he gave his parents almost a week to rejoice and delight in him—and for us to delight in him as well.

Tiffany got to nurse him. Bill changed his diapers. They slept with him on their chests, cooed at him, took videos, rocked him, and loved him. Billy grasped their fingers and looked into their eyes. His grandparents and aunts and uncles delighted in him. And so did all of us.

The day they left the hospital, the membrane that covered Billy’s encephelocele began to break down. The neonatologist said this was to be expected. At home, the brain tissue began to bleed. But through it all Billy and his family had the love and support of their family and the wonderful hospice nurses from The Resort. Billy was kept comfortable and was always in someone’s arms. He was unbelievably loved, and only knew love his entire life.

I was so blessed to be able to see him. I was so blessed to see my best friend hold her child, her first-born, to mother him, to see Bill hold his son against his chest and feed him. I stroked his little ear and marveled at his tiny fingers and even tinier nails. I delighted in him.

On Sunday, we heard the gospel that contains my life verse—Jesus healing the man born blind. My verses are taken from the beginning of the gospel’s ninth chapter:

As Jesus passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned. He was born blind so that God’s works might be revealed in him.”

I don’t know why I was born the way I was—but God does. I don’t know why Billy was born the way he was—but God does.

Maybe we were both born this way so that we can glorify God. I certainly hope so. That’s what gives me comfort, and that’s why I consider this my life verse.

Billy’s short life glorified God. His parents’ faith and love glorified God. The support, community, love, and prayers of all of you for this little family glorified God.

A few weeks ago, Bill and Tiffany’s church had a luncheon for them, to celebrate Billy and to provide support for Tiff and Bill. At the lunch, we made a quilt, where every guest was invited to write something to Tiff and Bill on a square. The quilt was draped over their couch when I went to visit. It is beautiful.

I had brought my Bible with me, and I spent time going through it, wondering what to write. Finally, I settled on one of my favorite verses. It’s the verses that begins the epilogue of my book.

“God himself will be with them;
he will wipe every tear from their eyes.
Death will be no more;
mourning and crying and pain will be no more,
for the first things have passed away.”

 And the one who was seated on the throne said, “See, I am making all things new.” 

—Revelation 21: 4-5

Today’s Mass reading from Isaiah talks about a time when infants will not die after a few days. When I heard that at the streamed Mass this morning, I almost dropped my coffee mug. Billy was dying, and here Isaiah spoke of a new world, where we would all live the lifespan that God appointed us. There would be no more crying, or death, or sadness. We would all live together to old age. Isn’t that what every parent wants for their child?

We all loved Billy. I thank you for all the love that you gave this family, that you continue to give this family. Please pray for them. At this time, the state of Ohio is essentially shut down—I don’t know what’s going to happen with the funeral. Thankfully, their families are local, so they have that support here in town and they can be together. Please continue to pray for them.

A Wedding In the Mountains: Melanie and Jason

(Photos by Mel’s photographer, not me! :) )

My sister got married last week, and I have a new brother!

via GIPHY

We’re excited about this. :)

The wedding was on June 13 at Our Lady of the Mountains Catholic Church.

This is a beautiful church! Pope St. John Paul II visited it during World Youth Day in Denver in 1993.

The church was stunning……so here are pictures (especially for family members who couldn’t come, but really, for everyone, because we all need beauty!)

St. Francis with Brother Elk. I saw quite a few people coming to pray here while we were there. It seems like a really popular devotional spot in Estes Park!

Isn’t she gorgeous?!

The stained glass windows around the nave showcased the sacraments. Thought this one was especially appropriate!

The altar and tabernacle—the tabernacle has the five loaves and two fishes on it.

View from the doors

It’s a really gorgeous church, with a statue of the Sacred Heart, a St. Michael window in the choir loft, and last but not least, a really amazing priest! He gave a beautiful homily on how marriage is about joy and sorrow, how marriage really begins the time you have your first fight (basically) or have a bad/sad moment, and how marriage is about being selfless, instead of selfish, because you’re one now. You’re not two. It was appropriate he spoke about joy, because that’s my sister’s middle name! I wish I had a copy of the homily, it was so inspiring.

The reception was intimate, held at a local steakhouse. But there was still cake (well, cupcake) smashing….

And a first dance….

I was a bridesmaid, so I was busy throughout the day and didn’t have time to take a ton of pictures, but that’s what I have. :)

We stayed at The Stanley Hotel (AKA, where Stephen King got the inspiration for The Shining) and my room had a great view:

So, that’s all I have right now, in terms of photos, but it was a lovely, intimate wedding in a gorgeous place, and I’m so happy for my sister and my new brother in law! :)

Thirteen

The annual transplant anniversary post tends to change, in form and shape, every year. This year, a lot has happened: 

Catholic 101 was published in November (buy it here--on sale until Friday!) 

My brother got married

(c) Erica Kay Photography , http://ericakayphotography.com/home

My sister got engaged

Melanie and Jason (her fiance) leaving Bryan and Sarah's wedding (c) Erica Kay Photography, http://ericakayphotography.com/home

I saw the Stanley Cup with my parents

I went back to Williamsburg and Duck 

I started writing and editing for Take Up & Read. 

I celebrated my grandma's 88th birthday with my family

I knit my first shawl. 

None of these things would've happened without my donor. 

It can be tempting to look at life in terms of productivity, what we do,  and I'm not trying to list my productivity. Look at what I've done! Rather, it's more like, these are things I never would've done, enjoyed, even conceived of, thirteen years ago. These are things that never would've happened. 

I would've missed my brother's wedding. 

I never would've met my new future brother-in-law and sister-in-law. 

13 birthdays, Christmases, holidays....all those things would've passed without me. 

In general, women post-transplant don't do as well as men. There isn't a lot of data, period, on women who have survived a transplant longer than 10 years. I'm in new territory here. 

I try not to think about that. 

Instead, these things I get to do are gifts, even when life is sort of sucky, because life is never totally perfect. I mean, things are overcome, yes--but just because something is overcome doesn't mean that everything is suddenly perfect. It doesn't work that way. 

Someone said, life is full of suffering, but it is also full of the overcoming of it. 

And that about sums it up. 

Thirteen years of overcoming is pretty good. 

With the cousins on my mom's side at my brother's wedding. This is not all of them, btw! 

To be an organ donor, go to donatelife.net/register