Happy Endings

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Taking in the beauty of the Christmas tree.

A moment ago, I reviewed the post I wrote near Christmas last year. At the time, I was just getting through a serious illness.  It was the first domino to fall in what turned out to be a series of unfortunate events for my health, resulting in the loss of lung function that I’m one year later, I’m still trying to regain. It was not the best ending to the year.

This year, I’m just coming out of my first infection of the season again, but what a difference. Last year the infection was serious and debilitating, and this year, things began clearing up nicely after just a few days of antibiotics. I’m still having issues sleeping (courtesy of the medications I was on), but I’m done with the course now, and things are starting to return to normal.

Today I headed to the clinic for a breathing test. I didn’t have an exam scheduled, but I asked my doctor if I could have a spirometry just to make sure my lung function was headed in the right direction. Sometimes after an illness, I think I’m doing better than I actually am. Any improvement feels better than the worst days of the infection, and I’ve been known to think I’m doing great when in fact my lung function is still quite low. The opposite has happened too. I also wanted to see if the new asthma medications were helping. The great news is that my FEV1 was 44% today.  That is the highest score I’ve gotten in 2015!  It is up six points from my last exam in November. My lung function is still lower than I’d like (I’m hoping to get back to my pre-2015 health calamity baseline near 50%).  But I’m feeling happy and encouraged, and optimistic about what the future holds. The challenges of this past year have served as a reminder both that I am finite and God is faithful. Part of me would like to go back and delete a few difficult events from the year. But then I remember that God promises to work all things together for good, even, or perhaps especially the hard things.  That reminder fills my heart with peace. This year has a happy ending, and I love happy endings.

Last year after my pre-holiday illness I had to start from square one on my exercise. I knew I wasn’t as weak as last year, but I was still nervous when I mounted the beast [treadmill] a few days ago. I surprised myself and was able to run a mile and a half in 18.5 minutes. Not bad! I haven’t been as active as usual these past weeks but with Lucas around, I certainly haven’t been stagnant. He comes up with imaginitive games to play every day, and they always, ALWAYS involve running and chasing and laughing hysterically. These activites are good for my lungs. Some of his most recent games he named the Stomach Bug, Sharp Pig, the Tickler, and the Kissy Monster. If Jaime is home, he is the aforementioned villian. If not, it’s me.  The good news is after a good long time of screaming, chasing, locking Daddy out of the house (only for him to resurface from another entrance), and jumping out of hiding spots, every game ends the same. The villian cries with loud, dramatic, tears and says he just wants to be friends. He says he’s sorry he scared us. We all become best of friends. Lucas likes a happy ending too.

At Christmastime I think about Jesus and how He came as a baby, to walk among us, to love, and to serve.  Even now He is among us, giving life, hope, peace, and joy. And then He died in order to provide us all with the opportunity for a happy ending. That is the best news of all!

Hail, the heaven born Prince of Peace!
Hail, the Son of Righteousness!
Light and life to all He brings,
Risen with healing in His wings.

Mild He lays His glory by,
Born that we no more may die,
Born to raise the lost on earth,
Born to give them second birth.
Hark! The herald angels sing,
Glory to the newborn King!

Merry Christmas and Happy New Year, Friends!

Click here to view our 2015 holiday card 🙂

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Who I Am

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It’s a sunny day here, but the brightness surrounding me cannot seem to penetrate my heart. My gloominess comes from the several nights of poor sleep that have accompanied my start of oral antibiotics and the abdominal and back pain that have been near-constant companions these past few days. Pain wears me out and getting less sleep than I need tends to shade my optimism.

Days of illness, even illnesses that are mild in the grand scheme of things, make my world close in. I haven’t left the house much in that last week. My normal routine has been disrupted by the presence of this infection. It’s hard not to focus on what’s not getting done and what’s not working correctly in my body.

Recently, I read a blog posted by the Cystic Fibrosis Foundation, written by a woman named Katharine Scrivener.  One thing Katharine said resonated with me.  She said, “The older I get, the harder it is not to become my disease…[i]t’s a daily struggle to live my life outside of my disease–to not let it seep into each moment of my day.”

I couldn’t agree more. At one time, CF seemed to be just a footnote in my life.  Now, more often than not, it seems to be the headline, especially on days like today. I know I am much more than my disease, but the struggles of CF have seeped into so many moments of my day. There are times when I just want to forget all of it–the medications, the breathing treatments, the physical therapy, the health-preserving exercise, the worries, the uncertainties, the limitations, the pain.  I want to cast it all aside and just live free.  I want to be “me” untethered.

There was a time in my life where I had to make a conscious effort to accept CF as part of who I was since my main struggles started after I became an adult. I have done that, but now I feel it has become too much of me.  That it is beginning to color too many aspects of my life. To quote Katharine, that it is “chipping away at who I am.” It occupies too much space in my mind.

This post is partly a challenge to myself–a challenge to keep cystic fibrosis in its place. It’s something I’m still learning how to do–how to keep up with the demands of living with this disease, how to weather the illnesses, how to accept the limitations and push past the disappointments without becoming the disease.  How to live outside of CF even while dealing with its implications.

Today I read Isaiah 43.  The first three verses are as follows:

But now, this is what the Lord says—
    he who created you, Jacob,
    he who formed you, Israel:
“Do not fear, for I have redeemed you;
    I have summoned you by name; you are mine.
When you pass through the waters,
    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.
For I am the Lord your God,
    the Holy One of Israel, your Savior.”

These verses spoke to me today about my identity. Who am I? I am God’s child. He has summoned me by name and I belong to Him. It reminds me that when I pass through the waters, the rivers, the fires of this life and this disease, God will be with me, and I, the real “me,” will not be swept away. When I shift my gaze away from my circumstances and onto God, CF goes back to its rightful place. This disease is only one of the particulars of my life. It has in many ways shaped me, but it is not my identity.

Who I am? I’m Betsy–God’s child, a wife, a mother, a daughter, a friend, and a teacher. I am a joyful, loving, hopeful woman. And my CF? It’s there, but it’s just a footnote.

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Conversations with Lucas

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Well…I’m sick. I caught a bug from my baby boy. Lucas came down with a virus a week ago, and it went straight to his chest.  He showed no other symptoms but a raspy cough for a few days. He never stopped playing, or eating, and didn’t slow his pace much. After a few days it was pretty much gone. Ah for the strength of that little boy.

This isn’t the first virus of the season for us–Lucas spent one afternoon on the couch this fall, flushed and not feeling well. He woke up all better the next morning and Jaime and I never got it. I was hoping it would be the same this time, but seeing the virus attack his lungs and realizing that’s my weakest point…I can’t say I’m surprised.

I’ve had mild viral symptoms for a few days but was staying ahead of them. Finally last night my cough took a turn and after seeing some telltale signs of infection, I contacted my doctor this morning. I’m so grateful for him–he checked his email on the weekend, called me right away to get a firm grasp on my symptoms and gauge their severity, and called in a prescription for me. I don’t feel great, but relatively speaking, this is pretty mild.  Hopefully it will stay that way.

This afternoon Jaime packed Lucas up and they headed off to Grandma’s. Jaime had plans for the afternoon and evening and wanted to make sure I wasn’t solo parenting when I should be resting. Lucas will be helping Grandma decorate their Christmas tree and they are both excited!

I admit, I felt sad when I saw him head out with his daddy. I know I’m overreacting, but I hate it when Lucas has to be sent away because I’m sick. He is in the best of hands, but it still hurts my heart a little.

To cheer myself up, I’ve decided to write down some of the funny exchanges Jaime and I have had with Lucas lately. Lucas is just over four years old and the things he says sometimes are so cute and funny (at least we think so)!  I love getting little glimpses into his mind. Without further ado, here are some of my favorite most recent conversations with Lucas:

L: Is it dark outside?

B: No, but it will probably be dark soon.

L: Probraby? Probraby?  Prob…what did you say?

B: Prob-ab-ly

L: Probrab… *Sigh.  Prob-ab-ly.  Probably.  Probably!!  Did I say it???

*

L: Mommy, pinches are my favorite bird.

B: Pinches? Do you mean finches?

L: No, pinches! You have to be careful because they’re sharp.

*

L: I just got a ‘rocious owie.

B: What does ‘rocious owie mean?

L: It means you got hurted on your toe. That’s what it means.

*

L: What are they doing?

J: The rabbit is looking at his dad’s newspaper.  You probably don’t even know what a newspaper is.

L: Nobody does!

*

B: I have to do my breathing treatment.  I’ll be right back.

L: But I’m allergic to playing by myself!

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L: Hey Mommy, I have new spelling name for Daddy!

B: Really, what is it?

L: It’s O-L-D.

*

L: Mommy, did you hear that?

B: No….

L: It was my tummy.  I’m hungry.  Is there a plan for that?

*

L: Mommy, I’m setting my mind.

B: ?? On things above?

L: Yeah! That’s what I do!

*

L: S-T-O-P.  That spells stop!

J: Wow, you’re right!  Can you spell bus?

L: B-U-X-P-L-Z-A….O-M-M-Y.

*

L: Who’s that?

B: That’s Adam and Eve.

L: They don’t have any clothes on. They’re naked.  But why are they naked, Mommy?

B: Ummm…because they weren’t embarrassed.

L: But I’m embarrassed!! Are you Mommy?

*

There you have it. I feel better already. I hope these conversations brought a little cheer to your day too :).

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Held

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There are some mornings when I wake up with a heavy heart. There is so much darkness and evil in our world. There are so many people with broken hearts, broken bodies, and broken dreams. There is so much violence–both in actions committed and in words spoken. I read about other CFers who are going through frightful, sometimes unexpected struggles and fear tugs at my heart. I feel an unnerving helplessness. There are things in my own life which feel undone and I worry I will never have the strength to see them through.

This morning as I was wrestling with these thoughts, a picture came to my mind. It was a moment caught by our photographer during a family photo session we had this fall.

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Held.

It was an ordinary moment…one that happens almost every day. My little boy needed the reassurance of my love and the comfort of my arms. The love I have for him as his mother cannot be expressed with mere words. I would do anything for him. The pain and hurts he experiences as well as the joys and triumphs surge through my heart as if they were my own.

I know that my Father in heaven loves me in this same way. My trials and triumphs are not unnoticed by him. He loves me even more completely than I can love my son. He is a God who sees and knows. He weeps at brokenness and violence and shattered dreams just as I do.

So on days like today, when I feel the weight of the world on my shoulders and tears sting the back of my eyes, I can only do what my child would do–run to the safety of His arms. There I find comfort, there I find peace, there I am fully loved and fully understood.

I am held.

Thankful

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This is one of my favorite times of year. Last weekend we had the first snow of the season, and it was so beautiful. It snowed all day–soft, plump flakes that landed gently on the still-warm ground.  I love how the first snow makes everything look so polished and peaceful.

I was inside preparing for our trip north for the holiday. The scene outside was so picturesque that I broke my own rule and started listening to Christmas music before Thanksgiving. I just couldn’t help myself. As I was working, I could hear Lucas’s delighted shrieks as he played outside with his daddy and enjoyed the snow. The pure joy and excitement of my boy made my heart feel light. Lucas kept knocking at the window of our back patio door to show me what they were doing. It was so sweet of him to want to include me. It didn’t take them long to build a great snowman and pepper the back yard with snow angels. Productivity went out the window and I found myself glued to the glass watching my boys enjoy the beautiful afternoon and laughing at their antics.

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The first snowman of the season!

I started thinking about all I have to be thankful for.  It has been a difficult year for me healthwise, but as always, the blessings have far outweighed the challenges. I’m so thankful for my husband who continues to be my number one supporter. We are both far from perfect yet our strengths offset each other’s weaknesses and we are really great together. I’m thankful for all the friends and family in my corner who help me navigate the stormy waters of cystic fibrosis. I’m thankful for my son who infuses my life with love and joy and meaning. I can no longer imagine life without his laughter. I’m thankful for great doctors who work hard to provide me with excellent care. I’m thankful for the strength that God gives me to continue living and thriving in spite of my challenges, and for the hope that fills my heart.

That particular afternoon, I was also feeling thankful for the lessons I’ve learned from cystic fibrosis. CF has given me eyes to view the world and my own life in a different way.  The major and minor illnesses I’ve weathered have given me perspective on what is (and isn’t) important and I’ve gained a sort of freedom. I am a “doer” by nature, but because I’ve been sidelined with health issues in the recent years, I’ve learned the value of appreciating and experiencing the blessings of today and taking my sometimes frantic productivity down a notch or two (or ten). I’ve been forced to slow down and that can be frustrating. But a slower pace has afforded me the opportunity to experience a calm and appreciate beauty that may have gone unnoticed otherwise, and to do so without feeling guilty.

Sometimes this beauty is physical, like those dancing, sunlit snowflakes. Sometimes it’s a restful enjoyment of the simple things in my life. I love the mornings where Lucas and I have no set plans and I can play with him and sit and read him stories. I no longer feel guilty if the dishes stack up or the laundry piles grow. Those things need to be attended to eventually, but I’m much more able to let it be later and enjoy the moment at hand. That snowy afternoon I realized how pleasant it was to feel relaxed and unpressured by the 1000 things that needed doing and instead be free to enjoy the scene that unfolded before me as my boys romped and played in the backyard.

Sometimes I look around my house and can’t believe my eyes.  There are messes and areas of disorganization that would have driven me crazy in my past life (the healthier years). They still drive me crazy sometimes. However, as time passes, I know I won’t remember the chaos or the clutter. But I will remember the quiet mornings and the snowy afternoons, the laughter of my son and husband, and the stories and snuggles. I am thankful for all the blessings in my life, and for the lessons I’ve learned, even at the hand of my disease, that have helped me to enjoy them.

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My two favorite blessings