Looking Up and Letting Go

Standard

I’m happy to report that after some very challenging weeks (months, really), things are finally looking up!  I went to the doctor a week ago, fully expecting my breathing test score to be down even further. Even though I had been on IV antibiotics for more than two weeks, I was feeling awful, in fact worse than before I started the treatments. Doing the breathing test left me completely dizzy and exhausted and my lungs sounded terrible–raspy, congested and tight. So imagine my surprise when my FEV1 came back at 40, up 8 points from my previous 32!  I could scarcely believe it, but was thrilled! I felt a shred of hope after what has been a very scary several weeks.

My doctor was pleased with the gain.  He told me that I was one of a handful CF patients in their clinic who is experiencing the same type of exacerbation. He and his colleagues have concluded that the root problem is actually a virus. It is causing this inflammation which has been locking up congestion deep in the lungs.  The inability to clear the congestion and the resulting build up is what is causing the drop in lung function. This explains why the antibiotics, although helping, didn’t make a huge difference right away. They are serving to keep the colonized bacteria at bay and preventing a secondary infection, but the root problem is still viral. It was so good to hear that I wasn’t the only one with this issue. It’s not as though I’m happy others are struggling, but it is comforting to know there is a reason for these symptoms that I’ve been experiencing, and that’s it’s not just my body and my disease going haywire.

I am making gains now, although I still have a way to go to hit “normal.”  I suspect I won’t get there until I’m off the antibiotics and the steroids and can bank some deep, uninterrupted sleep. Tomorrow morning is my last dose and I’m so excited to be done and free from my line after 25 days. I have another appointment next week and I hope to see that FEV1 number jump a bit closer to my baseline.

These weeks have been very difficult for me physically, emotionally, and spiritually. This is the first time I’ve had a serious illness since Lucas was born, and boy, that certainly changed things. I could hear God telling me that He loved me, that I shouldn’t be afraid, and that I could trust Him. But I just couldn’t get my heart to accept those words.  I was bound so tightly by fear. I would wake up each morning with a heavy, anxious heart. I was so very afraid–afraid that I wouldn’t regain any lung function, afraid my health was slipping, afraid that I would no longer be able to be the mother I wanted to be.

I finally realized that in order to release those fears, I needed to also release the tight grip I have on my child. I want so badly to meet his every need myself, and to protect him from hurt, and to be present and attentive–now and in the future. These intense desires were feeding my fears as I lost the ability to do those things for a time. I had to allow others to care for him so I could get rest and sleep. I saw the strain my illness put on him as he cried that he missed me and just wanted me. I heard his concern as he asked if I was okay and if the sick was gone. I saw his sadness and heard his complaints and there was nothing I could do to fix it. I spent more time in bed or on the couch than I did at the park or playing with him on the floor. It was painful. But just as God holds me in His hand, so He also holds my child. He loves Lucas even more than I do, and He can meet Lucas’s every need. He will take care of Lucas. And no matter what my future holds, God will never leave him. It’s not easy for me to loosen my grip, but I need to trust God with Lucas as much as I need to trust Him with my health and my life. I’ve heard people say that being a parent is an exercise in letting go. I guess my lessons are starting early.

And I know in my heart that God is already redeeming this illness in Lucas’s life and using these struggles for good. That sweet little guy has grown these past weeks! It wasn’t easy. I saw his uncertainly and fear.  But I also saw him dig deep and be brave. By this third week he has accepted our current circumstances and has been cheerfully soaking up the love others are pouring out on him (and me).  He happily went here and there every morning this week with friends or family so I could go back to bed and get extra sleep. It was hard for me to let him go, but it was great to see him thriving even without me.

photo (15)

Lucas excitedly waiting to be picked up for a Mommy-free adventure. Not shown: said (disheveled) mother counting the seconds until she could get back into bed.

photo (16)

Waiting (patiently?) for his friends. (When did he get so big?!)

I’m thankful that the worst of this illness appears to be over and we are hopefully on our way back to our normal life. I am grateful for the lessons I’ve learned through this and for the growth I’ve seen in my boy. I’m thankful that God is patient with me and is using my challenges to teach me more about His love and His purposes, and to foster a deeper trust in Him. And I’m extra thankful that bright hope has again filled my heart.

Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. Lamentations 3:21-23 

One Year in the Blogosphere

Standard

I opened Facebook this morning and was greeted with this picture, taken one year ago today:

IMG_3374 (2)

Off on an adventure!

It was a rainy Friday, last April 25th, and Jaime surprised me by coming home from work early. He decided to give me a free afternoon, so he packed a few things, grabbed Lucas, and they headed to the bus stop to ride downtown to the Hands-On Museum. I snapped this picture as they ventured out together, hand in hand.

It was during that free afternoon, exactly one year ago, that I created this blog and wrote my first post. I want to thank you, readers, for coming along with me on my journey!  Thank you for your comments both onscreen and in person, and for your words of encouragement and support. I have enjoyed writing here.  It has given me a place to flesh out the thoughts and ideas that so often meander through my mind. It has given me the opportunity to remove the shroud of mystery surrounding my cystic fibrosis and its impact on my life. It has helped me connect with others with similar life experiences and with others very different from myself. Writing has proven to be therapeutic for me as I traverse this wonderful life I’ve been given, a life full of joy and blessing amidst struggles and uncertainties.

Just for fun I created a few categories to review my posts from this past year. Check it out if you’re interested!

Betsy’s favorite posts:

Running the Race: This post rings just as true today as the day I wrote it. I feel like it’s a theme in my life–using the strength God gives me for whatever today holds.

Hello My Name Is…: It was fun to have Jaime join the blog as a writer and he did such a great job with this post! Plus he called me lovely and hilarious.  Who doesn’t love that?!  😉

Potty Training in Pictures: A picture is worth a thousand words, right? The pictures in this post make me smile every time I see them.

Jaime’s favorite posts:

What 47 Can Do: I love how this is a post of acceptance and defiance all at once. Betsy’s FEV1 baseline is 47. So what? This post is about refusing to let cystic fibrosis dictate how she lives her life.

Operation Lace Up: It’s a determined post. A post setting forth a goal. A goal that would be conquered. And it features the coolest running shoes eva.

Betsy’s favorite picture from the blog:

IMG_5717 I adore this picture of Lucas peering into the bookstore. I feel it captures this time in his life so well–his love for adventure and outings, his curiosity, his love of books, and his enthusiasm for just about everything.

Jaime’s favorite picture:

image This is my favorite picture. Of my two favorite people. Doing one of their favorite things – playing “chase” at the park. Being free as the wind.

Post that was most difficult to write:

Do I Hate CF?: I wrestled and wrestled with this post and revised it about a million times.  Even now I feel I haven’t done the topic justice.  I hope to write some related posts this next year.

Post that was the scariest to publish:

An Inheritance of One: It took me a while to click publish on this one!  It was definitely the most honest and vulnerable I’ve been about a very personal topic. Even after I published it, I felt nervous and wondered if I should go back and delete it.

Posts that Jaime wanted to delete:

Statistics: Nobody told me Betsy was going to get this up close and personal in the second post.

Making it Better: Don’t judge me for how much I spent on Valentine’s Day that year!!!!!!!!!!!!

Most commented on post:

There was a tie on this one, at six comments each:

Three Years Old

Hello My Name Is…

Thanks for reading, everyone! Until next time…

Jaime & Betsy

Finding Rest

Standard

The driving rain today sums up the past few weeks for me. They’ve been dark, they’ve been dreary, they’ve been messy and uncomfortable. Rays of sun have broken through here and there, but they have been few and fleeting.

I started IV antibiotics two weeks ago to address a plunge in my lung function which followed a difficult winter of weathering illness after illness. Being my first experience with IVs for cystic fibrosis, I wasn’t quite sure what to expect, but I surely didn’t expect what came.  Instead of feeling relief and healing, I experienced a steady worsening of symptoms.  Instead of renewed health and strength, I felt myself plunging deeper into what feels like an abyss–sleepless nights, a tight, raspy cough, unsightly congestion, exhaustion, and with it all, a profound feeling of defeat.

This is not the first time I’ve had a health crisis, and this current struggle does not come close to the magnitude of a few emergency situations I’ve lived through.  But to the best of my recollection, this is the first time I’ve struggled so intensely to pull myself out of such strong feelings of fear, worry, and disappointment.

A few nights ago, Lucas could not drop off to sleep. We were laying together in his bed, but rather than settling down, he became increasingly restless. I finally sat up and asked him if he was alright. He said no. I asked if his stomach hurt and he pulled up his shirt and pointed to a spot he said was hurting. I pulled him into my arms and rocked him as best I could on the bed, and we prayed that Jesus would ease his discomfort, anxiety, or whatever was causing sleep to be so elusive.

After our prayer, I leaned against his head-board and held him close. He relaxed immediately, his full weight pressing into me as he let go of his tension and worry. It still took sometime before his breathing became even and he dropped off to sleep, but the peace was immediate. He found the rest he needed wrapped tightly in my arms.

In this current health struggle, I feel much like Lucas did that night. I’m thrashing around, trying to get comfortable, trying to find a place to rest, but it is not coming. My mind is swirling with questions and fears and confusion. I don’t understand what is happening to me, why my lung function dropped so suddenly, why the treatments aren’t yet bringing noticeable results, why the bottom fell out after I had been enjoying a long streak of well-managed health. My very ability to live the life I’ve been given feels questionable and normal seems so far off.

I felt God speaking to me that night, as I was holding my son. He told me that I too, can find rest in His embrace. That I, too, am loved with a love fiercer and stronger than I could ever put into words. That I too, can trust Him, my heavenly Father, who is for me, not against me. I hear Him saying to me, “Do not be afraid.” But unlike Lucas, I have had much difficulty in accepting this love, this rest, these assurances in this struggle.  My heart feels locked up tight. I am restless. I am full of doubt. I am afraid.

In troubled times, there is no better place to go than to the Psalms. Pretty much every human emotion is chronicled there as the writers cry out to God in the midst of whatever life throws their way. Psalm 62 came to my mind today. In this psalm, the writer, David, talks of being assaulted, thrown down, and toppled, all words that I can relate to right now. In the midst of whatever he was battling, David says,

Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.” (verses 5-8)

Do you notice the active words in these verses?  Find rest. Trust. Pour out your hearts. That’s what I need to do right now. So although my heart is lagging behind, I am trying. I’m seeking God’s rest. I’m putting my trust in Him. I certainly am pouring out my heart. And my God is faithful. I know He will get me there. He is my refuge.

Finding rest.

“Yes my soul, find rest.”

An Update and a First

Standard

It’s update time, and boy do I wish I could tell you I was footloose, fancy-free, and feeling fabulous.  (Too much alliteration?) But alas, that has not been my story these past few months.  I told you in my last update post about a month ago that I was on oral antibiotics and steroids after contracting my fourth virus for the winter, and was beginning to feel much better. I did feel great while I was on those treatments and for a week or so once I was off.  I then entered what I thought was an adjustment phase where I didn’t feel as good.  My body had to readjust to fighting the colonized bacteria in my lungs and inflammation without the help of the medications.  I was still running on the treadmill and even got to the point where I could do a combination of jogging and walking for two miles in 28 minutes.  The exercise definitely got harder once the medications were ended but I still thought I had made some sizeable gains as I was tolerating a much higher level of activity.

Imagine my shock when at my follow-up pulmonary appointment last Thursday my breathing test (FEV1) was down an additional three points from where it was when I was sick. I knew I wouldn’t be back to the 49 I was at before virus number one in December, but I thought surely, surely I had made some progress.  I couldn’t believe that it was even lower. My doctor was surprised as well, enough so that he scheduled a repeat test just four days later to make sure it wasn’t a fluke.  I wasn’t showing any signs of an overt infection–my temperature and oxygen saturation were normal, my lung sounded clear, my congestion was unchanged in color, texture, and quantity, my exercise tolerance was up, and my weight was up.

Over the weekend I did notice the advent of some increased cystic fibrosis symptoms–more coughing, more wheezing, more windedness, more tiredness, but I still thought for sure the test was wrong.  On Monday I had my retest and the FEV1 dropped another point, for a total loss of 17 points. Sometimes you just can’t win.

After a frustrating winter, this latest development was incredibly demoralizing. I have worked hard exercising and eating right and trying to take good care of myself, but those FEV1 numbers just don’t want to budge. My doctor was very concerned as well. We simply cannot leave a number in the low 30s alone, so it is time to get a bit more aggressive.  I had a chest x-ray which didn’t show anything unexpected, and will have a CT scan early next week.  I’m back on steroids, just a low dose this time, and for the first time, I started IV antibiotics.

I know, the other CFers out there are probably scratching their heads.  I’m aware that most people with cystic fibrosis have their first round of IV antibiotics well before age 36, but that hasn’t been my experience.  Because I didn’t struggle much with my lungs until my late 20s, I have not required frequent antibiotic usage and oral antibiotics have always been very effective. However this time, the oral antibiotics didn’t make a lasting difference, so my doctor felt that using IVs, which are more potent, was a must as we aim to get my lung function back to baseline. Although it’s disappointing to have this first, I’m very grateful for a stronger treatment option and feel blessed to have made it thus far without needing them.

Yesterday I got a picc line placed.  Picc stands for “peripherally inserted central catheter” and is a thin, flexible line that runs through a vein in my arm towards my heart. It allows me to do my IV antibiotics at home. Last evening the visiting nurse came to teach me how to administer the drugs and I will be infusing them for the next two weeks.  It will be a bit rigorous as the medications need to be infused on a strict schedule, and I will have four infusions a day.  One set of infusions is back to back which will mean an hour and a half of being attached to a pole. This schedule will mean also missed hours of sleep.  But I hope and pray that this will get me back on the upswing.

Lucas checking out my picc line.

Lucas checking out my picc line.

photo 1 (9)

First he “fixed” the tubing (with his flashlight)…

...then my line!

…then my line!

I was a bit concerned how these treatments would affect Lucas. He is a pretty sensitive little guy.  So far it is going well.  He seems to think the line is some type of accessory (it is purple after all!) and he told me he likes it. He has asked me many times today if I’m okay and if the sick is gone, and has been showering me with hugs and kisses and love, so I know he’s aware. There have been a few signs of stress but overall he’s doing great.  And I’m not gonna lie, the extra love and affection has really helped me get through this day.

Yesterday as I was getting my line placed, the nurse asked me if I’d like to listen to any music on Pandora.  I asked for some soothing classical music.  Just as they were about to make the incision and place the line, a piano rendition of the hymn Great is Thy Faithfulness started playing on the radio. The title of my blog, Bright Hope, comes from verse four of this hymn (written by Thomas Chrisholm in 1923):

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

This perfectly timed reminder from God of His faithfulness was just what I needed. I have been struggling to remain hopeful as this current fight has seemed long and hard. I feel at times that I am pushing against an impenetrable, immovable force. The feeling of defeat is poignant when those FEV1 numbers drop and drop without any clear explanation, and none of my efforts seem to matter.

But I have experienced God’s faithfulness over and over in my life. I know this current struggle will be no exception. He does give me strength, and hope.  His mercies are new every morning. I don’t know exactly how this will all turn out, but I’m hoping and praying for complete healing.

My sweet little lover boy. (Yes, my IV is hanging from a lamp...but that's a story for another day).

My sweet little lover boy keeping me company during my infusion.

In the meantime, you can be sure I won’t give up. The “blessings all mine” are so worth fighting for.

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
Great is Thy faithfulness, Lord, unto me!

A Big Bed for a Big Boy

Standard

First off, apologies if you follow me by email and got this post a few hours ago.  I have no idea how it got published but I wasn’t quite done!  That said, here’s the completed post 🙂

Lucas is changing, changing, changing!  Three and a half has been such a fun age as we see him grow and mature and learn and thrive.  He is such a joy.

I had all sorts of ideas about what Lucas would be like and how we would parent him before he came. Once he arrived, a lot of those ideas went the way of the dodo bird as they didn’t fit with who our little boy was. Oh the ideals I had.  And how Lucas shattered them.

One of our unexpected deviations was Lucas’s sleep.  Lucas was four weeks early and even on the night of his birth, when he was so tiny and should have been so sleepy, he would only sleep if he was held. This didn’t get much better after we got home from the hospital.  The first few nights Jaime and I took turns holding him through the night. Eventually we found that he would sleep in the bouncy seat (which snuggled him), but only for 2-3 hours at a time. Then he wanted to be nursed or held.

When he outgrew the bouncy seat, the only way he would sleep any length of time was next to us in bed. When he was about 15 months old, we were finally able to get him to go to sleep in his own room on a mattress on the floor, but he would only ever sleep part of the night on there.  He would always end up in bed with one of us.  About six months ago he decided that moving from his room to ours in the middle of the night was silly, so he requested to go to bed directly in our room. It’s not that we didn’t try to help him be more independent in the night.  But nothing ever made a difference no matter how long we stuck to it. He just needs us in the night. And that’s okay.

We’ve learned that when it comes to making changes and moving toward independence, it’s best to wait for Lucas’s timing when possible. Sometimes it still takes nudging on our part once we see he’s ready (like with the potty training) but sometimes he simply tells us when he’s ready for something.

A few weeks ago he told us that he’d like to go back to sleeping in his room, and that he wanted a big bed because he was a big boy. We were excited and thought we’d best jump on it before he changed his mind! It resulted in a few crazy days of scrambling as we shopped for a bed for him.  I bought fabric to make some simple wall hangings and to recover his lampshade and the letters of his name, and sewed him a pillow and curtains. We found a comforter set and and sheets to match.  His baby room was transformed into a big boy room!

If you’ve been following along, you probably remember that Lucas is obsessed with the color orange.  He adores all things orange.  And woe to anyone who tries to claim orange as their favorite.  He feels the color belongs to him.  We painted his room a lovely blue color before he was born, and since we were trying to pull this room together within just a few days, I really, REALLY didn’t want to paint.  So we did our best to accent with orange, and he loves it!

Lucas has been sleeping in there every night since.  He still doesn’t make it through the night alone.  He’s gone as far as 6:00 am but he still calls nightly at some point and Jaime snuggles with him until it’s time to get up.  We suspected this might happen and bought him a double bed which satisfied his desire for a “big” bed and gives us a comfortable way to lay next to him. We still cuddle with him at bedtime until he falls asleep. The other night he told us he wanted to go to sleep all by himself. He gave it a good college try, but a few minutes in we heard some sad sounds. We turned on the monitor and heard him wimpering, “Oh no, I’m scared, I’m just scared!” So we pulled the plug on that and helped him get to sleep.  He’ll do it all alone once he’s ready.  In the meantime, we enjoy the cuddles and snuggles and sweet times with our rapidly growing and changing little boy.

Here’s a few pictures of his big boy room!

photo 1 (8)

Lucas saw this bank at Target I just couldn’t say no! His best friend has the same one. An orange dinosaur for his new room 🙂

photo 2 (7)

A dinosaur comforter, an orange “egg” chair, some bright wall hangings, and orange chevron curtains.

photo 3 (3)

Orange letters, and a place on his bookshelf for his new dino bank which he named “Urna” (?!)