Posted in Being a Friend, Faith, Inspiration, Life with CF, Uncategorized

“Five Feet Apart”— My Two Cents

So it’s now been a few days since our sixteen year-old daughter, Meg, and I went to see “Five Feet Apart,” the movie in theaters now about teens who are battling Cystic Fibrosis (CF). I wanted to share my thoughts because I know many of you have asked me personally how I felt about it. I’ve gotten a ton of questions, so I’ll try to address some of those here. 

Should I go see the movie?

YES! PLEASE go see the movie (or rent it when it comes out on Blue-Ray/DVD). It will give you some good insights into Cystic Fibrosis and a whole lot of sappy feels! Get some Kleenex, and prepare to ugly cry if you are a crier. 😭😉 Tell your friends about it and have them tell their friends.

How were you feeling about the movie before it was released?

I was actually very excited about the movie and the awareness it would bring to CF. In full disclosure, I was experiencing a whole range of emotions about this movie before I even saw it. Some questions arose in the at-large CF community around the sensitivity of some of the advertising campaigns, whether or not we as CF-ers needed to wear masks to the theater in anticipation of more people with CF being there and the increased risk of cross-infection, what the general reactions would be to the film, etc. There were a lot of STRONG emotions in the community and a lot of conversation ensued. I guess I would say I ended up going into it a bit charged up. I also was a bit worried how it would impact our sixteen-year-old daughter. 

Did you wear a mask to see the movie? Do you usually? Is the six-foot rule really a real thing? 

I went to the movie theater WITH a mask and ended up taking it off when I got there. There were very few people in the theater on a Monday night. All of us patrons were more than six feet apart. (Yes, the six-foot rule really is a reality for CF patients, and is a recommended standard from the Cystic Fibrosis Foundation.) I’ll admit I was curious if any of the other patrons attending had CF, but that was just a momentary thought. 😷 I don’t usually wear a mask to movies. My own personal preference for this particular movie was to be cautious and see how crowded (or not) it was.

How did you feel about the movie after you watched it?

In all honesty, the movie WRECKED me. Even though I had read the book beforehand and had followed the movie campaign closely up through release, it really hit me emotionally in places I didn’t expect. Private thoughts and feelings that I’ve had about living with CF were right there on the big screen for all the world to hear and while it was comforting to hear them being said because I knew someone else had obviously had them too, it was also a bit uncomfortable. A little weird, I know. I’m still mentally digging through it all. 

The movie made me very SAD for all my CF friends I have lost who didn’t get to see it. Add a huge dose of “survivor’s guilt” and it required quite a lot of mental “unpacking” for me over the past few days. I still feel like I’m grieving in some ways. To be fair, it probably didn’t help that I was already grieving the personal loss of a friend (not a CF-er) that passed away last week. So there was lots of emotional punch personally.

The best part of watching it was the questions our daughter asked afterwards and the conversation that ensued. She handled it better than I did actually. I was really proud of the maturity she displayed.

Does the film give an accurate depiction of CF and is it close to what you have experienced as a CF patient? 

As for the accuracy of the film, there were some things that weren’t completely right, but a lot more that were done so very, very well. I give A LOT of credit to the actors who showed such empathy and respect in trying to portray people living with the disease. 

The medication and airway clearance (vest) “regimen” seen in the movie is pretty much mine to a tee. I’m not on oxygen often; maybe as support for a really bad setback, but definitely not around the clock. My lungs just aren’t there yet which is a blessing, I know. I also don’t have a g-tube for nutrition because I’m able to hold my BMI well enough with eating extra calories and taking my pancreatic enzymes. Middle age helps a lot around the waistline too. 😉

I have colonized pseudomonas aeruginosa that two of the characters, are assumed to have in their lungs (not b. cepacia), and I often culture staph as well as some other random bugs that I can hardly pronounce, let alone spell. 🤔 I also have aspergillus which is a nasty little fungus that my lungs are highly allergic to. 

In the movie, the characters roam the hospital between treatments and I don’t have quite that freedom. I often experience severe CF-related arthritis/joint pain that only impacts about 5% of the CF population. My last hospital stay I was in bed all three weeks on doses of IV morphine and oral pain medications, so I was stuck in my room, which I think makes it tougher when you have to look at the same four walls all the time. No exercise is not good for a CFer’s lungs, but exercise becomes difficult when you can’t move. This is unfortunately a dilemma I have to think about a lot. 

On the other hand, if I’m not having a joint flare-up and I’m in-patient, you’ll see me, my family, and/or friends hanging out in the atrium/cafeteria or walking the hospital hallways. I’ll be in the exercise room on the treadmill too. So again, the movie had some pretty accurate insights here, though I’ve discovered that different hospitals definitely have different policies. For instance, b. cepacia patients are seen at different clinic times and are hospitalized on different floors at my hospital as a precautionary measure.

Do you have friends with CF or do you participate in online CF communities?

Yes! I have made some really special friendships with people with CF online and in person from the CF community. I have co-chaired and spoken at lots of  local fund-raising events, counseled parents with children who have CF, lead walk teams, served on patient counsels and speaking panels. Honestly, I do tend to hold myself to a certain distance though, especially as an adult. It’s difficult to lose friends time and time again, and as I get older, it’s happening A LOT. 😔 It hurts to watch people you care about get sick and die. As I mentioned earlier, sometimes I feel a bit of survivor’s guilt just being here when some people I cared deeply about have lost their battles earlier on.

I switched hospitals and CF clinics after 43 years of being a patient in one place, so I really don’t know a lot of the people at the “new” hospital. Still, every so often, a curious CF-er will stick their head in my room to say hi and introduce himself or herself. Bring it on. Love meeting new folks and sharing our experiences.

Do you have hope that a cure for CF will be found? How do you stay positive in your own fight with the disease?

There is SO MUCH GOOD happening around new treatments and strategies right now in the CF Community. I am super pumped for all who will benefit from them and excited to see what the future holds for both the older and younger generations. It is sometimes bittersweet as an older patient knowing that I may not benefit personally from some of the future advances, but I think for the kiddos who are being diagnosed with CF today, they are gonna see that cure in their lifetime. My hope is that I get to celebrate it with them!

My personal faith gives me hope and strength everyday, no question about it. God has blessed me with a gift of inner joy that seems supernatural at times, and I love that I can genuinely celebrate life in the midst of such a trying disease. I have my “down” days, but honestly I feel really lucky to be here and hope to inspire others who also battle the disease. 

I want to help find a cure, where do I donate? 

Go to the Cystic Fibrosis Foundation website at https://www.cff.org/

GOD BLESS AND EASY BREATHING!!  ❤️❤️❤️ 

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Posted in Inspiration, Kindness, Uncategorized

Equal Time Challenge

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Photo by Rawpixel used with permission from Unsplash 

Today on social media, we see all kinds of challenges that have gone viral in our world. Ask a kid over the age of 10 if he/she knows about the Bottle-Flipping challenge, and I guarantee they’ll be begging to demonstrate their personal flipping skills with a water bottle (as their parents or teachers groan audibly in the background).

Who can forget the ALS Ice Bucket challenge that went global a few years back? Did one of your family members or friends challenge you to participate? I don’t think the ALS Foundation or the families impacted by this disease will forget the global awareness and funds for research that were created through the effort that continues to still draw participants today.

Admittedly, not all the challenges issued through social media have been good or even safe ones. In 2017, Tide Pods became the subject of many memes and articles as teens challenged each other to ingest laundry detergent. Parents all around the globe were shaking their heads at the curiosity of it all while we silently wondered if we had raised a generation of kids who had lost all common sense.

It’s obvious to me then that social media challenges garner a lot of attention from people of all ages. Given the success of this platform and the appeal it has for so many, it seems a pity to waste it and not use it to our advantage. In a world that seems increasingly rooted in political battles, social issues, and the decrease of religious freedoms, why not challenge ourselves and our kids to make it better? What if we issued a world-wide social media challenge that for every hour we spend frivolously on social media, we need to do one equal hour of good in our homes, in our communities, in our world? What might that look like? Would it decrease the amount of time people spend on social rants? Would it decrease the number of internet trolls or online bullying? What changes might we see in our schools, workplaces, or even at home if we put this into regular practice?

A good many of you might debate that it’s unrealistic, that nothing that requires work of this nature would be of interest to people, but I disagree. How many of us were willing to dump freezing cold ice over our heads to help a much smaller subset of our communities or families in need? How many times have you heard recently that our world is falling apart? It doesn’t have to if only we’d each vow to do our part and then actually do it. The good doesn’t have to be monumental, it just has to be well, good. If we are willing to flip a bottle or fill up a bucket with ice, why can’t we encourage a friend, smile at a stranger, hold a door, shake a hand, lend a dollar?

So I’ll issue the challenge. For every hour you spend on social media, spend equal time doing some good. I double-dog dare you! Try it for a month, a week, or even just a day. Post it to all your social media accounts and let’s see if we can make goodness go viral. Text/email it to everyone in your contact list. Who will join me?

If you would like to participate in the equal time challenge, simply post the following to your social media accounts and text/email everyone in your contact list to challenge all of your family and friends. Then, simply do as you promised.

I’m taking part in the Equal Time Challenge to make our world a better place. For every hour I spend on social media today, I am committing to doing one equal hour of good to improve my family, my community, my nation, or the world at large. For more information, visit https://hundredpercentchanceofchange.wordpress.com/ #equaltimechallenge

 

Posted in Faith, Family, Inspiration, trust in God

Getting Organized

It’s probably not surprising to those of you who know me well enough, but the truth is, I have a slight Monica complex. Those of you who were fans of the hit TV series, “Friends” will understand immediately when I refer to Monica’s “secret” closet. If you didn’t watch the show, Monica’s character was a bit obsessively compulsive about cleanliness. If anything was dirty or out of order it drove her absolutely nuts. However, in one episode (spoiler alert!), we learned that even Monica has her hidden messes when her boyfriend, Chandler, discovers her secret stash of junk tightly piled into a locked closet.

While I’m not nearly as obsessed as Monica was, I think my family would agree that especially when people come over, I want things the way I want them — preferably neat, and tidy. The issue is that on a regular day our family is not naturally that way and despite having two teenagers living under our roof, I might be the worst culprit. Before company comes, we’re making the mad dash to clean up the kitchen island and the bathroom counters before we scrub them down. I’m shoving who knows what into random drawers and hoping no one will need to open them for any reason. So for 2019, one of my key goals is better organization behind the scenes. I want to know that I don’t have to fear someone opening my secret closet and discovering what a mess we really are underneath.

As I’ve been starting this behind-the-scenes reorganization project, the thought occurred to me that I wonder how many people feel like this about a potential relationship with God as well. Do we think we have to get everything cleaned up and in perfect order before we can approach Him and invite Him into our lives? Do we fear like Monica and I, that He will discover that we aren’t always living a life that is neat and tidy behind the scenes?

Well my friends, I have good news for you. He not only already knows our messes, but He loves us despite them. Because of sin, we will never be perfect and our lives will never truly be neat and tidy. He not only knows it, He sent His son to die on a cross because of it, all because He loves us — disorder and all. If you are delaying pursuing a relationship with Him because you think you need to get yourself more organized before you reach out to Him, I’m here to tell you, don’t. His amazing love and His grace are the greatest organizers of them all. And just as Chandler assures Monica in the Friends episode that he doesn’t love her because she is organized or not, our God accepts and loves you as well, mess and all.

Posted in Being a Mom, Faith, Family, Inspiration, Uncategorized

The Secret

I’ll let you all in on a little secret that I’ve been carrying around with me for about the last 16 years. It’s difficult to share, but it is something I feel the need to get off my chest. So here goes. My secret is this. I’m a mom and I’m not doing it perfectly.

I know it’s hard to believe, but despite what my Facebook, Instagram, Twitter, and Snapchat feeds might depict, our family is far from ideal. While it pains me to admit it openly, our kids aren’t exactly faultless either. In fact, they are sometimes lazy, messy, selfish, disrespectful, ungrateful, judgemental, complaining, angry, — the list could go on and on. Here’s the worst part of my secret. Do you know who they learned some of these awful behaviors from? Yep, you guessed it. It was me. Now there’s a slice of humble pie that doesn’t look so appetizing.

Ever since they could walk and talk, our kids have been watching me. When I think of them, I hear the gravelly voice of Roz from Monsters Inc. in my head, “I’m watching you, always watching.” As their mom, my kids have seen me at my very best and my very worst. They’ve heard me say to them “Don’t judge,” and watched me do just that. They’ve listened to me say, “Stop complaining,” and have witnessed me grumbling with my very next breath. Unfortunately, they have seen a whole string of these unsightly behaviors over the years; and sadly, they’ve even repeated them.

It’s easy to point fingers at society, at their teachers, their friends, or various other worldly influences, but when I look at myself as one of their primary role models, I realize quite humbly, that what they’ve been watching over the years, is not necessarily what I always wanted them to see. I didn’t always do parenting the “right” way. I screamed, I yelled, I made poor choices, and my kids have seen it all.

Some parents will find failure in that admission, wagging their fingers or their tongues about the quality of my parenting skills. I have to admit, I’ve spent plenty of time in my life beating myself up over that very fact. As of late though, I’ve also found great freedom in the admission as well. Freedom in knowing that while my kids are quite familiar with my mistakes, they have also seen me at my brighter moments. They were watching when I chose to give of my time at church. They saw me take dinner to an ailing friend in need. They’ve seen moments of patience with the grocery clerk when there was a glitch in the system that was holding up the entire line. Just as often as they’ve witnessed the bad, they’ve undoubtedly also seen the good. I see that good reflected in them when they practice forgiveness, kindness, patience, love, compassion, generosity, unselfishness, hope, faith, honesty, and so much more.

More importantly, I believe God sees it too. When He does, I like to think He celebrates. Not that I’ve adequately done my parenting duty or that that they’ve done another good deed, but that we’re all growing. While I am not the perfect parent, He has created me as the perfect example for my children, that through His grace and mercy He is molding us all into the people He wants us to be.

I would offer this advice to my fellow parents and guardians out there today. Be kind and supportive to one another and to yourselves. Allow yourself to experience the freedom of knowing that in even in our imperfection, He is using both the unsightly and the good in all of us. While He did not create evil, He can control it. As Romans 8:28 says, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

Today I pray that as parents and guardians, instead of criticizing one another, we would all strive together to remind each other of this fact. It’s okay to admit you’re not the perfect parent and that you’ve made mistakes. It’s okay to admit that your kids aren’t completely blameless too. If we all were willing to make this admission, I think parenting would be a whole lot less lonely and wildly more productive. God bless and easy breathing! 0DC59459-3729-477E-BB5F-D1C1742CFB3E

 

 

 

Posted in Faith, Family, trust in God, Uncategorized

It’s Not About Me

5FCC8903-44E8-4731-8ECF-19F369067BFEOver the past few years, I have had the joy and privilege to see God at work in a friend’s life. I have watched her intensely study the word of God and immerse herself in Christian reading. She has served in a variety of ministries at our church, often in a leadership role. She has ministered to the poor both locally and overseas, and that joy of serving has spread to her husband and her children in ways I know she couldn’t have even imagined. I see God’s light in her and I continue to be both proud and inspired by her example.

To be honest, I get frustrated too; not with my friend of course, but with myself. I get angry that my relationship with God seems so two steps forward and two steps back. I feel sad that even in my immediate family, faith is a topic of great debate. While we challenge each other with our different viewpoints, we don’t always agree on how following Christ should look. Our family has served in different capacities; but if I’m being honest, my kids are not eagerly seeking opportunities to serve right now. In a growing place of restlessness, I sometimes look around me and ask God, “What am I doing wrong?” In that moment, He hits me with an answer that feels a bit like a two-by-four to the forehead, “IT’S NOT ABOUT YOU.”

When the realization hits, I acknowledge I’ve done it again. I’ve let my need to control everything around me spin me into a state of anxious chaos. I have let that slick salesman of evil (also known as Satan) plague me with fear, rob me of my joy, and put doubt in my head. Instead of trusting God’s perfect plan, I am relying on myself to make things happen according to what I think they should be. As the admission sinks in, I once again realize my continued need for His grace and remember Romans 9:16, “It does not depend on man’s desire or effort, but on God’s mercy.”

Do you struggle with trusting God’s plan and battle against the enemy of control? I recently discovered this prayer of surrender by Thomas Merton and I really love it.  I hope as you read the words, they bring you peace wherever you are in your own journey. God bless and easy breathing.

My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore will I trust you always, though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

 

 

 

Posted in Uncategorized

Sweet Surrender

Our dog, Daisy, is seven pounds of butterscotch cuteness. She is a Morkie, a mix of Yorkie and Maltese. She is intelligent, sassy, loves people, and is the perfect size for snuggling. Staying true to her “little dog” persona, she can be a bit skittish of noises and tends to bark quite loudly at anything that threatens her peace. Unfortunately, this includes the Fed Ex guy, the garbage trucks, the school buses — you get my point. On a rare occasion it is the wind blowing the screen door or something randomly bumping around outside that scares her, and usually what follows is a total assault on my ears. This morning was one of those times. 

I was pulling my journal and Bible from our bedroom for some quiet time, and I heard her begin a barking tirade. I went to the door to see if someone had come, or a delivery had been made, but there was nothing there. I reassured her that everything was okay and proceeded to sit down. Her barking had decreased but she was still nervous and pacing around my chair. Finally she climbed up into my lap and snuggled in. I found myself continuing to pet her and reassure her that everything was okay. While her barks quieted, she still continued to remain alert and woofed every now and then just to let me know she was still feeling uneasy. I continued to reassure her that she was safe and that I was not going to let anything happen to her, yet still she woofed softly from time to time. Finally, at last she was able to relax and fell into a deep sleep. 

I thought about this situation in the context of my own relationship with God. I often come to Him in a frazzled state and He invites me into the calm of His presence, His lap, so to speak. He reassures me with His promises that I am safe and secure with Him and that I am deeply loved. Psalm 27:1 says The Lord is my light and my salvation– whom shall I fear? The Lord is the stronghold of my life– of whom shall I be afraid?

Yet, just like Daisy, it takes awhile for me to trust in his protection and I continue to assault him with my personal woofs, the “Whys?” and “Are You Sures?” By doing so, I defy His request for me to “Be still and know that I am God.” (Psalm 46:10) 

Are you having a hard time resting and being still in His presence? Do you long for the sweet peace of surrender where you can find true rest? Ask Him to help you surrender you heart, your mind, and your body to His promises. Remember that you have been saved by grace. There is no greater safety than that. Rest in His love and protection. Daisy will show you how it’s done.