Posted in Being a Mom, Dealing with Trials, Inspiration, Life with CF, Uncategorized

Will there still be cheese sticks?

TODAY’S FORECAST: Frazzled

So, I have to begin this post with an apology that it’s posted a day late, so sorry. My hubby’s 40th birthday was yesterday, so we spent the day celebrating as a family. A shout-out to my honey, welcome to the “40 and fabulous” club, Bob! Remember, you’re only as old as you feel. 🙂

Okay, so now that I’ve gotten that out-of-the-way, I have to tell you about an experience I had this past Friday with our seven­-year old, Jacob. I was watching a beautiful video tribute that a friend who also has Cystic Fibrosis had shared on Facebook that afternoon called The Faces of Cystic Fibrosis. It was a compilation of people who are battling CF today, as well as some who have already succumbed to the disease. My kids were playing outside, and needless to say, I was discreetly watching, as I didn’t think they necessarily needed to see some of the footage containing very emotional goodbyes and memoirs of those who had already passed on. While we are very open with our kids about CF and what it entails for Mommy, I don’t want to burden them with the really tough stuff until I have to.

The next thing I knew, Jacob flew through the front door, sat down beside me and inquired, “Whatcha watching, Mommy?” Not wanting to lie to him but quickly trying to shut the video down so he wouldn’t see, I told him, “Well buddy, it was a video about people who have CF just like Mommy.” He seemed to ponder that a moment then asked if he could go next door to play some more. I really didn’t think much more about it.

That night as Bob and I were tucking the kids into bed, I went into Jake’s room to tuck his blankets around him and give him his nighttime medicines. When I kissed him and told him I loved him, as I always do, he gave me that look like something wasn’t quite right. So I sat down on the edge of his bed and asked him, “Hey big guy, what are you thinking about?” He immediately responded with, “Nothing mom, it’s not important.” I encouraged him further, “Is there something bothering you, baby?” Then I noticed his eyes welling up. I was not prepared for what came out of his mouth next.

“Mommy is your CF going to make you die?”

I held my breath for what must have been just a couple of seconds but it felt like a lifetime. I felt like someone had kicked me in the gut seeing the tears in the corners of his eyes. I answered him cautiously, hoping a simple explanation would put his fears to rest. “Well, not today it’s not.” I smiled. He was still looking at me quizzically so I continued, “No one knows exactly how and when they’re going to die, buddy. God has a place and time picked for each of us when our work here on earth is done and that’s when He’ll call us to heaven. So honestly, any of us could die tomorrow, next week, 10 years from now, who knows.”  You could almost hear the little wheels in his mind turning.

“Yeah, but Mom, do people with CF die faster?” Again I proceeded cautiously, hoping I’d have just the right words. “Well, sometimes they do, everyone’s different.” He said, “That video you were watching today, did it have people who died in it?” Realizing quickly that I must not have shut the video down near as quickly as I thought, I now understood what was prompting his questions. “Yes buddy. Sometimes when people have someone in their family that has died they want to give the world a memory and talk about all the things they loved about them.”

“Mommy?”

“Yeah babe.”

” “If I made a video about all the things I loved about you it would be really, really, really long like Rocky. We might need to make four or five videos.”

In that moment I scooped my baby up, put him in my lap and hugged him tight. I told him that he didn’t need to worry because I was doing really well and I didn’t think God thought it was my time yet because I had to take care of him, Meghan and Daddy. We cuddled for a few minutes and then he climbed back under the covers. I kissed him and hugged him and told him how much I loved him. I told him if he had any other questions we could talk in the morning. He said, “Okay” and “I love you Mom” as I was walking out and drawing his door closed.

I hardly slept that night. His words kept swirling around in my head. The next morning, we both were up early so I took the opportunity to follow up on our previous night’s conversation. “Hey Jake,” I said as I was getting the TV channel changed for him from ESPN to Disney. “Do you have any more questions for Mommy this morning about we talked about last night?” His response, “No, I just need to know if you go to heaven before me, will Daddy still buy cheese sticks?” I laughed out loud. From dying to cheese sticks, you have to love the mind of a seven-year old. “Yes, Daddy would still buy cheese sticks and juice boxes and all the things you need.” He seemed content at that answer and turned to watch his show. About five minutes later when it came to a commercial he grabbed his beloved blankie and “Baby Lion” and climbed up into my lap. We sat there through the rest of the show cuddling together just like when he was very little. I told him that he could always talk to me and ask me any questions he had. He just snuggled in closer. I knew he understood.

Today, I thank God for my children and their curiosity. In all the moments of frustration that we encounter, I wouldn’t trade the moments where they share their heart’s longings, desires and fears, even about cheese sticks! I am thankful that God allowed me to be a mother when the odds were clearly against me. I thank Him for the openness I share with my kids and that they feel comfortable to be honest with me when they have tough questions. Today I’m especially thankful for “my big guy” who will always have my heart.

Posted in Being a Mom, Dealing with Trials, Inspiration

Old Yeller

TODAY’S FORECAST: TGIF!

I’m wondering how many of you are old enough to remember the beloved tale of Travis and his faithful dog, Yeller, by Fred Gipson. While it’s an endearing classic, if you were to ask either of my children who “Old Yeller” is they’d probably look at you and say, “Old yeller? You mean Mom?” Okay, okay, probably not, but that is how I feel they view me sometimes, as this person that yells at them continuously. I try really hard not to raise my voice, but sometimes it’s inevitable when they push me to my limits. Unfortunately, that happens more these days than I care to admit.

This morning was a perfect example. Everything was going quite smoothly before school until it was time to brush their teeth. I knew I was in trouble the moment they entered the bathroom at the same time. I figured I had about 45 seconds before World War 3 erupted, I was wrong, it only took them 38. This is how it all went down:

Meghan (Loudly enough just to make sure I hear her): “Jacob, you’re getting toothpaste all over the counter.”

Jacob: “You’re not the boss of me, sissy.”

Meghan: “Jacob, I’m not trying to boss you, you have to brush your teeth or we’re gonna be late for the bus.”

Me (from the kitchen): “Yes, guys, let’s brush your teeth, we need to get going.”

Meghan: “Mooooommmmmm, Jacob just threw my toothbrush in the bathtub.”

Me: (heading to the bathroom to intervene and praying to God for patience as I walk): “Jacob, did you throw sissy’s toothbrush in the tub?”

Jacob: “Yes, but she was being mean to me.”

Me: “How was she being mean to you?”

Jacob: “She told me I had a baby toothbrush and was bossing me around.”

Me: “Meghan, did you tell Jacob he has a baby toothbrush?”

Meghan: “Yes, because he was baby-talking and he was acting like a baby.”

Me (silently reminding God how I had just had prayed for some patience, hoping He will throw me a bone): “Meghan, rinse your toothbrush off, get some new toothpaste and do not say a word to Jacob. Jacob, you concentrate on brushing your teeth and don’t touch your sister’s toothbrush. Both of you need to apologize to each other. I want you out here with your teeth brushed, shoes on, ready to go to the bus-stop in the next five minutes. “

Five minutes later, after taking a quick brush to my hair in the other bathroom, I come out and their shoes are still waiting for them by the door. Then I hear giggling coming from the direction of the bathroom. I walk in there only to see them laughing and carrying on, with their toothbrushes STILL sitting on the counter with toothpaste on them! Jacob has toothpaste all over his shirt sleeve and Meghan has it on her back. Yep, you guessed it. I lost it – BIG TIME!

It is in moments like these as a parent that I wonder what the right response is when my usually good children grow temporary horns and choose to push my buttons. I wonder if Mary and Jesus had these moments as mother and son when “full of grace” did not really apply.

The Gospel of Luke tells us that as a young boy, Jesus panicked Mary and Joseph when they were traveling back from Jerusalem when they couldn’t find Him in their traveling party. Luke 2: 48-49 (NIV) tells us, When his parents saw him, they were astonished. His mother said to him, “Son, why have you treated us like this? Your father and I have been anxiously searching for you.

Do you know what that situation would have looked like had that been my children? Yikes! I dread even thinking about it. If I had to guess, it would probably go something like this:

(Hugging them so tightly they can’t breathe) Are you okay, are you hurt?

(After visually scanning them to check that there are no cuts, bruises or other signs of foul play) Oh my goodness, I love you so much!

(Then with a look that could kill) You’ve been doing what? Where? How could you go off without telling us? Do you KNOW what could have happened to you? Don’t you ever, ever do that to us again, do you hear me? No, I don’t want your excuses. You do that again and the next time you’re going to wish I didn’t find you!

And that my friends would be the calm version 😉

The fact of the matter is, I’m not a perfect mom; never will be. Even if I try to make yelling less a part of my parenting, I know sometimes I will fail, as we all do. My kids know they are loved even if I tend to contract a slight case of the crazies from time to time. God knows I’m trying, loyal and faithful to the cause of teaching my children to be good disciples. If I need to do a little yelling in the process to get my point across, then hey, it happens.

I saw this prayer a couple days ago when I was looking for blog material and thought it was pretty good.

Lord, please forgive me for my impatience, especially when my seemingly sweet children grow horns and “Old Yeller” has come out to play. (List any item that challenges your patience with your children.) God, I ask that You would enable me to have patience with the everyday innocent and not-so-innocent failings of my children. It is my job to teach them how to be Your little disciples. Please enable me to reprimand my children and restore them with gentleness and mercy as You do. Thank you, that with Your help, I can be patient as You are. Not a day goes by, that I don’t need Your Holy Spirit poured out in me so I can be Christ-like in my patience, especially with those who live in our home, or who work at the bank who still don’t understand how to process my social security payment off my card or the pharmacy tech who keeps putting my refilled medicines in a different place so that I have to go pick them up in stages, multiple times. (List any other items that challenge your patience personally). Lord we ask this in your precious name, Amen.

Posted in Being a Wife, Inspiration, Uncategorized

Not That Different

Today’s Forecast: Itchy (Allergies, allergies go away!)

My husband Bob and I are two very different people. Bob can’t ever sit still; in fact, he gets uncomfortable if he has to be in one place for a long period of time. The exception is sports. He is happiest when watching an Ohio State football game, or any other sport for that matter. Fishing is definitely not a problem for him either. He can sit for hours in a small boat dangling his pole over the side and is content to spend the day dreaming about that “big catch” and enjoying the peacefulness of it all.

Me, I like to be on the go too, but I can only go to a certain point and then I need some downtime. It’s not because of my limitations with CF, either, I just need some time to decompress with a good book or a killer season premiere of one of my favorite television shows.

Bob and I are different in other ways too. He likes to keep details relating to our family and my health to himself; I share them with everyone I know. He’s the analytical one, I’m the creative one. He loves to drive and is great with giving directions. I hate to drive and will get lost going around the block. He is cautious and practical; I am impulsive and prone to be driven by my emotions. He keeps his heart to himself; I wear mine on my sleeve. When I get mad, the whole world knows it as I stomp around and let my irritations be well-known; when Bob gets mad, it has been building for a long, long time and you’d better look out because when he blows his top it will be big. Bob loves God quietly, privately. I love God boisterously and am always sharing my faith with anyone who will listen.

You can look at mine and Bob’s relationship two ways, really. You can think about how different we are and all the things we don’t have in common, or you could say we’re a fantastic balance to one another, a perfect match. I choose to see it as the latter, but it wasn’t always so.

I won’t tell you our whole love story here; we’ll leave that for another post. The gist of it is though was that Bob liked me, I thought I liked him; my stubborn heart then told me I couldn’t like him and he had it on his heart to convince me otherwise. Man, was he a persistent bugger! 🙂  I will never forget when he sent me home with a CD to listen to of a country artist called Collin Raye. The particular song he wanted me to listen to was “Not That Different. “ Go ahead, listen to it now by clicking on the YouTube link below. Even if you aren’t a country music fan, the video is awesome; you’ll be glad you did. But then keep reading, there’s still more to this post!

YouTube: http://youtu.be/-r9KAU-RKu4

Bob and I had a whirlwind courtship. We got engaged six weeks after we started dating and were married 11 months later. You’d think God really wanted us together or something! LOL. Now I know why. Despite all our diversities, God knew I needed Bob in my life. Bob and I have had plenty of spats and disagreements over the years as most married couples do; however, I would not trade him for the world. He is loving, steadfast, faithful, and humble, a hard-worker, an amazing father, husband, brother and son. He is kind, strong, brave, and he still makes me laugh after almost 14 years.

I guess the lesson here is to be open. Open your heart to new people, new experiences, even if you’re not completely comfortable. Take a look at your existing relationships, too. Is there someone in your life whose differences you don’t fully appreciate? Whether it be a co-worker, a friend, a son, a daughter, a mother, father, your husband or wife celebrate the differences and try to love that person with new eyes today. I would have missed one of life’s greatest treasures in Bob if I hadn’t.

Dear Lord, help us to see with Your eyes today, eyes of unconditional love and compassion for others. Help us to see differences in people as opportunities for learning and growth. Help us discover the treasures of our relationships, rather than the hurdles. We ask this in Your Holy Name. Amen.

Posted in Inspiration, Life with CF

Control

Today’s Forecast: Restless

Control

Herculean effort, a war waged on

Like those before me, the heroes gone

My one desire, to live with grace

Despite the struggle, despite the pace

Intermittent, my strength does wane

Some days triumph and some days pain

Righteous celebration, silent contempt

Dueling emotions, no day exempt

Fitful sleep, I toss and turn

All the while my heart does yearn

For one decision that I can make

Instead of results I’m forced to take

My body fragile and not my own

A lack of control I’ve never known

I pray for peace and strength to fight

I pray I’ll see the morning’s light

I know not when the end will near

I tell myself, contend the fear

But to fear is human and to err is real

At least I can own what and when I feel

The quest continues, I forge ahead

Conjuring up spirit, instead of dread

No doubt will encounter more foul play

But thankful for what I feel today

~Jennifer Wuersig 2/22/11~

This is a poem I wrote back in February of last year when I was still in the throes of my sudden health decline with Cystic Fibrosis. Any of you that know me personally, know I am a complete control freak! I like to have things just so and I like to have a plan, ahead of time. It’s not so much that I have to control everyone else’s lives, but that I want to control mine, and with CF, it is a constant battle. This desire for power over my circumstances ultimately impacts my relationship with God too, because I have never been one for just trusting His plan, I have to work at it – really hard.  I constantly fight through how I think things should be and try to control the circumstances around me to make sure they get there. Again, not so easy a task when you’re battling a chronic illness that doesn’t give a care about what your plans are or where you need or want to be at a particular time. CF is just that way. It doesn’t care that you promised you’d take your daughter to the movies with her friend or that it’s family night at the school. It doesn’t care that you had a romantic, intimate overnight planned with your husband and that it’s your anniversary. It doesn’t care that you are co-chairing an event to raise money for it and you can’t be at the event because you’re stuck in a hospital bed. It doesn’t care that your husband is doing all the work and that the kids see him as the “go-to parent” because Mom’s just plain unreliable, it doesn’t care that you need to buy groceries, return library books, go to the bank. It doesn’t care that your family had a birthday lunch planned.

But I do.

I care so much sometimes it hurts. I know circumstances are bound to change; after all, change is the only constant, right? But… I don’t have to like it. I don’t like that CF can be so unpredictable. I don’t like that it interrupts my well-laid plans— all the time. What choice do I have though, honestly? I can spend my time expending energy on fighting the inevitable or I can spend it healing and living in the moment. I say that now, but don’t think for a second that I won’t jump back and forth over that fence at least a million times.

One of my absolute favorite bible passages is:

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

In times of anger and distrust, I often look to this passage for comfort and guidance. It helps me to remember that my limitations and my seemingly missed opportunities are all part of a bigger plan God had for me before I was even born. I also realize I do have control, control of how I choose to feel about my circumstances and control of whether I choose to trust God in his goodness to guide me through times of turmoil.

Are there areas of your life that feel out of your control? I think we all have them. A good friend recommended a book to me for people like you and me who are struggling with the surrender. It’s by Lisa Bevere and is called Out of Control and Loving It! I need all the encouragement I can get in this area, so I think it’s going to go on my Kindle wishlist. If you read it and like it, let me know. In the meantime, let go and let God. I’ll try to do the same.

Posted in Dealing with Trials, Life with CF

Living for today

TODAY’S FORECAST: FREE… (CLEARED TO DRIVE AGAIN AT MY SURGICAL CHECK-UP)

How many of you have seen the movie with Michelle Pfeiffer and Robert Redford called Up Close and Personal? It was released in the mid-90’s and is a great story about perseverance. Sally Ann ‘Tally’ Atwater (Michelle Pfeiffer) dreams of being a journalist and is mentored by Warren Justice (Robert Redford). Through a series of events, Tally reaches the national spotlight and she and Warren fall in love. Shortly after though, tragedy strikes and Tally’s world is changed forever.

Life is sometimes like Tally’s story. We persevere through hurdles in our lives just to get hit with another storm, and darn it, it is so frustrating! Then we get into this mindset of waiting for the next ball to drop instead of looking forward and being able to enjoy the blessings in our lives. I’ve gone through a bit of that the last couple years with my health. It seems like whenever we got over one new hurdle, another surfaced or maybe two or three. Whenever I would get a break, instead of looking for the positive; I’d be waiting for the next bad thing to happen because that was life as I knew it.

This past summer I had an extended break. I don’t know why or how, but my health stabilized to a point where I was feeling somewhat “normal” for a change. I wasn’t on IVs every two weeks, had managed to keep myself out of the hospital and while there were still challenges, I felt like I had reached a plateau. I had no surgeries scheduled until early fall and I was amazed at how one good day followed the next and so on. It was wonderful, and I’m so thankful Bob, the kids and I had that time to rest and recharge.

We went on vacation, a first in two years. I cooked dinners, went grocery shopping, had lunch with friends, unpacked our new house, went on school-shopping trips, hosted the kids’ friends for lunch and play dates, caught up with people I hadn’t seen, explored our new hometown – needless to say, it was a productive summer!

Still, in the back of my mind, there were days where I’d think, “Gee, things are going so well, when is the bottom going to drop out.” Then I came across this quote:

If you spend your whole life waiting for the storm, you’ll never enjoy the sunshine. – Morris West

It made me realize that I had so much to be thankful for in my life. I could live scared of the next catastrophe, or I could enjoy the blessings in the here and now. It is certainly easier said then done. There are still days I get so overwhelmed by life, but when I am, I think I am more cognizant now of getting back into the moment.

I’ll end today’s post  with a quote from two of my favorite fictional characters of all time. There is a simple lesson in their words, a pure and simple logic we should all subscribe to. If you’re going through a particular time of trial right now, take a deep breath. Then list all the blessings in your life. Until we get to heaven, there’s no day more perfect than today, so live it to the fullest.

“What day is it?”
“It’s today,” squeaked Piglet.
“My favorite day,” said Pooh.”
A.A. Milne

Posted in Dealing with Trials, Inspiration, Life with CF, Uncategorized

Blessings

TODAY’S FORECAST: MOTIVATED

‘Cause what if Your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You’re near

And what if trials of this life, are Your mercies in disguise.

~Laura Story – Blessings~

Hi everyone, hope you had a terrific weekend and THANK YOU for joining me for another post. I’m really excited by the response I’ve received so far, so thanks for all your support.  If this is your first visit to the blog, WELCOME! I hope you will regularly stop in and duck under my umbrella. Change is always guaranteed. 🙂

If you’ve read any of my previous posts, you already know that our family has had some pretty weighty circumstances in the last couple years; however, Bob and I are certainly no strangers to crisis. In the almost 14 years that we’ve been married we’ve dealt with more hurdles than I would have ever thought possible. Looking back, I’m still utterly amazed by God’s grace, because there is no other explanation in my mind for how we’ve survived. While my husband is definitely a super hero in my book, I don’t know if even Superman himself could muster that much superhuman strength and endurance.

Bob had a heart attack on the treadmill at age 36. He doesn’t smoke, exercises regularly and eats a healthy diet (well, at least most of the time). Genetics was a major factor, as we’ve seen both his parents and his late grandfather through heart attacks and bypass surgeries as well. My parents have also both had heart issues, my Dad has a stent and my mom had a virus attack her heart which causes it not to pump correctly. I joke with all of them that maybe we should look into a group rate for them at the cardiologist! My mom has had many intense surgeries including a hip replacement, a blocked carotid artery and a colon resection, the latter two, just last year. I have a dear friend who lost a family member to suicide and is still healing from that grief. Like many of you, we’ve watched family and friends alike battle all different kinds of cancers and disease.

Since Bob and I were married, I’ve had 17 surgeries or surgical procedures requiring anesthesia. (Imagine how much fun that information is to include on medical forms!)  A few months after we were married, I was stricken with my first serious bout of CF-related arthritis. I didn’t walk for two weeks. Both our kids were premature and I had to be on strict bed rest; 26 weeks collectively between both kids. With Jake, I spent eight of those weeks flat on my back in a hospital while Bob parented three-year old, Meghan, by himself. We’ve been through the deaths of four grandparents, various aunts and uncles and numerous others.

Our son Jake was born with severe food allergies and asthma. At 18 months Jake tested positive for allergies to milk, eggs, gluten, fish, shellfish, peanuts, tree nuts and lentils. Now we’re down to just tree nuts, peanuts, fish and shellfish, but feeding him in those early years was a huge challenge. Balancing the multiple diets in our household was next to impossible – allergen free, heart smart (low sodium and low-fat) and CF (high fat). Poor Meghan, she just wanted some “normal” food. 🙂

Add all that to the fact that I have a chronic illness, which brings its own set of daily challenges, and the financial crisis we encountered with our first builder (post: Temporary Home), and you get the perfect recipe for one heck of a pity-party. Believe me, I’ve been there, done that multiple times even though I continually vow I won’t. I can see God up there shaking His head at me, saying, “My dearest Jen, don’t make promises you can’t keep.” On so many countless times I’ve asked Him, “Why us? Why are You doing this to us?

During one of these self-pity moments, my sister-in-law (God bless her!) sent me the link to one of the most beautiful songs I’ve ever heard, “Blessings,” by Laura Story. The first time I listened to it I cried like a baby, and yet, it contained a message I so desperately needed to hear. All of us go through trials. Some may be epic or some may just be blips on the radar. Regardless, they wear on our hearts and challenge our faith. The next time that happens, listen to this song. It is my go-to comfort when disaster strikes. Through every storm it reminds me that there is a greater purpose for our suffering, even though I may not always understand it at the time.

Wishing you all smooth sailing this week, but remember, blessings sometimes come through pain. If that’s the case for you, know that I understand, as does the God who loves us all, even when we don’t think He cares.

Listen to Laura Story’s, “Blessings:

You Tube: http://youtu.be/GMeFzFUbmJo

Spotify: Laura Story – Blessings

Posted in Uncategorized

A day of rest

TODAY’S FORECAST: ACHY

So I guess I should have mentioned this in my previous posts, but Sunday will be my “day of rest” on the blog. Catch you all again on Monday. God Bless and easy breathing. 🙂

QUOTE FOR THE DAY:

Sometimes the most important thing in a whole day is the rest we take between two deep breaths, or the turning inwards in prayer for five short minutes.

Etty Hillesum