Cystic Fibrosis – Long walks and dark chocolate

Thoughts on a summer day

July 14, 2018 5 Comments

Feet planted in a little green pool painted to resemble a watermelon, I’m thankful for the cool water while sitting on a scorching hot back deck. I silently wonder how long my feet will be safe from toddler pee or if they have already been contaminated. Considering I just polished off a blackberry after she licked it and offered it to me, I suppose I will live.

The cardinal showing off his vivid red coat on the fence post looks as if he would love to join Cali in the little pool for a midday bath, but he is staying out of reach. Smart guy because I am positive he would get more than he bargained for.

Cali, sitting in the shade of her umbrella, is oblivious to the cardinal and seemingly to the heat as well as she munches on blackberries and strawberries and repeatedly dumps water from one bucket to another while singing bits and pieces of “head, shoulders knees and toes”.

I am thankful for my day out shopping, the mani-pedi and a long lunch with two of my favorite people. I was anxious to get home and babysit this little rascal though tonight after my errands were complete. With Cali and her mommy living back at home, that means I am the primary baby sitter when Morgan works. Sometimes, Nana gets a little tired.

We were empty-nesters for a couple of years and I got quite used to my free time. Time to read or write for hours without interruption. Time to take a long nap on a Saturday without a little munchkin banging on my door. Yes, there are times I long for more solitude.

At these times, however, God always reminds me of my prayers to Him when we didn’t know if Cali would make it. Those long drives to and from Miami filled with fears and tears and prayer. The months in ICU, the surgery days, the ups and downs.

I’m reminded once again that life is a journey. We travel through seasons with all kinds of weather. The seasons will never cease, but we can learn to face them with His strength and grace. He is our great Help and Comforter.

It is how we handle the journey, it’s our attitude while we walk it out, it’s our abiding in His sweet vine. Don’t kid yourself into thinking that the next big milestone is the destination, that once that “thing” happens you will forever by happy or you will have finally made it. There is always something (good and bad) around the corner as long as we walk this earth. If you acknowledge this, it makes the unknowns a little less intimidating.

Take joy in moments, learn to find the lessons in the trails, look for God’s plan in the middle of your messes, be grateful and find your peace and rest in Him.

Blessings,

Lisa

Filed Under: Christian, Inspirational, Uncategorized Tagged With: Cystic Fibrosis, God, grandchildren, grandparents, journey, joy, life, Prayer

The other side of the fog

December 11, 2016 1 Comment

Sunday morning Word

This morning I was studying the story of Joseph from his coat of many colors and the telling of his prophetic dreams, to the jealous brothers casting him into a pit, and then selling him into slavery. But all along God had a plan and He positioned Joseph to save Egypt and Canaan from famine. A good outcome didn’t look possible to the human eye, guided by the flesh.

I was reminded of one of my recent trips to Miami to be supportive to my youngest daughter and visit my almost 8 month old granddaughter, struggling with an infection in her lungs. Since her diagnosis of Cystic Fibrosis, she has fought and won many battles in the short time she has been around to bless us. I attribute this to many prayers.

On the particular morning, the fog was thick and blanketed everything for miles. My travelling progress was impeded as I slowly navigated my way through the unknown. Visibility was limited, and I found myself a little nervous because I couldn’t see the cars coming toward me from miles away and I was unsure of what was creeping up behind me until the headlights broke through the fog. I found myself focusing on the fog and its dangers, ready for the sun to break through and begin to burn it all away.

I felt the stirring of the Holy Spirit as I realized that once again, God was trying to teach me something. You know, if we slow down and pay attention long enough, we can hear that still small voice.

Such is life. In this journey through the vast unknowns with Cali, I know that on the other side of it, there is clarity. I cannot begin to figure it all out now, to predict what is coming or to visualize the hidden hazards along the way. I can apply this to so many situations in life; those where I can barely navigate on a daily basis, much less discern the outcome.

But, this I do know; on the other side of the fog, there is a Son and He always burns for me. His will may not be understandable at times, the outcome may not always make sense to me, but I will continue to live in the knowledge that He wants the best for me. In the midst of a broken, fallen world, He is my hope, my strength and my refuge.

Remember, it was never God’s intention that we live in a broken, fallen world that is filled with sin and hurt and hate. And, He loved us enough to send His Son, to give us a chance at redemption, restoration and an eternal life, a life much more important than the short one we will live out on this earth.

Filed Under: Christian, Inspirational, Uncategorized Tagged With: babies, Cali, CF, children, Cystic Fibrosis, God, grandchildren, Jesus, Religion & Spirituality

One of the best days

September 26, 2016 10 Comments

14333016_298730933833087_5619537209019762505_n Thursday, September 22^nd, 4:22am – The bright lights on my bedside clock confirm that I am up way too early for a day that I don’t have to work. As I often do upon awakening, I let the fog dissipate for a moment and realize why I am off today. Today is the big DAY, the day we have prayed and believed for, for over five months now. Barring any complications, you are busting out of Nicklaus Children’s Hospital for your long anticipated homecoming! Of course after I remember all of this, there is no way I will be going back to sleep, work or not. I might as well enjoy my favorite time of the day.

Teeth brushed, I meander to the kitchen and get a cup brewing and moments later, warm cup in hand, I settle into my chair, careful to find glasses first and crank up heating pad. My tummy is full of butterflies as I being to pray and thank God for this day and your continued progress.

Nervous energy continues as I text a few close friends and family members. I am having trouble deciding what to do next. Do I go to town and buy balloons and food first? Do I go down to your house and do some cleaning and finish organizing your room and hang the “Welcome Home” banner?

Mommy spent the night with you last night and when she facetimes me, Nana realized you are not a morning person yet. We will see what we can do about that. I wonder how you felt last night with Mommy in the same room, right beside you all night for the first time since you were delivered on April 13^th. I know Mommy was thrilled and so excited it was hard to sleep.

Nana is so emotional today and I heard that your Grammy is too. I think of your sweet face all situated in your car seat, or imagine the goodbyes of the doctors and nurses that have taken such good care of you, or what you will think of sunlight and grass and flowers and how mom and dad will feel driving away with you settled securely in the car with them, and I cry.

I remember the beginning of your journey and your tiny body being wheeled away and loaded into a helicopter and friends and family holding hands in a circle and praying and I cry again.

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I think about the surgeries and the complications and the good days and bad days and the crazy roller coaster ride of the past few months. Emotional doesn’t even seem to describe it, I feel overwhelmed with joy and thanks. I feel like dancing and singing and doing cartwheels, all while praising God. So I do all of these things, except the cartwheels. I do want to be here well and uninjured when you arrive.

Throughout the day, Mommy calls and Nana helps her call pediatricians; we have to find one that can get you in on Monday in order for you to be released. What a feat, but it’s done. We will do anything to get you home!

After going to town and getting a Welcome Home cake that you can’t even eat yet, Nana arrives at your house to finish what Mommy had started in your room. Did you know that you have been so blessed by friends and family that you have too many clothes and shoes and bows? Nana spends a lot of time just looking at all of your cute stuff.

Oh Cali, you are so loved! People follow the reports on your progress and pray for you daily. They have been more than generous with donations to help mom and dad spend more time with you and pay for gas and hotels and food. They have offered words of hope and advice and encouragement to all of us who call you our own. We have been abundantly blessed and we are all so overwhelmed and grateful.

As the last ray of the afternoon sun casts a warm glow through your bedroom window, I got the text I had been dying for all day long; you were on your way! Mommy posted a picture on Facebook of you nestled in your car seat with a big smile so she could share the news with all of the people who love you. You looked like you knew exactly what was going on.

After that, the hardest part of the day began; the waiting. Nana paced and checked my phone over and over again for the latest report of where you were on your journey. Mommy and Daddy hit the 5 o’clock Miami traffic and then had to stop and feed you along the way. Oh, would you ever arrive?

When Papa and I got the message that you were close, we went outside to wait on the porch. My stomach did flip flops when I saw the headlights come around the corner. You were finally home! Papa was concerned you might get a bug bite so he reminded your daddy to rush you up the stairs. The time had finally arrived and not one moment too soon.

We were all exhausted at the end of the day, but it was a good kind of tired and our hearts were filled with joy. We are anxious to watch you grow and learn and thrive. Cali girl, you are our little miracle and such a strong little girl. We love you ❤