Thursday, December 25, 2014

A Life, in Far Too Few Words

"The most important things are the hardest to say, because words diminish them." -Stephen King

My grandfather died on Sunday afternoon.

Although I understand that death is a natural part of life, and I know he was very sick, and I know he lived a long and full life, it still doesn't seem possible that he is gone.

My grandfather was the godliest man I have ever known. He read his Bible every day, without fail, sometimes for multiple hours. He loved Jesus more than anything and he talked of little else. He was deeply concerned about the spiritual condition of every person he met. His prayer life can only be described as a continual conversation with his Savior. He carried every sorrow, every worry, every doubt, and every fear to the Lord. In humble gratitude, he lifted praises to God for every provision, no matter how small.

Loyal and dependable, quiet and humble, my grandfather faithfully provided for his family in every phase of his life. He and my grandmother were married an incredible 68 years this past March. A model of true love and commitment, they weathered the storms of life together. Each one of us has benefited from the example of family life they set. In his daily prayers he called the name of every child, every grandchild, and every great-grandchild. Long before I even knew what a prayer warrior was, I had one interceding for me.

Words are not adequate to describe the man he was. Everything to him was an act of worship. His love for humankind was evident in every conversation and people were drawn to the love of Christ they felt through his words and actions. When in good health, he humbly served the "least of these" without a desire for recognition. The church was his second home, and he could often be found there, quietly serving the body of Christ. As his health declined, he continued to serve others through his kind and gentle ways. He made an impression on everyone he met.

His pastor summed it up perfectly during the funeral service. "Roy Gilbert set an example we should all follow." High praise, indeed.

As soon as I heard the news of his passing, my eyes filled with tears. Not tears of sadness, although they would certainly come later. My initial emotion was joy. My grandfather spent his entire life looking forward to the day he would meet his Savior face to face. The realization that he was even in that moment reuniting with family and friends who have gone before him brought precious comfort to my grieving heart. He ran his race; he fought the good fight. I can only imagine the joy my sweet grandfather experienced as he heard the words he had so longed to hear, "well done, my good and faithful servant."

What a bittersweet time this is to lose a loved one. As we said a final farewell on Christmas Eve, I thought of future Christmases when we will remember these difficult days. I am so grateful to know that my grandfather is at peace, eternally resting in the everlasting arms of our Savior. I am grateful to know I will see him again. His legacy lives on in his family, his friends, in me. In reflecting on his life, I am inspired to more faithfully follow his example. As long as I am on this earth, I will try each day to proclaim the truth of God's love through my actions and my words. And when this life is through, I will once again hug my grandfather's neck and hear him say, "welcome home."

Thursday, October 2, 2014

Sweet Relief

Praise the Lord, Caleb's chest x-ray today has shown no change from the one we did in April! We will not have to add another daily breathing treatment at this time. What a relief! We won't know the results of today's throat culture and blood work for several more days, but those are "routine" tests and should (hopefully) come back fine.

You would think by now I would be used to the exhaustion that follows these visits. I have lived with extra adrenaline pumping through my body for days now, trying to stay "in the moment" and not worry about things I can't control. Now that the moment has passed, and especially with the great news we got today, I feel like I could lay down and sleep for days.

Thank you, family and friends, for your constant love and support. Your prayers are felt and greatly appreciated. I am always overwhelmed by your outpouring of empathy during these stressful times, and this week has been no different. I am so grateful to each of you for your encouragement. Your kind words fill my cup when it runs dry.

Thursday, September 25, 2014

When I don't know what to pray...

Next week is Caleb's quarterly clinic appointment and follow-up chest x-ray. He will also have his annual blood work drawn. I am always a little (or a lot) nervous before these appointments, because they are often anything but routine. How many times have I been sitting in one of those tiny rooms, receiving news I was not prepared for? Too many to count. It's enough to make me a little "gun-shy."

I am particularly anxious about this visit. Caleb's last chest x-ray showed potential evidence of disease progression, and if this x-ray looks the same (or worse), we will add a new "for the rest of his life or until the cure arrives" daily breathing treatment. If he needs it, I want him to have it. But I really don't want him to need it.

Caleb started preschool just after Labor Day and he absolutely LOVES it. He comes home singing songs he learned and is mastering new skills on a daily basis. He has also been sick or on antibiotics for the entire four weeks he's been in school. I am hopeful that this is just an adjustment period, but I can't help worrying that we'll end up in the hospital and trying to figure out "Plan B."

I have been waking up around 2:00 am for several nights now. Lying awake in the middle of the night gives one plenty of time to think, to worry, to pray. But lately, when I try to find specific words to pray, I am at a loss. I don't know exactly what to pray for. I know that sounds stupid - of course I want Caleb to be healthy and safe. But all I can seem to get out these days is, "Lord, help!"

I keep thinking, "Be still and know that I am God." Those were the first words that flew through my brain upon hearing that Caleb has CF. Are they coming back up for me now because the Lord is preparing my heart for another big change? If I'm honest, I really hope not. But ultimately, this is His story that is unfolding, not mine.

I am really struggling right now and could use your prayers. I have no specific requests; I just know we need all you can give.

Friday, April 18, 2014

Results

As is often the case in life, the things you aren't at all worried about are the things that reach out and smack you down when you least expect it. I was worried about the results of Caleb's sweat test. Even though the results were not what we hoped for (30 units higher than the original test, now well into the clinical range), I absorbed, recalibrated, and resumed "business as usual" with relative ease.

I was not expecting another call from the CF Care Center today. I was not expecting to hear the voice of Caleb's doctor. I was not expecting to feel my stomach fall into my feet and my heart lodge in my throat while still trying to maintain my composure. I was not expecting to hear bad news; I thought that part was over. Turns out, I was wrong.

Caleb's chest x-ray from yesterday shows a very slight thickening in the areas between his airways, called "interstitial space." This thickening can be an indicator of inflammation in the lungs and can be a precursor to bronchiectisis (the permanent damaging of airways due to the build-up of mucous and the stretching of the airways). Fortunately, the change in his lungs from last year's x-ray is very slight. It is possible to reverse these effects with proper treatment and airway clearance. Because we just increased his vest time, and we're already doing Pulmozyme daily, we are going to "keep doing what we're doing", watch him very closely, and re-do the x-ray in six months. If there is no improvement, then we will add hypertonic saline to our daily inhaled treatments.

I have learned in these moments to count my blessings. When darkness threatens to overwhelm, I choose to search for the light. It is always there. Once again, I am so very grateful for our CF Care Center. Knowing what we are dealing with so we can address it proactively is invaluable. Our wonderful doctor spent a solid 20 minutes answering my questions and helped calm my anxious heart. I know Caleb is in good hands.

I am so grateful for the work of the CF Foundation and the generosity of its many financial supporters. Today I feel almost desperate for a cure, and I know that critical research is taking place even now that will one day help save Caleb's life. My heart is full of hope because of the dedication of these doctors, scientists, patients, family members, and volunteers.

I am grateful that in the midst of a storm, my faith in the goodness of God is a solid rock upon which I can take refuge. He is for us, he fights with us,  he loves us. He will sustain us and he will deliver us. When I cannot understand, I can trust. That is a gift beyond measure. The Lord affords me grace for the moment, and it is always enough.

I ask for your continued prayers. First, that the thickening in Caleb's lungs will be completely gone before our next x-ray. Second, that Caleb will stay healthy over the summer and as he starts preschool in the fall. Third, that I will not be conquered by my fear for his well-being, and that I will be able to maintain a positive outlook and a spirit of gratitude.

I treasure your words of encouragement; they help sustain me when my cup runs dry.



Wednesday, April 16, 2014

Reliving the Past

While I don't remember a lot of details surrounding the first few months of Caleb's life, there are a few events that are etched into my memory with perfect clarity. Touching on those moments can bring up vivid recollections and strong emotions, both positive and negative. I rarely dwell on those moments because in reliving them, I am pulled into an emotional vortex from which it is difficult to recover. I love to tell "our story" but there are parts I still skip because the emotion is just too raw.

One of these moments is the day of Caleb's sweat test. The sweat test is just that - a test of how much salt is in a person's sweat. This is the hallmark test for CF and it was the most reliable diagnostic tool for decades before the identification of genes that cause CF. It is still valuable information in that a person's sweat chloride level can somewhat predict the severity of the CF. This is a gross over-simplification, but it is my understanding that in general, the higher the number, the more severe the CF symptoms.

Caleb's sweat test took place when he was four weeks old in the lab at Egleston, a children's hospital in Atlanta. I think my mom was there with me, but to be honest, I'm not really sure. I do remember the terror I felt, not knowing what the test would entail, wondering what the results would be, clueless as to how to raise a child I might someday have to bury. I remember the nurses had to repeat instructions to me. I remember my body still ached from recent birth. I remember the hum of the fluorescent lights and praying to God the scream that was stuck in my throat didn't escape. I watched the nurses wrap my newborn in blanket after blanket, his little face turning red as he started to sweat. I remember wanting to cry but being afraid to let the tears come. I was afraid they would never stop.

Results showed Caleb's sweat chloride levels at just below the clinical range. I clung to these numbers as proof that he would be ok. He would be healthy. He would live a long and full life. These numbers formed the foundation of what would become a carefully-constructed narrative I lived by in the coming months. At times I felt like my grip on sanity was tenuous at best. But as time went by and we more fully educated ourselves about the exciting developments in the world of CF, hope reappeared. Life went on. We fully embraced our new "normal" and found that even though so much had changed, so much could still be the same. We found ways of making meaningful contributions to the search for a cure, and we learned how to turn our fear into relevant action.

Tomorrow morning we are repeating Caleb's sweat test. Best practice is to repeat the test after six months of age; apparently results in early infancy can be inaccurate. We know that Caleb has CF because of the results of genetic testing. That fact is not in question. But it feels like the foundation of my hopeful outlook is being threatened and that terrifies me. Whatever the results, we will deal with it and move on. Lord willing, the numbers will be lower than before.

I am reminded how quickly life can change, and how the results of a single test can turn your life inside-out. I am remembering a lot of things I would much rather forget. I need strength for the day. I need your prayers. Please remember us tomorrow morning.

Tuesday, March 11, 2014

Splashes of Glory

The winter months can be hard for me. After the hoopla of the holidays is over, it often seems like a long, slow climb to spring. Cold weather keeps us indoors and the ever-present fear of sickness keeps us at home. As the months wear on, I start to feel forlorn and pensive. The inactivity lends itself to reflection as thoughts turn inward.  Everything in me wants to hibernate as I trudge through the monotony of the day-to-day, and I long for something to change.

One particularly cold morning, not too long ago, I stood at the kitchen sink looking out into the woods behind our house. I was feeling pretty ho-hum about the day, completely oblivious to the beauty of the winter scene before me. Out of nowhere a bright red cardinal landed in the barren branches and the intense contrast of the scene took my breath away. It was an instant reminder of just how beautiful, how blessed my life is. It shook me out of my doldrums and brought a grateful tear to my eye. In an instant, my whole outlook changed. It was as if God winked at me.



I have recently been reminded in a very big way how intimately God is involved in our daily lives. At times it feels like He is turning a blind eye to our fervent requests and our prayers go unanswered. We feel frustrated, ignored, unimportant. We feel small and insignificant. We may even decide our prayers are without value and stop praying altogether. And then, with almost no warning, He gives us the desire of our heart and we are left breathless with the wonder of his tender care of us. We see the careful preparation of his perfect plan in hindsight and we are humbled by our lack of faith in his timing. In these moments I swear to myself that I will never again doubt Him, that I will have perfect trust from now on. I will stop worrying about the future and instead rest in the assurance that The Lord is already in tomorrow. My faith stretches and grows in these moments and even though my fragile human nature fails time and again, I am strengthened and renewed by these "splashes of glory."

Saturday, March 8, 2014

All Aboard for "Cure Found"!

As many of you know, the search for a cure for Cystic Fibrosis is very close to my heart. As a mom, the hardest part is not knowing what is going on inside my son's little body until it is already causing problems. CF is a vicious, sneaky, unrelenting disease. But with your support, we CAN find a cure.

This past year has been full of many exciting milestone moments. Caleb graduated to a "big boy bed" and said goodbye to diapers and his beloved paci. His baby gibberish has turned into full paragraphs of why he should always get what he wants... and right NOW. He is growing like a weed and always full of energy, even when the adults are worn out. He still loves his trains, but now he can operate them with the precision of a pro. He is such a fun little boy, full of life and mischief. When he flashes that devilish grin and arches his eyebrow, you can't help but laugh.



We have also had some hard realities to face this year. In February of 2013, Caleb's doctor moved out of state and we began the difficult task of building trust with new doctors. Caleb started using Pulmozyme daily in March, a life-long breathing treatment we thought wouldn't begin until he was at least five. Phase 3 results of the clinical trial for Kalydeco on R117h (one of Caleb's mutations) were not as positive as we had hoped, and it looks like Caleb will not benefit from this drug after all, at least not anytime soon. Caleb's most recent illness brought with it the very real possibility of a hospital stay. Although he is doing well now, that was the the scariest experience we've had so far.

Still, there is so much to be grateful for. The CF Foundation continues to provide critical financial support to those who are searching for a cure for CF. So many life-saving breakthroughs have happened in the last handful of years - thanks in large part to donors and supporters like you. I hope you will join us in the fight against this terrible disease.

This year, Caleb's Conductors will be walking in the Atlanta Great Strides event on May 17th. Here are a few ways you can help support our team:

Donations are always appreciated, are tax-deductible, and can be made through our Great Strides team webpage. You can also spread the word to your friends and family by sharing this blog post with your entire email address book or on your Facebook page. We'd love for you to join our team and come walk with us on May 17th at the Georgia Tech Campus! Whatever you choose to do, know that you have my deepest gratitude. Not a day goes by that I don't wish, hope, dream, and yearn for a cure for CF.

Thank you for your many prayers, your love, and your support. It means more to me than mere words can say!




Thankful

Dear Senator Collins (and McCain), My seven year old son Caleb has cystic fibrosis and I want to THANK YOU from the bottom of my heart for...