Dear Senator

Y'all. I can't even. Healthcare reform is slowly killing me. Half the time I can't bring myself to turn on the news and half the time I can't look away. I get a knot in my stomach every time I see an email from the CF Foundation urging me to contact my representatives about the dire impact the proposed healthcare legislation will have on the CF community. It is easy to feel insignificant, to feel like my voice can not possibly be heard in the current stream of continual political nonsense. This is a battle I did not ask for and do not feel equipped to fight. But Caleb is counting on me.

Here is the letter I wrote to my senator today:

June 13, 2017

Dear Senator,

I am writing to you today to express my concerns about the proposed healthcare legislation currently begin considered by the Senate. My concerns are many and very personal.

My seven year old son Caleb was diagnosed with cystic fibrosis when he was three weeks old. As you may know, CF is a genetic condition that affects several body systems and has a current life expectancy of forty-one years. In the 1950’s children born with CF were not expected to survive long enough to attend elementary school; now people with CF are living into adulthood, having families and careers of their own. These incredible improvements are the direct result of improved access to preventative care and cutting-edge therapies.

There are only 30,000 people currently living with cystic fibrosis in the United States. As you can imagine, the financial cost of keeping Caleb healthy is very high. In fact, without insurance, my husband and I would be completely unable to cover even one year of Caleb’s medical bills with all of the savings (including retirement) we have been able to accumulate since entering the workforce almost twenty years ago. Even basic preventative care for Caleb would be impossible outside of health insurance and one hospital stay, an inevitability in the lives of most with CF, would bankrupt us.

Caleb is currently very healthy and we have tremendous hope for his future. Without access to his daily medications and treatments, however, CF becomes a death sentence. While Caleb remains healthy, my husband and I can both continue to work and Caleb can attend school. Changes in his access to quality healthcare threaten more than just his health.

I will be honest, Senator; I am afraid. I can’t imagine knowing it is possible to extend and improve the quality of my child’s life and not be able to afford it. High-risk pools for the chronically ill are not the answer; even the most generous subsidies would not make the cost of Caleb’s medical care within our reach. Lifetime limits scare me to death and I hope we never go back to the dark days of pre-existing conditions.

My husband and I are both educated professionals, working hard to support the economy of this great state. We are conscientious in our decision-making, save for the future, and try very hard to “play by the rules”. We did not ask for our child to arrive with these special needs. We pray for a cure, and in the mean-time, we do all we can to keep Caleb healthy.

Please consider carefully the decisions you are making in the coming days. Your actions will have the greatest impact on your most vulnerable constituents. We have no way of protecting our son’s access to affordable, quality healthcare. For that, we are counting on you.

Sincerely,

Caleb’s Mom

An Open Letter to CF

Dear CF,

You suck.

I have never hated anything as much as I hate you.

You ruin everything. Planning a fun outing with the family? Not without worrying every second about the germs lurking on every surface, ready to send your precious one to the hospital.

Weekend getaway with couple-friends? Not without a midnight run to the 24-hour pharmacy for steroids to calm a tight, scary cough.

Fundraising event with fun friends on a holiday weekend? Sorry. You'll have to cancel that in the middle of the night. Instead, you'll be steaming up a bathroom and trying to breathe.

Hate hospitals? Well, you're going to spend a lot of time in them.... drawing blood, undergoing tests, sitting and waiting. And every time your kid sneezes, you'll worry that you're headed there for an extended stay.

Excited about starting Kindergarten? First family vacation to the beach? Invited to a birthday party? Holiday gatherings with friends and family? Want to play on the playground at Chick fil a like a normal kid?

Nope. Nope. Nope.

Instead, you threaten at every turn to choke us with fear. You conspire to keep us home-bound, terrified, and isolated. You steal, you kill, you destroy.

Well, I've had it with you. You are not welcome here. And I am going to do everything in my power to send you back to the pits of hell where you belong. One day very soon, you will join the list of diseases that once struck terror into the hearts of parents and now only whimper with remembered power.

With every breath in my body, I will fight the fear you delight in. I will instead look forward to the day when we, the CF Community, deal you a death-blow. Until that glorious day arrives, I will continue to stand back up when you've knocked me down. Bloodied and beaten, I will continue to fight. I will continue to make plans. I will continue to celebrate the milestones of life. I will NOT be conquered by you. I will NOT let you take control of our lives.

Your days are numbered, CF. We're taking you down.

Sincerely,

Caleb's Warrior Mom

A Life, in 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."