It has been such a long time since I have updated this blog. Between Caring Bridge, Facebook and my website, (which has also been woefully neglected), I have definitely dropped the ball here. I wonder how those stars who have all different types of accounts are keeping up with it all, because I sure don't have time to "Tweet" anything. They probably have an entourage of people to do that for them.
Still, here I am today on this quiet, rainy morning. Dave has headed out to do a Triathalon, and I am sitting on the couch, cozy and thoughtfully writing. For those who don't know, or those who have just stumbled across this site, my daughter, Danielle, received a double lung transplant on January 29 of this year. It has been only two months after that scary, miraculous surgery, and she is coming home! We are going to New Orleans this weekend to gather her things from the little apartment right beside Ochsner's where she has been living.
It has been a whirlwind of a ride that leaves me astounded, to say the least. Cystic Fibrosis always had its challenges. When Dan and Sarah were small, I struggled with the trials of daily life and chronic illness. Daily treatments and medicines interspersed with frequent doctor's appointments and occasional hospitalizations with traumatic procedures left me with a roller coaster of emotions. But, what is that old saying? "Yard by yard is too hard. Inch by inch, it's a cinch."
Danielle's senior year, though, things took a drastic turn and Cystic Fibrosis became something more menacing and scary than it had been before. It turned from something we coped with, to a life-threatening illness. Dan's lung functions took a steady downward spiral as she was infected with one illness after another and her lungs began failing. I watched helplessly and cried constantly, feeling like my life had been turned upside down. Any mental vision I had for my child's future was shattered and replaced with a gnawing fear that pursued me relentlessly, and life became simply a matter of putting one foot in front of the other.
Living with CF, and having two children with CF, requires a certain ability to live in denial. I realize I am gifted in this capacity. But, is it really denial, or is it a sense of eternal optimism? Am I in denial, or do I have a child-like faith that God will see me through? Regardless of what you call it, I walked around believing it wouldn't happen to us. My girls would be the ones who lived well into middle age before CF began taking its toll. The statistics wouldn't touch my family.
Math has always been my nemesis, though, and we became one of the n. Because I am a teacher, and because I am also a perpetual student, I ravenously read articles and studies about CF, so I knew the statistics. If you had asked me when the girls were younger, I would have quoted the mean life expectancy for CF patients to whatever unsuspecting soul inquired, and upon seeing the look of horror that erupted on their faces at hearing that CF patients generally live into their 30's, I would shrug and say, "Well, that is the average. I fully expect my girls to live a long, healthy life, and they are working constantly on advancements for CF."
And, then because of my denial, or eternal optimism, I would mentally file all of those statistics and horrible outcomes under the category of "Stuff That Happens to Other CF Families Besides Mine". It was only when I began lugging oxygen around life became a series of hospitalizations running together that CF became less of a simple aggravation and more of a scary force with which to be reckoned.
I began thinking about all of this last night when I went out to dinner with some friends. The topic drifted to the miracle of Dan's transplant and a friend innocently asked, "So, what do the doctor's say about how long Dan has to live now?" And, again, I'm stuck with offering the statistical answer. The mean life expectancy for lung transplant patients is 5 years. But, again, that is the mean. Many patients have lived even up to 25 years after transplant. Still, when I told my friend the average life expectancy, she looked as if I had slapped her and stammered, "But, I thought... I thought she was going to be O.K."
So, I just smiled and said, "Well, I believe that she is going to be O.K. Lots of patients live long, healthy lives after transplant." She will have to take anti-rejection drugs and be careful about things that most people never have to consider, but she is O.K. She has a chance to live. Which, I guess, is really all any of us have. No one is guaranteed a certain amount of time on this earth.
Then she asked the other hard question, "How do you do this?" There is no simple answer, but I do have a toolbox of things I use to make life manageable and even embrace moments of sheer joy. I use the tool of denial. It isn't the unhealthy "stick my head in the sand" kind of denial, but more of a belief that God has a greater plan for my family, so Dan will live a happy, strong life with her new lungs so unselfishly given to her by her wonderful donor.
I use the tool of hope. Every day, I wake up with hope for the day and hope for the future. People ask about Sarah, my 16-year-old with CF, and what can I say except we have hope? Dan's transplant experience has offered hope for Sarah. Do I hope she doesn't have to experience the same thing Dan did with lung failure during her Senior year of high school? Absolutely. But, do I have hope that if she does, we will be granted the tools to handle it? Yes.
I use the tool of community. Friends and family, acquaintances and strangers swoop in to help when I need it. They help with mental, physical, emotional, spiritual and even financial help. I have learned to put aside my pride, and allow people to love me. And, hopefully, we are both blessed.
I use the tool of gratitude. I walk around with a greater sense of gratitude for everything life has to offer. Life looks more wonderful, more colorful and more delightful when a dark shadow of death hovers around. The truth is, that shadow hovers over everyone. It's just that we have been blessed with the opportunity to acknowledge death's lurking presence in our lives. By nodding to the darkness, the light is oh so much brighter. And, I am grateful for every single moment that life has to offer.
I use the tool of faith. Despite the constant, nagging fear I lived with for two years, and the desperate period of mourning that clouded my life when I had to let go of the vision I held for so many years, I have a deep and abiding faith that tells me God is Good all the time. I have experienced love and goodness beyond measure. And, I have no reason to believe God will greet me with anything other than blessings, because unlike people who are granted the challenge of having to go on blind faith, I have been offered real experiences of Divine Love manifesting in my life. Proof of a living God. Proof of Christ in action through others. Proof of God's peace flowing in and through every single fiber of my being. So, mine is not a blind faith. Mine is the faith of experience. Faith in a God who loves my family beyond measure.
Beyond all of these though, I use the tool of love. There are times when I am tired and worn down. Negative thoughts and "why me's" sometimes nest in my brain. However, just like Emmet Fox said, "It makes no difference how deeply seated may be the trouble, how hopeless the outlook how muddled the tangle, how great the mistake. A sufficient realization of love will dissolve it all." Loving people with all their flaws and annoying shortcomings seems to make everything O.K. And, accepting the love of other people, no matter how meager the offering of love, allows a richness to permeate every aspect of my life, making it impossible to stay mired in the negativity for very long.
For each of you today, I hope you feel loved and guided. I hope you know that God wants only goodness and blessings for you. I hope you know that hope abounds. I wish you peace and joy in the midst of whatever circumstances greet you today.