It's been a while since I have updated my Blog. I have updated Dan's CaringBridge. I have updated my Facebook. I have updated via e-mail. I have updated via text message, actual phone calls, and even face to face... But, my Blog. Well, it has been neglected and somewhat abandoned. My Blog is more like a time for reflection. And, I haven't wanted to reflect. I have only wanted to keep my head down and keep moving forward one step at a time. This morning, though, seemed like a time ripe with bloggable thoughts and opportunity to write. So, here I am.
Currently, Dan and I are sitting in USA Women and Children's in Mobile. Sarah was just discharged yesterday. The girls' lung functions had both dipped down, and Dr. Sindel deemed it necessary to get them both in, treat them with antibiotics, and make them well once and for all. Well, "once and for all" for now, anyway. There really is no such thing as "once and for all" with CF.
Lately, I have been in really a pretty good place... "Place" meaning that emotional, mental and spiritual place that isn't really a location at all, but is probably far more important to how well a person functions than any physical location could ever be. I took about three months after Dr. Hoover told us Dan would need a bi-lateral lung transplant to completely fall apart. I was basically just going through the motions of everything, and felt like I was walking around in a fog. We were still going back and forth to Birmingham regularly for Dan's hospitalizations, and she was SO sick. Much of the time, even though I never voiced the fear, I thought I was watching my child die before my eyes. And, I kept praying, and crying and pleading with God... Please. I'm not ready. I didn't count on this. It wasn't supposed to happen when she was only 17.
Further, I had helped care for my dad over the summer after his diagnosis of colon cancer. Dad died after Thanksgiving. My relationship with my dad was atypical, but sadness and loss hung over every aspect of life. I felt as if someone had turned me inside-out leaving my tissue and organs exposed to the elements. I hurt. And, I hurt all the time. And, I wasn't sure how to keep going.
I was also angry and driven by ten thousand forms of powerlessness. Our lives had been precariously balanced with treatments and therapies. For the girls' whole lives I had ensured treatments and medications were taken faithfully. We balanced that with extra curricular activities, school functions, family vacations, church and anything else people cram into a life together loving each other. And, everything was punctuated with hospitalizations and at-home I.V. meds. I did all the stuff. I was a good CF mom and I believed that my reward should be simple. My kids should live. And, they should live without a constant thought of dying. However, that was no longer the reality.
But then, time kept passing, and Dan kept living, and even though she was sick, I realized I was wasting time. I was wasting time being sad and sorry and begging God, so I had to shake myself or slap myself or something and get back to the business of living happily in this new reality of life. Dan was perfectly accepting of her medical situation, and approached everything with a completely positive outlook. I, however, had not fared so well. I burst into tears regularly, and friends weren't quite sure how to deal with me. In fact, many of my relationships changed signficantly too. My best friends couldn't make it better, so they stood by looking down at the ground and turning their toes in the sand. They were there whenever I couldn't get up off the closet floor, or when the oxygen bottles clanked together in the back of the car causing me to fall into hysterics. They were there when I was driving down the highway crying hysterically while listening to Bulgarian politics on public radio. But, no one knew how to comfort me, and my pain hurt them too.
So, the B team of friends took over. People I wasn't particularly close to, starting doing for me things I could not do for myself. And all of a sudden, the B Team was the A team, and I was left wondering, "What happened? Life is totally different." And, for a while, I was mourning. I was mourning all the change. My friends and family merged into one big team, and I am forever grateful for the support everyone has offered. Many of my support systems are different. My Weight Watchers meeting closed, my church closed, and my principal and friend got promoted. But, I've made peace with all of that. I'm adapting.
Now, it's June. It has been eight months. And, I feel better. I'm not the same. Not at all. But, I'm better. No longer do I hear The Script on the radio and burst into tears... "I'm still alive, but I'm barely breathing. Pray to a God that I don't believe in. Now I've got time while she's got freedom. When the heart breaks, no it don't break even.... I'm falling to pieces." The song is about a romantic break up, but when Danny O' Donoghue (lead singer) belted, "I'm falling to pieces," I was right there with him.
Everywhere we go, people stare. Sarah gets aggravated, but I don't mind. Dan doesn't seem to mind either. It is odd to see a beautiful, otherwise healthy young girl pulling an oxygen tank. We are thinking of having cards printed saying, "Give to the Cystic Fibrosis Foundation" to give to the people who really stare openly. But, no longer am I mourning the loss of my child before she is gone. I think the realization about what I was doing to myself came when I watched Jared Lawrence, Dan's prom date, back down the driveway with her perched on the front seat of his truck sporting her oxygen canula in a formal gown. Tears were streaming down my face as I thanked God that she made it. She made it to prom. And, as wonderful as that was, I thought of other families without kids with CF, who were perfectly healthy who had lost children in a tragic accident. Those parents did not get to watch their beautiful daughters going to Senior Prom. Those parents didn't have the opportunity before-hand to dread the death of their son or daughter. It was simply over. And, given that death has showed up simply hovering over our lives, it could be an opportunity. And opportunity to love more, to do everything, to live without regret... An opportunity that others don't always get. And, I wasn't going to waste another moment.
In that spirit, we are sneaking out of the hospital. Dan is waiting and Old Navy is having a sale on tank tops for $2.00 each. Life awaits. And, we will be living it wearing layered tanks with a smile on our faces, dragging an oxygen generator behind.
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