As we continue to celebrate the one year anniversary of Anthonys transplant, I will be posting details which I have yet to document. Read on to see how 2014 started for us: The eggs and sausage were ready, and the rolls in the oven almost done. Our traditional New Years Day breakfast...or rather, brunch...was close to being served. But it never made it to the table. The day before had been, as it always is, a busy one. Anthonys birthday and New Years Eve make for a full day of celebrating every year. This year was lunch at China King, Anthonys favorite; an afternoon Harry Potter birthday party complete with Honeydukes, a potions “lesson,” and homemade butterbeer; then later, our traditional “ring in the New Year” with friends. We all stayed up late watching Mary Poppins, skyping with family, and toasting each other with fancy glasses of sparkling grape juice. So much fun. But bedtime didnt come for any of us until the early hours of the morning. Maybe 2-ish, but probably closer to 3-ish. Staying up so late meant that our New Years morning started even later than usual. I remember waking early, but I returned to bed, feeling led to pray. Anthonys deteriorating health was, of course, constantly on my mind, and I had just heard about the serious illness of Jennings Neel, another child from our community. Despite the celebration of the day before, my heart was heavy that morning. Both for this other family now facing their own medical crisis and for our own. Mid-morning, though, I finally got up and started our traditional breakfast despite the dirty dishes which had piled up from our double celebration the day before. It would be a daunting task to get them all washed, but I assumed we would have plenty of time to tackle it later in the day. Little did I know that our friend Sibyl who, with her daughter Anna, had been with us New Years Eve, would be the one to clean up the mess for us. (And without a dishwasher, by the way. Thank you, again, friend.) I had just turned off the burner under the eggs when I heard the phone ring. For nearly fourteen months that phone had been like an extra limb. It went everywhere I went. But after so much time waiting for THE CALL, I no longer jumped every time it rang. And even the caller ID showing the name “Dallas Childrens” rarely caused me to flinch anymore. In fact, when I saw it was Childrens, I thought it was probably someone reporting results from the labs Anthony had drawn just a few days before. Probably just some medication adjustment. Looking back, I should have realized they probably wouldnt be calling me about that on a holiday, but it didnt occur to me at the time. As I reached to answer, I accidentally clicked the wrong button and disconnected the call instead of answering it. Oh my, Kaki. Really?! Now?! You hit the wrong button now?! On THIS call?! Of course, at the time, I didnt know... Thankfully, the phone rang again immediately. And I answered it properly. On the other end of the line, I heard the familiar voice of Susan, our transplant coordinator, greeting me in the usual way--”Would you please state the full name of your son? And his date of birth?” Then she asked, “So how is Anthony? Did he have a good birthday?” All so calm. All so normal. Just like any other call. Until... “Well, I have a birthday present for him. We have a heart.” A heart. A heart! Ok, so you would think, after all that time, after all those agonizing months of waiting, that upon finally hearing those words I feared we would never hear, I would exclaim something profound or beautiful or, at the very least, something positive, but instead I said: “NOOOOoooooo!” Yes. I said no. As if I didnt want it. Didnt desperately need it. Hadnt spent more than a year of my life pleading for it. But I know now that you cant script how you are going to react in that moment. And you certainly cant predict it. No matter how many times you dream about it, imagine it, and pray for it, you will never know how you will react until it actually happens. And for me, when it finally happened, all those feelings whirling around in the deepest part of my heart just poured out, unscripted, unrehearsed, completely without filter, and, condensed into just one word: NO!! Although it surprised even me at the time, I realize now that my “no” was simply an acknowledgment of my fears and the realization that it was time to face them. I truly was scared to death. Scared of this unknown pathway. Scared to put our son through more pain. Scared it wouldnt end well. Scared...well, you get the idea. After I uttered my one word reaction into the phone, I mouthed to Samantha and Abby, who were both nearby, the words, “There’s a heart!” Abbys scream from the kitchen was enough to cause Ray and Anthony to come running from the living room. Ray says he recognized immediately what was going on from the sound of Abbys scream; it was a scream like he had never heard before. Within seconds, the whole family was poised and ready for action while I finished my conversation with Susan, by this time with tears forming in my eyes. Next I asked what was a rather stupid question in light of the fact that Susan wouldnt have called me in the first place if the answer to my question had been “no,” but I asked it anyway-- “Is it a good one?” Again, one of my deepest fears put into words: What if we put him through all this and it isnt a good match? What if something is wrong with it? What if...? But Susan assured me, “Its good.” And that was enough. Thats all I needed to hear. No matter how hard and frightening the path, with this gift, Anthony finally had a chance at life, and it was time to get going and do what had to be done. So Susan and I spent the next few minutes discussing what should happen next: no food for Anthony, pack the van, get to Dallas. Simple. Not exactly. Part of the problem of being on the list for so long is that you begin to let your guard down. At the beginning, we were well-organized; the whole family was prepared to leave at a moments notice. For months, I had avoided getting behind on laundry and dish-washing tasks. The gas tank in the van was never allowed to go below half a tank. And a packed suitcase sat on the floor of our bedroom. I was even in the habit of swapping clothes out of the suitcase as the seasons changed. But after awhile, the busyness of life took its toll-- Laundry piled up. The toiletry bag was robbed of its shampoo and conditioner when we ran out in the shower. Clothing items were “borrowed” out of the suitcase and never replaced. Even after getting reorganized when Anthony was bumped from 1B to 1A on the list, we still weren’t as well prepared as we should have been. But we weren’t novices. After years of dropping everything and rushing to Dallas at the first sign of illness, we were--and still are--pros. I knew we were capable of getting packed and leaving quickly because we had done it before. Many, many times. So each of us, in our own ways, “kicked it into hospital mode.” Meaning: chaos ensued. I was still in the kitchen when I hung up the phone with Susan, and after a brief “pow-wow” with the family which consisted of more beautiful words befitting the occasion like, “Weve got to go!,” and “Hurry up!,” my hungry eyes looked longingly at the eggs and sausage still hot in the cast iron skillet on the stove. And then at those cinnamon and orange rolls which were finally ready. And oh, did they smell good... But if Anthony couldnt eat, then neither would we. Without a second thought, the eggs and sausage met the trash can and the rolls got shoved into the refrigerator in case Ray and the girls returned from Dallas before they started to go bad. Then I started grabbing clean laundry out of the dryer and throwing it into laundry baskets. Then I took all the dirty clothes out of our hampers and threw them into other laundry baskets. All later to be thrown into the van. I didnt have time to worry about whether or not we would be able to tell which was which when we got there. We could sort that out later. (At least I hoped we could!) Then, while Ray packed his bag and I tried to quickly reconstruct a nicely-filled toiletry bag which would address every possible need while we were away from home for three months, the girls had gone to their respective rooms to pack. Abby describes herself as being “in full panic mode,” frantically packing with tears streaming down her face. She may have been panicked, but she was efficient. I remember her being the first out of her room with a fully packed suitcase. Samantha, on the other hand, admits she stood in the center of her room for quite awhile, turning circles, muttering, “I dont know what to do...I dont know what to do,” over and over again. A momentary state of shock. She obviously recovered quickly enough, though, because she, too, emerged with a packed suitcase. In the meantime, Anthony had been instructed to take his respiratory meds, brush his teeth, and get dressed while we packed for him. Even though Anthony knew we had received an important call, Ray and I purposely avoided telling him explicitly that a heart had been found. After months of him fighting the idea of transplant, we werent really sure how he would react to the news, and we couldnt afford any delays. As it turned out, we neednt have worried. Anthony is a smart kid. He knew exactly what was going on. And he bravely did what was required. Despite the chaos of getting ready to leave, uninvited, but probably inevitable, thoughts entered my mind--thoughts about leaving home, the surgery, the donor, the donors family. And questions, too--Where did it happen? How did it happen? How old? Who...? Oh my. What a complicated dichotomy transplant is. One family making funeral arrangements. Another, travel arrangements. One family overcome with grief. The other, full of hope. An ending. A beginning. A loss. A gift. Death. Life. All tangled up in an agonizing, beautiful mess. And suddenly we were smack dab in the middle of it. But reflection would have to come later. Our focus had to remain on Anthony. And it was time to go.
Posted on: Fri, 02 Jan 2015 20:56:23 +0000
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