It was Wednesday November 30 and Danny and I were preparing for our monthly Hopkins check-in. This would be the first appointment we would attend officially listed (Side note: we thought officially listed….since Dan had said he agreed to list Monday, November 28 we were pretty sure he was on there – but no one had said anything. Either way we figured we would just ask when we got there…turns out, he was listed). It felt different since the new chapter was officially beginning. Initially I was looking forward to this visit. Finally we had made a choice and it was the decision our team felt we needed to make. Being the a-type, first child, people pleaser that I am – I was actually really excited to be going up there when we had taken their advice. I was certain this appointment would feel right – a collective “ahhhh” would fill the room. We had made a decision… we had heeded their counsel… we were on our way!
As that feeling faded there was another one lurking right around the corner: this is the new chapter. In preparing to list we were reminded over and over again how long, scary, frustrating, and exhausting this process would be. There would be a high from making a decision, but it was likely to be followed by a pretty big low: waiting. Danny had committed, held up his end of the deal, was ready – but there was no telling when the other half of the equation would pop up. For a few weeks we would be anxious and a little scared, but that can quickly fade to fear lungs won’t come, anger for having to wait, sadness about needing another to die for Danny to live, and frustration around wanting a particular plan to be put into place, but no ounce of control for how it would come together. I distinctly remember telling myself to begin practicing patience by learning to push emotions and feelings aside in an effort to just relax. Nothing we say or do can change what will be, so this is gonna have to be a pretty incredible exercise in faith. And we knew this was likely the first of just many similar visits.
It seemed both Danny and I had that sense of eagerness for stepping foot into that office without fear of having to make a decision, but also trepidation for really taking those first few steps into our new life. In an effort to focus on the hear and now we decided this appointment would be fairly straightforward- we had finally done what they wanted us to do – and so we should find a way to make the rest of a “freebie” day (I am out of the office) fun! The next day would be December 1 and it hit us – let’s get our Christmas tree! Most years we are pretty late to get our tree and often due to illness setbacks, so why not jump the gun and get it a little early. The only disappointing thing was the day was unseasonably warm and rainy. Sort of an odd day to get a Christmas tree, but whatever: we don’t know what tomorrow holds so let’s just do it!
We started that morning off a little slower -we didn’t have to be there until a little later than normal so I took my time getting up and we even lounged a little too long. Suddenly I had one of those moments that I looked at the clock and realized for a day we had started out ahead of the game, now I was gonna be late. As I raced up to the shower, I contemplated on how all of our plan making to try and just enjoy the day and ignore what felt like an elephant not only in the room, but planning to take the ride with us, was getting bigger with the stress of not being on time. For those of you who know me… the showering and hair straightening, and outfit picking and shoe matching and jewelry adorning is not a slow process. In fact as I tried to lather up efficiently I actually thought to myself, I need to probably get a little better at this whole getting ready thing. If we got the call right this second and had to drop everything, what could I skip to get out the door faster? Would I be frustrated that I only got half a shower when I would likely be living without a shower for a few days of hospital life? Or would we try and do the pre-hospital things we normally do before a stay to feel ready to be in a hospital: shower, pack up some entertainment, look for our coziest sweats and PJs. It was in that moment I made the mental note: I really need to get ahead of laundry, clean up my toiletries, make a “go time” list so I can be ready….. I will definitely do that this weekend.
As I stepped out of the shower and peered out to our clock I saw about 20 minutes until we have to go! Dang it!! I always like to take extra care in getting ready before transplant meetings. I know, I know – that has NOTHING to do with anything (in fact Danny has teased me that if I don’t have the right hair, we likely won’t be chosen for organs), but it has been something I always have done, even back in Chapel Hill days. If I have a big work meeting, or a fancy night planned, how I prepare is to look my best: it makes me feel confident, assertive, and calmer. Why not treat the most important meetings of our life the same way? But this morning I had a choice, care about my looks or just get done quick and keep the stress down. Besides – if I go with wet hair who cares? We will just have another appointment a few weeks later! In fact we will be home in a few hours, I won’t worry about the perfect make up, instead I will just take it with me to do between meetings. Today is all about zen and assuring I help Dan feel calm and supported. With this in mind, I traded my lengthy getting ready process to walk the dog. Danny appreciated it – as the rain came pouring down- and he still needed a quick rinse (were we perhaps avoiding leaving??). So I threw on my rain coat, said forget it to the umbrella – my hair looks like a wet rat anyway who cares!?!? – marveled at this new relaxed Jackie and called for Q!
It was raining and our little dog had no interest in the great outdoors. This chore was really a nice offer to make since whoever had to complete the walk would be wrestling him out the door and then have to drag him through the puddles to his spot. In fact I not only was proud of my go with the flow, I was feeling like a pretty dang good person – taking that dog out in the wet and all. As I finally got us suited up to go I heard Dan’s cell phone ring. By the time I found it the screen displayed missed call and I noticed that it was a Baltimore number. Thinking I was holding up my end of the deal so well – managing our pup – I shouted up the stairs to Dan in the type of sass only a wife can muster: “you missed a call, and we weren’t gonna do that anymore, remember? Oh and its from Baltimore”, to point out his slacking on his end of the deal. And with that pup and I proceed out the door.
As I trudged up our sidewalk in the rain I thought how unfair that was… we could have months of calls and missed calls and scary calls ahead…. sass is not what we need two days into listing. So I made one of those vows to myself that I am not gonna do that anymore and again I eased into this relaxed way of life I had found. The rain dripped down my hair and forehead, off my nose and splattered my jeans, I returned to the place of calm “who cares about a little rain” …. and encouraged my pup to finish his business.
On the other side of Ashburn where my parents were starting their day. Dad had worked some from home that morning, but needed to get into the office. He had packed up his stuff, but something was gnawing at him to stay. Maybe it was just the rain – who likes to commute in that anyway? So he took his time and chatted with my mom as she started her day. Again two a-types with a long lists of to dos and brains that are often moving at lightening speed with next steps, were having a slow morning too. God knew what he was doing that day….
Quinlan and I hurried up the walk and into the house. While disrobing from my sopping wet coat, I watched my little fur ball high tail it into the living room and begin the drying dance…. ya know where he flings the water from one wall to the other…. and again I marveled at my calmness – perhaps a little too calm, since now my living room needs a mop! But I sighed and even tried to just chuckle as I went to grab a towel. Speaking of water…. I thought Dan was getting in the shower, but it wasn’t running… and that is when I heard him, in a sorta odd soft spoken voice (not normal for days when we are running around late and desperate to make it out the door in enough time to get coffee) I hear, “hey Jac, remember that bag you were gonna pack?”
Well ladies and gentleman the calm has just gone out the window. Water… what water… forget the water and the calm for that matter. What is he thinking joking at a time like this? Does he not know how freaking hard I am working on being zen? Is this our life for the next 6-12 months: I am sassy thanks to my nerves and then I feel bad…. Dan makes horribly uncomfortable jokes because of his nerves….. what a way to start our very fist listed visit! These thoughts flooded my brain as just a few words finally pushed pass my lips…. “Ha ha ha Danny, that is so funny…. and you know what- can we not make that joke EVERY SINGLE TIME Hopkins is gonna call us…. it will be a long wait…” I spoke as I went flying up the stairs so he could see my eyes and know how serious I was being. And there he was, in our our guest room, calmly packing his BIG suitcase. The one he uses for really long hospital stays. And with a very blank stare he says, “I am not joking”.
Time stood still…. everything stopped ….. and I think I said at least twice more “Are you serious?” to which he responded while walking up to me for a hug “yea – pretty serious”. The air and even that elephant who had been with us for a few days now were sucked out of the room. I have no idea how long we just stared before I could think what to ask or do and Danny tried to process the details so he could relay the facts. Eventually they started to come… he was number two for these lungs. The are so strong and healthy they need to go to someone and he would be a potential match. There is one other person in front of him that is a really good match , who has also been waiting longer, so it is likely these are not Danny’s. But they wanted us to come up and be there just in case. Danny explained that we were already on our way for an appointment – so we would need a little more time at home to pack up extra stuff, but would be on the road soon. He expressed how the coordinator was calm and told us to stay calm. She noted how lucky it was we were already on our way and to just do our best to be normal. But most importantly she said – hurry.
In the next few moments I did my very best to think clearly. What did I need to pack? Who do I need to tell? What about Q? The questions were rising to the surface as fast as the nerves were filling my tummy. A lump had formed out of no where in my throat and I was caught somewhere between crying and laughing …. and Danny and I just kept repeating to each other: “its only been two days”. I was not able to get anything done until I got the first item done. It didn’t matter what it was I just needed to get going. But ultimately the first thing did matter…. I really did know exactly what I had to do first: call my parents. If we treated this whole time like it wasn’t the real deal and Danny was rolled off to surgery leaving me alone in a hospital hallway, I was pretty sure my heart would stop. Yet, this is the time I had been told to prep for! Be strong… be ready…. be calm….. so I made up some excuse that I blurted out (which likely made no sense) about getting laundry from the basement, grabbed my cell and ran tot he basement. “Mom – we got the call”.
Just like us, she asked “what do we do?” We debated on them waiting and I can call in a bit…. or should they drive us… but it ultimately ended with us agreeing that we would head up – since we were ready to roll and they need a little longer – and they would come up as soon as they were ready too. We all wondered what would happen…. we all repeated the “stay calm” and to comfort ourselves we said “hey worst case scenario we will all go have a nice lunch at the Inner Harbor”.
After the call I was ready to pack. Now I had not planned my perfect outfit or finished my blog post “What do you wear to a transplant?” In the movies you always see the cute actresses clearly tired and saddened by the moments that brought them to the hospital, but their character still looked the part with cute jeans…. uggs… a cozy and stylish sweater….. believe it or not I had thought a lot about this over my hospital years. There were many times I had tried to look cute or the part and ended up miserable in tight jeans or freezing in slip on shoes. Here it was the big d-day and I needed the perfect wardrobe to be Florence Nightengale….. ya’ll I packed uggs, socks, a tshirt, my overnight bag, and a blow dryer…. and that is about it. No underwear…. no outfit change…. and while I was running around like a crazy woman I hear Danny saying into the phone “ummmm she can’t talk right now … she is ummm, running around I think…. actually I am not sure what she is doing…” My parents had called back with traffic warnings and I worried Dan was mad I had told them. We were supposed to be just getting ready and ruminating on this big news ourselves…. as I got downstairs with my horribly packed bag, I started to say something (not sure what) and Dan quickly cuts me off “its ok, I knew you would call them….its good someone knows and it will help to have them”. And right there in the middle of the mayhem I had one of those marriage moments “wow, he really does get me…. we are a good match…. geeze that boy knows how to swell my heart…” and that is when I realized and now I have to figure out how to tell him that potentially for good.