Touched Down in Bean Town

My mom stayed in Lylli's bed last night because our flight was so early today, so Lylli slept in our bed with us -- My night was spent dodging elbows and kicks from midnight until just before 4 AM. I've got to say, I have never appreciated being repeatedly kicked in the back so much. We packed up all of the bags and medical equipment and made our way to the airport. I'll admit my first mile or two were spent wiping away tears because I know these hospital stays are tough on Lylli -- I had a really hard time leaving her today. This trip wasn't quite as smooth as the others have been for getting through security. It seems that I forgot that Carrie put a gallon Ziploc bag full of bottles of liquid medicine in my carry on laptop bag so after all my stuff was pulled off the track as it exited the xray machine, I turned back to look for Carrie to give her a shoulder shrug, and saw her and Gracie standing in a little glass walled cubical – Apparently I'm not the only one that failed to remember all the important details - Carrie forgot that she had an ipod in her back pocket that wasn't remembered until the agent found in the pat down after she went through the checklist of things that she removed to ensure that the metal detector did not go off (I'm sure it didn't help that she was carrying a baby with cords dangling out of the bottom of her outfit). The lady got a little chippy with me and sarcastically inquired about how I didn't know the 3/1/1 rule that has been in effect for over 8 years. I, of course, respectfully informed her that I wasn't trying to smuggle toothpaste or shaving gel, like the poor old guy that had to forfeit his freshly bought drug store treasures, but would have gladly removed my medically fragile daughter's medicine from my carry on if I would have remembered that my wife put them there. So after our pat downs, liquid vapor tests, and bomb dustings, we finally made our way to the gate. They refused to tell us how full the plane was so we were unsure if we were going to be able to get a row of seats to ourselves (insert big ass joke here – but really, it was more about the portable oxygen machine, oximeter, the baby – ok, you're right, it gets tight without all that stuff). Luckily they lowered the upgrade fees and when you consider checked bag fees, etc – it only came to around another $100 total for both of us - so since neither of us got the other a Christmas gift this year, we decided to upgrade to first class. Of course, after we boarded, we noticed that the plane had several empty rows that we could have had to ourselves – We're still a little skeptical that its less of a rule that they couldn't tell us how full the plane was and more of a way to get people to upgrade – oh well, we skipped breakfast at the airport had plenty of room for Gracie and the oxygen, and well, you get the idea! It felt so wrong to not take advantage of the free booze, but decided to pretend I was mature adult and opted for a cup of coffee and eventually a ginger ale.

Gracie had some rough patches where she was a little noisy, but the people around us either pretended we didn't exist or were pretty understanding and because of the tail winds, etc, today's flight was just over 2 hours landing us in Boston a little after 11 AM. We debated whether to try and maneuver the train system, but after looking over our inventory, and hearing that we would have had to take shuttle to one line, take one train so far, transfer to another train and then walk a few blocks after that, we elected to take a cab straight to the place we are staying. Luckily, they had our room ready early, so we checked in and took a walk around town (we walked in the opposite direction of the hospital since we'll see plenty of that side of town later in the week). We had lunch at a Chinese restaurant that a guy on the street recommended and hit Trader Joe's for a few groceries (and dark chocolate caramels). We took a short nap, then went downstairs and had a couple of sandwiches delivered. Before we ordered, Carrie met a woman that also has an infant daughter (9 months) named Gracie, with a heart condition and Ds. I gave them some space as they talked and listened occasionally from afar – I have got to say, I cannot be more proud of her. To hear her speak to others about our journey – it is so amazing to listen to all that she has learned to this point – between her career as a special ed teacher and everything she has learned in her short time as a heart mom, she is so in her element and I see how much she can relate to these moms and wants to reach out to them the way others have reached out to her. But of course, she does it in such an unassuming yet confident way – I could hear in the voice of the other mom how much she appreciated the conversation that they were having. We all know I am a lucky man, but I am so proud of and thankful that she is the one that I am going through all of this with. Anyway, Gracie is sleeping on the bed right now and we are both sitting in the dark – me on my laptop and Carrie surfing the web on her ipad. Tomorrow is pre-op testing to prepare for Wednesday.

If I survive the bites that I took of the rotten pumkin pie tonight as we were exiting the kitchen, I hope to update this blog more often this trip – so check back for updates – or of course, if you don't want, how does Carrie so kindly put it? "all of the extra words" – you could also check in at Gracie's Caringbridge site – http://www.caringbridge.org/visit/graciedelaney

Happy Holidays everyone -- If you could, please keep our baby Gracie in your prayers