I am a very lucky man – I’ve got an amazing wife and am the father to three wonderful kids. Lylli was born on Halloween in 2008, Gracie was born November 2010 and although she only lived for 17 months, she will remain as much a part of this family as the rest of us, and Mickey Gray, our first son, was born in June of 2012. I’m not going to say that life has gone exactly as I would have wanted, but it is a good life and I am determined to make the best of it.

This blog is an attempt to document my quest to become a dad that my family can be proud of.

Tuesday, December 20, 2011

Pre-op testing day .... So far

*** Picture above is the house that we are staying in.

Well last night went pretty well – the room has a full sized bed which when I saw it, I got that same feeling that I get when a hostess at a restaurant is seating us and brings us to a booth that I know is going to be a challenge for me to fit in -- the thought of sleeping in that for a guy my size with a pregnant wife felt like we'd be facing an inevitable night long game of Tetrus.  That said, by the time it was bedtime, Gracie was so comfy, that we didn't bother putting up the Pack-N-Play they put in the room for us. The girls got the bed and I slept in the fold out chair – It actually wasn't too bad and I knew that it was totally my turn since from Wednesday on Carrie will be sleeping in either the little window cubby in the ICU or the infamous bed of nails (AKA fold out chair) in the step down unit.  She fussed a lot throughout the night, but in true Gracie fashion was in a great mood this morning.  The girls got ready and headed to the hospital very early which is a very nice ¾ mile walk away.  Their day will no doubt be spent in several waiting rooms as they go the through checklist of x-rays, tests, blood tests, etc to prepare for the big day tomorrow.  My job today is to stay in the room and try to get some work done.  I have to admit, sometimes the dad part in this heart baby thing can be difficult – as boring as it can be in the hospital, it's hard to be away from her.  I hate to say it's gotten easier -  I think repetition numbs you a bit in everything you do, but I remember after her first surgery a year ago, that feeling of having to leave the hospital and drive towards work – It sort of felt like when you were a kid and fell down or something and cried so hard that the world was spinning, etc.  The first time you do it, it's so hard to accept that the world hasn't stopped for everyone else like it has for you – everybody else is living their lives despite your's being turned upside down.  As the dad, I've had to put what we've had going on with Gracie to the side for several hours at a time to concentrate on work or to attempt to make life as normal as usual for Lylli.  It's been challenging at times, but we've managed to get this far and keep my job and Lylli is doing great  – I am glad that I am in a profession that I can work remotely sometimes.  This gives me the freedom to be here and still be able to work a few days instead of taking all of this time away unpaid.  I still have to be away from Lylli for awhile, but am very excited to see her on Saturday.  
OK, so I better get back to work…   

Monday, December 19, 2011

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

Thursday, December 15, 2011

Do 2012...

So as the year comes to an end I've been given a lot of thought to how the heck I will pull off my goals for  2012 – I feel the same about resolutions as fellow blogger and do lifer Scott Schultz – see

That said – like so many things in the past several years, I haven't held myself accountable, so just like signing up for the 2011 Twin Cities Marathon and not following through with it, it's been nothing for me to say I was going to save the world, become an underwear model, filthy rich, etc, etc – on Jan 1st – as well as take all kinds of pride in my resolution to fix everything and tell anyone who will listen about how this time I will do it.  The mind really is an amazing thing.  I sometimes wonder with all of the lies I've told to myself and others how I can continue to look people in the eyes, let alone myself in the mirror.   What did Einstein say is the definition of insanity again? – doing the same thing over and over and expecting different results.  Yeah, that about covers it – year after year (month after month, post after post) – I've talked a great game – essentially countless number of  "look at me, let's celebrate my victory before I've done 1 thing to earn it"  moments.  Well, there's nothing that I can do about the things I didn't follow through with in the past – the one thing that I can do is to alter my behavior.  So in the footsteps of Scotts Blog post above, someone who I hope to become friends with this year and run with a bit, I want to tell you some of the things that I hope to achieve this next year:

1.        I signed up and plan to get the year started by running the Polar Dash 5K on January 1st  – Carrie and Gracie will still be in Boston, but I will be returning home with Lylli a few days before that day.  This is my starting point for the year – I will be running it (probably running/walking at this point) with my sister-in-law.  I have not run in some time and will be basically starting over, but am using this race to set the tone for the year.  2012 is the year where I follow through with my words

2.       I signed up and plan to run the Lucky 7K mid march.  At that point, I hope to be down a few pounds from the Polar Dash and also at a point where I can enjoy the run a little more.

3.       On Sept 14th, I will be turning 40 years old – I found a marathon in Walker, MN the next day – I am going to do everything in my power to be ready for and finish this marathon.  Because I have been struggling with how I haven't followed through with things, I made a deal with myself – If I do all that needs to be done to get myself to a place where I can complete a marathon, I will have then proven to myself that I can commit to something bigger than myself and at that point will go back to school to get my masters degree.  Something I've wanted to do for awhile now but have afraid to start and not follow through like so many things in my life   

4.       A couple of other things that I'm thinking about doing is the Monster Dash, maybe Grandma's Half, the TCM full or 10 Mile – Also, the Do Life Boys have had to pull out of there 52 marathons in 52 weeks effort, but have promised to make many events around the nation in 2012 – I would really like to figure out a way to meetup at a marathon late in the year and run in their pace group.

2012 is going to be our year  – I need to make myself healthy so I can be here for a long time for my wife and three kids (yes, I said three – Carrie is due on May 30th)

As for the underwear model comment – stay tuned – a quick word of warning, I've been thinking about using public embarrassment as a motivator and in true Ben Davis fashion ( www.bendoeslife.com ), been toying with the idea of posting a "before" pic of me standing in my boxers for everyone to see – haven't quite decided if I'll have the guts to do that yet – but just thought I would warn any of you that plan on following this blog in the future – I do plan to do a better job at using this as a tool to update my progress and help hold me accountable.    

I'm done half-assing this amazing life of mine!!!!

Preparing for Boston

Those of you that have found my blog from one of the Do Lifer site(s) are probably thinking a whole different thing when you read the theme of this post.  Unfortunately, in order for me to run the Boston marathon, I would need to drop about 4 hours on my marathon time and at least 100 lbs – more on that effort later, but first:
We are so very busy trying to get all of our ducks in a row (and celebrate some last minute pre-Christmas celebrations) before we leave for Boston early Monday morning.  I have to admit this trip is a hard one (I guess most of them have been at this point).  I know that the team at Children’s Hospital of  Boston is amazing and only looking to do what’s best for Gracie, but I can’t help but be scared that we are pushing our luck having her 4th open heart surgery in just over a year.   Whenever she comes home after an extended stay in the hospital, it takes awhile for her to relax – She doesn’t sleep well at all  - it’s as if she stays on guard every night, just waiting for the next doctor or nurse to come in and try to draw blood or take an x-ray, etc.  These last couple of days have been great – she has been such a happy baby and has slept so much better.  It seems that she is finally just getting over her latest trip to Boston in November and here we sit, just a few days from going back - this time, not just for a small procedure to see how her heart is doing, but for another major open heart surgery.  I know kids are resilient, and all of this stuff happening so early on in her life is the best for her, but I can’t wait until our little girl gets to a point where she doesn’t have to have a major surgery every 3 months.  We have been so excited to see how well she has been doing and the thought of taking any steps back is very difficult.  We will be fortunate enough to be able to go to Lylli’s Christmas dance recital this coming Sunday afternoon, but unfortunately Gracie’s surgery, next Wednesday is on the same day as her Preschool Christmas recital.  It just breaks my heart to not be able to be there in the crowd for her.  I am crushed to know that she won’t find me in the crowd and tilt her head to the side and do that little bite the lip smirk as she stands up there with pride singing Christmas songs for her daddy.  Gracie, Carrie, and I are going to Boston on Monday – it is especially hard this time for me to leave Lylli behind – She means everything to me and the thought of her missing her mommy and daddy is hitting me especially hard today.  Fortunately, my amazing in-laws will be bringing Lylli out to be with us over Christmas.   We are moving from the Hospital family housing for a couple days when they arrive to stay in a hotel near the hospital.  On December 15th, last year, I was praying that I could have my family together at home on Christmas day.  This year, being home isn’t important  -- I’m just praying that God blesses, once again, the hands of Gracie’s surgeon Dr Pedro del Nido and his team to fix Gracie’s heart . Sure, this Christmas will be spent in the hospital, dinner most likely prepared in the kitchenette in our hotel room, the important part is that we will be together.