Gracie's Trip to Boston

For those just joining this blog, my second daughter, Gracie, was born in November of 2010 with Down syndrome and some very severe and rare heart defects. After two major heart surgeries at the wonderful Children's Hospital in Minneapolis, the doctors there were unable to give us the answers we needed - the best they could do was to "buy her some time" - This was not an answer we were satisfied with and set out to find someone that could. We found Dr's Del Nido and Marx (surgeon and cardiologist respectively) at the world renowned Children's Hospital of Boston. This was our last hope to save Gracie's life, so in May we flew to Boston and with a very complicated surgery, they were able to give our girl a four chamber heart -- she is now a part of a very small group of kids with this condition that were given no hope at home, yet were able to go to Boston to be repaired. This is a little montage my wife put together of her trip. These little girls are my world and the reason I am working so hard to get healthy.

Make a video - it's fun, easy and free!
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26.2 B4 40

So I had come to the realization that I wasn’t going to be ready for the full Twin Cities Marathon on October 2^nd, broke the news to my wife and made that painful phone conversation with my buddy Dave (The undertaker, last man to let you down) that I wouldn’t be joining him in “our” first marathon.  It was a pretty tough little patch for me – I even sunk deep enough into a mini-depression that I skipped some runs, etc.  I am so upset with myself for not following through with things and have vowed to not do that anymore – So instead of looking at this as a failed attempt, I am just making a realistic adjustment to allow me to eventually achieve my goal.  Instead of the full marathon at the beginning of October, I am now going to run the Monster Dash half marathon at the end of October.  That said, I still had my goal of completing my first Marathon before my 40^th birthday on September 14^th, 2012.  Looks like it won’t be the Twin Cities, because that takes place in October – close, but still not before my 40^th birthday.  So as I started searching for marathons, it occurred to me, I will not have Dave to pace me on this one and at my size/pace, there won’t be any pace groups that I can hang with.  Then, as if a sign from whatever power you believe in, I read the Bendoeslife blog as I do daily and learned of their plans for 2012 to run 52 marathons next year and act as unofficial pacers for those like me finishing towards the end of the pack.  I literally got tears in my eyes – What timing!   So as I continue my training,  I am eagerly awaiting to see their schedule for next year and if I have to fly across the country to run it with them, I will do that.

 

SUDS 2011

Last year at the Step Up for Down Syndrome walk, 85 people joined us on a beautiful day to celebrate what was at that point an uncertain future for our unborn baby.  Since that day, Gracie has arrived and though we've had some scary times, we are happy to say that her future looks bright.  The support of our family and friends (and friends of friends) has been so wonderful.  We invite you to join us this year to walk as part of "Team Walking with Grace".

The walk, this year, will take place on September 25 at the Midway Picnic Pavilion at Como Park in St. Paul.  The walk itself officially starts at noon, but the area is full of booths and kids' activities that get started way before the actual walk.  We would like to invite everyone to come early (anytime after 9 AM) to enjoy some breakfast treats and visit, checkout the other activities, and of course see our Amazing Gracie.

We will provide a "Walking With Grace" t-shirt to those that do not already have one.  Please remember when you RSVP to this event to include the shirt sizes of everyone in your group needing a shirt. 

Your response to the evite is important so we can be sure to have enough food and shirts for everyone.  Here is the link to the evite: http://new.evite.com/services/links/T7MGQUS4DY
there is no need to officially register for the walk (through the DSAMN.org site), it's very informal, just let us know if you plan to join us so we can plan accordingly.  In order for us to get the shirts in time, please RSVP with numbers and sizes by September 4th.

We are hoping to take a picture of our whole group at 11:30.

Also, for those that would like to join us and do not want to walk – that's no problem.  We will have a popup canopy and chairs, etc – There are many people that don't do the walk – the event has plenty to do without it. 

Here is a link to more information about the event:      www.dsamn.org/stepup

Thanks again for all of your support over this past year – we hope to see you at the Walk

~The Delaneys

Do Life.

I admit, this blog goes in so many directions (kind of a lot like the writer).  When I first started posting, it was just after the birth of our first daughter, Lylli – the goal was to chronicle my attempt to get healthy and become a good dad.  I got caught up in any number of other things and once again slipped further down the path of not being able to buy clothes off the rack (and to give you a hint, I haven't gotten any taller).  The theme of my posts moved quickly into bathroom humor aimed at the couple of high school/college buddies and their coworkers that I knew followed it.  Then suddenly, we got news about our second daughter very early in the pregnancy having Down syndrome and a congenital heart defect.  I can't say I ever imagined being the father of a child with a disability – That's just one of those things that happens to other people.  So then, I started posting my thoughts about how my new life would be with Gracie in it.  Other people started following it – to be honest, it even forced to go back and delete some of my rants about stall #3 in the office bathroom and my view on the cons of the horseshoe toilet seat.   Then Gracie was born this last November and the doctors told us she wasn't going to make it – I had times when I posted something almost daily and other times where I rarely posted (for instance when my wife was reporting all of the details on Gracie's caringbridge site  - for those interested see the link on the right side of the blog) – Gracie had two major heart surgeries in Minneapolis to "buy her time" and despite the skepticism of the doctors in Minneapolis, in May we went to Boston to the best surgeon there is and he fixed her heart – It truly was a miracle and the support from our network of family and friends was amazing.  I am a very thankful and blessed man.

For those that follow this blog – Because of what we've gone through this last year, you know that I've come to the realization of "What kind of dad would I be to continue to live a life that ruins this perfectly good heart that I've been given when Gracie has had to fight this hard just to have a life because she was born with a bad heart?" – So my buddy Dave calls me up awhile back and asked if I want to do the run this year at the Twin Cities marathon – we both have done the 10 mile race that day in the past and he knew I was very disappointed the last time did it.  So I told him, heck yeah!  I was bound and determined to run the Twin Cities 10 mile somewhere between the 9 minute pace I ran at the first year they had it and the 12 minute per mile pace I ran a few years ago at almost 300 lbs.  I talked to him a couple days later and he informed me that he was talking about the full Marathon – Holy Crap!  I couldn't even run to the mailbox without a break.  My guardian angels swooped in and offered me up a coach that has outlined my training and I have been running 4-5 days a week for about a month and a half.  I still can only run probably at most a mile before needing to walk, and most wouldn't even consider my running pace, running, but I feel myself getting better every day.  I bought and had to return a Garmin 405 gps watch because my wrists were too big – but found an earlier model (the 305) that works with an extender band – I'm so used to running (ok mostly still walking) with my iphone playing music in my ears, but have recently gone out on a few runs without it now that I have the watch to "pace" me.  When I get to a point where I want to give up, I think of my girls and sing "Fix You" by Cold Play in my head – that finally brings me to the reason for tonight's post:

As I make my way on this journey to become healthy, I've stumbled across many blogs – most of them are either a parent of a kid with a disability or someone in their own pursuit of being healthy.  One blog is from a guy name Travis Colby (http://finallyairborne.blogspot.com/) – Travis was kicked off a ride at Disney because of his size—that was his tipping point – he's a former fat guy turned fitness fanatic journaling his weight loss journey and multiple marathons, etc.  One day he posted the youtube video of Ben Davis –  I believe I shared it on this site the same day – I still, watch this video fairly often – I can relate so much to what he was feeling -- the montage is to "Fix You" by Cold Play – I hope to have a montage of my own like that someday -- heck I've started taking the bus to work – the other day I found myself in the back seat in tears watching the video on my iphone – Ok, I wasn't sobbing, but I had to quickly turn it into a yawn to hide the fact that I was so emotionally effected by something I was watching.  Ben promised his grandma over Christmas of 2008 – that he would face his depressed and unhealthy life head on – in fact, his blog www.bendoeslife.com , I believe was originally created for her to keep tabs on his effort.  Since that time, he has lost 120 +/- lbs, has finished multiple marathons, as well as at least one ironman (with his dad, Pa, and brother, Jed) – they are all currently training for another.  It's this blog where I believe I originally got the statement that Pa told the boys – "You don't see old fat people" – That really hit home -- I use that line all the time now and think of it quite often since I'm almost 300 lbs and just over a year shy of 40 with 2 year and 7 month old daughters and plan to keep trying until we have a boy – I plan on being around for these kids for a long time and in order to do that, I needed to make some changes.   All three of these guys are spending the summer travelling across the country in a station wagon, to spread their theme to "Do Life" by hosting a series of free 5k's  www.dolifemovement.com – check out each of their blogs on that site.  I religiously follow them now and I wanted to encourage the masses to do the same.  Next Thursday, July 14^th, they will be in Minneapolis  for one of these 5K's  http://dolifetour.tumblr.com/post/6055649788/minneapolis

 I wanted to encourage you to join them/me – please don't be intimidated if you're not a runner – even if you just want to get some motivation to get started on a similar journey – many people walk it, there are people my size and bigger as well as seasoned runners.  The emphasis is not about how fast you finish the run.    Details about the 5k are on the dolifemovement site above.   I contacted Eric Perkins at Kare 11 hoping he'd do a "Perk at Play" segment about their tour this summer and maybe join us that day – he responded asking when, but I don't know if he contacted them.  Anyway – they are asking that we spread the word -- so I am!

June 30th 2007

What can I say that I haven't already said about my wife?  I'll spare you most of the same ol' sappy stuff that I've touched on a few times during our journey so far with Gracie.  It's crazy to think that four years ago today, we gathered in a park with a couple hundred of our family and friends and got married – When I think back about that beautiful day, I wouldn't have changed a thing.  Back then I knew I was lucky to marry her, but as we've faced the many challenges that have been presented to us since that day – I have to add, also, how thankful I am.  I don't know how I would have made it to today without her as the yang to my ying.  She is so many things that I am not – and I can't thank her enough for the wife she is to me, but more importantly, the mother she is to our daughters.  It's easy to be happy when everything is going great, but we've had some scary times already and to see how she's been during those times proves without a doubt that she is who I am supposed to be with – Some people originally may have only seen the quiet, easy to please, beautiful woman (like I said, my opposite) – but I think, by now, so many have also gotten the opportunity to see how amazingly strong she is too.  Because of her, Gracie is going to live a long life – Just one of the many reasons that I am beyond proud of her.

 

Carrie -

Thank you for putting up with me and for becoming my wife – thank you for being such a wonderful mother to our amazing daughters -- and thank you for supporting my, at times, pathetic effort to get healthy – I know its selfish of me to come home after work and then leave you, with a wild 2 year old and crying baby, to go run – I know you know how important it is for me to get healthy and your support means everything.   Thank you for putting up with me on those days where I spend more time pouting about getting to this point than doing something about it.  You don't see old fat people and I plan to spend many evenings as an old man hanging out with you in our rockers on the porch talking about how proud we are of our children (I originally typed girls instead of children, but as you know another Delaney family cousin was born just the other day – of course a girl – this has to be some sort of a record – You've got to think the odds are that the next one will be a boy – you ready?)     

Just One of Those Days

Well I think it’s all catching up with me – After doing the Heartbeat 5000 5k with the girls (ok not officially, but we were there and visited with people), and having lunch at our favorite local Mexican restaurant, I snuck out of the house on Saturday afternoon to watch some buddies play softball at the local summer festival – I got way too caught up in the moment and the fact that I was given the green light from my wife to stay out and have fun - I had way too many beers from the beer tent – I rarely go out anymore, and besides being a little obnoxious, I was home early (got a ride) and it was harmless fun and frankly, I needed to blow off a little steam, but I need to learn to say “when” because I heard the phrase “we talked about that last night” several times on Sunday from my wife -- I don’t like it when I’m “that guy” and am told by others that they heard I had fun on Saturday  –  and when the next day I bring up several things that we covered the night before and have no recollection – that’s not good – I’m not saying I’ve got a problem, but I am saying that I am going to be a little more aware the next time I decide to let loose.  I woke up Sunday feeling terrible and skipped my long run for the week  -- I can’t believe I made the decision to do something that resulted in me missing the most important run of the week for my training -- I was so depressed and ashamed on Monday that I could barely get out of bed.  I went into work a little late and spent the whole day in a funk.  I guess everybody has those times when they are down on things and I thankfully have managed to stay pretty upbeat over the last several difficult months, but I couldn’t help but feel like I’m letting my family down.  Every day, I remind myself of the saying that “you don’t see old fat people” and I am truly trying to make some changes in my life to get myself to a healthy weight, but I think I was way too optimistic about training for this marathon – We’ve got so much going on these days – its difficult enough to try to get back to a “new” normal life after 7 months of hospitals and heart surgeries – but add to that the fact that every day, I’m reminded of how truly out of shape I am – it’s really mentally taking its toll.  I don’t think it helps that I am seriously in need of some time away from work  – Life has been so stressful this past year and I don’t have the option to take any time off to relax – and believe me, I’ve never needed it more in my life.  I went out last night for my scheduled run – although being discouraged by my slow pace and short distance travelled in the 40 minute workout – I did feel a bit better when I was done and am not going to give up on my quest.     

 

 

 

 

Found This Online - Author Unknown

My face might be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As god in the heavens

Looks down from above

To him I'm no different

His love knows no bounds

It's those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I've chosen

Will help me get started

For I'm one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I'll do as you do

But at my own pace.