A Heart Mother

Carrie and I spent last night at the Ronald McDonald house inside the Minneapolis Children's hospital.  Gracie is getting better every day and will most likely be coming back home in a day or two.  I feel like an old pro around that place at this point.  Carrie told me that she got to see some friends at the hospital today. Jennie is the mother of Micah, a little boy with Down syndrome who has also been no stranger to the hospital in his few short years.  I've only met him one time - at this year's Step Up for Down Syndrome walk, but at the point I met him, he was wore out and about to fall asleep -- he was definitely done for the day.  Every time Carrie meets up with them, she is so filled with optimism about Gracie's future.  She raves about this little guy and speaks about how seeing him reminds her of all of the potential that Gracie has.  I mentioned earlier that I felt like an old pro at the hospital these days, but I remember very vividly how when I was petrified to be there and Jennie, a stranger at that point, showed up at the hospital when Gracie was just days old with a basket full of goodies and things to read while we were there.  She is quite the advocate for her little guy and we hope to be for Gracie what she is for Micah.  October is Down syndrome month and she has vowed to blog every day this month.  I wanted to share a poem that she posted in her blog today -- I'll admit, I changed some of the he's to she's to relate closer to our story, but I really liked this poem - I can relate as Gracie's dad, but can only imagine how close this hits to home for Carrie:

A HEART MOTHER

One day my world came crashing down, I'll never be the same.

They told me that my child was sick. I thought, "Am I to blame?"

I don't think I can handle this. I am really not that strong.

It seemed my heart was breaking. I have loved her for so long.

I will not give up on this child. I will listen to your advice.

I will give my child any chance. No matter what the price.

I will learn all that I need to help my child thrive.

I'll even use that feeding tube. My child must survive!

Will she need a lot of therapy? Will she gain the needed weight?

Please God, help me do this. I will accept our fate.

When the monitors beep at night, it serves as my reminder...

How many parents would love that sound. Tomorrow I will be kinder.

As another Angel earns her wings, I run to my child's bed.

I watch her sleep for quite a while. I bend down and kiss her head.

I cry for the parents whose hearts have been broken. I look to You wondering why?

Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life and guide us through each day.

My mind says savor each moment she is here, but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed.

From wishing for a good nights sleep, to learning every med.

From wondering, "Will she be alright?", to watching her reach out her hands.

With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line, I look to them and smile.

You see, my child is loved so much. I would face ANY trial.

That scar I trace with my finger: it's the door to her beautiful heart.

God must have known how much I'd love here (just as He loved her from the start).

A heart mom is always a heart mom, now wise beyond her years.

For those who have angels in heaven, our hearts share in your tears.

Every day I will try and remember, I was chosen for her (and no other).

I will always embrace that beautiful day... When I became a "Heart Mother."

~ Author unknown

The Race

I know its been awhile since I've posted to this blog -- So much is going on these days and once again I find myself a bit overwhelmed and unsure where to start.  Gracie is back in the hospital with a virus that has made her miserable and was causing a valve in her heart to leak and have too much pressure.  She's recovering and will be fine and hopefully will be back home someday soon.  My training has taken a back seat -- I'll be honest, Its probably because I got down on myself for not being ready for the full Twin Cities Marathon.  My good freind Dave who was going to run it with me, followed through with his end of the bargain -- I am so proud of him, but find myself often pouting and questioning what it is inside of me that stops me from following through?  I hope to make a few blog entries soon and ramble about some of the things going on in this head of mine, but until then, a friend posted this video on his facebook site today -- its footage from a race that I actually have shared with others before.  Everytime I see this, it brings tears to my eyes -- I really see this as a metaphor (if that's the word I'm looking for) for Gracie's life -- this whole journey we've been on is tough and has had its setbacks, but in the end, I just know that little girl is going to excel.  I also hope some day that I can do the same -- despite the countless number of reasons that have kept me where I am physically over the recent years, I am still working (harder at times than others) towards my goal of running a marathon before I'm 40. 

The Hook

If you look closely in the middle of this picture, between the two closet doors, you’ll see “The Hook”.  I put this hook up in my bedroom a couple months ago so I see it in the morning when I wake and just before I go to sleep every night.  My wife cracks up laughing when she looks at it because I was nervous to not put it too low where someone could hit it –  OK, so I admit, the odds are pretty low that someone’s eye would ever get too close to it to have to worry about that.  That said, you’ll be happy to know, I put it high enough to assure that this could not happen anyway.  I’ve laid out strict rules for the hook – It’s never to be used for a bath towel or robe or anything else besides a medal that I get for finishing a marathon (although I may hang a ½ marathon medal on it if I do one, but only as a placeholder because at this point that in itself will take a lot of work for me to accomplish).  I haven’t told her yet, but I’m thinking about putting vinyl letters in the space between the closets that say “Do Life.” Wonder what she’ll think about that idea?  Regardless, I will hang a marathon finisher medal on this hook before I turn 40 in September of 2012!!!  

Thanks, I Needed That!!

I knew this was going to be difficult, but never imagine how tough it would be emotionally.  I had totally turned into that couch potato guy -- last night, I had put my long run aside all weekend and was looking for every excuse in the world to not do it.  I stood at the door almost with tears in my eyes because I just wanted to sit and relax the last bit before my Monday work week.  Well, I'm proud to say that I talked myself out the door and did my run -- my wife was working on this for my birthday in a few weeks, but could tell that I needed it, so this was waiting for me to see when I got home from my run - My cup Runneth over!

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For good measure -- today was supposed to be a rest day, but with new found motivation, and the fact that I worked from home today, I went out for a short two mile run at lunch!

Accountability - Time to Finally Match my Actions to my Words

Last week, Ben Davis of the Do Life Movement featured me and this blog in one of his posts (HERE).  Because of that, many people have recently visited for the first time.  He also mentioned in an interview (HERE) that Gracie’s story and my desire to get healthy because of it was one of the most memorable stories that he heard on his 30 city “Do Life” tour this summer.  What a wonderful honor.   As I look back on this blog since its inception trying to see it through the eyes of someone that is visiting for the first time, I am forced to admit what I’ve really been struggling with lately - that I have been mostly just talk for many years.  The very first post from this blog I talk about how I’m going to get healthy.  That was in early December of 2008.  Countless posts since then talk about how I need to do something, but here I sit today basically in the same place.  That said, I follow two blogs religiously – one is Ben’s referenced above, bendoeslife,  and the other is a blog by Travis Colby called finally airborne .  Both of these guys started their blogs at the beginning of their journey to get healthy, both started them after I started mine.  Since that time, both of them have lost over 100 lbs, both have finished multiple marathons.  As a matter of fact, Ben has completed two ironman’s and Travis is training to complete one early next year.  Both of these guys were bigger than me and are now Ironmen.  Two nights ago, it took me almost an hour to run/walk 3.5 miles - every single run is a struggle, but it was for them at first as well – I’ve got a long way to go, but am done living like I'm OK with where I’m at, because I’m not – I can look back at posts on this site and clearly see that.  I started this blog to keep me honest and to make me accountable, an attempt to make my actions match my words, and have somehow avoided it while still being able to look people in the eyes.  This really is the turning point in my life – Our journey with Gracie has forced me to see things in a different perspective and from now on my actions will match my words.  I am done being all talk.  I am going to continue to “Do Life” and become that happy healthy husband/dad/person that my family/I deserve(s). 

A busy weekend full of reminders

Friday night, we met some relatives from Florida for a quick bite to eat before they headed to Target Field for the first time to see the Twins play the Yankees (ugly game, but a beautiful venue).  After dinner, I dropped the wife and kids off at the house and headed north with my brother-in-law to my mom’s house to help her move.  They are in the process of moving over an hour further away, so by the time we got done unloading the truck and back home, it was well after 11PM.  I must admit, I’m not always happy about the decisions that the people in my life make (and believe me, I know that I’m no saint and am certain they feel the same about me at times).  But I do know, and have vowed to work on remembering that, they are my family and family is always there for each another when they are needed.
  

Saturday morning, we slept in a bit (OK, I slept in a bit) and eventually headed up to my in-laws cabin which is fortunately so close to our house that we were still able to get there just after noon.  We spent the day out on the boat and enjoyed the slower pace that comes with living life on the lake.  At one point the girls went to the beach so Lylli could swim and I went on a boat tour of the lake with my father-in-law and Carrie’s aunt and uncle.  My in-laws have a cute little late 60’s run-about that often gets compliments from others – even those driving the bank busting, way out of my tax bracket dream boats often greet us with a nice comment about it.   It’s definitely a neat little boat, but not what you’d say screaming with power.  The low point of the day was when everybody else had to move to the front of the boat in an attempt to plane out – unfortunately, still no luck, the front end stayed lifted so high that I could barely see in front of us.  The tour consisted of the three of them sitting as far to the front of the boat as they could while the less than svelte, sun-burnt five-headed (much less hair than on what used to be my forehead), sweaty son-in-law sat alone in the back - two feet lower than the rest.  I couldn’t help but be a bit self conscious when passing and waving to the other boats.  Heck, I probably would have chuckled myself.  After the wonderful reminder that I was not comfortable enough to enjoy the lake in the same way as the shirtless folks we waved to on our tour, we headed back to the cabin and eventually home. 
 

On Sunday we headed to the state capitol to cheer on my step-sister and sister in-law and their team as they finished the Susan G Komen 3 day walk and to watch the closing ceremony.  Deb was one of the walkers that walked with them, I won’t begin to try to explain exactly how we know her, but for ease of explanation, I’ll just say she’s a friend of the extended family.  She is a two time breast cancer survivor and was chosen to raise the final closing ceremony flag.  The whole time I watched her, I thought about how supportive she was to us with Gracie while at the same time facing such a fight herself.  I have to admit, there were times when I left the hospital this past year and had to go to work where I was numb and confused about how life could just go on, business-as-usual, all around us while we were in such a fight for Gracie’s life.  I think the reminder that everybody faces major life changing events no matter if they are your best friend, a stranger, or your worst enemy – this is something that we all have in common – that guy that just cut you off and shot that dirty look on your drive in this morning, before you return the favor with the bird, remember that instead of letting him be the nameless, faceless target of your aggression, that we all do in fact have this in common and maybe he is crying inside because he just had to leave his sick daughter at the hospital to provide for his family, or has just lost a loved one or is currently struggling through some other life changing event.  Anyway, back to my story - throughout our time at the walk and ceremony, several things came to mind that made me extra emotional.  I saw the thousands of tired limping-bloody-blistered footed walkers hugging their families and friends as they finished the three day 60 mile walk.  The energy in the air was so happy and sad at the same time – but what an empowering environment.  It reminded me of how so many people have to fight so hard due to things that they have no control over – reassuring me that I need to continue to work to control my life.  Don’t get me wrong, I’m not comparing becoming out of shape to having a life threatening disease – quite the contrary – the event served as a reminder that I can control this and in order to properly respect those that lose their lives to things out of their control, I need to follow through.  At one point, my wife and I looked at each other, both of us with tears in our eyes.  I think she put it best, saying that it seems causes of any sort have taken on a whole new meaning to both of us.  Having gone through what we have with Gracie has changed us both very much.  During the ceremony, a large group of walkers released several pink balloons into the air – as they flew higher and higher into the sky, we both could not help but think about the family we met in the hospital that lost their beautiful daughter this past year.  I just know that Eden got very excited seeing all of those pink balloons coming her way.  I also found myself thinking about how that same location is the finish line for the Marathon that I signed up for and will not be running.  I wondered how in the world will I be able to go there with my head held high to cheer on my buddy Dave on October 2^nd while thinking the whole time that I am supposed to be running with him.  All I can do is face it head on and know that I am working hard at this and getting better every day.  There are going to be highs and lows in this journey, but in the end, I will do it.   On a positive note, I spent the afternoon with my girls at this wonderful event – the day before Gracie’s nine month birthday (yes TODAY she is 9 months old!!!!) dancing with her as she smiled that beautiful smile – a smile that every time I see it,  confirms how lucky I am and that I am right where I’m supposed to be.
  

I went home and with a newfound determination did my planned 4 mile run – sure, between the walking and running, it took close to an hour and I will need to speed things up quite a bit to not get swept when I run the half marathon in October - but on a Sunday night where I was tired and would have previously sat on the couch and watched TV, I got myself out there and did it.             

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.

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