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.

Friday, December 31, 2010

Happy New Year!!!!

If they weren’t frozen to the ground, I guarantee I would have seen tumbleweeds blowing across the road on my drive into work.  Cube-land is vacant today on New Year’s Eve with the exception of those of us that are not full time employees.  It’s hard for me to not be a little resentful on days like today since I was asked to come in as a consultant only for a short time – that was over 2 years ago.  I can’t complain though because I do like this gig and there are many without jobs these days.
I haven’t been very good at updating this blog lately – Once again, I’ve gotten to a point where I feel like I need to create some profound posts to accurately recap my last couple of months.  I’ve decided against it since my wife has done such  a great job tracking our time lately on Gracie’s Caring Bridge site. 
Today is the last day of 2010, I thought I would write a couple thoughts about this year and the next. 
In 2010 we sadly lost Buck and Bodey.  I also had some issues with my eye that really forced me to think about my health and mortality, but the biggest event of the year has been the arrival of our daughter Gracie.  In many ways, it’s been the scariest year of my life, but at the same time, it’s been a very important and positive year.  Everything that has happened has really forced me to rethink about things in this life that are important.  I am nowhere near the same man that I was on 1/1/10.
2011 is also going to be a big year -- We fully understand that the first heart surgery that Gracie went through (and got through with flying colors) was just a temporary fix.  During this next year, we will be researching and asking a lot of questions to figure out what the next steps will be for her.  This spring, she will need to undergo another heart surgery.  At this point, we don’t know what or even where it will be for that matter (today, the options look to be either Minneapolis or Boston).  I look at Gracie every day and I truly feel that she is here for a much bigger reason.  It’s amazing to hear how much our tiny little newborn daughter has effected so many people.   So many times already, during the pregnancy as well has well as the first 40 days of her life, she has been doubted and every single time, she defies the odds.  I wish I could be half the fighter that this little girl is.  For the last couple days of her hospital stay, we stayed in the room next door to Mighty Max and his family.  They are from Fargo, ND.  Max also has Ds and an unbalanced heart.  Carrie and this little boy’s mom met on the internet even before Gracie was born – both searching for answers about their babies’ heart issues.  There are definitely differences between their hearts, but there are also similarities.  A few days after we left, Max flew to Children’s hospital in Boston – the plan is on Monday he will undergo a procedure that will hopefully fix his heart.  I can’t stop thinking about that little boy and continue to send all of them positive energy (I ask that you do the same - http://www.caringbridge.org/visit/maxgerman ).  I truly believe that these two kids have been brought together for a reason.  They are both paving the way for babies with down syndrome and unbalanced heart issues.  I cannot wait for the day where we can all get together so they can play after all of this is behind us.
2011 is also the year that I have vowed to lose (at least) 50 lbs.  I am up to around $50 per lb in pledges – money raised will benefit the Down syndrome Association of MN and the Ronald McDonald House.  I am using this as an opportunity to raise money for two organizations that are important to me, but my motivation for this effort is for a much different reason.  I need to get healthy so I can get old with my wife and watch my girls grow up – Another thing that I’ve been thinking about lately is –  How, when my daughter was born with a bad heart and has to go through so much just for a chance at a life, could I do things and live in such a way that ruins my perfectly good heart?  If this is not enough to motivate me, nothing will be.  So, wish me luck – I’m not quite sure how I’m going to do it yet, but it all starts Monday…
Anyway – I plan on posting a lot more in the coming year to track my girls as well as my weight loss journey.
Happy New Year – I wish you the best possible 2011!!!

Tuesday, December 28, 2010

Tuesday, December 7, 2010

Gracie is Gracie

I follow many blogs written by parents of kids with Down syndrome.  Time and time again, I see stories about how in the beginning they were afraid – probably because you just don’t know what it’s all about yet and all you know are all of the generalizations that are out there about people with Ds.  Gracie is two weeks old (as of yesterday) and I already can tell you that Gracie is Gracie and I can’t put her into a category just because she was born with Trisomy 21.  Everybody told us prior to the surgery – typical  kids take this long for this and that –  she got off the bypass machine no problem, she barely swelled up post surgery, they sewed up her chest less than 24 hours after surgery, she’s already off of the ventilator – she’s making great strides in learning to eat --  all things we were assured would most likely take some time (and everything had that “for a typical kid” asterisks by it).   I’ve heard a very highly respected intensive care doctor say to a large group of doctors on their morning rounds (when he didn’t know I was listening) – “This is as smooth of a recovery from a single chamber heart surgery that I’ve seen”.  Gracie had open heart surgery last Thursday afternoon,  and pretty much every step of the way so far, she has been ahead of schedule.  She’s a fighter, our amazing Gracie – I said a long time ago that our road will be a bumpy one, and I’m not pretending that it won’t be, but right now, I’ve got no doubt that this little girl is going to change some opinions. 

Thursday, December 2, 2010

A letter to Carrie before Gracie arrived

Gracie is here and I was working on an entry for over an hour last night when I lost everything I had written -- she is 10 days old today and I am finding myself at a loss for words -- most likely because I'm searching for something profound to say and don't want to miss anything -- Carrie has been doing a great job at updating Gracie's caringbridge site - When I find the time where I can think, I will recap our last 10 days -- she is in surgery as I type this and its all out of my hands -- I pray that things work out the way we want them to.  I wanted to share a note I wrote to Carrie prior to Gracie's arrival - She is far MORE private and may not like that I passed it along, but I am unbelievably proud of my amazing wife -- she is way stronger than she thinks she is and I want to share how amazing she is with the world.  Even as I sit here scared as I've ever been, I can't help but be so thankful for my amazing life, family, and network of support.


Carrie --


You don't need to be a marriage counselor to see how different we are  – I'll admit there are times when I wonder how in the world we ended up together, but then, usually very soon after that,  something happens that points out to me without a doubt why.  Yes, we are different in a lot of ways – as with all couples, some of those things we just need to learn to deal with.  But there are also many ways we differ that are a wonderful compliment to each other.  I am sorry that I can be a pain to live with – I know I can make things miserable and can be impossible to please.  I do not deserve to have you as my wife, but thank God everyday that I do.  Speaking of God – while I've work through the arrival of Grace in my head,  as we've been presented with her chances of making it, etc, I've naturally gone to God and asked for forgiveness for everything that I've ever done wrong  -- It's a sad thing that a person waits until moments like this to realize that they can/should be a better person.  I am especially sorry for times that I have made you feel less than the most beautiful, intelligent, strong, important person in this world to me.  Having you, Lylli, and Gracie in my life have forced me to reflect on who I am as a man and I promise to try to make all three of you proud of me as time goes by.   I can't thank you enough for everything that you do for all of us – you are the glue that keeps our family together and I do not tell you that enough – If I could take all of the bad off of your shoulders to carry myself, I would in a heartbeat.  I give you a hard time about never knowing what to ask for on your birthday, etc – I joked to you the other day that I could think of 10 things for $1000 right now that I want – a person could learn a lesson from you – you know what life is about, it's not about a new toy, it's about being happy with what you have and making the best of it – I'll admit that I envy this about you ( this doesn't mean I don't want to remodel our place, some land in Balsam, and a late 60's bronco someday – but would you expect anything less?)    Since we were told about Grace's possible challenges, you, without complaints have done everything you could to give her the best chance.  You take care of her and all of us without complaining – you are such an amazing woman.  It seems like she'll be here any minute now and I just wanted to let you know how proud I am that you are my wife.  No matter what happens, you've done everything you could do – I know the added stress of our days to come could put a strain on some marriages – I vow to do my best to deal with this in a positive way and I just know that someday we'll look back on this as a time where we were very scared, but also as a time that helped us to better appreciate our marriage, our children, family, friends and we have little Gracie to thank for that.


I'll love you until I can't love anymore

– Rich