A Life With Grace

I had limited exposure to people with Down syndrome, up to a certain point, in my life.  I have a couple of amazing people in my extended family, but admittedly had not take the time to get to know them like I should have.  My wife is a special education teacher, so as I got to know her, I was exposed to some of her students, etc.  Her good friend/co-teacher's son was born about 6 months after we started dating.  I went with Carrie to visit them in the hospital.  Will was beautiful.  I think it was seeing someone with Down syndrome as a newborn baby that sort of started to change my thinking.  Even earlier in our courtship, before there was ever thought of us turning into a long term thing, Carrie had been exploring the idea of adopting a little girl that she knew with Ds.  It wasn't to be – in the end, it turned out that the girl didn't need a home after all.  As things got more and more serious, Carrie informed me that some day she wanted to adopt a baby with Down syndrome.  She repeated this often, and I heard her, but admit, most of the time, I ignored her.  While we were engaged, we spent quite a bit of time with one of her students.  She was from a single parent home – her young father was admittedly overwhelmed with raising his daughter.  She would occasionally spend a night or two, but there were a couple occasions where she spent a couple weeks.  I fell in love with that little girl – she was a little spit fire and knew how to charm a room.  Everywhere we would go, I was amazed to see the smiles that she would bring to everybody's faces, not to mention mine.  We even spoke seriously about adopting her if she ever needed a permanent home.  For two years, I played Santa Claus at the Miracle League Christmas party.  For many of these kids, I was the first Santa they had seen in person because a crowded loud line at the mall can be a bit too overwhelming.  I really loved doing that and for the most part managed to keep my beard and glasses intact.  But I do have to say, the most memorable kids to sit on my lap and tell me what they wanted for Christmas were the kids with Ds.  Between the people that I'd met, time spent at Carrie's school events, Miracle League games, and  Down syndrome walks, I was no longer as afraid of Down syndrome as I had been in the past.  Don't get me wrong, I was certainly not yet in agreement with Carrie when she repeatedly reminded me that someday she wanted to adopt a child with Down syndrome.  My standard answer after we got married was "Let's just see what happens naturally" – of course this was in attempt to buy time, hoping that after having some kids, she would forget her plan.  Never in a million years did I think that we would actually give birth to a child with Down syndrome.  I mean what are the odds that she and her coworker, both special ed teachers, working side by side every day, would both give birth to kids with Down syndrome.  We should have known right away that Gracie was an odds beater, because on November 22^nd 2010 – exactly 5 years to the day after Will was born, we became the proud parents to a little girl with Down syndrome.  The days leading up to her birth were much different than most families – early on she was given a 3% chance to be born and her diagnosis of Down syndrome changed her odds to 50% -- her heart was pretty messed up, so that was our main concern.  We knew beyond the shadow of a doubt that if we could get through the journey needed to get her heart fixed, the Down syndrome part was going to be a piece of cake – a lot of parents are faced with fears and tears when they become parents of children with Down syndrome.  We knew there would be challenges, but we were so excited about and determined to get that chance.  We love that little girl as much as any parent ever loved their child – if I could change places with her right now, I would without the slightest hesitation.  I can proudly say that we did everything we could to give that little girl the best chance at an amazing life – We sought out the best doctors, surgeons, and the best therapists – She was so beautiful and bright - So much more than just a sick little girl – so much more than what most people got to see.  Having Gracie  has changed me more than anything in my life.  I cannot begin to describe to you how proud I am to be able to tell you that I am her father.  She is and will be with me through every remaining step of my life and will continue to be just as much a part of my family as any of my other kids.  I can't begin to tell you all that she has taught me.  She has made every single person in my family a better person by having her in our lives.  She taught us so much about courage and strength and what we are all capable of.  We could never replace Gracie in a million years and would never want to.  We miss her every second of every day and have so much to be thankful to her for, including giving us that distinctive status of becoming a family with that extra chromosome – and if I can say, a damn good one.  It's because of that, I'm excited to say that we have started the process and paperwork to find and adopt a baby with Down syndrome.      

Tangled Up in Gray

It's gotten way too late on this Sunday - everybody else has retired for the night.  I turned the TV off awhile ago, but I just can't get myself to stand up and go to bed – I admit, I dread Monday every weekend, but I've especially been fearing this week for some time. As I sit here staring at and talking to the pictures of my daughter on the wall under the shelf with her remains next to the electric candle that we keep going 24x7 in her honor, I'm thinking about how earlier in the evening I was looking over my wife's shoulder as she put the final touches on this year's family Christmas card.  Since May 1^st, the toughest question I am asked is "how many kids do you have?" – it was such an easy question before that day.  There are so many things that changed and have become more difficult the moment we lost Gracie. I'm also thinking about the time we spent at Target today -  Despite the fact that we haven't yet even had Thanksgiving, the store was filled to the brim with everything Christmas – I'm usually all about the commercial aspect of the holidays – I love getting and giving presents, drinking hot butter rum, and eating way too many cookies, but this year, everything is different – and I guess now that I'm thinking about it, that's kind of saying a lot considering last Christmas was spent in Boston.  Our Christmas dinner was a hodge podge of microwavables and snack foods bought from behind the desk of the hotel lobby – Santa was so kind as to deliver gifts to Gracie's room because Christmas was only a few days after her final heart surgery – The surgery that finally fixed her heart – my sweet girl Lylli, still so happy to unwrap her gifts sitting on a window bench seat, silver bells and a three year olds carefree Christmas morning replaced by limited visitation surrounded by the beeps and alarms of the ICU - watching Lylli propped up on a stool leaning against the side of Gracie's bed happy to be watching cartoons with her sister on the goofy tv that resembled a dentist light hanging above - But the most important thing was that we were together – These last three holiday seasons have taught me more than any previous about this life.  Gracie was born in November, we got out of the hospital the day before her first Christmas, we weren't able to bring her out to see our family and friends that year.  This would have been her third Christmas, but the first one where we weren't dealing with pending or recovering from surgeries – the first one where we would have brought her out to see everyone.   I was really looking forward to all of my kids having a normal routine this year and will always regret that she never got to experience one.  Speaking of Thanksgiving day this Thursday, it would have also been Gracie's 2nd birthday.  A day that has been causing me more and more anxiety every day as it approaches. I will do my best to make it a happy day, but I'm afraid it's going to be a tough one.  This blog post was not meant to be a whoa is me sympathy plea – I wrote it because the best thing I can do to honor my daughter is to share what I have learned from her, so to anyone that will listen – As you prepare for your turkey day celebration and the pending holiday season, I just want you to try to remember that it's not about getting the most expensive Barbie Castle that you can find or about how many events you can fit into each day, it's a time to give thanks and enjoy the greatest gifts of all – your kids, family and friends.  I've always said that the toughest lessons you learn in life, you learn after you can use what you learn from them – I guess that is true for the incident that taught you that lesson.  But life is full of "If I knew then, what I know now" moments – and I'd like to suggest something based on what I've learned,   Take some time over these next days/weeks/months, a real moment to sit with your kids/loved ones and hold them and tell them how important they really are to you and to tell them how proud they make you – take a step back and really feel how blessed you are to have them to share times like these with because you truly never know what tomorrow will bring and if God forbid, that day comes where they are no longer around, you will regret every single kiss you didn't choose to give them.

I wish everyone the happiest Thanksgiving and holiday season 

Been a Tough Week

I got this thing in the mail today from the funeral home.  It told me that for many people, the initial shock of losing someone doesnt hit with the full effect at first, but after a bit, it hits you like a truck.  The author of the pamphlet even said that he recommends to businesses to let someone come back to work quickly after a loss, but to be prepared to give them some time away in a few months.  I found myself there this week.  The loss of my daughter hit me very very hard.  that coupled with a job that I don't like and the fact that despite busting my ass in the gym, I was mistaken last week at my work picnic for a very big and unhealthy guy at my work put me in a tailspin.  I went to my family reunion last weekend and we participated in the first annual Gracie Delaney Memorial 5 mile run/walk.  It was amazing but was tough -- I'm not complaining about it at all because it meant so much to us and I know this is the pain that Carrie and I need to go through in order to heal (or "grief work" as my wife's friend that also lost a child says) -- My wife did a Caringbridge entry for Gracie's site on Wednesday because it was the three month anniversary of her death -- she mentioned how we do have times of happiness these days, but they are all bittersweet without our Gracie to experience them with us.  I know its going to be so hard to watch all of the kids in my family around her age grow up -- We were so much looking forward to watching our Amazing Gracie defy stereotypes and knock down walls.  Carrie also mentioned something in her post that I really liked -- if losing Gracie is the price we have to pay to be able to say that we are her parents, then so be it -- The proudest thing in this world to me is that I am Gracie's Dad.  To be able to say that is well worth my pain and whether she is alive or dead, nobody can take that fact away from me.  Reading that pamphlet from the funeral home today made me feel like I'm not alone and that its normal for some to take awhile for the real pain to kick in, I'm not going crazy --- its just something I have to go through. 

I took the week off from the gym - I got an email from one of the owners of FXB asking how I'm doing and how he can help -- You know that feeling that you get that tells you to quit sometimes - as an athlete, the more you train and get into better and better shape, it gets easier and easier to suppress that inner voice, but when you are out of shape and struggling, it can sometimes be louder than any music they pump through the speakers at the gym - Let me tell you, that voice gets amplified tenfold when you lose your child -- there are those moments, lots of them, when you say WTF am I doing and FTW - I truly can't tell you how close I have been to walking out of a workout several times these last three months.  I'm ashamed of the fact that I've gotten to that point where I let that voice win sometimes.  That voice won this week - but I'm tougher than that.  I'm not going to beat myself up over it anymore.  There's absolutely nothing I can do to change anything in the past and I will no doubt live the rest of my life with a broken heart -- but that doesn't mean that life still can't be great and it all starts with getting happy with myself

Monday morning is 40 days before my 40th birthday.  It's on!
 

Smells Like Updog in here

I should just start every post after a certain amount of time between posts by saying that I, once again, am at that point where I don’t even know where to start.  May 2012 was the hardest month that I’ve ever had in my life.  I started the month by saying goodbye to my amazing Gracie (and will come back to post about that when I’m ready).  We had a celebration of her life on Friday May 4^th – a beautiful afternoon in the park (the same pavilion where we were married).  Hundreds of people stopped by to say goodbye to our girl – it was everything that we imagined.  The day was kind of a blur - there were so many people to talk to – but I noticed the obvious absence of a good friend.  Jayme was in our wedding in 2007 – I have decided to not post pictures of that day in this post because he was bald that day due to cancer treatment and I know he was uncomfortable during that time – So just over 5 years ago, he started his battle with brain cancer.  After the initial radiation/operation/battle they had everything held at bay.  The sensitive location made it impossible to remove the tumor, but they were optimistic that they had it under control – he followed up on a every so often schedule to check to see that things were OK and then awhile ago, they found more tumors.  I can’t say that I know all of the details and am kind of ashamed to say that – I guess I’d been so caught up in everything that we had going on with Gracie in the last couple years, that I didn’t dig too deep when I spoke with him.  I admit, due to my priorities, I took a step back from all of my outside relationships.  We exchanged emails and went to lunch several times in the last couple years – he was not the type to burden you with his problems.  I admire that about him – I am in a lot of ways, the exact opposite – people know when I’m going through things.  I guess I’m a drama queen.  I would always ask how he was doing, he would go into a little detail and then quickly say “but that’s nothing compared to what you are going through with Gracie” and turn the conversation back to her.  I would respond with “that’s not true”, but I didn’t press it at that point, because I knew he would rather not go there.  What a wonderful man – he knew he was dying, but didn’t want me to worry about anything more than what I already had on my plate.  Some people are best known by the things they say and people like me apparently try to get as many words out as possible – you know, throw it against the wall and hope something sticks – ie this blog.  But Jayme was the opposite – he didn’t have to say a lot.  Don’t get me wrong, he knew how to get the job done.  He single handedly grew a division of a company with no presence in the area into a very successful business.  He was a harsh negotiator and all business when he needed to be, but that had a time and a place – the rest of the time was using himself as the butt of a joke.  Where some attempt humor by talking, Jayme was the master of silence – he was one of the funniest people I knew and thrived on making people think he was serious when he wasn’t – someone at his funeral talked about his love of putting on socks with sandals and a “What you talkin’ about Willis?” t-shirt and then walking up and down the Vegas strip making people think he thought he looked good.  I had tried to call and text him a few times in the weeks before Gracie’s death and had not gotten a response, when I didn’t see him at Gracie’s celebration, I asked a few others that were close to him and they hadn’t heard from him recently either, we came to the conclusion that something had to be up – The next day, I started attempting to prod everyone that might know for more info and as suspected, one week after Gracie’s funeral, Jayme was put into Hospice.  I went to visit him on Saturday, May 12^th – he was weak and very tired.  A few of us hung out in his room for a couple hours, Jayme waking up once in awhile and adding in a one word response before falling back to sleep – We proudly continued our conversation of goofy stories all knowing that he could hear us and would appreciate the laughter as we reminisced about old times – When I left that day, he was pretty much sleeping, I crouched down next his bed and told him that it had been a good run, that I loved him, and asked him that when he got there, to take care of my girl.  I didn’t go back to see him before he died two weeks later – I regret that I didn’t go back, but I said what I needed to say and didn’t want to fuss over him – he wouldn’t have wanted that – OK, I admit, it was just too much for me at this time.  This past Saturday, I got the honor of being one of the pall bearers at his funeral.  They sang Amazing Grace at both the funeral and at the Cemetery.  I believe it was his way of letting me know that he indeed is with my girl and will make sure she is OK until I see her again someday.  It was a beautiful funeral filled with beautiful tributes from his closest friends, but was a very difficult day - I hope he knows what he meant to me – I will miss him very much.

Tough One Today

After a long sad Mother’s day, I headed to bed a little after 10 pm last night.  It was later than I would have liked given my planned 4 am wake-up time, but I just couldn’t make my way to bed because it meant that today (Monday) would get here sooner – that same sort of logic you use when you’re a kid. 

Once I finally got there, I noticed my not so wonderful neighbors felt it ok to let their kids/grandkids that show up from out of nowhere every few weekends yell and scream late into the night.  But even without the added noise, I’m afraid I would have had a tough time falling asleep.  I have so much on my mind these days – I battled the anxiety that today is my first day back at work since Gracie passed away.  It’s so hard to be here pretending that I’m still not devastated by the loss of my sweet girl – I really miss her.  It’s a pain that may dull over time, but losing her has changed me forever.  Despite being worried about going back to my office filled with pictures of her, I was more worried about being away from Carrie today – this is tough on me, but as the mom, much tougher on her.  I don’t feel like I did her justice on Mother’s day – I can’t convey to everyone how amazing of a mother she has been to our girls – I know what people have seen from afar has been amazing, but let me assure you as the closest one to her during Gracie’s whole journey that the tireless and thankless things that she did every single day were even more amazing than it would appear – I am as proud of Carrie as I am of Gracie.  We are working through things in our own ways, and I try to give her space, but I do prefer to be close in case she needs anything from me. 

To add to my already spinning head as I tried to fall asleep, I couldn’t help but think about my good friend who I learned was moved to hospice on Friday.  Several of us had left him voice mails and texts recently and hadn’t heard back from him – he was diagnose with a brain tumor 5+ years ago, the treatment went well and for a few years things were calm, but the last year or so they found some more growths and despite his character to not trouble others with his issues, it was obvious to many of his friends that things were getting worse than he lead us to believe – When I didn’t see him at Gracie’s funeral, I knew that things were not good.  He was in my wedding and, one of the few friends of mine to come and visit Gracie in the hospital in all of her stays.  Every time we would meet for lunch, I would ask how he was doing, but he would quickly switch the conversation back to how Gracie was doing instead.  He is a good friend, a creative type like myself – we always joked about starting a t-shirt company to sell shirts with stupid sayings – we even went so far at one point as to look at a setup someone had in their basement that they used for family reunions, etc on Craigslist  – we left the place to think about it over a couple of beers and we were all set to buy it, when we realized that we loved the idea of coming up with ideas, but neither of us wanted to actually do the work.  I wasn’t close to him growing up, but in my adulthood we have become pretty good friends.  We don't see each other all the time, but he means a lot to me.  I visited him on Saturday – he was pretty out of it.  I don’t have to tell you what hospice means, but it’s evident that it is only a short matter of time.  He was sleeping when I left, but before I did I asked him that if there is such a place as heaven, to please find my girl and make sure that she is taken care of – I’m sure he heard me and I know he won’t let me down. 

With all of this going on in my head, I laid there and tossed and turned until 3:05 AM when I finally made the decision that I had to text my workout partner Chad letting him know that I just wouldn’t be able to make it to FXB this morning – I just hadn’t slept and the idea of getting up in 55 minutes and facing today’s kickboxing workout seemed impossible at the time – of course now I regret not going but just I just didn’t have it in me today – I know a tougher man would have sucked it up and been there, and I’ve tried very hard to get back to my routine, but I’m afraid, with everything going on, I’m not quite ready.  I’ll be there tomorrow though for legs and abs - I can only take things one day at a time right now.   Sometimes I think I’m not sure if I would’ve started this if I knew all that was going to happen during this time, but then I realize that for some reason I was drawn to that place and the added support and stress relief it is bringing me could not have come at a better time – without the structured program, I’m sure I would be in an unhealthy spiral, but for the most part FXB has been keeping me positive and on the right path – to me it’s not about the 10 week contest – I lost my chance at that a long time ago, but it’s about the lifestyle change, and remembering more and more each day how much better life feels when I am healthy – but most importantly for me right now is the daily reminder that when things get tough in the gym (and they do daily in FXB) as in life, as bad as you want to give up and quit sometimes, as long as you push on and keep trying and working hard, things will be OK. 

Love ya 12

Words from Gracie's Celebration

I was emptying my pockets from that day and found the words I spoke at Gracie's celebration of life -- I wanted to have a record of what I said before throwing the printed copy away, so I am including them here:

 

Last time I prepared something to say in front of a group like this was a year ago as we prepared to go to Boston.  I came up with pages of things to say about our journey with Gracie up to that point – we were very scared, but at the same time, very hopeful – this time was much harder, believe it or not, I'm kind of at a loss for words. 

 

We want to thank you all from the bottom of our hearts for sharing in the journey with our Gracie.  I can't adequately convey to you how proud we are to be able to say that we are the parents of that little girl.  It is overwhelming to us to see all of the people that she impacted in her short life.  It's impossible for me to put into words what she has taught me.  She has made me a better man.  As cliché as this sounds – At night, in the sky there are millions of stars – most of them you can't see and the ones you do, look like they're staying in one spot – some brighter than the others, and once in awhile if you're lucky enough to be looking up at just the right time, you will see a bright star streak across the sky and before you know it, it's gone – often gone so fast that you are unsure even of what you have just seen – I know I'm biased, but I believe that Gracie was one of those shooting stars.

 

Many of you had never met her in person and I'm sorry you never got to see the Gracie that we knew.  She was not just the miracle baby hooked up to all of the tubes and wires that you saw in the pics from her hospital stays, but was a smart, funny, and charismatic little girl that we were so excited to share with everyone.  For those that didn't meet her, we didn't want your only memory of her to be in a funeral home in a coffin, so I ask that you take a look at the many beautiful pictures of her that are here today – She truly was as beautiful as she was strong.  I have needed to remind myself of her strength a lot these last few days and will continue to use that as the source of my strength in the difficult days, weeks, and years to come. 

 

As difficult as losing Gracie is to us, we are very proud to be able to say that we tried everything we could to give her the life that she deserved.

Goodbye my sweet Gracie

Gracie Update

For those of you that follow Gracie's Caringbridge site, this post may be a bit redundant because I am going to steal some of Carrie's posts.  But there are so many people that have approached me and asked about Gracie, I thought I would give a quick recap of what's been going on this week.

Recap of Saturday:

Gracie had a cold for a few weeks, but at the end of last week it has turned to pneumonia. She was on antibiotics for a few days after a visit to her family doctor, but her breathing got a little too rough and her oxygen needs too high for us to be comfortable with her at home. So, on Saturday morning we brought her to the ER at, our home away from home, Minneapolis Children's.
She didn't respond to her initial antibiotics, so they were thinking it was probably viral, which makes it tough because you can't really fix it, you just have to WAIT. She was on 3 liters of oxygen and her sats (oxygen saturations) were still only in the upper 80s to low 90s – She was very crabby for a couple days and was getting worse – it was obvious something was really wrong.  They did several nebulizer treatments to try and get her breathing to be easier.

Recap of Sunday (Carrie's whole cb update):

What a day! Not one I care to repeat any time soon! Gracie continued to do ok through the night and, with the help of some meds, even slept. But, around 4 am, her breathing and sats got worse. She was working very, very hard to breathe and even with 5 liters of oxygen going up her nose, her sats were only in the 80's. So, they decided to intubate her. They put her on the ventilator this morning around 8:00. With that came sedation meds to keep her calm and, although we really hate seeing her on the ventilator, she is much more comfortable.
Around the same time, the nurse noticed that her pupils were very different - one was big and the other was very small. Yikes. They took her downstairs for a head CT to make sure everything was ok. They didn't find anything on the scan, which is very good. The theory is that when the doctor put a central line in Gracie's neck, she irritated a nerve that caused her pupils to react. They still haven't gone back to normal, but no one seems worried about it.
THEN - as if that wasn't enough for a day - her labs showed her potassium levels were really high and she hadn't had a wet diaper for a long time. Something was happening with her kidneys. They did a kidney ultrasound that showed her kidneys were swollen. Nobody knows why they were not working, but they needed to start working to clear the potassium out of her system. If potassium gets too high it can make the heart stop. The next labs showed her levels even higher - critically high. They gave her several meds to lower her levels of potassium and some interventions to get her to pee and now, finally, she is peeing a little and her potassium is within normal limits. They even had the IV in to allow them to do dialysis, but - knock on wood - it doesn't look like we are going to need it.
What a day. We were pretty worried and stressed this afternoon, but things are looking better now. She is still on the ventilator with lots of support, but her sats are getting better and her blood gases are great. Hopefully they will even be able to wean some of the ventilator settings soon. She is definitely not out of the woods yet, but I feel like I can breathe a little now.
The good news is, her heart is doing good :) Ironically, all of this has nothing to do with her heart. It is a little more stressed, but it is understandable with all she has going on.
Thank you so much for your thoughts, prayers and words of support. It means a lot to us. I really hope my update tomorrow will be much more boring

Monday (Carrie's CB recap):

Gracie had a much better day today. She is still pretty sick, but things are going on the right direction. Her potassium is still low - they might even have to give her some to keep it from getting too low. She is peeing lots now. Apparently the kidneys get "stupid" when they are recovering and they forget to hang onto anything. As part of the healing process they are going to dump out anything that goes in. So, we have to be very careful about making sure she doesn't get too dehydrated. It is a delicate balance of making sure she has just the right amount of fluid in her body.
Gracie is still on the ventilator and probably will be for a while. She has lots of junk in her lungs that needs to get out before she will be able to breathe easy without the ventilator. They have been able to wean the oxygen down from 80% to 40% and some of the settings have been weaned so she is getting less support.

Now:
So the last couple of days have been about the same – nothing too exciting – her mascot is the tortoise during these stays – slow and steady.  Gracie is still critical, but her kidneys are slowly getting better.  She'll probably spend a couple weeks in the CVCC at Children's.  I'm hoping that she is off the ventilator soon – yesterday she was awake quite a bit and for the most part was relatively calm.  It's so nice to see her with her eyes open and calm.  I know it's just a matter of time before she turns back into the spunky Gracie that tries to rip the ventilator out – It's a battle for the nurses, but that fight has gotten her where she is today (I try to think about how tough she is when my mind is telling me to stop during my workouts).  I will never get used to seeing my child on a ventilator and for those of you that have seen yours, you know how devastating it can be to see that silent cry and not be able to do anything about it.  The last couple of days were tough on all of us – I think Carrie said it best – the adrenaline of how serious things were over the weekend has now worn off a bit and we both kind of got to that angry phase.  This poor little girl has been through so much in her short 17 months of life.  After all of these ground breaking, life saving heart surgeries she's been through – the latest in Boston over Christmas and now she's in critical condition in the ICU because she caught a cold.  Enough is enough!!!  But I couldn't be more proud of how tough she is.  And speaking of proud – I can't do my wife justice when I attempt to put into words what she does for our family – she says I'm too wordy, so the best compliment I can give her is to keep it short, but I am amazed that at 35 weeks pregnant, she, without complaint, stands/sleeps next to that hospital bed just in case Gracie opens her eyes so she knows that Mommy is there – I am a very lucky man.  Let's hope Gracie comes home before the arrival of our son – that would add a whole new level of complexity!!!
My last post was about my first week at FXB.  I was not able to make it last Saturday because of Gracie's condition – I gotta admit, my inner 3 year old was a little jealous of those that got a perfect attendance sticker on their check in card for last week.  I was able to make to the 9:30 class on Monday and have figured out a solution for someone to watch our other daughter, Lylli, so I can go to my normal 5 am class.  I'm burning the candle at both ends these days, but am determined to not let any excuse to sidetrack this effort.  As long as I'm not denying my highest priority, my family, during this difficult time, I will find a way to get there – FXB is the tool that I am using to make sure that I am around for these guys for a real long time.  Wish me luck -- I am adding another level of complexity for a week starting today – I have to carry the 24 x 7 on call pager for work.  The last thing I need to do is add more stress these days, but whatever doesn't kill me, right?

Thank you for all of the people that have found this blog – the support has been great!! 

FXB Week 1

As often happens at the start of a new important chapter in my life, I think to myself over and over about how I need to write a blog post about it, but as times goes by, I become overwhelmed at the thought – writing is not exactly my greatest strength and I struggle because I want to adequately reflect in words what is happening. 

 

That said – a week ago today, I walked into a room full of people to do my baseline testing to kickoff the 10 week program at FXB.  To be honest, I questioned what I was doing there that day.  A room full of people is the last place I want to be – especially doing things that point out my obvious weaknesses that I'd been denying for awhile now.   It was very humbling – on that day, I did a step test to check heart rate, I ran a mile, did pushups, sit-ups, tested my reach with a stretch, got my body fat tested, got weighed, and had them measure my chest, arms, waist, hips and thigh – not to mention posed for a "Before" picture wearing nothing but skimpy shorts.  Needless to say, after seeing my results of all of these tests, I had never been more ashamed of where I've gotten myself physically.  It's amazing what a guy can convince himself of – I mean, I wrestled in the state tournament in high school, was a scholarship football player in college, bench pressed 500 lbs, squatted a lot more than that and studied and lived the bodybuilding lifestyle enough to understand what I need to do to cut fat.  All of that, of course I'm still "somewhat" fit, right? – I mean, sure there's some extra weight, but I'm still a stud, right?  Nope.  It's that same skewed thinking that got me a little skeptical about taking advice from a bunch of confident younger guys walking around with no shirt sleeves on (ok older than me too Tim) – it quickly became obvious to me that these guys were not the d-bags that I convinced myself they might be, but that it was simply my personal defense mechanism for dealing with where I'm at.  I think it's a testosterone thing, but those thoughts couldn't have been further from the truth.   

 

I woke up Monday at 4 AM – I was still very sore from testing and wondered what I was getting myself into, but made it to my first class – cardio kickboxing.  I won't bore you with all of the details, but let's just say that I looked at the clock about 5 minutes into the warm-up and was already ready to call it a day.  Everybody there is so encouraging – it's a staple of the program that all people, even after they've been there for awhile need to encourage and help the newbies – it's an extremely positive environment and that team spirit is engrained in you from day one.  It's a strange vibe there – like everybody has stumbled upon a great secret that they feel obligated to share.  I know only after 1 week that is how I feel.  I don't think I have lost any weight yet, but can feel muscles that I haven't felt in a long time.  I can honestly say that after the second day, I already noticed myself walking a little taller (now sitting down was another story).  I am the furthest thing from a morning person, but I have been excited everyday to get up at 4 in the morning to get ready for class – it's a weird combination of being deathly afraid of the Hell that I'll go through for 45 minutes and excitement that I know this is going to get me where I want to be.  The first couple days I was embarrassed about not being able to do everything and about how out of shape I am, but it quickly became obvious that nobody cares a bit about where I'm at as long as I am doing my best to get better.  They leave me alone enough to battle my own demons to push myself, but are always lurking around the corner to give me a little "encouragement" when I let that voice in my head tell me to sandbag.   

 

This week, Gracie came down with Pneumonia and has spent most of the nights alarming due to low oxygen saturations and screaming – there have been a couple nights where I've only gotten a couple hours of sleep, but I still made it to class.  I've been exhausted, but am proud that I got there – I don't know if the old Rich would have done that.  I have followed the nutrition plan to a T and can't wait to get back for another workout to take the next step in the right direction.   I can honestly say after one week of this program that there will be a day that the name of this site will be ironic. 

 

All of that said, I was unable to make it to class this morning as Gracie has gotten worse, so we had to bring her to Children's where she has been admitted – hopefully for a very short stay.  She is stable and they are pretty sure that everything is good with her heart, so hopefully it's just a matter of getting her what she needs to fight the pneumonia.  As bummed as I was to not be able to go to class today, I know where my priorities lie, but I am also once again reminded of how important it is for me to get healthy – My family needs me. 

 

I'm going to stick with this and train and run that marathon in the fall and maybe someday I'll even get under 250 so I can shave off this beard?!  I will continue to record my journey

The Girls

OK - I admit, the beard is getting out of control

It has been almost a month since my last post – I need to pick this back up again – knowing people read about what I'm doing helps keep me on task. 

Gracie went to a cardiologist appointment last Friday – she is the healthiest that she has been – despite having a cold at the time, the doctor was very pleased with where she's at.  She has also been making great strides in all of her therapies - we are very happy with the directions things are going.  She has even gained some weight.  She weighed in at a whopping 16 lbs 5 oz.  Its hard to believe that in just over a month, it will have been a year since we went to Boston for her Bivent repair.   

Lylli is also doing great as always – she is such a character and makes me laugh every day – there are times that this 3 ½ year old phase gets a little overwhelming, but that is to be expected – I am very proud of both of my girls. 

Carrie is now 33 weeks pregnant and is ready to be done – I think she has finally gotten to the point where she and her body know that she is done having babies after this one.  She was saying the other day that she has either been nursing or pregnant since February 2008.  Yikes!  Besides that, the pregnancy is going well and we are all very excited to meet baby Mickey.  If he is born on Memorial day (two days early), our kids will have birthdays on Memorial day, Thanksgiving, and Halloween this year.

I am now in my 5^th week of the 30 week marathon training program.  Its going Ok but I feel like I should be further along - this week has not been the best.  I did my scheduled 2 miler on Tuesday.  On Wednesday morning, I was walking through my yard on the way to my bus stop - I got to the curb and my slip-on-shoe came half way off.  This caused me to stumble and fall off the curb - I landed 8 inches lower than I was standing square on my knee caps in the street (my feet still somewhat up on the curb).  Luckily, I caught myself before I landed on my face.  I hit pretty hard.  My initial thought was that of embarrassment because I was certain that my neighbors across the street saw the whole thing through their wide open picture window, so I popped up quickly, wiped off my jeans, shook off the cobwebs and made my way to the bus stop.  After sitting at my desk for several hours, I got up to walk around - my knees had stiffened up and I was in some pain – I was still thinking I would try to run, but by the time I got home, I came to the conclusion that it was in my best interest to skip my scheduled three mile run and ice/rest my knees instead.  The last thing I need right now is a nagging injury and I didn't want to hurt something else because I was favoring my knees.  I recently decided to make a slight change to my running schedule to not have three days in a row with my training runs, so yesterday was an off day.  I was thinking I might get caught up last night, but decided against it.  The knees still hurt a bit, but I'm hoping to get out for a couple mile run/walk tonight. 

If you use your creativity, on a SOMEWHAT related note, for lunch today, I went to my favorite sandwich place in the skyway.  I had to tell them that they wouldn't be seeing me for awhile – you see, today's sandwich was a last hurrah of sorts  - I have been doing this running thing and I feel like I'm making a little progress, but not as much as I should be.  I have to accept the fact that it's just as much about my eating and weight as it is my miles on the road – In order for me to do this thing, I really need to lose some weight and admittedly made the decision to not worry about my eating too much because I assumed the calories I burn running, would undoubtedly take off the pounds.  Well apparently that is not enough – so I have decided to commit to a 10 week program at FXB (www.facebook.com/#!/FXBBlaineMN).  I have heard wonderful things from people that have tried this.  It will take a lot of hard work, organization, and dedication -  10 weeks of working out at 5 am 6 days a week while also getting in my mileage for my marathon training program at night and doing it all while minimizing the impact to my family.  I plan to be very disciplined on my diet - hopefully it will kick start this weight loss thing – This beard is getting out of control and I vowed to keep it until I lose some significant weight.  For those of you that don't know the story behind the beard, I started growing it when we were out in Boston in November for Gracie's 6 month follow up appointment -- I decided to keep it when we found out that Gracie needed to go back for surgery over Christmas.  Since we were in the city where all 4 major sports have successful dynasties, I started calling it my playoff beard.  Once everything went well, I sort of felt like it was giving me some luck and decided to keep it a bit -- I thought it would be cool to lose some weight and then shave it off to reveal that some of the chins that were there when I started growing it were gone -- it then turned into a game because of the comments that Carrie sends my way on a daily basis leaving no doubt how she feels about it.  It has now become something that I use to remind myself of what I am working to accomplish this year -- I have only trimmed it a handful of times and will admit, its sort of gotten out of control -- I'm hoping, eventually, the beard comparisons will change from Santa Claus to Forrest Gump.   I go to FXB tomorrow at 9 AM for baseline testing: situps, pushups, mile run, etc – as well as weigh-in, measurements, and the dreaded "Before" picture.  I understand there are around 80 people signed up for this 10 week program.  My hope is to be in the running for the biggest transformation at the end of these 10 weeks (winner gets $1000).  I will keep you updated on this effort

Just thought I would check in – Hope all is well with you!!       

Photo at the finish 3/16

St Patty's Day Run

Friday night as I prepared for the Get Lucky 7K, I’ll admit, I was scared and moping around.  As I was unlacing my running shoe to attach the time chip, my wife heard me mumble – “I don’t know why I’m even bothering to put on this stupid thing, it’s not like I want anyone to know my time anyway”.  It’s at that moment that she reminded me of all of the things that Gracie will do in her life where she may be the one that is out of place.  Being the fat guy in a crowd of runners is hardly a comparison to having Down syndrome, but she really gave me something to think about.  When I start to feel bad about where I’m at, I need to get better at not kicking myself for getting there, but instead be proud of what I’m trying to do – I’m out there for the experience and to better myself - I need to enjoy it, and do my best.

I woke up early Saturday to prepare for my day, I followed my shower up with a couple pieces of whole grain toast with peanut butter and bananas and a couple glasses of water – fuel for the run.  After getting on all of my stuff, and a few nervous bathroom breaks, I sat on the edge of the couch anxiously awaiting my ride – we got downtown, parked in a ramp near the event and followed the sea of green towards the starting line.  I wore my new daddythefatty.com shirt in an attempt to draw some attention to this site and hopefully more specifically to the link to my Boston Children’s hospital fundraising page.  I am so out of my element at these things, but was determined to try to enjoy the event.  I really have to say, I kind of failed in that department – I was pretty much a whiny baby most of the run –I truly believed that my shins, calves, and arch supports were the reasons I had to walk so often, but in hindsight, I am still questioning my mental toughness – I know darn well there have been many times in my past that I pushed past extreme discomfort and pain to accomplish a lot harder tasks than moving forward at a pace just barely quicker than a walk.  My peers used to brag to others about my toughness.  I’ll admit, I kind of liked being known as the tough guy and it kills me to mentally struggle the whole time to want to give up and walk – maybe that’s one of the reasons this thing is so emotional to me -- I find that when I get moving, I am consumed by huge rush of emotions thinking about the journey we’ve taken with Gracie.  I want so bad for these girls to be a dad that they can be proud of and I get so angry at myself when so much of me is telling me to stop – I’m at the back of the pack and feel like there’s nothing I can do about that.  I need to remember that there is something I am doing about it just by being there – putting myself through the embarrassment to hopefully and eventually get to a place physically where I need to be.  Even though I’ll never be at the front of any organized run, I will continue this journey and I will work to be proud of where I’m going rather than being upset of where I’m at.   I think one of my friend’s said it best when hearing that I was still behind him at the finish line (I’m paraphrasing) – Oh well, there’s no grade in this test, it’s a pass/fail – Meaning, I either did it or I didn’t – and I’m happy to say that I did.

Sunshine On My Shoulders Makes Me Happy

What a beautiful day yesterday!!  73 degrees in MN on March 14^th – Even I can’t complain about that.  It was almost a little warm.   It made me think a bit about what I’ll be up against in the dog days of summer.  Last night I joined my buddy Dave for our scheduled Wednesday night run.  This is going to be very much a mental game for me – I’m still over 300 lbs and with that comes the additional aches and pains when trying to turn someone my size into a runner.  I was talking about how I realistically need to lose at least 80 lbs before the marathon and that even if I lose 25 lbs, I’ll still be 280.  Dave made a good point - he said every pound counts and when I think about how 25 is just a drop in the bucket, to consider carrying a 25 lb bag of dog food with me as I ran.  That said,  all of you guys annoyed by my presence at the organized 7k run this weekend, imagine throwing your mother-in-law on your back and trying to run a 7K – that’s where I’m at - so I’ll try to stay out of your way, but please think of me being out there as something positive as opposed to something in your way.  Anyway, I was starting to say that the hardest part about this training will be the mental aspect.  I’m not able to run the whole distance that I’m tasked with in the plan yet, so I’ve decided that I will only count towards my assigned distance when I’m actually running – last night, including a half mile warm-up walk and a small cool down walk, it took us 4.6 miles (and over an hour) to accomplish running 3 miles.  At one point, I was whining so much that Dave yelled over to me “knock it off”.  This is tough on the ego for a guy like me – If this was pushing through one more shoulder press, dead-life, or squat I could do it – that is something I am used to (or used to be used to).  But pushing through the mental great wall of China that I have in my head as soon as I get out of my comfort zone when running is going to be the hardest part.  I don’t know if this is a weakness that I’ve always had or I’ve slowly evolved to this point, but I don’t like it and plan to face it head on until I am no longer the guy that gives up.  Pushing on while being tired from a run is nothing compared to what my daughter Gracie has done - she has shown us how to not give up and I need to remember that when I'm feeling sorry for myself midrun.  I’m pretty sure it wasn’t much of a workout for Dave (and I need to start learning to not apologize for that fact so often), but for where I’m at, it was a pretty good workout and I promised him that I’ll be a little better every time we meet– I’m even a little sore today – the good kind of sore.  I’ve been so good at having huge ideas and not following through with them – so much so that it makes me embarrassed and ashamed.  I was proud of myself when I drove away from his house – I’m going to do this 

Day 1 Run is in the Books

Yesterday, I arrived home from work, to a 3 year old bouncing off the walls.  Carrie was trying one of her new recipes from Pinterest (which should probably be a whole blog post in itself – Because of the things she finds on that site, we’ve never had more delicious meals) – This particular recipe, being a newly found treasure, and first attempt, it caused her initial estimate of a 5:30 mealtime to look like it would be closer to sometime after 6.  Since my scheduled run was a short one (1.5 miles), I saw it as an opportunity to get it checked off my “to do” list before dinner.  Because the 3 year old was in such an energetic mood and so happy to see her daddy, I didn’t feel right leaving her there while Carrie cooked (one handed, I might add, with Gracie on her hip) – I saw it as a good opportunity for some one on one time , so I asked Lylli if she wanted to come with me.  It made me very happy to see how excited she got when I asked, but in the scheme of things it may not have been the best idea to get the most out of my workout.  After finally getting her out the door, and air in the tires of the jogging stroller,  I strapped her in and we headed out – she very much wanted to run too, so I had to promise her that she could get out near the end and run alongside me for the rest of the run – I am still VERY out of shape, I struggled the whole time trying to run and answer the barrage of never ending questions coming from the seat below me – the one most frequently asked being “daddy when can I run too?”  I covered about a mile and a half total (admittedly only running about a mile of it – maybe 1.25 if you count the quarter mile that I ran with Lylli in our final stretch).  We ate dinner and hung out, but eventually my conscience got to me (and probably a little bit of the fact that the contestants on the Biggest Loser are now at that point I dread – all weighing less than I do).  I couldn’t let that run after work be the one to set the tone for this program, so around 9:15, I headed out for another short run (just over a mile).  I’d like to say it was a quick one, but I’m struggling – at least I covered the mileage that I was supposed to.  I’m very much looking forward to heading over to my buddy Dave’s place after work for a 3 miler.  I know I slow him down with my walking, but I’m getting a little better every time we meet – I’m very thankful that he is so willing to help do this with me.  This year, I will not let him run that race alone.

 

 

 

 

 

 

 

30 Week Marathon Training 1st run tonight

Today will be my first official run of the Hal Higdon’s Supreme Novice 30 week marathon program.  According to this plan, there will be 148 running workouts between now and October 7^th when I accomplish my goal of completing the Twin Cities Marathon.  When I put it that way, it scares me a lot - it kind of seems impossible that this number of workouts will be enough to get me ready, but I am going to give this my best effort and hopefully I can finally follow through with something.  I plan to use this blog to record this attempt as I go.  Above you will see a pic from the “run” that I did on New Year’s Day – You’ll notice the “playoff” beard that I started somewhere around the time we went to Boston for Gracie’s last surgery -  I’m keeping the beard for awhile – I use it as a daily reminder of what I’m working to accomplish this year.  It’s gotten much bushier since then, and frankly, it really helps keep people from sitting next to me on the bus to and from work.  I should only resemble the guy in this photo when I cross the finish line on Oct 7th.  Please wish me luck – I’ll really need it. 

Shirt Idea 2

I am so excited to be working with the Children's Hospital of Boston to use my attempt at running a marathon to raise a little money for the institution that I am so indebted to for saving my daughter's life (more to follow on that).  Because of that, I wanted to make a shirt for the organized runs that I participate in to try to draw some attention to my blog -- I recently posted a couple pics of a shirt Idea that I had, but changed my mind and decided to go with a less angry note on the back - Here is what I came up with 

Happy Valentine's Day 2012

A year ago today, Valentine’s Day 2K11, we found ourselves back in the hospital for Gracie’s 2^nd heart surgery for an emergency shunt revision.  The first attempt that day didn’t work, so they had to put her back on the heart-lung bypass machine for a second time to give her an even bigger shunt.  We thought she was on her way back to her room soon, when in fact, they were just starting the second attempt – That night was one of the hardest/scariest nights of my life.  Carrie and I were sitting in Gracie’s room in the cardiac intensive care unit – Carrie was on the couch passing the time on her laptop and I was sitting in a chair flipping through the channels – In the middle of the room there was a large empty space surrounded by machines where Gracie’s bed had sat prior to wheeling her away for surgery.  The wall coming into those rooms are essentially one big glass door – they accordion swing wide open to get the bed out, so when you sit in the room while surgery is going on, it’s kind of like sitting in a three walled room designed for a TV sitcom – and with just as much of an audience because everybody that walks by knows that something’s up when the doors are wide open and the bed is gone – I spent the evening in that chair watching TV and exchanging no need for word “thank you’s” with my eyes and head nods to the people walking by looking in at us with their own no word “I’m sorry’s and we’re praying for your child”.  It was a very long day considering we had no idea that she’d be having surgery that day.  At one point someone stuck their head in the door and told us that she was off-bypass.  We could finally breathe those first breaths of relief - Only a heart parent can understand what it means to hear those two words “off-bypass” when your child’s heart is stopped and a machine is keeping them alive while the surgeons cut and stitch on their tiny body.  After hearing that, we were able to relax a bit and send out the usual happy texts to family and friends waiting for updates, etc – after quite awhile of sitting there talking about how she had done it again, etc – we couldn’t figure out what was taking so long, we figured at any minute they would be asking us to step out of the room so they could wheel her back in and get her all situated with chest drain tunes, dozens of machines and meds, etc., but instead, a nurse practitioner came into the room and told us that after coming off the bypass machine, her blood saturations started to plummet and that they had to put her back on and attempt to give her a bigger shunt – It had been a long time since we had gotten the good news from the other person that she was off bypass, but the first we had heard of this – we thought everything went great and she would be back very soon – instead, out of her mouth came the words I will never forget – “If it doesn’t work this time, there is nothing more surgically we can do, and you need to consider whether you want to put her on life support or not (Ok, now that I think about it, I don’t know exactly how she said it – but you get the idea).  I will never forget how I felt at that moment - I’d run into some pretty big guys as a running back and wedge breaker in college, but I can honestly say, I had never been hit so hard in my life!  There were no tears at that moment – just complete shock – I was numb – all I could do was think about what I could do to help Carrie and Lylli if something happened to Gracie.  Another part of me was very angry at the hospital - wondering if they would be saying this to us if Gracie didn’t have Down syndrome?  Thank God, eventually, late into the night, we got to talk to the surgeon and everything seemed to work out.  I believe it was during that stay that we sent updated echo and pictures to the doctors in Boston and we got the news from them that they thought they could fix her.  Since then, she has undergone 2 surgeries and a cath procedure in Boston – she still is a pretty sick kid and has a long way to go, but she is getting better every day and we are very hopeful that the worst is behind us.  Valentine’s day will now forever be a day where I remember how precious life is and remind me to be thankful for every single moment that I get with my kids. 

Shirt Idea

Here's the shirt I'm thinking of making for the Get Lucky 7K in March.  A little note for any runners that lap me and are annoyed if I unintentionally get in their way

My Girls

Medtronic Twin Cities Marathon Welcome - HERE WE GO!!!

Medtronic Twin Cities Marathon Econfirmation   Dear Rich Delaney: Congratulations! You are officially registered for the 31st annual Medtronic Twin Cities Marathon on October 7, 2012. We are looking forward to another spectacular day in the Twin Cities. If you haven't already, you should receive email confirmation from Marathonguide.com, our registration partner, with your credit card charges. We want your experience to be enjoyable and memorable. Please read the following important information:   Race Day, Sunday, October 7                                                                                                                                                            Wheelers start at 7:55 a.m., all runners at 8:00 a.m. Click here for a course map and course information.   Registration Confirmation Visit Registration Confirmation after registering to verify your information, search for friends or family, and check your start corral status once it is posted.

Its a ....

Well today was the big day -- 20 week ultrasound for the baby due in May. 

 

It went well, everything looks good and we saw all 4 chambers of the heart.

We are very excited!!

 

Now I just have to convince the wife that "Buck Delaney" is a cool name -- based on her response to it so far, I'm guessing that's not going to happen.  
 

Does This Giant Gut Make Me Look Fat?

Oh boy is my wife going to be proud of this one -- NOT!

In true Bendoeslife fashion, I was all fired up and got up the courage to take a "before" pic in my boxers, but after I started thinking about it, I had this vision of seeing my picture pop up on all of my co-workers computer screens, so I'll admit, I'm using the one with the flash that makes it difficult to make out my face in case I need to deny that its me. But make no mistake about it -- there it is, in all its glory, my giant Belly. What kind of 300+ lb idiot posts a picture of himself in his boxers for the world to see? One that obviously needs to change his ways and get his act together -- everybody has been so forgiving when I haven't followed through in the past -- Maybe a little public embarrasment will help!

Dear Gut -
My friend, it's been a great run and man, it was a lot of work and a lot of fun watching you grow -- you've grown far beyond my wildest dreams. I'm afraid that its time for me to say good bye -- don't worry, it won't happen overnight, but I intend on spending a lot of time chipping away at you until a good portion of you has gone away -- If I can put the dedication into getting rid of you that I did helping you grow, I will not be keeping you (or at least all of you) around for long -- no hard feelings!
Love,
The rest of Rich

Dick Hoyt

Last week before I left CHB (Children’s Hospital of Boston), I saw this on a corkboard near the elevators:

I was pretty bummed because I knew I would be flying home a week early and would have loved to go see Dick Hoyt Speak.


For those that may not have heard of Team Hoyt: Dick Hoyt has a son named Rick. Rick, (taken from their site) due to oxygen deprivation at birth was diagnosed as a spastic quadriplegic with cerebral palsy… When he was around 15 years old, Rick told his dad that he wanted to run a local 5 mile benefit run for a Lacrosse player that had been paralyzed. Although coming in almost last place, Dick pushed Rick in his wheelchair the whole 5 mile race --- (again from their sight)That night, Rick told his father, “Dad, when I’m running it feels like I’m not handicapped” – This started what has been decades of and thousands of races including several Ironman’s. Their story moved me before, but now that I have become the father of Gracie, I can’t even tell you how much their story means to me – I’m honestly tearing up right now trying to type this………OK – I got myself back together – if you haven’t watched this youtube link below, I urge you to – I am at a loss for words on how to explain it




All that said, my amazing pregnant wife, after the doctors took Gracie away this morning to remove her broviac tubes and do a sedated echo, sprinted across town to the building where he was speaking – walked in with only about 5 minutes left into a room full of people wearing suits and ties, stood in line and told him about how we, too, are parents of a child with a disability and how much an inspiration he is to me and that I wish I could’ve been there to see him speak. He told her to wish me the best of luck in my efforts and they took a picture together. It means so much that she did that for me. I’m a lucky man!!!