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!!!

 

 

Merry Christmas!

Merry Christmas! Love, Gracie

Baby Gracie Montage

Make video montages at www.OneTrueMedia.com

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. 

 

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       

CaringBridge Site for Baby Gracie born 11/22 at 6:47 PM

http://www.caringbridge.org/visit/graciedelaney

MISC

WEIGHT LOSS FOR DSAMN

So I’m finally at the point where I can start making money for the DSAMN.  I now weigh 290, so every lb I lose from here on will make money.  As of today, the total of all pledges adds up to $26.50 per lb.   Thank you so much to those of you that have pledged in support of this effort.  For those that haven’t, I encourage you to consider making a pledge (send an email with your per lb amount to daddythefatty@live.com) every penny raised in this effort will go to the Down Syndrome Association of MN.

 

GRACIE’S BIRTHDAY

We are in the single digits for days until Gracie’s due date on 11/25.  For some reason, I’ve got 11/23 in my head.  Of course, as coincidental as everything has been lately, we were talking last night and wouldn’t be surprised if she decided to arrive on 11/22  (Five years to the day since the arrival of our friend Tracy’s son Will).  Bottom line is she’ll be here any day – we are so excited for her to get here so we know what we’re up against.  Carrie has been going for tests every Monday and Thursday for awhile now – Gracie has been very active (breech one minute and not the next).  I believe right now she is pointing in the right direction, so the thought of  c-section is no longer there unless she flips again (and of course if something happens during birth that would necessitate it).  Yesterday she met a family at Children’s from Fargo with a 3 ½ month old son with what looks like the same issues as Gracie.  She was able to see him in the NICU hooked up to all of the machines.  She told me that she thinks it’s going to be hard for me to see – considering the one time Lylli was in the hospital (with RSV), I had to walk out into the hall to keep myself from tearing the people off of her as she cried while they were trying to get blood, etc. I’m going to have to agree with her.  Carrie has begun a caring bridge site through the hospital that we will add updates as we begin this journey with Gracie for friends and family to follow along ( http://www.caringbridge.org/visit/graciedelaney ) -- It’s been very hard for me to see how difficult this experience is on Carrie – I am so amazed by her strength and am very proud of her.  I know I am a major pain in the butt sometimes and am not always sure what to do.  I hope I do her justice while we go through all of this.  If I could take all of the scary bad parts of this from her, I would in a heartbeat.   

 

CARRIE’S BIRTHDAY

This upcoming Saturday is Carrie’s birthday.  Her parents gave her (us) tickets to a play called “Life Is Sweet” at the Lab Theater downtown.  Our tickets were for last Saturday’s matinee, but due to the sudden blizzard like conditions on that day, the play was canceled.  I am hoping that we can get there to the matinee next Saturday (on her actual birthday).  Several of the actors are people with Down syndrome.   I’ve been told that it’s amazing and that the talent of these actors is very encouraging for soon to be parents of a girl with Ds.    (http://www.tcdailyplanet.net/arts/2010/11/08/life-sweet-interact).  If we make it to the show, I wouldn’t count out the middle of the show as another moment that Gracie chooses to arrive.  Lylli has been so excited to sing happy birthday to her mommy on her birthday.  This is a very exciting time for us!!

 

 

Our heads our spinning – we are scared and excited.  We could use any positive energy you could send our way  I know this is brief and there’s probably many things that I am missing, but I just wanted to give a quick update on some things 

 

 

 

 

the r-word

I was watching the show Parenthood earlier this week -- there was a moment during a scene in a grocery store where there was a confrontation that resulted in the unpleasant fella in line referring to the boy with Autism as the r-word. The dad on the show slugged the guy – I became completely full of adrenaline. It was the first time I could somewhat relate to the dad on the show as a dad (to-be) of a child with a disability (and she's not even here yet!) - I'm not really sure what I would have done, but pretty sure the guy wouldn't have said it again.

My point is... I was reading the blog on www.deedahandme.com this morning and the following statement got me thinking about this:

"There are a lot of people breaking down walls for our children. One of the ways this is happening is the confrontation of the language used to describe people with intellectual disabilities–the battle to end the use of the r-word. "

They go on to mention the speech that I linked to awhile ago on my blog given by Soeren Palumbo regarding the use of this word (http://daddythefatty.blogspot.com/2010/08/very-well-said.html ).

I plucked this next sentence from a story online from the BBC (about the word gay) which explains it very well – Some words are "too often seen as harmless banter instead of the offensive insult that they really represent"

If you hear people using these words – Don't ignore it - say something! Also, if you use them yourself - think about how the way too common use of this word is very offensive and painful to many people - many of which are not even able to defend themselves. Not that it'll stop me from speaking, but I sometimes think I should refrain from saying some things these days as they become clearer to me as we begin the journey with Gracie in our lives because I do understand that there have been times that I've said and done things in the past without prior consideration of how truly offensive they could be to another person or group. There's nothing I can do about things I've said in the past, but I can change. That makes me think of something - In the past, as many immature males in my similar situation do, without giving it a second thought, I would say "that's gay" in reference to something that I didn't like or thought was un-cool. I am not proud of this, and will do my best from now on to speak without using words that offend. I understand this is not a perfect comparison to the r-word because the word "gay" is not a derogatory term when used alone like the N-bomb or R-bomb, but for my illustration, I'm talking about using a term in a statement that negatively generalizes someone or a group because of something they have no control over. "That's Gay" when used in society today is used to mean something negative but, for some reason most people, when they hear the phrase, won't even blink. My aunt is a lesbian and I didn't let that stop me from letting that phrase come out of my mouth every once in awhile when I was younger – no more – In all actuality, it's sort of ironic, because when I think about it - my aunt and her partner are two of the most amazing people and contribute way more to this society than most people I know – they are both beautiful, intelligent, and artistic. They are both passionate about their careers and spend much of their time at and away from work doing things that help many people – they both give way more than they take and I wish I was more like either one of them in so many ways. Being gay does not define either of them. It is a very small part of who they are, but it certainly is not negative. I mentioned that to illustrate that I do admit to have said things in the past without thinking that I am now ashamed of and to attempt to segway into something that happened yesterday. A very good friend of mine came over to help me with some work around the house – as we were BS'ing, he did something without thinking and said "I'm such an" r-bomb. I replied with a "hey now!" – he turned white as a ghost. The subject quickly changed – he called me later to apologize – I told him to not apologize to me and to just try and consider what he is actually saying – He is an amazing friend and the type of person, husband, and father that we all strive to be. He cares for other people and is honestly one of the greatest guys I know - I know for a fact he never uses that word and I'm pretty sure he will not do it again -- For some reason in most of society today, it's OK to use that word – but really it's not OK, it's as offensive, if not more, than any word that you can think of – so please, if you hear it, say something (be nice about it at first – I doubt an eye for an eye response will work in this case) and if you use it without thinking, please stop. It all starts with us.

Let me end by including something I took from the top of the www.rword.org website:

"Some people have mental retardation (intellectual disabilities). While mental retardation is not a bad word, when used to describe someone or something you think is bad or stupid it becomes another thoughtless hurtful word. People with intellectual disabilities are not bad. Their condition is not bad. The prejudice and discrimination to people with intellectual disabilities is BAD…and WRONG! Please stop using the word 'retard'. It hurts individuals and families of those with disabilities."

Pumpkins, Ponies, Presents, and a Party

What a great weekend.   Friday night consisted mainly of running some last minute errands in preparation for Lyl’s birthday festivities.  We went to Costco to get her cake (of which I attempted to turn into a horsey cake by adding a couple of toy horses – hey, she’s two and in her eyes, in the end, it was a horsey cake).  Since we were going there, I bribed a buddy to stop by and help me load up the floor model treadmill that I bought the weekend before that ended up having a sheared off chord (I’ll save that story for another day, but I’m sure you can imagine my joy when I used up favors by having my step-brother and brother-in-law come over to help me get it out of the truck and into the basement  and as they held the backend as I tried to steer the front end through the door, I noticed the chord was cut off two inches out of the machine – sure I could handle the scuffs from being a floor model, but – no chord was a deal breaker – at least we didn’t get it in the basement before we noticed) – OK, back to this entry – after hitting up the food court at Costco, we then decided to make a “quick” stop at the party store for some birthday decorations.  What a wonderful idea that was – “Ok, we’ll just swing in quick” on the Friday evening before Halloween – I can honestly say the “My little Pony” birthday section had plenty of elbow room, but unfortunately, the checkouts were for the two year old birthday supplies AND all of the last minute Halloween costumes/decorations as well.     On Saturday, we did our standard pre-event scramble to try and make our house not look like a bomb went off until either we say, good enough or people start showing up.  Carrie’s mom and sister came early to help, giving me the chance to run up to the store for some last minute items – The usual suspects showed for her Cowgirl birthday party.  It’s so cool to see all of the good sports moseying on in the door in their cheesy western shirts, boots, and cowboy hats – Lylli got a cute little outfit sent to her in the mail made by Papa Mick’s sister Cyndi in St Louis.  She was definitely dressed for the occasion and raring to go.  She had been ready for that day for months so there was no getting her to take a nap before the festivities began.  Our little house was pretty packed, so it was nice that the sun made an appearance  - we were able to start a fire out back.  People had the option to step out into the backyard and the kids got to play on the play set, etc.  The menu consisted of sloppy Joes and other simple foods prepared ahead of time, so that pretty much took care of itself.  The party went off relatively pain-free and Lylli loved being the star of the show.  She got many wonderful gifts that she is very excited about and got to spend some quality time with many people that care for her.    We were also glad to be able to show off Gracie’s nearly finished nursery (as with most things I do, it turned out to be a little bigger project than we original talked about – but we like how it’s coming together and people seemed to like it).  Saturday was the extended family version of her birthday celebration, leaving the three of us to celebrate a little more low-key on Halloween, her actual birthday – we woke up, had some Denny’s-to-go, and spent the morning playing with her new toys –we also gave her a couple of gifts that we saved for her actual birthday.  Her Grammy and Pappy gave her a little Dora ATV – it was torture for her to have to wait the 18 hours for the battery to charge the first time – she spent a lot of time on that once we got it going – luckily it only tops out at 2 MPH because she enjoys riding on it so much that she doesn’t pay attention to the fact that she has to steer it.  She hit pretty much every chair, door jam, cabinet, in the house – Once the morning dew was gone, Carrie took her out into the yard with it so she could feel what it was like to go a bit before crashing into something.  After we finally got moving, we went up to Bunker Stables and took her on a pony ride – she was very excited and loved it, although we both agree that it won’t be long before a pony ride just won’t cut it for her – no offense to Troll – our little furry overstuffed pony who was an angel, but Lylli was quickly focused on getting on one of those bigger horses.  I guess having a dog the size of one of those ponies at home that she tries to ride everyday has caused the utility of a pony ride to not last as long as it normally would –  But it was a great success – she really loves being around all of the horse stuff and I was so happy that the three of us got to do something special on her birthday.  After the stables, we made our way back home and had some hot dogs – per her request.  We attempted to put her down for a nap, but she wasn’t having any of that.  At dusk we put on her horsey costume and brought her out trick or treating for the first time – she was so excited as we left every house to get to the next one, but as soon as someone answered the door and started talking to her, she went completely still, stared straight ahead, and didn’t make a peep.  She loved it, but after about 6 houses, the idea that she had a pack of fruit snacks in her little plastic pumpkin was too much to allow her to continue – they actually turned out to be animal crackers in the end – but it was chilly and that was plenty for her to get the experience.  That gave us the chance to go back home to greet the other trick or treaters.  As we waited for the Halloweeners to ding the bell, we warmed up some leftovers and ate – after dinner, we took out some of her birthday cake and ice cream, lit 2 candles and sang happy birthday to her again.  Those are the moments that I am most thankful for in my life.  As Lylli’s night ended, we put on her new Dora flannel pajamas and I laid beside her in her bed -  we talked about all of the things she did over the course of the weekend.  What an amazing little girl – As we were talking, I got a little sentimental and told her that it had been the best two years of my life – she thought I was sad, so she took her hand and rubbed my face and said – “It’s OK daddy, don’t be said, I love you”  - how does that saying go?  My Cup Runneth Over

 

I woke up this morning and realized that its November.   The month that we’ve been waiting for with so much excitement and dreading at the same time.  We both think Gracie will come early, but even if she doesn’t, her due date is just over three weeks away.  We are as ready as we’re going to be.  All we can do is wait and pray that things work out.  I hope everybody had as good of a Halloween as I did.   Please keep us in your thoughts this next couple of months.   

 

 

RIP My Sweet Bodey

What a year it’s been – many things have made me question just about everything in this mixed up world.  Friday afternoon, after a long painful decision making process, I held my dog, Bodey, as the vet put him to sleep.  This was very hard.  We lost Buck earlier this year – he was my first dog and for many years, my best friend.  It was very painful to say goodbye to Buck, but he was getting old and his insides were consumed with Cancer.  To hold him while the doctor inserted the needle of pink solution was very hard, but he was already asleep because the cancer was found in the middle of an exploratory surgery.  There was no doubt in his case what needed to be done.  With Bodey, it was far less cut and dry.  At times he seemed happy, which made it easy for us to forget that the rest of the time, he was not.  I watched as his eyes drifted from what looked like confusion to becoming lifeless.  I held him so tight – on my knees - my head to his head and begged him for forgiveness.  I have wavered back and forth ever since,  between feelings of extreme guilt for playing God and having pride that I made the decision out of respect for him.   We thought about what we could do for Bodey to make his life better for a long time, but in the end we realized that nothing could be done.  Many long conversations with my wife and the vet resulted in our decision.  His congenital condition had gotten him to a point where his  quality of life was just not as good as he deserved.  It was my duty as his owner to decide for him  when the time was right and I truly believe it was the right time – but it was the hardest thing I’ve ever done.   Friday afternoon, Carrie, Lylli, and Myself spent some time alone with Bodey saying our goodbyes.  I brought him to the vet alone – I told Carrie that there was an 80% chance that I’d make it there – but as I drove,  out of the blue, I got a rush of strength causing me to sit up straighter as I drove - filling me with the feeling that I owed it to Bodey to be strong for him.  After it was done, they left me alone with him for a moment – it killed me that I couldn’t close his eyes – they kept popping open.  After I regained my composure, I looked into his eyes again and saw for the first time that they weren’t spinning – he was so still  – I imagined when he was alive, based on how his eyes constantly spun and darted all over, that his life was spent with that feeling you get  when you get off the merry go round at the park after the neighborhood bully traps you on it and spins you as fast as he can until you lose your lunch.  That’s how Bodey spent his life.  He could no longer move around very well, he often whined , and when he tried to get somewhere, he would inevitably crash into something – the frequency and intensity of those crashes were getting to the point where he was really going to hurt himself soon and I believe often did hit things so hard that it dazed him for a minute or two.  I felt that he spent much of his time embarrassed and wanting to do things that his body would not let him do.  As hard as it was to do, it was time.   

 

Dear Bodey –

 

I hope you can forgive me for taking your life in my hands.  I know you are in a better place.  A place where you and Buck are running today side by side.  OK, probably not Buck because you two really couldn’t care less about each other – but for my illustration and to make this a prettier illustration, let’s just say you are together.  Regardless – it’s a place where you are finally on that level playing field for the first time with the others that you are playing with.  You were such a sweet, gentle, innocent, beautiful boy with a wonderful soul – I hope that the time you spent with us was as good for you as it was for us.  I know there were many people that couldn’t understand why we brought you into our lives.  I could see in many of their eyes that they didn’t agree with keeping you alive – they couldn’t see, in you, what we saw.  I whole heartedly disagreed with them until recently.  The vet that assisted in your birth wanted you to be put to sleep right away, but you somehow made it from a concrete cage in Fort Dodge Iowa to our family and home for 4 ½ years.  I want to thank you so much for teaching me everything that you did about seeing life in a different way – quality of life is not measured by how fast you run the 100 yard dash.   In just over 4 weeks, our daughter Gracie will be born – she too will most like measure successes in her life much different than most.  I’ll admit that I’m scared about the many things we will face as a family with Gracie – But I want to thank you, sweet boy, for helping me prepare for them.   I am so sorry for those moments that I lost patience and got angry with you because of things that you could not control – when I reflect back on those times – my anger and frustration were the result of not being able to fix your issues and I’ll admit, I sometimes am not very good at knowing how to deal with things I can’t control.  I know there will be times with Gracie that I won’t be able to fix things, and I will use the experience with you to remember that it’s nobody’s fault and that it does no good to get angry in these situations.  You taught me so much that I will carry with me for the rest of my life and.

 

Rest in peace, my sweet boy – I will see you again someday    

 

You can only hope to contain Milo

Milo, our mastiff has a little separation issue.  He’s started breaking through the gates when we attempted to isolate him while we are away.  We recently started seeing  him staring at us through the front window when we got home and to top it off, to show us he wasn’t happy about being locked behind some gates in the basement, he’d inevitably pee somewhere.   I figured I’d show him – He’s never been crated and to find something his size is virtually impossible, so I opted for an outdoor kennel .  I put it together on Sunday and put it in the corner of the basement. The footprint was only 4 x 4, but had over five foot walls. I assumed with a couple of blankets, he’d be very comfortable.   Day one –  got home and he had drug it around the basement with him – he even somehow got an old cowboy hat off of the wall and chewed on that a bit but no pee.  Day 2 – figured I’d put a big trunk in front of it to barricade it in the corner  – got home – pushed the trunk out of the way, with what appeared to be ease,  and drug the kennel around the basement once again – When my wife got home she looked down to see him  standing right at the bottom of the stairs, still in the kennel, tail wagging, staring up at her – Day three – Kennel destroyed.  I won’t bore you with the details, but after several calls to the management of Menards, the Manufacturers rep, as well as the sales rep.  Apparently there is no warranty for this product.  I asked that we discussed the very definition of a kennel – to keep an animal, despite its efforts, contained and safe while the owner is away.  I went with the approach that I would have understood and would not have been back attempting to return it if it only lasted even a month, but three days seemed a little short for me to just write off as all my fault.   They eventually agreed that, “this one time only” they will allow me to bring it back and refund my money.   One funny thing the sales rep did say – “You may want to consider whether you are buying the correct product to contain your mastiff when the box you are buying has a picture of a Jack Russell Terrier on it”.

 

 

 

Hospital Tours

We took a tour of Abbott Northwestern Hospital's birth center yesterday followed by a meeting with a neonatologist and a tour of the NICU at The Children's Hospital.  They tell us that we are in the right place for our scenario.  That is about the only thing from yesterday's tour that I can hang my hat on.  Everybody there was extremely nice, but it quickly became very obvious that we are in for a very confusing and scary ride.  Gracie's situation is very serious – She will be delivered in a very institutional like birthing center – a team of 4 people, highly trained in resuscitating  babies,  will be in the attached room next door.  She will then be rushed to the NICU at Children's.  I will go with her.  Unfortunately Carrie is then left by herself until she is moved to her actual hospital room.  I was very upset to find out that she will not have any time to be with Carrie before being moved.  I know this is very important to her and could tell when she heard the news that it was very difficult for her to hear as well.    As soon as Carrie is recovered enough to join me in the NICU at Children's, she will.  Once in the NICU, she will be administered a drug to keep her heart pumping the way it did in utero (the ride side doing the work).   This will give a large team of cardiologists some time to closer examine Gracie and meet as a team to decide what can be done.  Once Gracie is stabilized, Lylli will be given 15 minutes to meet her little sister – it just breaks my heart to know that while Gracie is in the NICU, that 15 minutes is the only time Lylli will get to see her.   I am obviously very concerned about Gracie, but am also very protective and worried about Lylli during this time.   Lylli is my world, and the thought of her missing her mommy or daddy while being shuffled around from relative to relative is too much for me to handle.  Between Gracie in the hospital, time with Lylli, taking care of our dogs, not to mention the fact that I am still a consultant and still need to maintain relatively normal business hours at the office, this time is going to truly test our ability to multitask and manage all of the logistics that come with it.  We are less than 50 days from her due date – I know nobody ever really knows what the future holds, but in this case, we really don't know – all that we can do is remember  that she has already beaten the odds and  pray that she continues to be the fighter that she has been thus far.  If I could trade places with either one of them, Carrie or Gracie, I would.  I'm pretty sure we are very prepared to raise a child with Down syndrome, I just pray that everything works out and we are given that chance. 

 

Done Being the Before Picture

I am one muffin away from weighing 300 pounds. Judging by some recent pics, I'd venture to guess its one of those mini muffins. If I was 8 feet tall, I wouldn't sweat it, but at 5' 9", that's another story. The affliction that me and my ex-college teammates jokingly refer to as PAS (Post Athlete Syndrome) has gotten out of control. I imagine my insides are almost as fragile and on the edge of bursting as the button on my jeans. This past year has really got me thinking about my mortality. I tried to get into shape last year by training for the Twin Cities 10 Mile – I must have upped my food intake, because despite burning a lot more calories, I didn’t hardly lose any weight – On the day of the race I felt terrible. I showed up, easily the heaviest guy there, having next to no sleep the night before, my eye was in so much pain that I pouted and walked a good portion of my run – I’m pretty sure if you turned the results over, out of the thousands of people in the race, I would have been in the top 10. I ran the inaugural Twin Cities 10 mile several years earlier in just under 90 minutes – I know that is never going to break any records, but I would give anything for a 9 minute mile these days. That said, as many of you know, I started the year with a very painful eye issue -- Although the squinty right eye, scraggly beard, and salty attitude would've made it easy to pull off the pirate look -- It was a far cry from the Johnny Depp kind of pirate -- much more like the fat drunken turkey leg eating slob in the background that gets his head chopped off in an early scene instead of walking the plank (probably because they're afraid it'll snap) The side effects of the medicines and lack of activity, due to being miserable, caused me to balloon up (even more than usual). I was honored to walk my sister down the aisle with my dad this last January. They call tuxes monkey suits, but mine was more of a silver back gorilla suit with the 5X shirt they gave me to accomodate my prednisone swollen neck. I looked and felt like 10 lbs of bleep in a 5 lb bag -- That was not the way I would have chosen to celebrate one of the best days of my little sister's life. My eye has since gotten better and I pray that the eye issues are behind me. There were many doctors visits, blood tests, and a lot of pain - Picture the worst eye headache you've had -- that's how I felt from Sept ’09 - April ’10 -- I was miserable and it really got me thinking about how life is precious and short and I would not be giving my wife and children the respect they deserve if I continue to kill myself, one Supersized meal at a time. As my daughter grows older, I find myself having difficulties getting down on the floor to play with her or fitting inside her play house, etc. The internal Rich is a lot more playful and fun than the Rich people see today and I'm afraid a lot of it has to do with my weight issues. I don't want my kids to think that their dad can't do something - I want my girls to know a dad that will jump in the water with them or get inside the playhouse, sit on the floor, and have a tea party if that's what they want me to do. Not too long ago, I had a moment where I watched across the room as my wife and daughter looked at some recent home videos that we recorded on our little flip camera. My daughter kept saying, "I want to see Daddy". As I sat there watching them repeat the part of the video that I was in, I envisioned myself being dead of a heart attack and that video being the only thing that my daughter(s) could look at to see her(their) Daddy. It made me very sad. I recently went to a wedding -- My wife has given me a hard time in the past about how I don't dress up for occassions as I should (my apologies to those that have seen me at their event wearing cargo shorts) - Looking back on it now, I guess its kind of a defense mechanism. It was a wedding for her side of the family, and I do understand her point, so in an attempt to do the right thing, I got a haircut, shaved, and attempted to clean myself up. I wanted to look my best for her. In preparation, I looked through all of my clothes and found that I really have nothing nice to wear that fits me anymore. I went to the same store that I used to get my shirts because my arms,neck, and shoulders were too big -- and the years of squatting made my butt and quads too big to find normal dress pants. This time I had very different issues with the clothes I tried on. I spent a bunch of money to have some very large clothing tailored to fit. The outfit I got was very sharp looking in the store. Unfortunately, I was very disappointed when I actually saw myself in it and spent the night continually trying to keep the dress shirt tucked in that was being untucked by my belly every time I moved. I find myself in many situations these days that are embarassing to me because of my weight and don't want to spend the rest of what would most likely be a short life if I keep this up, not enjoying things like I'd like to because I have gotten to this uncomfortable size. I want to be able to go into any store and buy clothes or at least back the way it was where I'd have to ask the girl working by the fitting rooms if I looked like "that guy" because the arms were too tight on the shirt I was trying on. I'm sick of being afraid of collapsing my neighbors lawn furniture! Not too long ago, I was the big guy, that continued lifting weights well into adult hood - strong as a horse. Somewhere along the way, its changed to where I'm no longer the muscular guy with a gut, but am now just "the fat guy". I don't want to spend my life like this anymore and its truly time that I do something about it.

Over the last several years, I have come up some crazy ideas to try and motivate me to lose weight -- some have worked a little, but most have just resulted in me giving up and feeling even worse than when I started. On Thanksgiving, we are expecting our second daughter, Gracie. There are many obstacles in her way due to the fact that she has some pretty significant heart issues - most likely as a result of her Down syndrome. She will be born at Abbott and rushed to the NICU at Children's Hospital where a team of doctors will check her out and see if there is anything that they can do to fix her. Because of all of the uncertainties involved in her arrival, I often think about how much our life will change. Actually, Our lives have already changed a lot. I hate to even say this, but we are very scared that the doctors will not be able to fix her (And have been told that is a possibility). My wife and I are both extremely fearful of what's to come in our near future - it will most likely be very trying time for both of us. I cannot put into words how much I love my wife. It is selfish and unfair of me to put us in a situation where she has to worry about me too. The pending arrival of Gracie has forced me to rethink a lot of things. I have changed and continue to change, I feel for the better, on the inside because of it -- I want/need to change on the outside too. This time, I am going to do it -- I have to. Ok -- this is the part where I ask for your help. Yes, this is probably another one of Rich's crazy ideas -- but I think I've thought of a good one this time -- Something to keep me very motivated to get healthy and lose the weight and at the same time, raise some money for a wonderful organization.

So here's the idea -- this plan will generate donations for the Down Syndrome association of MN. I vow to weigh 240 or less before my birthday, Sept 14th, 2011 -- that is actually over 50 lbs. I will pay $10 per pound for every lb that I do not lose. That is $500 dollars if I lose nothing, however, I would love to raise a lot more than that. I am asking for people to commit to pledge in one of a few ways:

1. A straight contribution to the Down Syndrome Association of MN

2. A per lb donation for every lb that I lose regardless of whether I reach my goal or not

3. Or a per lb donation made only if I meet my goal - I'm hoping those that choose this option will make a larger donation, because I'm sure you're confident that I won't meet the goal in which case you would be out nothing

Whether you hate me or love me, are impartial, on the fence, or don’t even know me and just want to help raise money for a wonderful organization, I hope that by creating this long note, sharing my insecurities, and offering it to anybody that will read it, that you can see how badly I want to do this. I know that all of the points I have made should be motivation enough, but to help in this journey, I ask that you please consider making a pledge - even a quarter a lb would help greatly (and really, lets be honest, if you know me, you know that I'll probably be asking you to donate to the walk next year anyway ;)). All that I am asking right now is to send an email (to daddythefatty@live.com) telling me what you will pledge and in return I will do my best to meet this goal -- I will not be collecting money until the end of summer 2011 – For those of you that saw the site for Team Walking With Grace for the Step Up for Down Syndrome Walk this year - I intend to create another site next year for the walk and use that to gather my pledges from this challenge at that time. Thank you so much to those of you that donated recently to that site – please understand that I am not asking for money until this time next year – I am just asking you to pledge to this journey to be paid next year before the walk. My goal is to try and gather enough pledges to raise $100+ for every pound that I lose.

I am just in the inital stages of planning and I would really like to get the word out there -- I hope to get pledges from family and friends, but would love to also get pledges from corporations, friends of friends, etc -- so I ask that you please pass this along to anyone that may be interested in supporting this organization and/or help motivate this fat dad to get to a healthy weight so I can be there for a long time for my growing family.

I have a blog that I plan to use to document my progress - www.daddythefatty.blogspot.com (if you are reading this, you are most likely on it now) and have created a special email address for people to send what they plan to pledge as well as to send me notes of encouragement, etc. The email address is: daddythefatty@live.com . If anybody has any ideas that may help me meet this goal or an idea on how to get this out to the masses for more pledges, please do not hesitate to let me know.

I will start my end of this deal the moment that I receive my first pledge and not finish until I reach my goal

Thank you so much in advance from myself, my wife, my daughters and the DSAMN

Wish me luck,

Rich Delaney

Bodey

I've been involved in Dog rescue for many years.  I've had many foster animals in my home.  Carrie and I have played Santa and the Mrs several times for the pet rescue events over the years.  I've even been a board member for group.  About four years ago, I stumbled upon a puppy in Fort Dodge Iowa with Cerebellar Hypoplasia that had been in a kennel his whole life.  He was one of a litter of collie X's - half of which suffered from this condition.  My heart sank for this little guy – the last of the litter to find a home --  he was overlooked by everyone and after learning more about his zest for life, I couldn't let him spend another day alone in a kennel.  Despite having several dogs of our own, Carrie and I brought him into our home.  We changed his name from Tipsy to Bodey (felt demeaning).  I must admit that I may have been thinking more with my heart than my head.  Many people still ask me why this dog has not been euthanized, but if you could see his smile, you'd understand. 

 

He is potty trained (maybe an accident once every couple months just because it's hard for him to get out by himself at our home).  He loves everybody, especially kids - not to mention everybody that meets Bodey, once they get past the goofy gate, can't help but smile because he gets so excited to meet people.   I have been struggling with what is the best for him for awhile now -- unfortunately, our home is not set up the best for him and I find that he often gets lost in the mix sitting in a corner because he can't get around very well - he does a bit better in the grass, but as he grows older, he is becoming less and less mobile no matter what the terrain.    I wish we could pack up and move somewhere better for him, but given the economy and our current situation, moving is not an option.  If it was just a matter of the physical environment, we could probably make it work – I mean, we have to this point.  I sometimes wonder about his quality of life – I guess I had these grand illusions that he would just walk a little different, but still be able to get around – I wonder how he feels these days laying in the same spot for hours at a time until we pick him up to move him to the next spot that he will most likely lay in for several hours.  He isn't a small dog either – so carrying him around is a bit more challenging than if he were a yorkie.  I know that Carrie is concerned about the amount of effort it takes for her to move him while she is going through this volatile pregnancy – she shouldn't carrying him outside, but when I'm not there (she is the first to get home by an hour or two everyday) she can't just let him sit there after laying inside all day -- He's gotta go outside just as bad as the rest of them.  I can't risk anything happening to Carrie or the baby.     

 

I am so torn on what to do with Bodey – I've had to make decisions to have amazing animals put down because of owners that say they will give an animal a home and then decide because things change they no longer have a place in their home.  We have three other dogs that we're not getting rid of – Bodey is the one with the most special needs.  I think about the fact that soon, I will be the father of a girl with Special needs and will I love her any less because of it?  Absolutely not!  I feel like such a hypocrite considering sending Bodey to an animal sanctuary to live out his life?  I just know that when Gracie arrives, we will be relying on family and friends to take care of our animals while we spend the many hours at the hospital – Asking them to Let the dogs in and out and give them food and water is much less demanding than asking them to carry Bodey out and in and if he steps or lays in his waste to wash him up and carry him back in. 

 

"Home for Life" is an animal sanctuary in Wisconsin that takes in animals to live out their lives – most of these animals have special needs.  It's a great place, in theory, but after we toured it, we felt that it would definitely take 2^nd to a home with a family.  However, they do work with the animals with mobility issues and have a staff there 24 hours a day.  Bodey is a lot of responsibility – when we toured the facility a couple of months ago, we both agreed that Bodey would be one of the most involved animals at the sanctuary.  At the time, we decided that we couldn't send him there and needed to make him work in our home – but since then, as Nov 25^th approaches, I don't think we can do it much longer.  Of course, there are financial considerations for this option – this would be a minimum of $100 a month to send Bodey to live there.  Well worth the money, but I struggle to make that commitment as well considering all of the unknowns that we face with Gracie – Carrie may need to take a leave from work – which would make us a single income family – the $100 a month in that case could help a lot towards our family's monthly bills.    

Very Well Said!

She leaves alone for 20 minutes and...

I got home from work the other night and Carrie had dinner ready for us -- It was such a beautiful night that we decided to eat on the picnic table out on the back patio.  Dinner went pretty much as usual -- I spent my time trying to figure out how I could get the last piece of chicken from the pregnant wife without seeming like the fatty, Lylli insisted on drinking her milk from a cup without a top (which works well for a few minutes until she dumps it into her sectioned plate and then starts drinking from the ketchup and milk combo sludge that makes daddy gag), and Carrie pleasantly reflected on their mother/daughter day.  Carrie offered to run up to Dairy Queen for a treat and told me to stay with Lylli and play since I hadn't seen her all day.  I'm on call for work and about 5 minutes after Carrie left, my phone rang -- luckily, it was just a coworker explaining to me that she succesfully fixed the issue that had woke me up just before four that morning and assured me that I wouldn't be getting called the next morning (for that issue at least).  As she was explaining what she did, Lylli decided to drag a small plastic end table from the deck into the kitchen (goes with her two matching adirondack chairs made for little kids).  I turned just in time to see her standing on it while reaching way up on the fridge for her favorite puppy dog magnet as it started sliding out from under her.  I managed to lunge for her and sort of break her fall but she did still fall on her face.  We both sat in silence for a sec - me waiting for the wail and her waiting to see if it was worth it -- As I expected, she started screaming -- I quickly told my coworker, thank you, but I had to go!!  She lifted her head and stumbled to her feet with her hands covering her head, franticly screaming for mommy -- there was nothing I could do to console her -- she kept holding her face.  I started wondering if she was really hurt -- in a last ditch effort, I asked if she needed a bandaid -- in a full fledge cry, struggling to speak, she managed to tell me "YES!"   I carried her into the bathroom and got out a bandaid, unwrapped it and pulled her hands away from her mouth  - I asked, OK baby, where should I put the bandaid -- She completely stopped crying, pointed and said "My Leg" - I laughed, put the bandaid on her leg - she turned to me said "all better" and walked out of the bathroom as if nothing ever happend.

We Can Do This

I'll admit that, for me, it does get a little scarier each day, but as we get closer to the arrival of Gracie, it becomes more and more obvious that we are perfect for the job.  Its almost spooky how everything has pointed us in this direction.  As a special education teacher, Carrie has spent a lot of time with children who have Down Syndrome.  The first few years that I knew her (until Lylli was born), she would spend the week after school got out as part of the professional team at a camp, in northern MN, specifically for teens and young adults with Down Syndrome.  Five years ago, her good friend and co-teacher, Tracy, had a son with Down Syndrome -- They found out that Will had it the day he was born and we watched as the short period of time following his diagnosis went from fear and shock to happiness and joy - Tracy is now the head of a group for parents of children with Down Syndrome and has paved our way.  She is always there when needed -- and guess what?  The parent group meets right at Carrie's school.  We have had kids with down syndrome in our home for extended periods of time and even considered adoption/fostering.  I cannot tell you how many times prior to Gracie's diagnosis that I had seen Carrie looking at Reece's rainbow website (A site dedicated to adopting children with Down Syndrome from other countries).  And to top it all off, last fall Carrie graduated with her Masters in Early Childhood special education -- which means from birth on.    I'll admit, this whole thing scares the heck out of me, but if I have to go on this journey, I can't think of a better partner to have.  I see how wonderful of a mommy that she is to Lylli and am certain that when Gracie arrives, as long as Carrie is there to help me out, she is going to be in great hands.        

 

I am humbled by all of our family and friends that have been here to support us as we prepare for Gracie's arrival.  We have so much to be thankful for!    

 

 

Walking with Grace 2010

On September 26th we'll be participating in the annual walk for Down Syndrome.  For several years we have walked with Carrie's co-teacher's (and close friend) team in support for her son, Will.  We often run into some of Carrie's current and former students and their families (for those that don't know Carrie is an elementary special education teacher -- she has had many students with Ds).  It used to be called the Buddy Walk, but now in MN its called Stepping Up for Down Syndrome (some legal thing I guess).  Anyway -- it’s a real cool day for people in the community that have been touched by Down Syndrome.  It takes place at Como Park in St Paul.  They have food and a dj (you'd be missing out if you made the walk and didn't take a moment to appreciate the dancers on the dance floor at this event).  The Walk is a short jaunt around the lake, but is just a small part of why we are all there.  This year it has a whole new meaning to us.  We are excited that some of our family and friends will be joining us to celebrate the pending arrival of Gracie and help raise money for the Down Syndrome Association of MN .  It is our intent to continue to make this an annual event, but this year, for the first time, we will be walking as team "Walking With Grace".  We are very much looking forward to the day.