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.