11/22/2010 -- I found this un published post in the DRAFTS folder of my email -- I started it on the day that Gracie was born, but never put it in my blog -- a little weird to read now, but what the heck...

Today is Will’s birthday (and potentially Gracie’s as well – which would be all too weird ) – there are a lot of things about our journey to come that scare the heck out of me, but I wanted to share this beautiful post that our friend Tracy wrote in honor of Will’s 5^th birthday.  Things like this let me know that our future will be just fine (scratch that, most likely, much better than just fine).  Once again, thank you Tracy and Steve for paving our way and thank you Will for being a shining example for our Gracie to follow for the many years to come.

 

Five years ago
today, a sweet little boy entered this world with a big surprise for his mommy and daddy. Five years ago today, we were scared of the future. We looked at our brand new baby and saw the struggles that he would face... the hurdles that he would have to overcome. We looked at his differences, his medical "conditions", his "clinical features" we saw a baby that would face a lifetime of trials. Five years ago today, we failed to see the true beauty in our son. We looked past his potential, the sparkle in his eyes, and the little dimple on his right cheek. We assumed that because he held an extra 21st chromosome, that he would be more different than his family than like us. Five years ago today, we could not have been more wrong. Will is a light to so many people who love him (and even to perfect strangers in the grocery store). Our lives are so much richer because he's who he is... exactly who God intended him to be.  Wishing a very happy 5th birthday to one of the biggest blessings in my life. Big things are in store for you, little man! We love you more than you know, and we thank God every day for YOU

 

 

 

A Day In The Life

Yesterday was a very busy day – This week I'm paying back the person that graciously took my turn in the on-call rotation at work while Gracie was in the hospital (I hand the cell phone off to a coworker tomorrow, but unfortunately my actual scheduled turn in the rotation is next week, so if it's possible, I'm wound even tighter these days due to the added stress of 24 hour availability for work).   Fortunately though, the fact that I got a few calls over the weekend allowed me to leave early so I could pick up Lylli from daycare and make it home in time for our first IFSP meeting - Individualized Family Something or other Plan -  The baby equivalent of an IEP.  It's very strange that we already have people coming into our house to work with her – If you know my view on the first few months of having a baby in the house, you know I have equated it to finding an abandoned squirrel in the yard -- you feed it and clean up after it – and in return, it just basically lays there – It's a lot of work!!!!   Fortunately for Gracie, and Lylli, for that matter, Carrie is much more nurturing than I am (I'll try to figure out what I bring to the table later – but for now, let's just pretend/assume that we both have strengths).  Now, I'm not all bad – I'll admit that the first time the baby smiles at me, I melt and at that point, I then agree that all of the effort is worth it – but it wouldn't be me, if I didn't rant about it.  I will also admit that sitting in the meeting is hard for me.  Normally, probably not always to Carrie's liking, I'm the one talking in things like this – but as most of you probably know, Carrie is a special education teacher and is far more qualified to be the one representing our thoughts – not that it stops me completely – there are still those moments where I interject with something I think input worthy and the room full of people look at me for a minute in silence, and then start up again with a pause  "OK, so what I was saying…" – I'm afraid as I learn more, I'm only going to have more opinions – but my philosophy is, if it's a meeting that I was asked to attend, then it's a meeting where my input is expected.  I think these first few meetings are basically formalities – we all know that she's very young and as far as we can tell is hitting the milestones for all babies her age.  As time goes by, they will address any concerns or issues that pop up.  I'm pretty sure many families would not be doing this yet, but given Carrie's background, we looked into getting it going right away so we can  give her every chance to succeed – However, we both agree that there is definitely a law of diminishing return with all of these people working with her – and are only going to encourage her to work at her own pace – if she's not ready for something or it becomes too overwhelming, that's OK – she will have her own personal definition of success and timetable – I think it will be a constant battle (for me) to not under estimate or over estimate what Gracie is capable of.  I'm not sure if that last sentence conveyed accurately what I mean –  what I'm trying to say is Gracie will be Gracie and if she can't do something, that is fine, but I'm not going to assume she can't either.  In a way, this is teaching me a healthy lesson about how all children should be raised – why is it that when a person is a certain age, they should know this, this, and this.  Maybe Gracie will be fluent in Spanish by the time she's two – which would be really cool because I'd really like to see how it sounds when that Gene Simmon's tongue of her's rolls an 'R' – "Hola, me llamo Grrrrrrrracie".  We joke that we're going to go as the band "KISS" for Halloween.  This kids tongue is almost as long as her eyelashes (of which are of movie star proportions).  OK – rambling again - this is probably a good time to segway to the rest of the night.  Following the meeting at our home we loaded up the car, which is no small feat these days (I wonder what the other cars are thinking when they see an IV bag filled with breast milk hanging from the hook meant to hold the fresh dry cleaning – I wonder if I can rig up something with an extra windshield washer fluid motor so we don't have to bring the pump with us in the car?) 

Anyway, there were so many people from the Roseville Area Parents group of families effected by Down Syndrome that have prayed for and followed Gracie's journey.  She was actually born on the night that this group last met, so after asking all the doctors, etc about it, despite our "no large group" policy, we made our way to the meeting  -- Half of the reason we went was to thank all of them, but we don't get out much and got so caught up in showing her off that we forgot that part.  Anyway – my earlier thought about only pushing Gracie to go at her own pace was a topic that was brought up by several families last night.  Although many things may be delayed, the magnitude of the celebration makes up for the extra effort it takes to get there – Lylli gets a couple M&M's for a poopy – by the sounds of it, Gracie may end up with a full fledge piñata celebration when she finally perfects that process (and why not?  She'll probably be fluent in Spanish as I said earlier).  I'm glad we went to the meeting, there was a couple there that found out, just last week, that their daughter, due in May has Ds as well as some issues with her intestines.  They too will be delivering at Abbott and then moved to Children's to stay in the same NICU as Gracie.  I hope we helped them a little with the advice we had for them.  I imagine it sort of felt like a group trying to sell them something – Its obvious that they're scared and as we went around the room, every set of parents spoke about their family a bit.   I had only been to one other of those meetings before – it was back when we were in their shoes – we had been fortunate enough to see, probably more than most, before we even knew about Gracie, that despite its obvious drawbacks at times, Ds also adds so much to a family – and I am learning that more every day.  Let's face it – we are somewhere between the experienced parents in the room and that new couple.  It was pretty cool to see the look in the other parents' faces telling thier stories – it was so obvious that they were thinking " if I knew then, what I know now – I would not have feared it as much or been as sad".  As bad as everybody wants to tell these new parents-to-be that its really ok, I suspect the pain and fear is a large part of what makes your family exponentially that much better and stronger when you come out the other side and realize that it's all good.  I'm pretty sure that doctors, nurses, teachers, and therapists are going to be a much bigger part of our lives from now on, but reading the faces of the other parents in the group last night – these small inconveniences will pale in comparison to the love that Gracie is going to bring into our family.  I've never been more confident that we can handle the Down syndrome part – we just need to get through all of this heart stuff first. 

 

Where do the weekends go?

Another one just flew by before I knew it. 

Thursday evening Pappy and Grammy swung over with some Chinese food for a visit with the girls. 

Friday evening we enjoyed some wonderful beef stroganoff that was dropped off via the meal train – We followed up dinner with a whole lot of nothing for the rest of the night– it was wonderful!

Saturday morning, Carrie and Gracie stayed home while Lylli and I had a little daddy/daughter date – Based on her recent obsession with any sort of children’s programming on TV, we felt that she would enjoy a movie in the theater, so we went up to the local complex and took in the 9:55 AM showing of the new Disney Movie “Tangled” – it was a cute movie – I must admit, I found myself bored a few times (it’s no Rocky) , but it was so much fun to watch her take it all in.  Her eyes got huge the moment she saw that giant screen.  We had some popcorn and an ICEE, some fruit snacks and the chocolate covered raisins that were supposed to be brought home for mom were especially enticing to Lylli – I think I literally had about three of them (the ones she fed me) and we managed to bring mom home, no kidding, about a dozen of them.  Yep – Lyl Loves chocolate covered raisins just like her mom!  She discovered them for the first time that day.  The theater was dark and I wiped her face up a little during the movie when I saw a little smudge of something under her nose – we walked out of the dark theater, I apparently didn’t look at her very closely at all as we made our way through the lobby and into the truck.  It wasn’t until after the very short drive home that we noticed that it looked like she was trying to reenact a scene in her new favorite movie – Willy Wonka and the Chocolate Factory – she’s infatuated with the little boy that falls into the chocolate river – in our house he is affectionately referred to as “The Chocolate Man”  -- it was unbelievable how much chocolate she actually had smeared all over her hair, eyebrows, face and clothes – The amount of chocolate in her ear was so bad that Carrie started questioning if she had an earache and was digging in her ears – there’s really no other way to explain how her ear was so full of chocolate.  I now know why the only other dad in the theater was looking at us funny as we were exiting the place.  OK, so I brought her home a mess, but I did successfully manage to keep a two year old relatively quiet throughout a whole movie as well as a mid-movie pull-up change in the men’s room.  I’ll admit, there are some of these parenting things that I’m better at than others.  Around 1 – Grandma Nita stopped by to see the girls.  She had been sick over the holidays and it had been awhile since she had seen any of us – we did the math and realized that she hadn’t seen Gracie since she had been off the ventilator in the NICU (best guess is her baptism).   We are happy, that as hard as it was to not see them, that she waited until she was no longer sick to visit the girls.  The rest of Saturday was pretty uneventful.  We enjoyed some delicious white chicken chili from the meal train for dinner.  Carrie and I decided to live a little on the wild side, made some coffee with some baileys in it,  and stayed up late enough to watch a little SNL with Jim Carrey – but of course both of us fell asleep before it ended.

Sunday, A very pregnant Auntie Dawn swung by in the morning for a visit with the girls and to give all of us haircuts – OK, all of us that needed them – As much as Lylli wanted Gracie to get a haircut like hers, it just didn’t make much sense since she’s only seven weeks old (today as a matter of fact) and pretty bald.  Lylli brought a cold home from Daycare and was a little on the cranky side for a good part of the weekend.  After visiting with Dawn for a bit, Lylli jumped right into bed when Carrie suggested that she may want to take an early nap.  I drove out to my mom’s place to help my stepdad load a broken down snow blower into his truck.  When I was there, I went inside to see Milo – he is such a sweet dog – after visiting for a few minutes and giving him some love, despite Milo’s desire and  attempt to come with me, I left alone and drove to Menards to roam the aisles in an attempt to design a gate system for the “dog room” downstairs that will contain him when he comes back home next weekend.  While at Menards, I checked out the shower levers, etc – after looking them over for a bit (and their prices) – I decided that I could jerry rig the one we’ve got that broke -- I know, famous last words – but really, I managed a pretty acceptable temporary fix by drilling a hole and putting in a small screw to hold it on – it really doesn’t look too bad and should work for awhile until we have the time to swap all of the shower hardware out.  I have been thinking about Milo a lot lately and he has to come home – he’s old and he’s my dog – and we’re his family.  He has lived in the same house since he was 8 weeks old.  He really is such a great dog who spent his whole life with Buck until he died this last year – In all actuality, Milo probably felt his loss more than we did.  I can’t blame him for having some issues now.  I had even gotten to a point where I was starting to be a little more at ease with the thought of Milo coming home, that is until I called Henry to go outside before bed last night and he ran by Gracie and almost ripped the feeding tube out of her stomach – luckily Carrie had made a loop and coiled it in her hand while she was holding her just in case something like that happened. 

Late Sunday afternoon, Carrie’s family came over.  They brought dinner  and hung out for a bit to visit (I’m trying to figure how many meals we actually have had to make for ourselves lately?  Our network of support is so great --  we promise to pay it forward).  Sounds like they made plans to do a dinner every 2^nd Sunday of the month – and coming from the guy who is always looking for a new tradition, I’m all for it.     

Eventually I found myself in the same spot I’m in every Sunday night – forcing myself to go to bed and dreading my week of work ahead.  I hope someday that I can find myself making a living doing something I love. 

All in all, I did OK with my diet over the weekend – nothing too drastic - I tried to eat smaller portions than I normally would.  But I do admit that I wasn’t as active as I should have been.  This week my activity level is changing.  Tonight I start the Couch potato to 5K program – for the next 9 weeks, I am going to head out 3 times a week to run and eventually ramp up to a 5K.  That gets me to  early March where I may try and enter one of the many local St Patrick Day 5K runs. 

Random Ramblings

Another one of those posts with a few random thoughts: 

• Forgot my computer at home today, had to turn around and get it – nice start to the day

• Got into the office and the computer I went back to get wouldn’t turn on – tech guy got on the phone with IBM – couldn’t figure it out, they need to ship it back – made for a pretty non-productive morning.

• Max has a four chamber heart!!  There are still some risks in his recovery, but all evidence points to walking away from Boston with a fixed heart.  One thing I’ve learned from these last few months is to absolutely not  accept when doctors give you bad news – Max’s mom’s search for an answer and a second/third/fourth opinion saved his life.  Can you imagine one day being told that your child’s heart is not able to be fixed – so your only option is to do a risky temporary fix to buy time to search for an answer and then a few difficult months later, walk out of the hospital with a healthy an almost certain future?  What an awesome day!!  Nikki (and my wife Carrie for that matter in our Gracie’s case) is just as much of a hero as the surgeon that performed the work.  Proof that you don’t have to take “No” for an answer and the power of positive energy.  They knew Max was going to make it and, guess what, he is… Positive breeds positive.  I pray that someday soon we can say the same for our Gracie.  

• I really need to fix the broken knob in the shower – Carrie didn’t like my vice grips fix idea   -- and that awkward blind searching with one hand while trying to keep the shampoo out of my eyes to turn the knob 1/8^th of an inch because the water suddenly is too cold to be comfortable is getting old.

• Milo is coming back home.  He has wore out his welcome at my mom’s  place – We are at a loss – not sure what to do with him.  He is such a sweet dog and on March 3^rd will be 9 years old.  Mastiffs don’t live much longer than that.  I was pretty sure that we could make it work at my mom’s place, but the stubborn old mutt gets separation anxiety and goes into their basement and marks.  I don’t get it – he’s completely trained.  Just nervous and as he gets old, it’s getting worse.  I’m upset because I know he loves it at my mom’s and loves living with his sister – but what can we do?  Not sure how we’ll manage in our little house with three dogs, Hurricane Lylli, and all of the extra equipment that comes with having Gracie home.  That little living room is going to be crowded.  Main goal before he arrives is to work with my dad to create a Milo proof gate for the “dog room” in the basement.  If any of you have seen some of my earlier posts, this is going to be no small feat.  Oh well, he is our dog –I guess I’m going to have to make a point of doing something every day to make him completely exhausted – because a sleeping mastiff, can’t get into trouble.  If Big Meat was a cat, this will be his ninth and final life – If something happens where Milo is aggressive in the least, I’m afraid that it will be time to take that fatal trip to the vet for the third time in the past year.

• The one time in my past that I kind of considered myself a runner (OK a 9 minute pace in a 10 mile race is not considered a runner in most circles, but to me, it’s my good ‘ol days)  – Bottom line is, once I could run a little ways, I sort of enjoyed it and I really shed the lbs – not to mention could eat and drink pretty much what I wanted because I ran 5 miles a day 5 days a week – and no I’m not talking about the days when I ran at the back of the pack with my nemesis, as Chimo calls him (the 70 year old guy with the goofy gate that I was neck and neck with in several 5k races in one of my more recent attempts at running).  This year I have vowed to shed 50 lbs – I’m hoping that I can push past the sore joints  as a result of playing college football and carrying around all of this weight – not to mention the inevitable shin splints to allow me to try to become a “runner” again.  I was thinking that I would try to do the Twin Cities 10 mile in the fall since the one I did in 2009 was more of a walk with my eye issues, etc – it truly was one of the most humiliating days of my life – That said, my good friend Dave was over for dinner last week (thank you Dave and Sharon for the wonderful meal).   He proposed that we run the Twin Cities – of course I thought he was talking the 10 mile – so said, absolutely – I figured what a great way to further motivate me to lose weight and to keep running – the idea of running the 10 mile with one of my best friends and hopefully redeem myself.  Of course, I forgot the fact that he married into the family of the crazy marine that runs the TC marathon in full gear, carrying the American and Marine flag, with an 80 lb pack on his back (love you Steve if you’re reading this – but you have to admit, to us mere humans – that’s just crazy!).  Dave was talking about the full marathon!!! – I know I’ve talked about it (ok I’ll admit blabbed without following through) in the past,  but really if I’m ever going to achieve it in my lifetime. I think now’s the time – Considering, the mailbox would probably require two water breaks, a snack, and a bathroom break today, I would have my work cut out for me – I know that we’ve got some very scary times this year and it may be just what I need to work through the fear and stress instead of turning to rum and fast food for comfort.  Man would I love to say that I ran a marathon (even though I really do hate running).  More to follow on that…

HAVE A GREAT WEEKEND!!

Mighty Max and his super hero cape - May he have super hero strength today

I’m a mess today.  We met a wonderful little boy named Max while we were in the hospital (Actually Carrie met his mom on an internet site before Gracie was even born – both looking for answers).   Max is around 6 months old and has some similarities to Gracie.  Max also has Down syndrome as well as a major heart issue.  It’s not super rare to have Down syndrome and there are many instances where typical children have one side of their heart that is not adequate, but to have a combination of these two is extremely rare and very serious because kids with Down syndrome don’t traditionally do well when treated the way they would treat a typical kid.  That said, Gracie’s first surgery was the Norwood Procedure – the first of the three phase surgeries that they would do to fix her heart if she were a typical kid.  The Down syndrome adds complexity – so much that the outcome is usually fatal.  There are many common heart issues that kids with Down syndrome are prone to – Gracie and Max don’t have the exact same issues, but the issues that they do have with their hearts are not the common ones.  They are very rare and very serious and we both, along the way, have been given very little chance of our babies making it.  Kids with Ds and hearts like these typically have not survived – I told the surgeon that did Gracie’s heart surgery when they presented the risks to us  – “she will survive and someday you can write a paper about it”. 

 

OK, back to Max. Max had the band surgery that we were first told that Gracie would have – he had it a short time before she was born.  We followed each other around the cardiac floor of Children’s hospital in Minneapolis.  Carrie and his mom, Nikki bonded only as two mothers with babies like this could and the last couple of days there, the kids rooms were right next to each other.  Gracie got to go home for Christmas to get strong and prepare for her next surgery in the not too distant future.  A few days after we left, Max was flown to Boston to prepare for an operation done by the world renowned Dr Pedro Del Nido.  This surgery will result in Max having a four chamber heart – Kids that have had this procedure are very rare – it’s a very small group.   I just know he is going to be OK and I pray that Gracie will be able to soon follow them to Boston and also have a successful 4 chamber heart surgery.  This is not your standard removing of the tonsils – this is some cutting edge trail-blazing stuff that only this Dr is capable of at this point.  I find myself remembering how I felt when they wheeled her back the day of her open heart surgery – I cannot stop thinking about this little boy and his family.   I just know that these two are here for a reason and met for a reason and are destined for great things.  I pray that Dr Del Nido works as perfect today as he ever has and that we can look back at this time as a time that made everyone stronger and what was needed to happen so Max can live the long life that he is destined to have.  And I pray that in the not too distant future, Gracie will too be part of the four chamber heart club

 

The procedure has just started as I type this – please keep Max in your thoughts