Baby Gracie Montage

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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.