pacrosby
DIS Veteran
- Joined
- Nov 6, 2009
- Messages
- 1,947
ok, so I have about 15 minutes before my little Wish recipient comes off of the bus from Kindergarten. Time for some random thoughts.
I honestly can't really believe we are doing this. If someone had asked me if I would ever refer Matty for a Wish 6-7 months ago I would've given them a resounding 'absolutely not'. I was pretty opinionated (alright, so I guess I haven't changed in that regard. I'm still opinionated it's just that I have a different opinion
). Even when I decided in September to go for it I had some reservations. I remember feeling guilty calling and giving his cardiologist the heads up. She and I had had 'the conversation' before and although I knew she technically knew he would qualify for a Wish, I also knew that deep down she shared my previous opinion. You'd think that at my ripe old age I wouldn't give a rip what someone else thinks but, alas.......it's true.............sometimes I do.
Now that the ball is not only rolling but is picking up some serious speed, those reservations are gone. Magically gone! Hey, how appropo! I know this is right. I know that Matty deserves every bit of this special opportunity. In order to keep our sanity intact we tend to live in a healthy state of denial. It's not that we don't remember the frightening days of the past; it's not that we don't know about the uncertainties of the future......it's just that we prefer to not think about them. We choose instead to remember the miracles of the past, dream about the possibilities of the future, and live in the present. The motto in the Crosby house (that's our house) is "it's ALL in the attitude". Somewhere deep inside,though, deep down inside, beneath that positive attitude, we do remember. We remember how truly terrifying it was when we were given the diagnosis; when we sat waiting for those 4-5 hour open-heart surgeries to be over wondering if Matty would come out the same as he went in (ok, whether he would come out at all). I remember how horrible it felt to bring this child, my child, in over and over again to be poked and prodded. How terribly frightened he was. How he screamed uncontrollably whenever he came with me to my OB appts thinking the appt. was for him (I lost 3 babies btw Matty and Brennan.....so Matty came to alot of appts)......talk about white coat syndrome!. We remember the horrific nightmares this child has suffered for years and years...............nightmares that started the night we came home after his third open heart sugery (some have suggested it could be post-traumatic stress). And then there's the future. Big fat question mark. We tell ourselves he'll be ok. He's doing great now. We tell ourselves he will be one of the lucky ones. He'll graduate high school. He'll get married (his wife better watch out!). He'll have kids. He WILL be ok. But will he? I'm secretly haunted by the stories of children with HLHS who's hearts have failed. Children who were doing really well. Children who got through their surgeries without any major complications; without any residual problems. Children who everyone thought were going to be fine. And then their hearts fail. Sometimes they are 7. Sometimes they are 8 or 9. Sometimes they are fine until their teens. But then they get sick. More surgeries. Hospitalizations. The ever horrifying notion of........the transplant list. More terrifying moments. More uncertainties. I guess that's life though right? Nothing is certain. That's what I tell myself in very quiet moments when the thoughts creep up on me and I need to push away those tears. I could die tomorrow. Any of us could. But it's not quite the same is it? I know many of you reading this know what I'm talking about.
ok....that's enough of that!!!!!!!!!!!
Let's lighten this puppy up!
Disney is more of a favorite 'dream' for us than a favorite 'place'. I never even set foot in the place until I was in my late twenties (during a 2 year stint when I moved to Florida trying to prove how truly independent I could be.................ok, truth be told it was after a series of pesky relationships gone sour and a desire to go off into the sunset and start all over
). My husband was there once as a child (after a two day drive with mom and dad and 3 older brothers in a nifty old 1960-something station wagon......that must've been a hoot
) . My children? Well the youngest has only seen pictures. The oldest three (which includes my Wish child) were there for a few days when we piggy-backed on one of my husband's conferences at the Swan and Dolphin in the Spring of '05. A 5 yr old, a 3 yr old, a 2 yr and a 43 yr old cranky 6 month pregnant woman (yup, you guessed it......me!). We made the best of it, and definately had fun (all participants in Crosby vacations/getaways are required to have fun, even 43 year old cranky women soon to be expecting their 4th child in 5 yrs.......................hey, what can I tell ya, those are the rules
)
So you can plainly see why this family is so very excited about this upcoming adventure in Disney. And at Christmas time!!!!!! We're just gonna pee our pants!
Well, random thoughts finished for now. I'll be back. Hope you will too!
Pamela
I honestly can't really believe we are doing this. If someone had asked me if I would ever refer Matty for a Wish 6-7 months ago I would've given them a resounding 'absolutely not'. I was pretty opinionated (alright, so I guess I haven't changed in that regard. I'm still opinionated it's just that I have a different opinion

Now that the ball is not only rolling but is picking up some serious speed, those reservations are gone. Magically gone! Hey, how appropo! I know this is right. I know that Matty deserves every bit of this special opportunity. In order to keep our sanity intact we tend to live in a healthy state of denial. It's not that we don't remember the frightening days of the past; it's not that we don't know about the uncertainties of the future......it's just that we prefer to not think about them. We choose instead to remember the miracles of the past, dream about the possibilities of the future, and live in the present. The motto in the Crosby house (that's our house) is "it's ALL in the attitude". Somewhere deep inside,though, deep down inside, beneath that positive attitude, we do remember. We remember how truly terrifying it was when we were given the diagnosis; when we sat waiting for those 4-5 hour open-heart surgeries to be over wondering if Matty would come out the same as he went in (ok, whether he would come out at all). I remember how horrible it felt to bring this child, my child, in over and over again to be poked and prodded. How terribly frightened he was. How he screamed uncontrollably whenever he came with me to my OB appts thinking the appt. was for him (I lost 3 babies btw Matty and Brennan.....so Matty came to alot of appts)......talk about white coat syndrome!. We remember the horrific nightmares this child has suffered for years and years...............nightmares that started the night we came home after his third open heart sugery (some have suggested it could be post-traumatic stress). And then there's the future. Big fat question mark. We tell ourselves he'll be ok. He's doing great now. We tell ourselves he will be one of the lucky ones. He'll graduate high school. He'll get married (his wife better watch out!). He'll have kids. He WILL be ok. But will he? I'm secretly haunted by the stories of children with HLHS who's hearts have failed. Children who were doing really well. Children who got through their surgeries without any major complications; without any residual problems. Children who everyone thought were going to be fine. And then their hearts fail. Sometimes they are 7. Sometimes they are 8 or 9. Sometimes they are fine until their teens. But then they get sick. More surgeries. Hospitalizations. The ever horrifying notion of........the transplant list. More terrifying moments. More uncertainties. I guess that's life though right? Nothing is certain. That's what I tell myself in very quiet moments when the thoughts creep up on me and I need to push away those tears. I could die tomorrow. Any of us could. But it's not quite the same is it? I know many of you reading this know what I'm talking about.
ok....that's enough of that!!!!!!!!!!!
Let's lighten this puppy up!
Disney is more of a favorite 'dream' for us than a favorite 'place'. I never even set foot in the place until I was in my late twenties (during a 2 year stint when I moved to Florida trying to prove how truly independent I could be.................ok, truth be told it was after a series of pesky relationships gone sour and a desire to go off into the sunset and start all over



So you can plainly see why this family is so very excited about this upcoming adventure in Disney. And at Christmas time!!!!!! We're just gonna pee our pants!
Well, random thoughts finished for now. I'll be back. Hope you will too!
Pamela
