I just went 48 hours without accessing a computer. It was really weird.
The amazing people at Make-A-Wish called a few weeks ago and wanted to say thank you to us for the radio interviews we did for their radio-thon back in December. Although doing the radio interviews had meant pulling the kids out of school for an additional two days, we didn't mind. It was for a good cause. And believe me, the kids didn't care they were missing two more days of school. How scholarly of them.
Anyway, Make-A-Wish called and said they'd like to send us to the Ritz Carlton. . .at Bachelor Gulch for two nights. A donor, who I've actually had the opportunity to interact with while we were working out the details of our stay, wasn't able to use their timeshare and she had read about how you can donate nights to Make-A-Wish. Which is what she did. Very cool.
Hilariously, Bachelor Gulch is about 20 minutes from our house. We've been there before to ski, but have never stayed there. The kids were off school on Friday, so Thursday after school, off we went to check in at the Ritz. May I just say that the Ritz really knows how to spoil people. The skiing was terrible--it just hasn't been the greatest snow year around here--but who cares? We were too busy hanging out around the fire pit roasting marshmellows, sitting in the hot tub, watching movies, and just marveling at what it's like to be a tourist in our own town. It's pretty fun to see life here as others do when they come to visit.
As an added bonus, my sister Erin and her family came from Utah and stayed in our house while we were at the Ritz. While I did clean the toilets before they got here, their accomodations were slightly less posh than ours. Fortunately they came up and joined us for a day of skiing and marshmellow roasting.
I don't know why, but marshmellows seem to taste better at the Ritz.
Reality check: I need to catch up on 48 hours of e-mail.
Showing posts with label Make A Wish. Show all posts
Showing posts with label Make A Wish. Show all posts
Sunday, March 8, 2009
Monday, December 22, 2008
NYC at Last!
Finally, our trip to NYC!
You can see the grown up pictorial of our trip HERE.
Declan's view of the trip is HERE.
And Finn's view of the trip is HERE.
Here's a rundown of what we did:
Monday, December 8
-Drove to Denver in a driving snowstorm.
Tuesday, December 9
-Went to KOOL 105 FM and taped a segment for the Make-A-Wish Colorado radiothon that was scheduled to air on Monday, December 15.
-Visited our Denver clinic to say hi and Merry Christmas to everyone. Finn's little buddy Joshua happened to be there that day getting his chemo and IGG!
Wednesday, December 10
-A limo picked us up at the hotel in Denver at 5:30am. The boys didn't know that we were going to the airport via limo, so it was a fun surprise.
-Our flight ended up being delayed because of heavy rains in NYC (nice), so we landed about 45 minutes late.
-Yet another limo picked us up at LaGuardia, and George, the driver, graciously detoured us to McDonalds so we could get something to eat since they starve you these days on planes.
-After a lunch stop, George took us on the "scenic" route and drove down the east side of Central Park on 5th Avenue on our way to the Plaza Hotel.
-It was pouring rain.
-We got to the Plaza and Mickey, who works outside, met our limo and whipped open the door with a flourish, welcoming the boys to the Plaza Hotel and showing them both where Kevin (Macauley Culkin) pulled up when he arrived at the hotel. We were ushered in with pomp and circumstance--the manager came out to greet the boys (and us) and were all very nice.
-Eddie, a bellman who was there when Home Alone 2 was filmed there, escorted us to our room. He was so great our whole stay, paying special attention to the boys and showing them around.
-When you stay at the Plaza, you have a butler. Isn't that hilarious? So even though there was a plate of cookies and candy and milk for the boys and a cheese and fruit plate for us, our butler also brought us complimentary drinks. I think I had water. Crazy, I know.
-We headed out to find some dinner. In the pouring rain. Ended up getting slices of pizza because places right around the hotel didn't look too kid friendly (read: expensive).
-We did a lot of walking. The boys did a lot of complaining. I immediately missed the BOB stroller, which we had sold via Craig's List and the woman picked it up from us when we were in Denver the day before. Come back, BOB, I miss you!
-When we came back from dinner, Finn complained that he didn't feel too well. . .
-We all piled into bed and watched Home Alone 2: Lost in New York. What else would we watch? I think I fell asleep before the boys did because I woke up later and had to turn off the TV, which was a struggle because it's this high tech panel system that the boys had already worked out, but I hadn't.
-Around midnight, Finn woke up screaming and crying and clutching his left ear. After trying to soothe him for about 45 minutes, I woke Eamonn up and told him we needed to get Finn to a doctor. I called the front desk where I was informed that a doctor could come directly to the hotel. . .for a minimum charge of $800. Hmmm, what are our other options? Urgent care about 30 blocks away--which Eamonn pointed out is only about a mile and a half away, but it seemed like much further. The good news is that when you're traveling through NYC at 1am, there isn't much traffic so your cab fare is pretty reasonable.
-Three hours and a double ear infection later, we were back at the Plaza. We all laid back down at about 4am.
Thursday, December 11
-We all slept in.
-Instead of going out and exploring in the morning, per our original plan, we stayed at the hotel to maximize our time at the Plaza!
-Eddie gave us a behind the scenes tour of the Plaza that is closed to the public because it is now private residences. Finn enjoyed sliding across the floor to the elevator like Kevin.
-At noon another limo picked us up and took us to John's (I think) pizzeria where we picked up a cheese pizza and ate in the limo. . .just like Kevin. Unfortunately, Finn was still a little under the weather and didn't enjoy any pizza.
-We drove to FAO Schwarz, which is ironically across the street from the Plaza so we just went in a big circle in the limo (which took an hour because of NYC traffic!).
-Finn rallied while we explored FAO Schwarz which was, of course, crazy crowded.
-Our driver on this day, Carlos, was waiting for us when we came out, and took us to our new hotel, the Doubletree. Can I tell you how cool it is to have a driver waiting for you on the street? I could get used to this!
-Originally we were supposed to go to the Empire State Building, but we figured Finn's head might explode on the elevators, so Make-A-Wish rescheduled that visit.
-It was pouring rain.
-So instead, we went to Macy's and ate chicken soup, which thrilled Finn to no end, mailed letters to Santa to take part in the Macy's donation to Make-A-Wish for every letter put in their Santa mailbox, and then we went to Santaland. I remember going to Santaland on the 6th floor of Lazarus in downtown Columbus growing up. This was reminiscent of those days! I loved it! So did the boys. Declan sat on Santa's lap. Finn did not.
-Then we went outside, in the pouring rain, and looked at the Macy's windows, which were my favorite of all we saw.
-There was a huge line of people to get a cab, so we took a pedi-cab back to the hotel. That guy worked hard for his fare with four of us piled in there. At least NYC is relatively flat.
Friday, December 12
-Up and out early to the Today Show. Eamonn left at 5:45am to secure a spot, but called by 6am to tell us that we needed to get there ASAP to be sure we got in. I had to rush everyone out of bed and we took off. Then there was the wrong turn I wrote about in the earlier post. Sigh. Such a great way to start the day. Combine that with being hugged by a giant mouse and Finn was none to happy. Declan was all about getting on TV though.
-After the Today Show, we went back to the hotel and gorged on the breakfast buffet.
-The rain had cleared away and the skies were beautiful at last. We went to Central Park and took a carriage ride. Finn wondered if he could ride in the trunk-like thing at the back like Kevin. We said no.
-After our carriage ride, we enjoyed several hours walking around Central Park. The boys played in the park and we walked to the Dakota Building and Strawberry Fields.
-We all went into Tavern on the Green to go to the bathroom. Eamonn and I both took boxes of matches so we could say we'd been there.
-We ate lunch at a hot dog stand. Disappointing. The hot dogs have shrunk!
-We were due at Rockefeller Center to go ice skating at 2:30pm. We got there a little early so we went for hot chocolate at a deli on a side street. Coming out of the deli is when we had our James Gandolfini Encounter.
-Skating at Rockefeller Center. It's fun to say we did it, but it's chaos! Thanks to Make-A-Wish, we didn't have to wait in the huge lines outside, but you go down to this room smaller than our basement that's full of a zillion people trying to rent skates, return skates, and put their stuff in the bag check area. I'm sure a million fire laws were being broken in there. But once we got through that melee, being out on the ice itself was fun. The big tree is right over the rink and everything is decorated, so it's a great atmosphere.
-Friday night we met my cousin, Michael, and his wife, Kim, for dinner. We went to a local Irish pub and the boys behaved in a manner that I feel certain will cause Kim and Mike to not have children.
Saturday, December 13
-Ate breakfast at the hotel again. Each day our server was so nice and would give us extra Doubletree chocolate chip cookies for the boys to take with them as a snack for the day (as if they needed more sugar).
-We were scheduled to be at the Statue of Liberty at 10am. Again, big crowds, but because of Make-A-Wish, we didn't have to wait in any lines! Someone met us at the ticket booth and escorted us straight inside. Security there is tighter than to fly on an airplane--seriously. We had to take off our belts, barettes (me, not Eamonn), and not just coats, but any sweaters, etc., as well.
-Jeremiah (Eamonn's cousin) and his friend, Christie, were also in NYC that weekend, so we had planned to meet up at the Statue of Liberty. We were on the ferry ahead of them.
-If you have plans to go to the Statue of Liberty, you can no longer actually go up inside it (since 9/11). You can get there early and get special tickets into the base of the monument, which is a good museum. You can then walk up to the top of the base (sounds weird, I know) and have a great view.
-I wish I'd taken a video of the boys when they saw Jeremiah. They screamed his name, ran and jumped all over him, and then he picked them both up at the same time and swung them around. Too cute. But I need to work on my quick draw to get my camera out fast enough to capture these Kodak moments.
-From the Statue of Liberty we took the subway to the Empire State Building. Again, star treatment. This was Finn's favorite part of the wish! Eamonn and Finn stayed out on the observation until after the sun went down. They're both "warm" people. Declan and I, with our reptilian tendencies, got cold and had to come inside to watch the sunset.
-We then took the subway on up to Washington Heights to visit with Eamonn's cousins, Mary, Kaitlyn (Mary's daughter), Gerry, Gerry's wife, Mary Jane, and Aunt May. We had a great evening with them and it was fun to see the inside of a New York apartment. Mary drove us back. I don't know how someone drives up in that traffic, but they grew up doing it!
Sunday, December 14
-Our last day! Finn was distressed it was time to go home.
-We took another walk to Central Park and rode the carousel. Then we walked to see Balto's statue and roamed past the zoo.
-Mary had told us about a model train display in a building near our hotel, and so we went to see that. It was amazing and Finn was in hog heaven.
-Another limo picked us up at 2:30pm and it was back to the airport for an uneventful flight back to Denver.
-We landed during snowy weather and yet another limo took us back to the hotel. We got to bed at about 11pm.
-It was hard to sleep without all those taxi horns. Kidding. I don't know how people in NYC sleep at all. I guess you just get used to it. Oh yes, I'm a small town girl at heart.
-We called into the radio station and did a post-trip interview LIVE, which meant Finn didn't get to talk. Apparently they are familiar with the adage: don't work with children or animals--because really, I have no idea what he might have said.
-By 1pm we were home.
And thus ends the trip of a lifetime for us all!
I waited for a limo to pick me up and take me to the grocery store that afternoon, but no one showed. What a letdown.
You can see the grown up pictorial of our trip HERE.
Declan's view of the trip is HERE.
And Finn's view of the trip is HERE.
Here's a rundown of what we did:
Monday, December 8
-Drove to Denver in a driving snowstorm.
Tuesday, December 9
-Went to KOOL 105 FM and taped a segment for the Make-A-Wish Colorado radiothon that was scheduled to air on Monday, December 15.
-Visited our Denver clinic to say hi and Merry Christmas to everyone. Finn's little buddy Joshua happened to be there that day getting his chemo and IGG!
Wednesday, December 10
-A limo picked us up at the hotel in Denver at 5:30am. The boys didn't know that we were going to the airport via limo, so it was a fun surprise.
-Our flight ended up being delayed because of heavy rains in NYC (nice), so we landed about 45 minutes late.
-Yet another limo picked us up at LaGuardia, and George, the driver, graciously detoured us to McDonalds so we could get something to eat since they starve you these days on planes.
-After a lunch stop, George took us on the "scenic" route and drove down the east side of Central Park on 5th Avenue on our way to the Plaza Hotel.
-It was pouring rain.
-We got to the Plaza and Mickey, who works outside, met our limo and whipped open the door with a flourish, welcoming the boys to the Plaza Hotel and showing them both where Kevin (Macauley Culkin) pulled up when he arrived at the hotel. We were ushered in with pomp and circumstance--the manager came out to greet the boys (and us) and were all very nice.
-Eddie, a bellman who was there when Home Alone 2 was filmed there, escorted us to our room. He was so great our whole stay, paying special attention to the boys and showing them around.
-When you stay at the Plaza, you have a butler. Isn't that hilarious? So even though there was a plate of cookies and candy and milk for the boys and a cheese and fruit plate for us, our butler also brought us complimentary drinks. I think I had water. Crazy, I know.
-We headed out to find some dinner. In the pouring rain. Ended up getting slices of pizza because places right around the hotel didn't look too kid friendly (read: expensive).
-We did a lot of walking. The boys did a lot of complaining. I immediately missed the BOB stroller, which we had sold via Craig's List and the woman picked it up from us when we were in Denver the day before. Come back, BOB, I miss you!
-When we came back from dinner, Finn complained that he didn't feel too well. . .
-We all piled into bed and watched Home Alone 2: Lost in New York. What else would we watch? I think I fell asleep before the boys did because I woke up later and had to turn off the TV, which was a struggle because it's this high tech panel system that the boys had already worked out, but I hadn't.
-Around midnight, Finn woke up screaming and crying and clutching his left ear. After trying to soothe him for about 45 minutes, I woke Eamonn up and told him we needed to get Finn to a doctor. I called the front desk where I was informed that a doctor could come directly to the hotel. . .for a minimum charge of $800. Hmmm, what are our other options? Urgent care about 30 blocks away--which Eamonn pointed out is only about a mile and a half away, but it seemed like much further. The good news is that when you're traveling through NYC at 1am, there isn't much traffic so your cab fare is pretty reasonable.
-Three hours and a double ear infection later, we were back at the Plaza. We all laid back down at about 4am.
Thursday, December 11
-We all slept in.
-Instead of going out and exploring in the morning, per our original plan, we stayed at the hotel to maximize our time at the Plaza!
-Eddie gave us a behind the scenes tour of the Plaza that is closed to the public because it is now private residences. Finn enjoyed sliding across the floor to the elevator like Kevin.
-At noon another limo picked us up and took us to John's (I think) pizzeria where we picked up a cheese pizza and ate in the limo. . .just like Kevin. Unfortunately, Finn was still a little under the weather and didn't enjoy any pizza.
-We drove to FAO Schwarz, which is ironically across the street from the Plaza so we just went in a big circle in the limo (which took an hour because of NYC traffic!).
-Finn rallied while we explored FAO Schwarz which was, of course, crazy crowded.
-Our driver on this day, Carlos, was waiting for us when we came out, and took us to our new hotel, the Doubletree. Can I tell you how cool it is to have a driver waiting for you on the street? I could get used to this!
-Originally we were supposed to go to the Empire State Building, but we figured Finn's head might explode on the elevators, so Make-A-Wish rescheduled that visit.
-It was pouring rain.
-So instead, we went to Macy's and ate chicken soup, which thrilled Finn to no end, mailed letters to Santa to take part in the Macy's donation to Make-A-Wish for every letter put in their Santa mailbox, and then we went to Santaland. I remember going to Santaland on the 6th floor of Lazarus in downtown Columbus growing up. This was reminiscent of those days! I loved it! So did the boys. Declan sat on Santa's lap. Finn did not.
-Then we went outside, in the pouring rain, and looked at the Macy's windows, which were my favorite of all we saw.
-There was a huge line of people to get a cab, so we took a pedi-cab back to the hotel. That guy worked hard for his fare with four of us piled in there. At least NYC is relatively flat.
Friday, December 12
-Up and out early to the Today Show. Eamonn left at 5:45am to secure a spot, but called by 6am to tell us that we needed to get there ASAP to be sure we got in. I had to rush everyone out of bed and we took off. Then there was the wrong turn I wrote about in the earlier post. Sigh. Such a great way to start the day. Combine that with being hugged by a giant mouse and Finn was none to happy. Declan was all about getting on TV though.
-After the Today Show, we went back to the hotel and gorged on the breakfast buffet.
-The rain had cleared away and the skies were beautiful at last. We went to Central Park and took a carriage ride. Finn wondered if he could ride in the trunk-like thing at the back like Kevin. We said no.
-After our carriage ride, we enjoyed several hours walking around Central Park. The boys played in the park and we walked to the Dakota Building and Strawberry Fields.
-We all went into Tavern on the Green to go to the bathroom. Eamonn and I both took boxes of matches so we could say we'd been there.
-We ate lunch at a hot dog stand. Disappointing. The hot dogs have shrunk!
-We were due at Rockefeller Center to go ice skating at 2:30pm. We got there a little early so we went for hot chocolate at a deli on a side street. Coming out of the deli is when we had our James Gandolfini Encounter.
-Skating at Rockefeller Center. It's fun to say we did it, but it's chaos! Thanks to Make-A-Wish, we didn't have to wait in the huge lines outside, but you go down to this room smaller than our basement that's full of a zillion people trying to rent skates, return skates, and put their stuff in the bag check area. I'm sure a million fire laws were being broken in there. But once we got through that melee, being out on the ice itself was fun. The big tree is right over the rink and everything is decorated, so it's a great atmosphere.
-Friday night we met my cousin, Michael, and his wife, Kim, for dinner. We went to a local Irish pub and the boys behaved in a manner that I feel certain will cause Kim and Mike to not have children.
Saturday, December 13
-Ate breakfast at the hotel again. Each day our server was so nice and would give us extra Doubletree chocolate chip cookies for the boys to take with them as a snack for the day (as if they needed more sugar).
-We were scheduled to be at the Statue of Liberty at 10am. Again, big crowds, but because of Make-A-Wish, we didn't have to wait in any lines! Someone met us at the ticket booth and escorted us straight inside. Security there is tighter than to fly on an airplane--seriously. We had to take off our belts, barettes (me, not Eamonn), and not just coats, but any sweaters, etc., as well.
-Jeremiah (Eamonn's cousin) and his friend, Christie, were also in NYC that weekend, so we had planned to meet up at the Statue of Liberty. We were on the ferry ahead of them.
-If you have plans to go to the Statue of Liberty, you can no longer actually go up inside it (since 9/11). You can get there early and get special tickets into the base of the monument, which is a good museum. You can then walk up to the top of the base (sounds weird, I know) and have a great view.
-I wish I'd taken a video of the boys when they saw Jeremiah. They screamed his name, ran and jumped all over him, and then he picked them both up at the same time and swung them around. Too cute. But I need to work on my quick draw to get my camera out fast enough to capture these Kodak moments.
-From the Statue of Liberty we took the subway to the Empire State Building. Again, star treatment. This was Finn's favorite part of the wish! Eamonn and Finn stayed out on the observation until after the sun went down. They're both "warm" people. Declan and I, with our reptilian tendencies, got cold and had to come inside to watch the sunset.
-We then took the subway on up to Washington Heights to visit with Eamonn's cousins, Mary, Kaitlyn (Mary's daughter), Gerry, Gerry's wife, Mary Jane, and Aunt May. We had a great evening with them and it was fun to see the inside of a New York apartment. Mary drove us back. I don't know how someone drives up in that traffic, but they grew up doing it!
Sunday, December 14
-Our last day! Finn was distressed it was time to go home.
-We took another walk to Central Park and rode the carousel. Then we walked to see Balto's statue and roamed past the zoo.
-Mary had told us about a model train display in a building near our hotel, and so we went to see that. It was amazing and Finn was in hog heaven.
-Another limo picked us up at 2:30pm and it was back to the airport for an uneventful flight back to Denver.
-We landed during snowy weather and yet another limo took us back to the hotel. We got to bed at about 11pm.
-It was hard to sleep without all those taxi horns. Kidding. I don't know how people in NYC sleep at all. I guess you just get used to it. Oh yes, I'm a small town girl at heart.
-We called into the radio station and did a post-trip interview LIVE, which meant Finn didn't get to talk. Apparently they are familiar with the adage: don't work with children or animals--because really, I have no idea what he might have said.
-By 1pm we were home.
And thus ends the trip of a lifetime for us all!
I waited for a limo to pick me up and take me to the grocery store that afternoon, but no one showed. What a letdown.
Tuesday, December 16, 2008
I Wish I Could Change The World
Taking part in the Make A Wish radio-thon on Monday was an eye opening (ear opening) experience.
Once again, I'm reminded of how lucky we are. Yes, our son had cancer. It was (still is) scary. But statistics are on our side.
During the radio-thon, we heard stories of kids who died just days, or even hours in one case, after their wish was fulfilled. That puts tears in my eyes right this very second.
There are so many stories. Too many.
So Laurie told me about this family who recently took their own Make A Wish trip to Disney. Honestly, I think I felt a piece of my heart break off when I read their story. Both of their children have a terminal illness called Sanfillippo Syndrome. You can read more about it on their blog, but the bottom line is both of their children are slowly dying.
Friends of the family are trying to raise money to help this family move to a home that can accomodate the childrens' changing needs. You can read more about the efforts of their two college friends at A Hundred For A Home.
I know I throw requests out there for donations for different organizations now and again. We all have our favorite charities. I have mine, you have yours. But I feel compelled to donate to this family because I can't even comprehend how you lose one child, let alone two. It must be agony if you can survive it and still feel.
Shannon, the mom, calls her blog "Exploring Holland." Here's why:
WELCOME TO HOLLAND by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland". "Holland?!?" you say. "What do you mean Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people who would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around....and you being to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And for some time, the pain of that will never go away...because the loss of that dream is a significant loss.
But, if you spend your life mourning the face that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
*********************
What a beautiful, poignant way of saying life doesn't always turn out like we planned.
We had so many people--friends, family, total strangers--reach out to us when Finn was in treatment. We can never repay any of that because you can't put a pricetag on compassion. Without it, we never would have made it. So our goal is to just keep paying it forward when and where we can.
I'm going to head on over and donate what I would have spent on coffee this month. OK, I actually don't drink coffee, but I'm going to pretend I do and donate that amount anyway.
And then I'm going to be grateful that even though life didn't exactly follow the path we thought it would, where we are right now is pretty darn good.
Blogger friends, please help spread the word. . .
Once again, I'm reminded of how lucky we are. Yes, our son had cancer. It was (still is) scary. But statistics are on our side.
During the radio-thon, we heard stories of kids who died just days, or even hours in one case, after their wish was fulfilled. That puts tears in my eyes right this very second.
There are so many stories. Too many.
So Laurie told me about this family who recently took their own Make A Wish trip to Disney. Honestly, I think I felt a piece of my heart break off when I read their story. Both of their children have a terminal illness called Sanfillippo Syndrome. You can read more about it on their blog, but the bottom line is both of their children are slowly dying.
Friends of the family are trying to raise money to help this family move to a home that can accomodate the childrens' changing needs. You can read more about the efforts of their two college friends at A Hundred For A Home.
I know I throw requests out there for donations for different organizations now and again. We all have our favorite charities. I have mine, you have yours. But I feel compelled to donate to this family because I can't even comprehend how you lose one child, let alone two. It must be agony if you can survive it and still feel.
Shannon, the mom, calls her blog "Exploring Holland." Here's why:
WELCOME TO HOLLAND by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland". "Holland?!?" you say. "What do you mean Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people who would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around....and you being to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And for some time, the pain of that will never go away...because the loss of that dream is a significant loss.
But, if you spend your life mourning the face that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
*********************
What a beautiful, poignant way of saying life doesn't always turn out like we planned.
We had so many people--friends, family, total strangers--reach out to us when Finn was in treatment. We can never repay any of that because you can't put a pricetag on compassion. Without it, we never would have made it. So our goal is to just keep paying it forward when and where we can.
I'm going to head on over and donate what I would have spent on coffee this month. OK, I actually don't drink coffee, but I'm going to pretend I do and donate that amount anyway.
And then I'm going to be grateful that even though life didn't exactly follow the path we thought it would, where we are right now is pretty darn good.
Blogger friends, please help spread the word. . .
Friday, December 12, 2008
The Rooneys Take Manhattan
Yea! Out and about in NYC today--no health problems to speak of. Unless you count that unfortunate incident skating at Rockefeller Center when Finn was playing with the glass doors and got his hand shut in it. Fortunately not broken. I don't think I can take another trip to the doctor's office here. I'm not sure our insurance can either.
Up and out early this morning to the Today Show. Eamonn left the hotel at 5:45am to secure a place along the barriers. I anticipated a more leisurely arrival at 7am. Then Eamonn called and said I had to be there by 6:30am instead. It always goes so well when I have to rush the kids in the morning. We actually made great time getting ready and would have arrived at 6:30am on the dot when security started letting people in. That is, we made good time until, despite Eamonn's careful directions, I turned the wrong way on 48th and walked 3 blocks in the wrong direction, which technically isn't a big deal when you're a big person, but when you're dragging two little people along with you at 6:20am, it's slightly more problematic. So we arrived at the Plaza area slightly frazzled and sweaty, but the boys were fortunately in good spirits. . .until we made them stand out in the cold for 2 1/2 hours.
According to my mother, we did appear on screen twice for a grand total of .6 milliseconds. We wanted to wait around a little longer to see a segment that was supposed to be shot in front of where we were standing, but the boys were in meltdown mode at that point, which I guess is understandable given that we'd dragged them out before dawn and not eaten breakfast.
Small World Encounter #1--the people standing next to us at the Today Show were from a town 15 minutes away from where we live in Colorado.
Small World Encounter #2--We were walking through Central Park and offered to take a family's photo and then they offered to ours. Turns out they're English (Eamonn is English). They asked Eamonn where he lived now: Colorado, of course. They are headed to Colorado on Monday. Really? Where? Beaver Creek. The resort where I work this year at the Children's Ski School, about 20 minutes from our house and where they will be taking ski lessons this week.
Notes. Matt Lauer is pretty short. Al Roker is very friendly, but also short. Matthew Broderick--short and adorable. Finn does not like people dressed up as characters. Like Despereaux, the mouse who was constantly on the Plaza today, causing Finn to spend much of the time crouched at our feet behind the banner. He did accept all of the free Despereaux swag though. Hypocrite.
Finally, I have had a famous person sighting that is verified by Eamonn. In the past I've seen famous people, but Eamonn says if he doesn't see them, too, it's an unverified sighting--like the time I saw Kate Hudson and Chris Robinson walking down the road in Malibu. I maintain to this day it was them. Totally. I mean, how to you mis-identify someone who looks like Chris Robinson?
So this afternoon we were walking out of a deli after having some hot chocolate and cookies and waiting for our skating time at Rockefeller Center, James Gandolofini drove by in a black SUV. Total eye contact. I kept staring at him and thinking, "I feel like I know this guy." Stare, stare, stare. Not in mean way, just dopey and quizzical, which is how I look most of the time anyway. So suddenly Eamonn calls out, "Hey, James!" Like he's friends or something, but I pointed out that his friends probably call him Jim. Anyway, James/Jim gave us a little wave and ultra cool smile. We started to tell the boys about it, but they were yelling "Elmo!" which I thought was strange because I didn't recall James Gandolfini ever playing a character called Elmo. But then when James' SUV moved, I could see someone dressed as Elmo across the street. Finn had no intention of going near Elmo, but apparently just wanted us to know Elmo was in the vicinity.
A long, good day. Is it bedtime yet?
Up and out early this morning to the Today Show. Eamonn left the hotel at 5:45am to secure a place along the barriers. I anticipated a more leisurely arrival at 7am. Then Eamonn called and said I had to be there by 6:30am instead. It always goes so well when I have to rush the kids in the morning. We actually made great time getting ready and would have arrived at 6:30am on the dot when security started letting people in. That is, we made good time until, despite Eamonn's careful directions, I turned the wrong way on 48th and walked 3 blocks in the wrong direction, which technically isn't a big deal when you're a big person, but when you're dragging two little people along with you at 6:20am, it's slightly more problematic. So we arrived at the Plaza area slightly frazzled and sweaty, but the boys were fortunately in good spirits. . .until we made them stand out in the cold for 2 1/2 hours.
According to my mother, we did appear on screen twice for a grand total of .6 milliseconds. We wanted to wait around a little longer to see a segment that was supposed to be shot in front of where we were standing, but the boys were in meltdown mode at that point, which I guess is understandable given that we'd dragged them out before dawn and not eaten breakfast.
Small World Encounter #1--the people standing next to us at the Today Show were from a town 15 minutes away from where we live in Colorado.
Small World Encounter #2--We were walking through Central Park and offered to take a family's photo and then they offered to ours. Turns out they're English (Eamonn is English). They asked Eamonn where he lived now: Colorado, of course. They are headed to Colorado on Monday. Really? Where? Beaver Creek. The resort where I work this year at the Children's Ski School, about 20 minutes from our house and where they will be taking ski lessons this week.
Notes. Matt Lauer is pretty short. Al Roker is very friendly, but also short. Matthew Broderick--short and adorable. Finn does not like people dressed up as characters. Like Despereaux, the mouse who was constantly on the Plaza today, causing Finn to spend much of the time crouched at our feet behind the banner. He did accept all of the free Despereaux swag though. Hypocrite.
Finally, I have had a famous person sighting that is verified by Eamonn. In the past I've seen famous people, but Eamonn says if he doesn't see them, too, it's an unverified sighting--like the time I saw Kate Hudson and Chris Robinson walking down the road in Malibu. I maintain to this day it was them. Totally. I mean, how to you mis-identify someone who looks like Chris Robinson?
So this afternoon we were walking out of a deli after having some hot chocolate and cookies and waiting for our skating time at Rockefeller Center, James Gandolofini drove by in a black SUV. Total eye contact. I kept staring at him and thinking, "I feel like I know this guy." Stare, stare, stare. Not in mean way, just dopey and quizzical, which is how I look most of the time anyway. So suddenly Eamonn calls out, "Hey, James!" Like he's friends or something, but I pointed out that his friends probably call him Jim. Anyway, James/Jim gave us a little wave and ultra cool smile. We started to tell the boys about it, but they were yelling "Elmo!" which I thought was strange because I didn't recall James Gandolfini ever playing a character called Elmo. But then when James' SUV moved, I could see someone dressed as Elmo across the street. Finn had no intention of going near Elmo, but apparently just wanted us to know Elmo was in the vicinity.
A long, good day. Is it bedtime yet?
Tuesday, December 9, 2008
Waiting to Take a Bite Out of the Big Apple
Mother Nature has an ironic sense of humor. We've had a warm, dry fall in our neck of Colorado. As in, no snow at our elevation. The resorts? Plenty, and I'm grateful for that. The economy could use it. But while we've had a few dustings at our house, that's about it. I guess we did wake up to a few inches in the days after Thanksgiving, and I got all excited that this was IT for the year--no more looking at brown grass until March. But no. It warmed right back up again and the snow was gone. Until yesterday afternoon when it was time for us to get ready to drive to Denver. Typical. If we're driving to Denver to go on a trip, it will snow heavily. Even if it's June.
Fear not. We made it in fine style, despite the nearly whiteout conditions at certain points.
Our hotel is really nice--the boys have declared it The Best Hotel Ever. Wait 'til they get a load of the Plaza, I say. Make A Wish had a backpack waiting for Finn that was loaded with goodies like cars, gummy worms, disposable cameras, flashlight and an iPod shuffle. Good grief. We're going to be spoiled rotten by the end of this. Finn graciously shared his items with Declan. I love it when they get along for 2.2 seconds. It does my heart good.
This morning we went to a Denver radio station to tape the interview for Monday. If you go to and scroll down, you'll see the promotional info on the fundraiser, which features a picture of none other than the Mighty Finn. You can listen to the program live on the Web from 6 - 9am MST on 12/15. I can only imagine how my voice will sound on the radio. It's all about me, you know. Not about the money Make A Wish might raise, which I hope is a lot because this is the first time they've ever done this and they've probably wiped out their coffers sending us to stay at the Plaza for a night. Anyway, if you don't have 3 hours of your life to spend at your computer Monday morning, they're supposed to send me an MP3 version of the interview which I can allegedly post on my blog. Allegedly. I have no idea how I would do that given my past history with trying to upload videos. We'll see. Or hear, as it were.
We also had a chance to visit the clinic today and by coincidence, Finn's buddy Joshua was there today. Top that off with lunch at McDonalds and a swim in the pool and I think we're already ready for bed. Seriously. We're heading out to join the geriatric set of Denver for an early bird dinner at 5pm so we can go to bed at 7pm. The boys don't know it, but a limo is picking us up at 5:30am tomorrow to take us to the airport and then the adventure begins.
Eamonn just called me from the hotel room, because you know how it is in this day and age of technology, he can't actually come down to the business center of the hotel in person, to tell me that Jeremiah will be in NYC this weekend, too, so hopefully we'll get a chance to see him.
AND, in other exciting news, I just keep rambling on, don't I?, Eamon (Eamonn's cousin) and his wife Nicole have been staying with us for the past few days, and they have decided to relocate to the valley! Over the course of about 24 hours they found a place to live and got Nicole a job as a ski instructor. They'll be back in the valley with all of their stuff in just one week. Ah yes, remember those days of being young and childless and you can do things like move across the country at the drop of a hat and then get up the next day and go to work without even batting an eye? Actually, I'm not sure I was ever capable of doing something like that. But, we're crazy excited to have them living so close to us (Even though they'll probably never have children now after spending so much time with the boys, sorry Theresa).
AND, our friends Lisa, Brian and Aidan arrive back in CO from the UK for a visit next week after we get home.
Many exciting things going on.
Must run. Early bird calls.
Fear not. We made it in fine style, despite the nearly whiteout conditions at certain points.
Our hotel is really nice--the boys have declared it The Best Hotel Ever. Wait 'til they get a load of the Plaza, I say. Make A Wish had a backpack waiting for Finn that was loaded with goodies like cars, gummy worms, disposable cameras, flashlight and an iPod shuffle. Good grief. We're going to be spoiled rotten by the end of this. Finn graciously shared his items with Declan. I love it when they get along for 2.2 seconds. It does my heart good.
This morning we went to a Denver radio station to tape the interview for Monday. If you go to and scroll down, you'll see the promotional info on the fundraiser, which features a picture of none other than the Mighty Finn. You can listen to the program live on the Web from 6 - 9am MST on 12/15. I can only imagine how my voice will sound on the radio. It's all about me, you know. Not about the money Make A Wish might raise, which I hope is a lot because this is the first time they've ever done this and they've probably wiped out their coffers sending us to stay at the Plaza for a night. Anyway, if you don't have 3 hours of your life to spend at your computer Monday morning, they're supposed to send me an MP3 version of the interview which I can allegedly post on my blog. Allegedly. I have no idea how I would do that given my past history with trying to upload videos. We'll see. Or hear, as it were.
We also had a chance to visit the clinic today and by coincidence, Finn's buddy Joshua was there today. Top that off with lunch at McDonalds and a swim in the pool and I think we're already ready for bed. Seriously. We're heading out to join the geriatric set of Denver for an early bird dinner at 5pm so we can go to bed at 7pm. The boys don't know it, but a limo is picking us up at 5:30am tomorrow to take us to the airport and then the adventure begins.
Eamonn just called me from the hotel room, because you know how it is in this day and age of technology, he can't actually come down to the business center of the hotel in person, to tell me that Jeremiah will be in NYC this weekend, too, so hopefully we'll get a chance to see him.
AND, in other exciting news, I just keep rambling on, don't I?, Eamon (Eamonn's cousin) and his wife Nicole have been staying with us for the past few days, and they have decided to relocate to the valley! Over the course of about 24 hours they found a place to live and got Nicole a job as a ski instructor. They'll be back in the valley with all of their stuff in just one week. Ah yes, remember those days of being young and childless and you can do things like move across the country at the drop of a hat and then get up the next day and go to work without even batting an eye? Actually, I'm not sure I was ever capable of doing something like that. But, we're crazy excited to have them living so close to us (Even though they'll probably never have children now after spending so much time with the boys, sorry Theresa).
AND, our friends Lisa, Brian and Aidan arrive back in CO from the UK for a visit next week after we get home.
Many exciting things going on.
Must run. Early bird calls.
Thursday, December 4, 2008
When You Wish Upon a Star. . .
Guess where we're going next week?
I've been dying to tell you this for ages, but as of today, I have the information and itinerary, and it's official: We're off to New York City next week for Finn's Make A Wish trip! ACK! I'm not sure who is more excited--Finn or me?
So here's the backstory on how Finn came to choose NYC for his wish trip. . .
During the steroid pulse of Finn's chemo (5 days every four weeks), he would become so incredibly irritable, his legs would ache, he would drink alarming amounts of fluids, and eat processed foods with wild abandon. It sucked. Probably more for him than for me, I'd wager. During those 5 days each month, he'd like on the couch, eating and drinking. . .and watching movies (come to think of it, there are 5 days each month I'd like to spend doing the very same).
Anyway, much to my dismay, he typically wanted to watch the same movie over and over and over again until I wanted to gouge my eyes out with a sharp stick just so I wouldn't have to hear the same dialogue over and over and over. . .you get the picture. But we pretty much let him watch whatever he wanted because let's face it, he felt pretty shitty. And I don't mean to be crass here, but there's just no other way to describe it.
Two years ago Finn got hooked on Home Alone. Just ask my mother. We had just moved and I recall her sitting on the couch with Finn, rubbing his legs all day, and watching Home Alone three consecutive times. Appalling to me, but then again, Grandmas are good at that sort of thing.
After Finn had memorized the lines from Home Alone, he started asking if there was a Home Alone 2. There was, but I had never seen it. I was a fan of the original, which Andrea and I went to see and laughed until our sides were sore--especially when the iron falls on Daniel Stern--and I had no intention of tainting my memories of the first movie with a sub-par sequel. But then I looked at my poor steroidal child on the couch and got the sequel from the library: Home Alone 2: Lost in New York.
And the rest, as they say, is history.
Since that fateful viewing of the movie two years ago, Finn has been determined to get to New York City. We thought it was a phase that would wear off. It didn't. At the park we played Home Alone 2. I always had to be the burglar and Finn always outsmarted me. At home he set up elaborate booby traps. I never knew when I was about to be decapitated by a strategically placed string or when I might find myself stuck in the bathroom with the door tied shut. Oh yes, he was hooked.
Last winter when we started the wish process, we told Finn there was this organization called Make A Wish and he could do anything he wanted. For awhile we wondered if he'd choose NYC, but he'd also asked if we would ever go to Disney. So we weren't really sure what's he'd come up with. We shouldn't have wondered. From the first words, "You can do anything you want to do. . ." It was New York City. Really? You don't want to do something like. . .Nope. New York City. And he has never wavered once.
Immediately we had to watch the movie again, but this time was different. I sat next to him, pen and paper in hand, and he directed me to take notes. When he saw "Kevin" do something in the movie that he himself wanted to do, he instructed me to write it down. We did this about five different times. The list was always the same:
1. Stay at the Plaza Hotel
2. Go ice skating and eat chicken soup afterwards (Kevin doesn't actually eat soup in the movie. I think Finn added this in because he loves chicken soup.)
3. Go to the Empire State Building
4. Go to the Statue of Libery
5. Ride in a limo and eat cheese pizza
6. Go to the toy store (we had to explain the the toy store in the movie was a pretend store, but there was a different toy store we could visit)
7. Go for a carriage ride in Central Park (Kevin actually hides in the back of a carriage when he's escaping from the burglars. We emphasized that burglars would not be chasing us.)
So today our itinerary arrived and may I just say that Make A Wish is just, like, WOW. I don't even know how to put into words the effort they have put into making Finn's wish a reality.
We fly from Denver on Wednesday, but we'll go to Denver Monday night because Make A Wish has asked if Finn can do a radio interview on Tuesday morning! Good grief--fortunately it's not a live interview so they can edit out any wild, random comments he might make on the air! His segment will be taped and will air on KOOL 105 some time between 6am and 10am on 12/15. Make A Wish Colorado is having a big fundraising drive that day. And, we may end up being on again that day for a post trip report--I'm not really sure. We'll see how it all pans out.
But Make A Wish is putting us up in a hotel for Monday and Tuesday night and then taking us to the airport via limo. The boys don't know about that so it will be a fun surprise.
Here's a rough outline of the trip:
Wednesday
-Fly to NYC
-Stay at the Plaza Hotel (yes, we're staying at the Plaza for one night!)
-We'll probably spend the rest of the day exploring around the hotel and area nearby. Personally, I don't think I'll ever want to leave the Plaza. They'll probably have to call armed guards to pull me out the next day.
Thursday
-Move to a new hotel (boo hoo). I guess it's OK if the Plaza wants to actually have paying customers come in.
-Another limo will take us from the Plaza to the new hotel. The boys are going to be in for a cold, hard dose of reality when we return home and our limo transforms back into a 1999 dirt-covered VW wagon with 160,000 miles on it. Like Cinderella returning home from the ball. . .only replace the glass slipper with a snow clog and it will be a little more realistic.
-Actually, we won't go directly from the Plaza to the new hotel. We will be going to a famous pizza shop and picking up pizza that we will eat while we drive around town (does one really drive around NYC in all that traffic? Heck, who cares! We're eating PIZZA in a LIMO in NYC! I don't care if we just sit there!)
-The limo will take us to FAO Schwarz where my children, who have become small town boys, will be so overwhelmed by all that they see they will have seizures on the top floor of the store.
-Later that day it's on to the Empire State Building! I'm going to have to watch An Affair to Remember and Sleepless in Seattle this weekend.
Friday
-Now, brace yourselves everyone. If you can, tune in to the Today Show on Friday, Dec. 12. It is our intent to get our bodies down there bright and early and find a spot on the railing to hang a banner that a local sign company graciously donated to say THANK YOU to Make A Wish. I hope it works because they have made this trip possible. Good grief, someone please TiVO it for me.
-On Friday we'll also be skating at Rockefeller Center (and I guess eating soup afterwards) and enjoying the giant Christmas tree.
Our schedule is crazy full, but I also hope we can get to Macy's and see Santaland and also the decorated windows there and at other stores. I used to love looking at the decorated windows at Lazarus Downtown. Ah, those were the days.
Saturday
-We're scheduled to go to the Statue of Liberty.
Sunday
-Heading back to Denver
Monday
-Drive home from Denver
Wardrobe issues are causing me angst. We're going to one of the most cosmopolitan cities in the world and I will be wearing. . .corduroys, fleece and snow clogs. My style is distinctly, um, mountain. Make that Stay At Home Mom Mountain. I'm sure I'll fit right in.
So there you have it: Finn's wish come true!
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