Gage: “I picked you out because I recognized your bald spot.”

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Quinn: “I want to live here. Can we move here?”

Me: “No, we can’t honey. But you can live here when you are older and you have a good job and you have good insurance.”

Quinn: “What is insurance?”

Me: “You’ll find out soon enough.”

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Me: “Gage, come here. Stay with us. We don’t want to loose you.”

Julian: “Gage, come here. Stay with us. We don’t want to loose you.”

Me: “Gage, come here. Stay with us. We don’t want to loose you.”

Julian: “Gage, come here. Stay with us. We don’t want to loose you.”

Me: “Gage, come here. Stay with us. We don’t want to loose you.”

repeat, repeat and repeat

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Quinn: “I can’t wait until I get my Make-A-Wish!”

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Gage: “That was a different Lion King than the one I knew about.”

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Julia to Julian: “Remember, this is family time!”

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Gage: “Why are there so many buildings?”

Me: “Because there are a lot of people.”

Gage: “Why don’t some of them go inside.”

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Gage: “I liked the Empire State Building, but I REALLY liked the Statue of Liberty.”

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Quinn (referring to EPO vs. blood draws) : “I really, really hate those shots! But I do not mind that other needle.”

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Me: “Gage, go to bed! Go to bed!”

Gage: “There are noises that are keeping me up. There. See. Did you hear that? Those are car beeps.”

We’re happy to be back. We came back tonight to find all of us just wanting to be quiet, except for Quinn, who was in tears for the better part of the trip because she is extremely itchy. We’re finding little relief with the usual treatment of various lotions. For several days I’ve been trying to get her to take a soaking bath in a powder “milk” bath that had been successful for Gage’s bouts of itching. We finally told her that we were trying the bath with no complaints from her (unless you count the 10 minutes of quiet back seat sobbing) and that was that!

The bath did indeed help, but there was no way I was about to point it out to her. I will next time I suggest a soaking bath. Quinn’s appointment with the transplant team is on Tuesday and that is something we will be speaking to the team about – is there anything we can give her to help?

Gage was content to sit for over an hour and build one of his small lego sets. We stopped our quietness to eat a delivered pizza dinner and the kids went to bed.

The trip was great. We have a lot of thank you notes to write! Here are some pictures to distract everyone from the fact that we need to write lots of thank you notes.

Gage holding the torch – Gage and Quinn and their 7 stuffed animals that we dragged to NYC having dinner with us on Thanksgiving, what you don’t see if Julian rolling his eyes – Pink hat Quinn is the night before Thanksgiving when the balloons were blown up – Parade day and snot nose Quinn and her bear scarf that a special person will love seeing in the photo!

(click to enlarge any of them)

The last day had us on Liberty and Ellis Islands to see the Statue of Liberty and Ellis Immigration Island. Wow. From start to finish I think was between 4-5 hours. We ended up at The Lion King tonight and back stage with a show producer (?) and some cast members. I highly recommend taking a trip like this with the treatment we’ve gotten from the Make-A-Wish Foundation, minus the near death experience of kidney failure though.

This trip has been fantastic. Gage had some bouts of Full On Gageness, because there’s nothing better than to take a routine-craving boy out of his routine, right? Then throw off his eating and sleep schedule. He’s been hard to settle down at night, but he is at home too, but at least there are walls and rooms and a floor between us. Not so the case at the W at Union Square.

And as a side note, the W has been incredible. I mean, not the hotel, as in it is nice, but man, the people have taken care of us. There have been Gage-specific treats in the room each day/night, everyone knows him by name and story, and they laugh in delight as he does a long run and sliding on his knees thing across their fresh marble floors in the main and only lobby. They searched high and low for a box to ship some things home, they arranged the back stage tour tonight, they have hoisted Gage up in many a trips using the house car. All with the enthusiasm they could muster. And seriously, Gage can kind of get shy and withdrawn (comes across as aloof and rude) if you don’t catch him in the right mood when the stars align, but none of them care. They hang with him until they can get a smile, a high-five or a knuckle greeting.

My friend Susan was able to hang at Liberty Island with us because a nice New Yorker gave us an extra ticket when she heard we were a Make-A-Wish family. I even said, “there are 4 of us, but I have a friend here, can I buy her a ticket.” She said, “Oh, no, you do not have to pay…here you go…enjoy yourselves!” Susan’s mouth about dropped then and when the shuffled us to the front of the line. We’d explained that we’ve been pushed in front the entire week by all of the places we’ve visited, but she didn’t believe us. She said she wouldn’t have believed it if she hadn’t seen it with her own eyes.

It was nice to have her there because she took Quinn to her apartment so we could visit Ellis Island with Gage, who did have a splendid time taking photos.

For today’s viewing pleasure, taken by Gage…

There are a lot of people in NY. I guess I knew there were a lot, but I didn’t know they would follow us to the parade and to the hotel and to Rockafeller Center for ice skating! I understand that there were a million people out to see the parade this morning.

Our tickets were great, probably a couple of blocks from the start. We sat comfortably in roomy bleachers where we could snuggle up the hour and 45 minutes before parade start. We sat near some splendid people – out of towners and New Yorkers alike. It was a very festive and wonderful way to spend Thanksgiving.

We came back to the hotel for lunch and then headed out to ice skating. We ended up in Times Square at the toy store so Gage could spend his Make-A-Wish money and sponsor money, where he bought up three Indiana Jones lego sets. Quinn used her spending money for a Dora ccarriage set.

I must say I am a bit tired of people. They are everywhere, these people. We have two more events, then a long morning on Saturday to pack and leave. We have been busy non-stop. I have a friend here who basically met us when we were back near the hotel for dinner, where she took the kids ahead of us back to the hotel. Julian and I walked alone for a whole 2 blocks by ourselves. I know it took 25 minutes but can you blame us?

Pictures for your viewing pleasure!

Twenty months ago tonight I was sitting next to Gage’s bed, writing a letter of thanks to Jody for her kidney donation to my kidney-challenged cherub. I’m as in awe of her gift 20 months into it as I was that night. Maybe a little more so now, as we embark on the 2nd such (hopeful) living unrelated kidney donation for the other little kidney-challenged cherub in my life.

Jody, thank you for your gift to Gage. While I know you feel that God led you to donate a kidney to Gage, I can’t say I feel that God make Gage sick in order for you to donate to him. I can tell you that your donation strengthened my faith in God and in people. I think God watched over Gage until you were able to donate your kidney to him.

Thanks for giving Gage a chance to live without a machine humming in the background and for giving him a chance to have as normal as possible life, for him.

I will always believe that there aren’t any amount of words I can write, or put them in such a way to communicate what it means to me that you made such a choice.

And as I watch my (wild) boy taking in NYC, I appreciate so much more the life he has, because I know he was so close to death.

Much love and gratitude on this Thanksgiving Day.

Gage’s grateful (and tired) Momma,

Julia

We’re having a splendid time, even though Gage is completely wild on taxi rides (“Hey! Look! No seat belts! And what’s this? A flip flop under the car seat!”) and isn’t so impressed with the observation deck at the Empire State Building (“Is this it?” Is this all?”). In all fairness to the ESB it is under renovation. They whisked us in under special VIP status – now that did impress Gage and Quinn (“You mean we can just go to the front of the line?”). After a quick trip back to the hotel we headed out to FOA Schwartz and it was torture. Gage wanted a $300 lego robot (um, no) and Quinn bought -with her own money – a horse ranch barbie set.

We went to the Natural History Museum ate hot dogs on the way in, and had a grand time seeing a couple of Imax shows (Sea Monsters and Cosmic Collision) the kids loved. Robert Redford narrated the Cosmic one, so that was nice for me, gazing at the stars and sitting in the dark listening to Robert.

We came out around 5:45 and saw the Macy’s Thanksgiving Balloons being blown up. So did a few thousand other people. Then we met a friend and stopped in at a diner for dinner where the kids ate 6 chocolate pancakes between them.

This is Gage’s trip and so I won’t say many details about the negatives of traveling with an impulsive child in a big, fast-paced city, but man, can Gage wear on a nerve or 20. He simply cannot resist the urge to run ahead, open doors he shouldn’t, crawl under renovation wall blockers, pick up staff phones, hide, and push every button – including ours. But he is having a grand time on this trip. And I am getting some great pictures. But you can’t see them tonight.

I have to get to sleep because at 5:30 we have to wake up and get to parade line by 7:00. And that would be for our grandstand seating – generously provided by the Make-A-Wish Foundation, Macy’s, The Bowne Company and well, I guess Gage’s crappy kidneys. Look for us on TV.

I’ll be the crazy woman trying to keep her boy from popping the large balloons passing by.

We arrived safely in New York to an active city with decent weather. Seeing as how this is Gage’s trip, we let him decide what to do during the afternoon hours of dead time before dinner and he chose a movie. We watch Nims Island and he was thrilled and surprised it cost $10.00. We were going to order lunch from room service, but when I added up the cost I realized that $100.00 for a lunch of sandwiches sounded ridiculous so I headed out to a deli for milk and PB&J – which turned out to be a good move because Gage took one bite.

We went out to dinner with my friend, Kirsten, who’s son also has PKD and it was great to see her. Then Julian took the kids back to the room for bed and let me stay out for drinks and for us to meet up with another ARPKD mom, Michele. It is always a pleasure to see them, because I know they understand the struggle of raising kidney-challenged kiddos. They left me and I miss them already. Some friends are like that – you can spend a few hours with them and feel that you haven’t missed a beat. That is how they are for me.

We could talk for hours about everything and nothing. When I am with them time passes too quickly and I always leave them feeling that our time was too short and that I wished they lived closer.

On another note altogether, my friend Dawn did something sweet for Quinn. You can read her post here. It’s times like these that I realize that people really are good. She wants to treat Quinn to some bling because Quinn is sweet and understanding and is about to face her crisis that is a kidney transplant. So, yeah. Dawn and her readers are wonderful that way.

Quinn’s first procrit shot is behind her. My friend, Leslie inflicted it upon Quinn. It just worked better because I needed hold her because while she was thinking about maybe, quite possibly letting me do it, that was different to actually letting me give her the shot.

Gage used to get mad about his shots, lashing out at us with words and arms. Quinn just gets sad about it, including very larges alligator tears and some snuggling time after, with her saying, “I really, really hate that needle.”

She’ll need another one when we’re in NY, so I’m on my own.

I’m in the middle of packing up winter clothes and books and game boys and cameras. And meds. And needles.

We attended Gage’s send off wish party this afternoon and were greeted by an unbelievable group of people who had gone to much trouble to give Gage a scanvenger hunt around their offices, ending up in their factory/shop completely set up for “Gage’s Festival” with bike races and basketball and throw the ball at the thingy, and ping pong and food and cotton candy and cake that he didn’t eat because he was into having fun instead of eating.

They were all even understanding about my boy, who, when at the center of attention, withdrawls a tad and does that by NOT smiling, or talking really. But we could tell he was very excited and enjoyed himself a lot. They gave him toys and movies and DS games and backpack/bags and t-shirts and music and they had balloons in his favorite color.

What nice people, all of them! So interested in Gage’s story and the trip and how he came up with the trip and well, it was just nice to smile thinking about the trip and having people just wanting to make Gage happy, outside of those of us who know him and love him.

Friday afternoon:

Me: “Come on Gage, we need to get ready to go to your wish party.”

Gage: “I don’t want to go. I don’t even know them.”

Me: “Us either, but they are helping us go to New York and they want to meet you and remember they are doing a scavenger hunt for you.”

Gage: “Okay. It better be fun.”

Me, thinking: “You ungrateful….”

Later, at dinner out:

Me: “Quinn, I have to say, you were a very nice sister today at the party. There aren’t many sisters that would be excited for their brother to get the party and all the presents. I’m really proud of you. You weren’t even jealous!”

Quinn: “Well….I was a little bit jealous.”

Later, on the way home:

“Quinn, I can’t wait until you get your wish.”

(me, whispering to Julian: “Did you hear that? That was actually nice.”)

Julian: “Gage, that was really nice of you.”

Gage: “I know. You can believe me.”

Later:

Me: “Gage, why don’t you give me your gift card they gave you so we don’t lose it.”

Gage, handing it to me: “Don’t spend it.”

Later:

Me: “Gage, I didn’t know they gave you a Ben10 DS game!”

Gage: “Hee, I know, they did that because there wasn’t any other Indiana Jones stuff left at the store.”

Later:

Gage: “I can’t believe they even make this much Indiana Jones stuff! And it’s all mine!”