Goodbye Pa

Seamus' grandfather, who he called Pa, died yesterday. Seamus loved him very much and is going to miss him terribly. Pa and Seamus had a special relationship. Even when Pa was at his sickest, Seamus could make him smile with his high fives and silly questions.

Pa had been sick for a very long time with cancer. In October 2007, Pa and Ga, moved down to MD from Rochester NY to be with us. While we have been building an addition on our house for them, they have been living in a temporary apartment. Twice a week, they baby-sit Seamus and lately he hasn't been able to play with Pa very much. Seamus understood he was sick and had to go to the hospital last week.

Pa was in hospice care where my mom and I stayed with him and yesterday James and Seamus stopped to see us. It just happened to be right after Pa passed away. I was afraid I wouldn't know how to explain Pa's death to Seamus but before I had a chance to figure it out, he asked me "Where's Pa, where's Pa?"

"Pa's in heaven now with the angels, honey, and he isn't sick anymore."

"He's not?" The idea of Pa being well really seemed to make him happy.

But later when he saw that Ga was sad, he seemed confused. I told him she missed Pa and he said "But Pa is in the hospital". We told him again about Pa being in heaven and this time he said "I'm frustrated".

I'm worried because Seamus knows that he gets sick and has to go to the hospital often, just like Pa. I don't want him to associate going to the hospital with going to heaven.

County Fair

I have two words for you, pig races. As soon as Seamus heard there were pig races at the County Fair, it was "When are we going to the pig races?, Where are the pig races?, Can't we go to the pig races now?"

This County Fair was just like what I would imagine a 1950's County Fair in IA would be, minus the deep-fried Oreo cookies and Wii raffle. You'd never think we were less than an hour away from Washington DC.

We saw cows, pigs, sheep and horses. Seamus got to play with a bunch of kids in the "corn pit", a giant sandbox full of animal feed. A clown made him a giant spider balloon that was almost bigger than him.


He went for a ride on the bug roller coaster and car ride, alone like a big boy, and he ate cotton candy. He even won a prize stuffed whale playing a game. It was the duck pond where everyone wins but never the less, he still won.


And of course, there was the pig races (and a duck race). It didn't quite live up to all the build up but Seamus didn't notice. He was too busy playing dragon vs cow and pig with the kid next to us.

On another note, Seamus is totally into the Olympics. I never expected that. He recognizes all the gymnastic equipment and keeps saying "I did that in gymnastics." He also watches the swimming and says they are "scooping and kicking" like he does in swim class.

First Haircut

We couldn't hold out any longer. Seamus got his first real haircut today. Daddy got one too. Seamus told him "Daddy, now you look handsome like me!"

Nice Days

Seammy and I decided to take it easy today. Since it's raining, we can't go to swimming class so we slept in and then Seammy joined me in bed. We were there for hours reading books and playing hide and seek under the covers. I feel like I'm coming down with a cold and it was the hardest thing to stop myself from smothering him in hugs and kisses.

Last night, I came home from work and we spontaneously decided to go out. The town next to us has a new little downtown area with a big fountain to run in and all kinds of new restaurants. Seamus loves it. While Mommy and Daddy ate, he played with the kids and got soaked. I knew he wouldn't eat much dinner but we let him have ice cream (sorbet for him) anyway. Isn't that what summer's all about?

Here are some pictures of our Chicago trip:

"Ga, are you sad?"

"Yes, I am, honey."

"What will it take to make you happy?"

"I want Pa to get better."

"Pa will get better and I will always be your best boy."

Chicago

We survived Chicago without any hospital visits, although we had two close calls completely unrelated to CF. Getting there and getting back were both two very long stories but in between we had fun.

We started our visit in Millenium Park which is great for kids. The Crown Fountain was Seamus' favorite. It's two huge structures with faces of Chicagoans displayed which every few minutes "spit" a stream of water which kids play in along with waterfalls. Seamus also got to go to his first real concert. Justin Roberts, who I had never heard of but apparently is very popular, was performing an outdoor concert. Seamus got right down in front and experienced his first mosh pit with all the kids who knew all the words and were dancing like crazy people.

We spent a day at the aquarium and got to see the dolphin show, baby belugas, and lots of starfishes just like Patrick.

But the biggest attraction was our room. Seamus never wanted to leave. It was nice (nothing too extravagent) but it had a big comfy bed where he got to watch movies, eat bagels and sleep with Mommy and Daddy. I think he was still pretty worn out from being in the hospital the week before because he wasn't as energetic and crazy as usual. He needed time to rest up and eat. His appetite was great and he couldn't get enough carbs. He ate tons of french fries, bagels, and pretzels. We were happy to see him eat anything after the previous few weeks.

So Lucky

I know even with all the GI troubles Seamus has we are incredibly lucky.

There is a little boy, Garren, in VA, only 7 years old, awaiting a double lung transplant. Please visit their blog and donate to his transplant fund if you can: G-Man's New Lungs