Mother's Day

Mother's Day this year was good. Both Matthew and Lynn gave me a card specifically from Owen. God, what a bittersweet day, knowing that next year, I will have to try to enjoy this day without one of my children...

Yummy!

One of the yummiest parts of our trip to Florida was the frozen lemonade at Disney's Animal Kingdom! Here, Owen and I are sharing some. I'm not sure what kind it was, but none of the frozen lemonade at any of the other parks was quite as delicious at this!
When we rode Kilamanjaro Safari, we were so lucky to be able to see giraffes, elephants, lions, emus, and so many other animals. Anthony's favorite part of that park was the moving/talking interactive garbage can! It was incredibly entertaining for the three minutes it was able to be out before a hoard of young uncontrolled children started kicking it, pushing it, and standing around it, arms linked so it couldn't move. Owen loved meeting the characters, of course, and has actually grown quite attached to The Lion King movie because he had his picture taken with Rafikki when he was there.
We went to Medieval Times one night-11 of us, because Frank had relatives who drove in. While I loved the food and entertainment, it was crazy expensive. However, Owen, Seth, and Anthony all got Knighted, and we have the most adorable pictures from that-will upload soon.
Owen is still feeling well-active and happy! I love the way his skin smells-the way the top of his peach fuzzy head rubs against my mouth and nose when he is sitting with me on the couch, his adorable snoring when he sleeps...so much to love about that kid!

Owen's father and I had to meet with the funeral director yesterday to make pre-arrangements for Owen. We are having him cremated, both of us will get a portion of his ashes. Better to plan these things while we are still rational and not having to make rash decisions. Though not an easy day, for sure...
Owen is still doing amazingly well! I cannot believe how active and happy he still is, although I am of course incredibly grateful. I consider myself so very lucky to have this time to spend with him, even though I am sure I will always feel robbed of the future both he and I could have had...
We went to the Strong Museum in Rochester for a very short visit today because when we visited there on Saturday, my brother noticed a sign to have your child's handprint on a tile on the wall, although we missed the deadline posted of April 30. I asked at the desk and was given the name of a person to call who was able to get us in today so that Owen will have his handprint on the wall with the batch that went in-it will be on permanent display sometime in June. If we had missed the mail-in for that, his handprint wouldn't have been displayed until December, which almost surely meant that he would not have had the opportunity to view it, so I am so very thankful to Andrea Blocchi at the museum for allowing us to sneak in on that one! Purchasing the handprint also gives us a family membership at the museum, so we will be able to make the trip out there hopefully weekly or so while he is still feeling well. There is so much to do there we could literally spend hours and hours there and not see and do everything! Of course, Owen picked pink for the color he wanted his handprint displayed as (as in the Pink Power Ranger....) but he changed his mind and will have it orange at the museum, and pink for the ones that will be sent to me!
Enjoy those streaks of sun that are playing hide and seek through the clouds!
Jen

Another Make a Wish story...

When we were at Universal Studios, we went on the ET ride. The first time, Owen did not like it at all-he thought it was spooky. When we explained that the aliens were good guys, he wanted to go back on--several times. When you enter the ride, you have to provide a name, which ET says at the end (as in, Thank you Owen). We were being goofy, and the man running the name section helped us pick out the name Wakabyashi for Owen--It was incredibly funny, and the entire ride to the airport, Owen kept saying, "My name is Wakabyashi!" over and over again! He is too funny! Here is a clip of that...

Child Champion-Always!

Owen received his award today, which was a great honor. His award was introduced by Dr. Fitzpatrick, who has been Owen's oncologist, and coach Sil Dan, who has done fundraising for Owen. Both were great speakers. The Pink Power Ranger was there to greet him, as well. Owen kissed her, and later tonight said, "I forgot to ask the Pink Ranger something! I forgot to ask her to marry me!" Too cute!
So, here is the speech I gave today after Owen got his award:
"We'd like to thank the Women and Children's Hospital of Buffalo Foundation for choosing our son, Owen, for the Burt P. Flickinger, Jr Child Champion award. We, of course, have always seen Owen as a champion, even before his journey with cancer began a little over a year ago.
It was a cold day last April. Owen had been vomiting and complaining of neck pain for three days. His symptoms were not getting better with time, so we took him to the ER at Children's Hospital, where a doctor and nurse spent hours trying to figure out what was making little Owen sick. We discovered it was a brain tumor-a cancer called medulloblastoma. Five days later, my three year old son was having major brain surgery to have his tumor removed. Within hours after surgery, Owen had not yet opened his eyes, but was able to smile when his grandfather bent down to talk to him.
That is the essence of Owen-his ability to continue to smile despite all he has been through. One parent we have met summed it up perfectly for everyone who has met him when he said, "From the very first time you meet him, you can't help but fall in love with that little guy." It's true. Look at him. How could you not fall in love with him?
We accept this award on behalf of Owen and all of the children and families who are facing any illness. We thank the foundation, the doctors, nurses, aides, friends, family members, and everyone who has become our family members through our journey. May Owen's smile and spirit continue to inspire hope and happiness in all of us. Thank you."