Journal Entry

Sunday, May 11, 2003

"God could not be everywhere and therefore He made mothers."

- Jewish proverb

Happy Mother's Day!!!! How blessed I've been with a splendid husband and two fabulous children allowing me to opportunity to celebrate Mother's day as "Mom". Christi was born the day after Mother's Day in 1997. On that Mother's day, I received a beautiful May birthstone necklace with a card saying it was from the baby. When I held baby Christi for the very first time the following afternoon, I discovered the baby came with a matching ring for me!! Funny how that ring never showed up in any of the ultrasounds!!! I've been very spoiled being "Mom". Thank you, sweet and thoughtful family.

Since that "first" Mother's day, the gifts I've received have been nothing of monetary value; however, I deem them priceless!!! These treasures include: rocks and yarn glued on a paper plate, hugs and kisses, back rubs and those precious projects brought home from preschool. Today I received a picture of "Shayla and I" draw at the Met from Shayla and Christi gave me a 3-D pyramid she made out of paper. Thank you, girls! I'm so honored to be your Mommy!

Shayne took the bus over to the parking garage to get our suitcases out of storage on Thursday. Our room is so small at Ronald that we use the van like a closet in New York! Thanks again, Rick!! With overnight parking garages here charging $20-40 per night and with our 145+ nights here so far, you can see that Rick is - without a doubt a most kind and generous angel on earth. I only met this great guy once. What a gem! New Yorkers sure get a bad rap they do not deserve! We've had nothing but great experiences with folks here. Well, ok, there was that one time when a lady told me a few bad words getting to the subway. Christi later asked me about it and I explained to her that I never wanted her to say those bad words and that the lady must have slept too late and was therefore in a big hurry while I was getting Christi and her stroller down the subway steps. I sort of found it funny thinking if the lady would have just helped me instead of stopping to shout at us she would have actually saved time and felt better about starting the morning late. Nevertheless, New Yorkers are WONDERFUL, WONDERFUL folks and we certainly hope that Rick will let us know when we've overstayed our welcome with the parking spot!!!

Friday, before we left, I was waiting with Harrison's Mother while Shayne was in Christi's room at the hospital preparing for her treatment. This gorgeous Mom was anxiously awaiting her darling son's test results back. She of course was on pins and needles waiting to be called in to find out the MiBG and marrows testing results. Finally, it was her turn. I wished her well and took off for Christi's bed. Harrison was diagnosed at this time last year (Happy Mother's Day - Not!) and he still has disease so also has not be able to get to transplant. (He's also on this Phase One Study like Christi) Well, I went back to Christi's room to help with her and then I had just finished praying for good news for Harrison when his Mom burst into Christi's room with happy tears on her face, it was all I could do to keep from joining her. Hallelujah!!! His disease has been diminished with this new trial treatment!! We continue to pray that this works for Harrison and totally rids his little body of this nasty disease. You can visit Harrison's web site at : Be sure to sign his guest book and send his family some well wishes. They're awesome folks!!

We packed for this trip after Christi completed her second week of the monoclonal antibody treatment on Friday. Thankful that painful ordeal was over for two weeks, we flew out of LaGuardia International Airport with American Airlines on Saturday. Christi watched a Black Beauty DVD on her laptop and then played her new Game Boy (Thank you, SE Girl Scouts and Leaders!!) the remainder of the flight. Shayla napped. What a joy it's been to be here in sunny (95 degrees today) Florida far - far - far away from the hospital!!! Ahhhhhhhhhhhhhhhhh!!!! Total bliss!!!!

Before we left N.Y. the Hampton Inn Maingate East Manager in Florida called me to say she had contacted Donna, the Tiffin Hampton manager, and wanted to make sure they had all of Christi's special needs taken care of. We were so touched by Kelly's thoughtfulness. She also told me that her staff was working hard to make sure that we experienced a magical, dreamlike trip. She told me that they wanted to have us picked up in a limo at the airport. I knew there was no way we could ever accept something as extravagant as a limo ride to the hotel so I quickly declined, but thought it was so very, very precious and kind. I was fighting back tears the rest of my conversation with this awesome hotel manager. I just couldn't believe her kindness!! God's people are unbelievable!! We've been so blessed by great family, friends and strangers! Thank you!

This beautiful hotel is fabulous!! Our room is sparkling clean and spacious; we even have a microwave and refrigerator in our room. Yipeeeee!! All guests receive a complimentary breakfast every morning. The pool is perfect and there is a free shuttle to all of the amusement parks. We give thanks for the Thomas Team's complimentary hotel room! Mom found the room rate (AAA $53.00) to be very reasonable for them when they arrive. Right now the great Aunt V is in the adjoining room next to us. FABULOUS! Thank you all!!

This morning we left for Disney's Animal Kingdom. We had a fabulous, fabulous, fabulous day! What absolute fun! Christi surprised us by not really being interested in the Disney characters but by loving, loving, loving the big kid rides! The faster and scarier, the better!!!!!!!!!!!!!!!! The lines were extremely short so we allowed her to ride many of the rides about 3 times in a row before going on to the next attraction. Shayla, on the other hand, loved meeting all of the characters and has been very hesitant to ride the "Big Kid" rides. Tomorrow at Magic Kingdom she should find more rides to her liking. Plenty of sunscreen kept us all completely sunburnt free. We could not have had a better day! (Well, unless you all were here with us!!) Eric joked that he reserved four hours for putting our Disney pictures on Christi's web site, well I just emailed him 9 so I think he was probably right with his time estimate. (So sorry, Eric! It's great to have FUN pictures to share with our family and friends back home! She's feeling great and we are all in a wonderful mood for the first time in a very long time!)

It wasn't until I had children of my own that I realized the value of a mother's love and the enormous depth of her commitment. In closing, I'd like to wish my Mother a Happy Mother's Day. Thank you for teaching me your profound sense of family, for being an expert listener and for your unconditional love. I've been richly blessed. Also, special Mothers Day wishes to my awesome Mother-in-law (She's the BEST!!!!! Thank you, Joan!!) and to my Godmother, Aunt Marty, and our Grandmas as well as the girls' Godmothers Aunt Tina and Aunt Vaunie. Happy Mother's Day. I still remember last year driving around to visit our Grandmas on this special day. Hopefully, next year we'll be able to do that again!! God bless you all! Happy Mothers' Day!!

With love and thanks,

Christi's Joke: Knock, knock. (Who's there?) Dwayne. (Dwayne who?) "Dwayne" the bathtub! I'm drowning!!

Christi's Quote: "Sometimes bad things happen to good people." (Shayla was asking if she was going to get cancer if she ate too much candy and the above quote was part of Christi's lengthy explanation to Shayla.)

What's Next? Christi's 6th birthday is tomorrow and then the next few days: Animal Kingdom, MGM, The Holy Land Experience, Kennedy Space Center, Magic Kingdom, Universal Studios, Universal Island of Adventure - oh I don't really know!! I just couldn't force myself to write that we'll be going back to New York for more scans and bone marrow tests all too soon!! We're leaving all that behind us this week!!! Thanks for everything!!