Make a Wish Trip Update

A few of you have been asking for an update on our Make a Wish Trip to Disney where we will celebrate Dear Son's birthday. Up until now, I haven't had any information however earlier this week, the Make a Wish (MAW) coordinator called to give me a status update on our trip. Apparently, everything is in order and she'll send me the final itinerary at the end of this week or the beginning of next week, then we should be good to go.

During our call, we also discussed swimming for Dear Son. Since they didn't have life jackets at the Give the Kids the World Resort, they offered to purchase a life jacket for Dear Son and have it shipped to our house. I selected one with a zipper so that it would stay secure on Dear Son; I didn't want any issues like we had this summer in summer school. She was then able to order one like that for him and we'll receive it in the next few days.

She also ordered all of the medical supplies we'll need for the trip. At our initial meeting, the MAW people offered to order all of Dear Son's supplies, so we won't have to pack them in our suitcases. This is fantastic since the supplies would have taken up two large suitcases, let alone be over the weight limit. They have ordered all of his formula, diapers, wipes, changing pads for the bed along with a hoyer lift and IV pole. That way, we don't have to take any of that along. I hadn't even thought about that but since they offered, I let them do that. The only things we'll need to take for Dear Son are his wheelchair, feeding pump and all of his medications for the week.

In addition, they are trying to set up a "Meet and Greet" with Barney for Dear Son. He really loves Barney and I am sure for those of you without a special needs child, that may be hard to understand. Barney was Dear Son's favorite toy for many years. It was the only toy that he could activate himself. Dear Son never had use of his hands/arms, couldn't walk, couldn't sit up very well on his own and well, when you can't do that, there aren't many toys for you to play with. When Dear Son got Barney for his sixth birthday, he immediately took to him. He could activate Barney by biting on his hand and Barney would talk to him. He could also take his foot and press on Barney's foot and he would sing. There aren't a lot of toys for severely disabled children, like there are for regular children, so for that reason, Barney is very special. At the Pediatric Neurologist's office there is a poster of the Velveteen Rabbit with a phrase that says, "When you love something long enough, it becomes real." That would describe Dear Son's relationship with his beloved Barney.

We are also thankful for our wish grantors/sponsors. We have two women that are responsible for granting or sponsoring our wish. Over the past few months, I have become friends with one of them. Angela Doyle is one of our wish grantors and she has worked tirelessly over the past few months raising money not only for Dear Son's wish but for other children as well. She and her wish granting partner grant three to four wishes a year. They will be granting Dear Son's wish as well as a few other children this year.

Angela and I have becomes friends over these past few months. Recently, we got together for tea and taked about the Make a Wish Organization, among other things. I asked her how she got involved with this and what inspired her. She said that she was a childhood cancer survivor and that experience prompted her involvement with the MAW Organization. She said that, "Every child and every wish is unique, but all the children I've worked with have inspired me with their strength. It means so much to me to see the kids and families get excited and forget about their illness for awhile. So I've seen firsthand the kind of impact Make-A-Wish has on the families, and it motivated me to raise money to support the organization." Angela works tirelessly in her spare time to raise money for the MAW organization. Since I've known her, she has had garage sales, bake sales and will also be running the Chicago Marathon on Sunday to raise money for Dear Son and the other children she sponsors for the Make a Wish Organization. Her goal is to raise $3000 for these children. You can see her progress or make a donation to the Make a Wish Organization here under Angela Doyle. (Thanks to the employees of Dear Son's Dad company who donated to the Make a Wish as well.)

This year, we'll be watching her run the race on Sunday, as well as tracking her here. One of the cool things about the Chicago Marathon this year, is that you can sign up to track the runners. She has been training since March for the marathon and has logged over 500 miles in preparation for the race. She usually runs 5-7 miles three times a week with a longer run on the weekends. The weekend prior to our tea, she ran 22 miles.

One of the things I am most thankful for, is how easy they are making this for us. It is really hard sometimes doing things when you have a child with special needs because everything you do is a thousand times harder than it is to do with a normal child. It's hard too because sometimes, well, you just get tired. The MAW organization has gone out of their way to do everything possible to make it easy for us to travel and to take care of everything for us ahead of time.

As for Dear Son, he is starting to get excited about our trip. We'll be celebrating his 18th birthday down there so I'll talk to him about how everyone will sing Happy Birthday to him and clap and he gets a big smile on his face. He loves a crowd and being the center of attention.

Today however, he was unable to go to school. He had a bad seizure this morning and had to stay home. He slept until 5 p.m. and then I got him up for two hours before putting him back to bed for the night. The good news was that he didn't have a fever so at least he's not coming down with anything.

That's all the news for now. I'll update you when I get more information. Thank you for all of the lovely comments and e-mails about our trip.