Olivia Baby

Today I got some interesting insight into Olivia's life at school. This afternoon she fell and bumped her head so the teacher called and I came to pick Olivia up early. She's fine, Olivia has a bump on her head but she is feeling fine now. When I pulled up to the school to pick Olivia up her class was outside playing. One of the little girls saw me and I heard her shout over to the teacher "Ms. Candice Olivia Baby's Momma is here". I went to check on Olivia (she was happily cuddling with her teacher) and a few of the kids came over to tell me about how "Olivia Baby" got a boo boo on her head. There are two Olivias in the class and the class has started calling our Olivia "Olivia Baby". I think it might have something to do with her ever visible chewy tube that Olivia wears clipped to her blouse like a pacifier might be. It might also have to do with the fact that Olivia has to be reminded or told to do things several times, that she enjoys playing with "baby toys". The other children in her class are not being mean spirited at all, rather collectively they have some how determined that Olivia needs a little extra attention and it's their job as a class to look after her. I was so touched! The teacher went on to tell me about how each of Olivia's classmates have taken on a special role towards their new friend "Olivia Baby" they are all so protective of her and they all take their role so seriously. It was so sweet to see their concern and compassion for Olivia Baby. Olivia is in a special needs class so all of her classmates have their own various health and developmental challenges but the teacher noted that even the kids in the class that often have issues relating to other children and people seem to be able to relate easily to Olivia and they are very protective of her as well. It was so cute to see them walking us back out and saying their good byes to Olivia Baby and telling her they hoped she felt better. Of course it makes me sad that Olivia is so far behind her classmates but I'm also so grateful that she seems to have landed in the classroom of little protectors.

Little Snipits

• Yesterday I arrived to pick Olivia up from school, when I walked into her classroom I found her happily and calmly sitting at the table eating snack with the other kids. Olivia doesn't sit still without being strapped into something (highchair, stroller, etc)! The teacher told me that Olivia is starting to follow the routine!
• Peter loves to help me move the laundry from the washer to the dryer, yesterday he moved the cordless phones from the house (3 of them) from their various homes into the dryer.
• Olivia took a nap at school and went to bed by 8:30pm! School must be tiring her out.
• Peter broke 2 plates while helping me unload the dishwasher.
• Peter is talking up a storm but I'm the only one that can understand him. I think that he gets so excited to say the word that it just comes rushing out all jumbled up. Alligator is prounced "ALLLLARtater", Please has become "peeease", Mickey Mouse is "ma mouse", Dora is "dodo", Gorilla is "Go Ro", the list goes on and on. I'm just happy he's talking.
• The one word Peter does say very clearly is "Sister". He refuses to call Olivia anything other than Sister, I find this especially interesting since we don't refer to Olivia as sister, Mike and I only call her Olivia or Livey. I think Peter is well on his way to defining his role in Olivia's life. She is his sister and that's all that matters.
• Mike is jumping out of a plane twice this week. One down but still one more to go. Please say an extra prayer for him on Saturday for his next jump. If he hurts himself we will all be one unhappy group of travelers. We leave shortly after for Olivia's wish trip and you know I'd drag him all over Disney World while he's delirious on pain meds, bringing new meaning to the "Happiest Place on Earth" slogan.

Speaking of our Wish trip please email me with any tips you have about Disney or the Orlando area! I haven't been in years so if you have tips to share please pass them along!

WISH

I am so excited to share that Olivia was granted a Wish through the Make A Wish Organization and we will be leaving in less than a week for Disney World. I'm just so overcome with emotion, I'll warn you now that this will be a long post.

Now that I've shared the big news I can start at the beginning. When Olivia was inpatient last summer I met several kids who were looking forward to their wishes or had just had their wish granted. Our Social Worker in the hospital suggested that I begin completing the paperwork to apply for Olivia to have a wish granted by the Make A Wish organization. The medical team at Duke encouraged and supported Olivia's Wish application enthusiastically. They all felt it would be great for Olivia to have something so positive to look forward to. I completed the paperwork shortly after Olivia was discharged from the hospital while we were in the apartment in Durham. Olivia and I met with some volunteers from Make a Wish and at that point she was able to communicate with them, she said that she wanted to see Mickey Mouse and the princess but that she did not want to go on a boat. The Make A Wish volunteers confirmed that this meant that Olivia was interested in going to Disney World in Orlando and that she did not want to go on a Disney Cruise. They continued putting the application packet together with the help of her transplant team at Duke. We found out that Olivia's wish had been granted shortly after we moved from Durham to Fayetteville. Since Make A Wish is a volunteer organization we had to be assigned a different group of "Wish Granters". In March we met with Olivia's Wish Granters here and we began to discuss Olivia's wish in greater detail. It's so sad to me that at this point just a few months later Olivia was no longer able to tell the Wish Granters that she wanted to see Mickey Mouse. Our Wish Granters were fantastic to work with and we all moved forward with the wish planning. The most complicated step seemed to be finalizing a date. The transplant team recommended that we go before school ended for the summer or after school began in the fall because of Olivia's suppressed immune system and on top of that if we waited until the fall then Olivia would most likely be off of all transplant medications and without a port. Basically the transplant team was strongly recommending that we wait until the fall. Mike and I went back and forth, of course we wanted to do what was best for Olivia medically but we wanted her to be able to understand and appreciate the experience. Finally we opted for after school started in the fall and our Wish date was finalized. I still don't know if we made the right decision but I've decided to stop stressing about it. We've known for months that we would be going to Disney World in September but we finally got to learn about some of the trip details this past week.

Olivia and 2 of her Wish Granters, I think we're especially lucky because we've been able to meet 5 FANTASTIC volunteers with Make A Wish throughout this process.

Before I continue I just have to talk about the Make A Wish volunteers. Everyone that we've had contact with throughout this experience has been wonderful! Each time we meet someone from Make A Wish they bring toys for Olivia, they brought toys for her to play with on the plane. This process has been so emotional for me, from Olivia expressing her wish to see Mickey to her not being able to talk much at all. These volunteers have all been fantastic.

Mike, Olivia, Peter, my sister Amy (Olivia's Godmother), and myself will all be heading to Orlando for a week! We will be staying at a special resort near Disney specifically for families that are visiting Orlando as part of a Make A Wish experience called "Give Kids the World". We'll be spending some time at the Magic Kingdom and the Animal Kingdom as well as Epcot, Universal Studios, and Sea World. It is our goal to give Olivia the best Disney experience possible. My parents are hoping to be able to meet us in Orlando for part of our trip. I am completely overcome with gratitude and appreciation. I just cannot find the words to express what a blessing this is, I don't even know where to begin. The mission of the Make A Wish organization is to "grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy." They have already done that and we haven't even left the house yet! And after reading that again I am crying all over the place so I'll just end here and maybe I'll be able to pull it together in time to pick Olivia up from school in a few hours.

The End of Summer....

I think NOT! We're so not ready for summer to end around here! After our years of living in the Pacific Northwest we're still soaking up the sun! We took full advantage of the long weekend around here.

I LOVE that we're just a quick 2 hour drive to the beach, but I think there's someone in our little family of 4 that appreciates it even more than I do......

 

Peter LOVES the beach. He loves the sand, the waves, the birds. He loves to grab shells and throw them back into the ocean.





We hung out in our backyard.





Leave it to the boys to make the slip and slide even more exciting.




We headed to the neighborhood pool.




Who knows what they are looking at but it's not me or the camera!




We hung out in the back yard some more. Thanks to some end of season sales we FINALLY have an umbrella for the patio. Mike and I enjoyed our coffee on the patio early in the morning while Olivia got to play on the swing set in her pj's. No pictures of that experience, it was too early for the camera!


We headed to downtown Fayetteville and went to the US Aviation and Special Operations Museum. The museum was neat, Mike really appreciated this poster about operational security........



A brand new restrauant just opened in Fayetteville and I know that my friends from South Carolina will appreciate this.....



That's right, Fayetteville has a Kickin' Chicken! We went for lunch and everybody loved it!

It was a great weekend but I'm just not ready for summer to end yet. I want to see how many more day trips to the beach we can squeeze in before it gets too cold!