Quote of the day: "With courage you will dare to take risks, have the strength to be compassionate, and the wisdom to be humble. Courage is the foundation of integrity." ~ Keshavan Nair
Before I tell you about our amazing day, I want to thank all the osteo families out there reading our blog. Some of you I did not even know about. I appreciate your postings and e-mails and I plan on e-mailing you all directly to learn more about the information and insights you shared with me!
In true Brown Family roller coaster style, today was an extremely good day. Mattie celebrated his birthday officially. Mattie's real birthday is April 4, but because he was hospitalized during that time, he was unable to have the true bug party that he wanted. So thanks to our amazing friends, Mattie had his dream come true today. Peter and I are very humbled, because in the midst of such tragedy, we are surrounded by friends who take our breath away. Peter and I did not plan or pay for anything associated with this party. So today we received an amazing gift of love and generosity that in some way is too hard to describe or believe. If you think altruism no longer exists in our society, I need to introduce you to our friends. A special thank you to the Cooper's who hosted and planned a phenomenal party and of course to Ann who ran many of the activities today! After the party was over I was a little numb. I asked Peter how he felt, and he too said there were times today he felt depressed. Depressed because like I have said in the past, it is hard to see other healthy children, and know this is not part of Mattie's world. Of course we shake these thoughts out of our heads, but it takes a great deal of energy on our part to do this. Despite these moments of sadness, we were filled with great joy and the ultimate gift was that Mattie was TRULY happy! He said this was his BEST birthday party he ever had. Today's blog will be a posting of pictures and descriptions! I hope you enjoy this and feel like you were part of the celebration!
Left: A picture of the birthday boy!
Right: Everyone gathered around for the Reptiles Alive show. This was an incredible show filled with bugs and other creepy crawlers! Pictured in the back row (going left to right): Brian, Garrett, Katie, Ellen, Julie, and Mark. In the middle row (going left to right): Mattie, Campbell, Zachary, Alex, Katie, Sara Catherine and John. In the front row (going left to right): Abigail, Livi, Charlotte, and Kate.
Left: A close up of Livi (whose house the party was held at), Charlotte, and Kate watching the show!
Right: Mattie and Ann! Ann's expression captures it all, some of these snakes and other crawlers were almost too much to watch!
Left: Jennifer (the host from Reptiles Alive), with a Madagascar Snake!
Right: Jennifer with a very large turtle! Mattie's buddy Xander and his mom, Liz (our Mattie March Walk Chair), watched in the background.
Left: Jennifer coaxing "Charlotte" the tarantula to move!
Right: Jennifer holding a very large and intimidating Monitor Lizard.
Left: Jennifer holding an albino python, named "Sunshine." Sunshine is 45 pounds. Lovely!
Right: Mattie's bug cupcake that he designed!
Left: Abigail with her cupcake designs. Abigail is Ann's youngest daughter and Mattie is excited to be having a sleep over at Abigail's house tonight.
Right: Vicki, Mattie, and Lorraine. Lorraine is a good friend of Vicki's. Lorraine hasn't missed any of Mattie's birthday parties, and has been part of Mattie's life since he was born!
Left: Vicki and Mattie discussing his cupcake creation!
Right: Mattie's buddy Campbell! Campbell and Mattie met each other in Kindergarten and have been good buddies ever since. Mattie's party was at Campbell's house today.
Left: Ann got these HUGE fly swatters for the kids. The kids used the swatters to swat at bubbles and other fun objects. You can see Tanja in the background encouraging the kids to swat at the bubbles.
Right: James (Campbell's dad) dressed up as a ROACH, to present Mattie his roach birthday cake. James was a major hit today with the kids!
Left: Mattie checking out his cake! Featured from left to right is Katharina, Vicki, Mattie, Peter, Abigail, Zachary (Mattie's good buddy from preschool. Zachary stayed close to Mattie throughout the entire party!), and James, our favorite "roach"
Right: A close up of the cake. The cake was designed by Specialty Cakes by Design (www.specialtycakesbydesign.com), and we want to thank Jennifer (the cake designer) for contributing a portion of the cake cost to Mattie's fund! The cake was very special and tasty too!
Left: Mattie, Abigail, Katie, and Kate swatting James (the roach).
Right: Mattie and Ann wrapping poor James in paper! He looked like a mummified roach by the time the kids finished with him. James was an amazingly good sport!
Left: Mattie holding his pinata, which was in the shape of a bee. I found it interesting that Mattie did not want to hold a bat and swing at the bee, but I understood. He on some level knows his abilities are different from the other kids. But Ann allowed Mattie to lead the activity by calling up his friends one by one to hit the pinata.
Right: The birthday gang! Front row: Charlotte and Abigail. Middle row: Livi, Sara Catherine, Mattie, Kate, and Zachary. Back row: Michael, John, Katharina, Katie, and Peter.
After the party, we dropped Mattie off at Ann's house for a sleepover. Mattie was excited beyond belief. Peter and I can't thank Ann enough for giving Mattie this special evening, not to mention giving Peter and I an opportunity to restore our mental health. We want to thank Mattie's social worker, Denise, for providing us with a one night stay at a local hotel. The hotel couldn't do enough for us, because they know about Mattie. They gave Peter and I an amazing room overlooking Georgetown (we can actually see the hospital in the distance, funny, no?), wine, and chocolate covered strawberries. So we are getting spoiled and treated very special today. I wish the reason was for something happier than Mattie's illness. None the less, as I am signing off for tonight, but wanted you to know that despite our hardship, are eyes are wide open to all the wonderful people in our lives who have made today possible! THANK YOU!
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Friday was quite overwhelming. Although I am sure it was not as smooth as it read in the blog, I have to say that Mattie has come miles from where he started with regard to scans and tests. I think back to when he had to be sedated for every scan and I am really amazed at how far you have brought him. That said, it is hard to be happy or positive when the tumors are still growing in Mattie's lungs. If Mattie is to have a chance at remission there really isn't any option other than surgery. I saw the two postings (Emma's mom and Keaton's mom) and it appears there may be some chemotherapy that is effective on lung lesions and I know that being the thorough researcher you are that you will chase this down and get as much information as possible to go forward with post surgery. All anyone can say is that you and Pete made and will make the best decisions you can based on what treatment is available, Mattie's condition and your love for your son. What the rest of us can do is support you, your decisions and pray for the best possible outcome."
1 comment:
Wow, what an amazing party! It looks like Mattie had a ton of fun. Yay! :-)
I was so sorry to read about the lung tumors and the ineffective chemo. It sounds like you are in touch with other osteo parents and will be fully informed as you try to decide what's next. I know you will do your best! This is such a hard road...but just look at all the love and support you have. All the highs and lows are okay...just keep going. It's good to read about your night away.
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