Saturday, June 13, 2009

Saturday, June 13, 2009 - 1 Day away from Lung Surgery!

Quote of the day: "You give but little when you give of your possessions. It is when you give of yourself that you truly give." ~ Kahlil Gibran

Mattie's grandparents came over this morning while I was in the shower. When I got finished getting dressed, I found breakfast already made for us. That was a major treat, NOT to worry about food. Barbara, Peter's mom, was feeding and playing with Mattie, and literally all I had to do was take care of myself. What a concept. So Peter and I took our breakfast outside on the patio, and I actually ate in peace, without constant interruptions and crises unfolding around me. Just that alone was a gift beyond proportion.

We then got Mattie dressed and headed over to Tanja's house. Tanja is a friend and fellow SSSAS parent. She invited Mattie over today to play with Katharina (her daughter) and Ann's children. In addition, Tanja's neighborhood was having a picnic and she invited us to this event as well. It was very nice to be included and to be able to participate in activities that were doable for Mattie. Before I continue though, I want to thank many of you who wrote to me this week and invited us to do things with you today. It was VERY special to receive such special invitations, and I know you wanted to make Mattie's last weekend out of the hospital special. This means a great deal to us, and it is my hope that in the future we can take you all up on your thoughtful offers.

When we arrived at Tanja's house, Mattie was introduced to Ginny, Katharina's paraquet. Ginny is a very social and family oriented bird. He instantly gravitated to Peter and spent a good amount of time on his shoulder and hands. However, Mattie was fascinated by Ginny, and really wanted him to sit on his shoulder. When it finally happened we just kept snapping pictures.

Left: Katharina, Mattie, Peter, and of course Ginny (the bird)

Right: Mattie and Ginny!

Mattie also had a fun time in Tanja's backyard. She set up a bubble machine for him, and he used one of the fly swatters from his birthday party last weekend to hit the bubbles. Mattie was then interested on going on a swing. He attempted to on his own, but then quickly got upset and preferred to do this on my lap. It is funny, Mattie always found swings intimidating, but after many wonderful sessions with Kathie, his occupational therapist, he grew to LOVE them. We are back to being fearful of swings again, which in a way is totally understandable, but in my mind is another indication of the set backs we are dealing with. Though in the grand scheme of this year, who really cares if he likes swings or not!?

Left: Mattie swatting at bubbles!

Right: Mattie and Vicki on a swing with Katharina pushing both of us. Katharina was very sensitive and caring about how she pushed us, and I really do have to marvel at the level of concern, sensitivity, and compassion I witnessed in all the children today.

Mattie and Katharina then went upstairs in her house and decided to build a blanket fort. However, this fort took on a life of its own. All the kids got involved, and it became the kids (the good guys) versus the parents (the bad guys). The kids all had flashlights and when they shone the lights on us, it would injure the bad guys in some way. For example, I would melt in a puddle every time they hit me with light. This game went on for over an hour. The kids had a great time attacking Peter, jumping on him, and horsing around. For a moment in time, Peter and I totally forgot about our situation and had a good time. The laughter was contagious and innocent.

Left: Katharina, Mattie, and Michael in the fort brainstorming their strategy of attack on the "bad guys!"

Right: Michael defending the good guys and capturing Peter.

Left: Peter needed to be taken down. He was like the captain of the bad guys today. So after Michael's attack, Abigail jumped on and finished Peter off.

Right: Michael and Katie (Ann's children) in the midst of the attack on the "bad guys."

After the monkeying around, we all headed to the community picnic held at Mattie's upper school campus. The same campus where the walk took place. It was a surreal experience going back to the campus, because all I could picture in my head was the walk, that amazing day and the feeling of incredible love and support. A day I shall never forget! In fact, there were several moms within the community who I DO NOT know, who came up to me today to hug me. Apparently they know about Mattie and read the blog. I was deeply touched. The kids had a good time at the picnic. They socialized, ate, and played around. However, I have two comments. On the way to the picnic (which was walkable from Tanja's house) the kids wanted to ride their scooters to the campus. But because Mattie is unable to do this, they all agreed NOT to do this but to instead walk. I don't know about you but that showed incredible maturity and sensitivity on their part. The second comment is at the picnic, Abigail and Katharina did not leave his side for one minute. Their loyalty leaves me speechless. Sure you could say that their parents influenced them to do this, but my gut tells me NO. This is just who they are, and they give me hope that such young people can think outside of themselves.

While at the picnic, Mattie, Abigail, Katharina, and Tanja went on a treasure hunt (for found objects around the campus). You would be amazed at what they dug up and considered treasure. Like a Starbucks cup for example. They compiled their treasure together and then sat on the field examining it!

Left: Abigail and Mattie hiding from the camera!

Right: Katie, Katharina, Mattie, and Abigail discussing the treasure. In fact, Katie and Katharina then decided to take it upon themselves to try to create a hunt for Mattie and Abigail when they got back to Tanja's house. It was very thoughtful and they truly got into the process.

When we arrived back at Tanja's after the picnic, Mattie, Abigail, Peter, and Barbara decided to check out Ginny. Mattie fed Ginny some treats and just had a wonderful time relating to the bird. In fact, while sitting near Ginny, Mattie stood up, and took ACTUAL steps. He did not even know he was doing it.

The kids then started to settle down and they watched a video together. However, by 9:30pm, they were all hungry again. So as they were sitting down at the table eating and chatting, I decided to snap a picture of Abigail. We have a running joke going. Whenever I want to take a picture of Abigail, she either hides or covers her face. My joke is how can such a beautiful girl not want her picture taken? I told her I will eventually get her when she least expects it, but clearly tonight wasn't one of my better nights!

Before we left Tanja's tonight, Ann and Dr. Bob got back from their trip. It was wonderful to have this homecoming with them. Ann brought back Seagull poop (really jelly beans) for Mattie from Florida. A major hit! My family wants to thank Tanja for opening up her home to us today and including us for an entire day into her life. It meant a great deal to us and provided some normalcy into our lives. What is so saddening is that this is how Mattie's life should be. Today shouldn't be an anomaly, but it is and most likely will be for many weeks to come now.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "First, many thanks to Linda and Denise who helped so much on such an incredibly stressful day. Waiting for test results is hard at the best of times and the stress in this situation was magnified a thousandfold. This news about the scans makes you feel like a punch drunk fighter with blows coming in from all directions and no way to protect yourself or prevent them from connecting. This is incredibly difficult news made even tougher since there is no way to know for a while what you are really dealing with. Not many things are more stressful than uncertainty. I know we were all praying that the news would finally be good; that this surgery might be the last one Mattie needs to contend with, however it appears that may not be the case. I am sure you are not sleeping well with Monday's surgery on the horizon; please do your best to try to get some rest if you possibly can, you will need all your strength going forward. All I can say right now is that you have everyone's support with the surgery on Monday, all our good thoughts and prayers will be with you and we will all be waiting anxiously for news."