Wednesday, May 19, 2010

Wednesday, May 19, 2010

This picture was taken last March in the Lombardi Clinic. Mattie just had his dosage of MTP, and was having a reaction. He developed a fever and rigors (which is essentially chills, but intense ones). Next to Mattie and I is Dr. Kristen Snyder. I chose this picture to post, because I am happy to report that Kristen had a baby today, a healthy boy named Conor!

Poem of the day: Saying Goodbye by Brenda Penepent

Go now, my child, the time has come.
All tasks today are done.
There are others waiting there for you,
And songs yet to be sung.
Go quietly, go softly,
Leave all pain and fear behind.
Today has left a part of you
In our hearts, our souls, and minds.
I’ll remember you, my dear one,
As I lay down to sleep.
I’ll remember that you made me smile,
Although, it makes me weep.
As you go to face your future,
As you go to touch the sky
Know that God makes all things possible,
Angels never die.
Go now, my child, the time has come.
All worldly tasks are done.
There are others waiting there for you,
And songs yet to be sung.

Today was another extremely long day. Ann and I met with the logistics team for the Walk this afternoon. We had a productive meeting and one of the things we discussed was what to do if it rains. This is not a topic I like discussing, and for some reason I feel that on a day that we come together to celebrate Mattie's foundation, that we should have SUN! But I realize that is not very realistic. NONETHELESS, Mattie's event is happening whether it rains or shines. Things are coming together for the Walk, and as always I am very grateful to our volunteers. Without them, this wouldn't be possible. We never forget that!

We welcome you to visit the Mattie Miracle website, as Peter has just posted two press releases that may interest you to see. I attached the link directly to them: https://www.mattiemiracle.com/News___Press.html

As promised, I posted pictures from our raffle item wrapping party last night. In the midst of wrapping, our friend, Catherine, was chatting with me about cancer. Catherine is a cancer survivor, and what I noticed is that some of her feelings and thoughts match my own. In many respects, I always refer to Peter and I as cancer survivors, because we intimately helped Mattie through his battle. However, one commonality Catherine and I shared was our need to close off and shut people out of our lives. I would say this has been most definitely true for both Peter and I. At first I was thinking it was only us, because when cancer hits certain families, it sometimes brings them closer together. This has not been the case for us, instead it has thrown many of us apart. What others need to understand is that we are no longer the same people we were two years ago. We have been severely altered, after all how could we not be after suffering multiple traumas (such as Mattie diagnosed with Cancer, Mattie in pain, the side effects of cancer, Mattie unable to walk and care for himself, and clearly the process of helping Mattie die)? It is one thing to read about what we experienced and quite another to have lived in it and through it day after day. A natural reaction after a trauma is to seek out safety, and that could mean retreating from the world for a period of time. I think what family and friends need to do is to have compassion and understanding. Not judgment, ridicule, and the projection of negative feelings upon us. The impact of cancer on a family has been a tragic lesson for us to learn first hand, which is why I feel that one of the missions of the Foundation is to provide social support to children and their families. Support which is unconditional. It is not an easy task by any stretch of the imagination, but one that I am willing to try to achieve as we work at helping one child and family at a time.

So the unveiling you have all been waiting for........... We especially want to thank Carolyn (our Raffle chair) and her committee for the outstanding work they did for the Foundation! They are featuring 8 wonderful items this year!

Left: This raffle item is entitled Pamper Me Package. It includes a day at the spa, and several other goodies. The beauty of this package is the intoxicating lavendar aroma that seems to be coming from the products wrapped inside!

Right: The second item is an Annapolis Sailing Excursion. Sail away for a fabulous day on the bay aboard the Windemere, a 39' sailboat docked in Annapolis.

Left: This item is entitled, "Around the Town" and features gift certificates from many local restaurants and vendors.

Right: This package features Washington National Tickets (on Saturday June 19, Nats vs the Chicago White Sox), along with other fabulous Nat's gear!

Left: The Summer Fun Basket features everything you will need to keep the family entertained and excited all summer long (including SSSAS summer camp, baseball tickets, and top golf membership).

Right: As you can see this is a Washington Capitals Fan Pack, including tickets to a Cap's game and Caps autographed memorabilia!

Left: The Let the Sun Shine In basket features a designer handmade quilt, and various other sunny items.

Right: The last picture is NOT an item, but a statement. This was me after all the wrapping was completed!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am happy to see the end of the rain and I hope that the good weather continues through Sunday for the walk. You have so many wonderful things scheduled and I hope they all happen as planned. More importantly, I hope this gives pediatric sarcoma a much needed boost in visibility and raises funds for the cause. It seems like Tuesday was a really busy day for you and you got a lot of things done for the walk, however, it remains really important that you find the time and space to care for yourself as this project and the foundation will not make it without you. Today as I practice I will send you the energy to help you get the rest of the necessary tasks done and as I work on my balance, I hope you too work on your balance of mixing work and self in a good way. I hold you gently in my thoughts."