Saturday, October 31, 2009

Saturday, October 31, 2009

Tonight's picture features Mattie in his Halloween costume in 2008. One afternoon, Mattie and I were visiting the Lombardi Clinic at Georgetown Hospital for treatment. While in Clinic, Jenny and Jessie (Mattie's art therapists) invited Mattie to pick out a costume he wanted to wear for Halloween. An organization generously donated hundreds of costumes to the Hospital, and Mattie was one of the first children to pick out a costume. Keep in mind that Mattie had one of his three limb salvaging surgeries behind him by that point and therefore he was very careful with the use of his right arm. Mattie assessed all the costumes in the room, and decided to be a mummy! It was actually an excellent choice not only because he looked adorable in this costume, but because it was an easy costume to get into and also because it hid the fact that his arm was bandaged from surgery, which was important to Mattie. Halloween was a big event at the Hospital, and it seemed to me that Mattie had two days filled with all sorts of activities and parades! I am so thankful that we have these memories.

Poem of the day (Thanks Kristi! Kristi's son, David, is an osteosarcoma survivor!): IF I KNEW

If I knew it would be the last time

That I'd see you fall asleep,

I would tuck you in more tightly and pray the Lord,

your soul to keep.

If I knew it would be the last time

that I see you walk out the door,

I would give you a hug and kiss

and call you back for one more.

If I knew it would be the last time

I'd hear your voice lifted up in praise,

I would video tape each action and word,

so I could play them back day after day.

If I knew it would be the last time,

I could spare an extra minute to stop and say "I love you,"

instead of assuming you would KNOW I do.

If I knew it would be the last time

I would be there to share your day,

Well I'm sure you'll have so many more,

so I can let just this one slip away.

For surely there's always tomorrow to make up for an oversight,

and we always get a second chance to make everything just right.

There will always be another day to say "I love you,"

And certainly there's another chance to say our "Anything I can do?"

But just in case I might be wrong, and today is all I get,

I'd like to say how much I love you and I hope we never forget.

Tomorrow is not promised to anyone, young or old alike,

And today may be the last chance you get to hold your loved one tight.

So if you're waiting for tomorrow, why not do it today?

For if tomorrow never comes, you'll surely regret the day,

That you didn't take that extra time for a smile, a hug,

or a kiss and you were too busy to grant someone,

what turned out to be their one last wish.

So hold your loved ones close today, and whisper in their ear,

Tell them how much you love them

and that you'll always hold them dear

Take time to say "I'm sorry,"

"Please forgive me," "Thank you,"

or "It's okay."

And if tomorrow never comes,

you'll have no regrets about today.

Peter and I had the opportunity to spend our first Halloween without Mattie with Ann's family. Peter snapped a picture of all of us today. From left to right in the back row is Michael dressed as Indiana Jones (Ann's son), Katie dressed as a Candy Corn Witch (Ann's oldest daughter), Ann, Vicki and in the first row from left to right is Mary (Ann's mom) and Abigail dressed as a jeweled witch (Ann's youngest daughter).

Peter went with Ann's family to her community's parade and party, and eventually Peter went trick or treating with Ann's son. However, before Peter and Ann left the house today, I gave them light up Halloween necklaces that belonged to Mattie. I wanted Mattie's presence to be remembered today, and I knew those necklaces meant a lot to Mattie. So I feel on some level he was with us today in spirit.

Ann's mom, Mary, and I stayed at Ann's house this afternoon and chatted. I did Mary's nails and we had an opportunity to talk about various things. Mary felt bad that I stayed behind to keep her company, rather than going out with the others. But I told her I wasn't feeling well and did not want to be running around in the rain, but also before I could continue on with my explanation, she acknowledged that I probably did not want to be around other children right now. She was correct, and I told her that I would never have guessed that Mattie wasn't going to be alive to celebrate Halloween this year. I certainly worried about his future, but I never let my mind accept the fact that his cancer was SO aggressive that he wouldn't survive even two months off treatment. Mary and I handed out candy to many children tonight, and we got to see lots of costumes along the way.

Was Halloween difficult for me? I acknowledge that it was a holiday, however, without Mattie present in my life, today was just another day in a long string of days without Mattie. So in that sense, it was a HARD day. The essence of Halloween and my loss for Mattie hit me however, NOT when giving out candy, but when I saw Ann sitting on the floor with her children, sorting candy later in the evening. Sorting candy would have been a Mattie activity. This is something he looked forward to. In fact, the sorting and classifying of candy was more important to him than the candy itself! After all, Mattie really did not like candy or sweets in general. I still remember how last year Mattie became entrepreneurial. He decided after he sorted the candy, that he was going to try to sell it to Peter, myself, and Emily (one of his favorite babysitters). It was a riot to watch Mattie's art of negotiation.

We had dinner together at Ann's house and then Peter and Bob watched the Yankees and Phillies baseball game, and I sat with Ann and chatted with her for several hours. Peter and I did not spend this day alone and isolated, which could have happened. There are many days that I do not feel like I am a part of anything, so I very much appreciate Ann including us and making us feel as if our lives have meaning and purpose and for including us as a part of her family.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am thinking of you today as I see all this Halloween stuff all around us and I know this day is difficult for you. Please know you and Mattie will be in my heart tonight as I answer the door for all the children and I wish fervently that one more seven year old was in this crowd. I am glad that you have a place to be tonight with Ann and Mary and I hope that you are able to cope.Whatever you feel (sad, angry, indifferent, tearful) is right, do what you can and if you cannot be the one at the door, that's okay too. Don't ask more of yourself than you can give right now. I will be thinking of you, praying for you and holding you gently in my thoughts tonight."