Tuesday, October 27, 2009Tonight's picture was taken in January 2009, on the top of the Empire State Building in NYC. We took Mattie to New York in January to begin the experimental treatment of MTP-PE at Sloan Kettering. We were very fortunate, there were NO lines to ride the elevators that day and Mattie was able to take the elevator to the highest floor, the 102nd floor. Mattie loved the views and was very excited to be up so high off the ground.
Poem of the day: My Memories by Jessica L. Gray
It seems as if yesterday
you held out your hand
for a walk in the park
a play in the sand
I know it was just last night
I tucked you in bed
saying our prayers
with a kiss on the head
Sometimes I wonder why you had to go
But the answer to this I already know
So much suffering just can't go on
I finally had realized what I knew all along
I had so much to say
I Love Yous to tell
I started to slip
and I almost fell
But I kept on moving
one day at a time
My memories kept going on and on
In my mind
The day you were born
Your first big boy bike
I know you put these there for me to keep in sight
I know you are with me
each hour and minute
I feel you around me
There seems to be no limit
So my darling son
I want you to know
I miss you and
Thank You for helping me let you go
I am so grateful that you have caring,
loving people around you.
I continue to be plagued with migraine headaches, and if you have never had a migraine, consider yourself lucky. Day in and day out of these intense headaches is overwhelming, and the fear I have is, will they ever go away? After all, I am on medication for them, and yet I am feeling no relief. But then again, the migraines are only symptomatic of a much larger and all encompassing problem which is having lived through 13 months of hell and the loss of Mattie.
I had the opportunity to have lunch today with Alison, our Team Mattie Fund Coordinator and our director of communications. It is very nice to be able to meet with Alison outside a hospital setting. We certainly spent many days together in the PICU playing with Mattie and Mattie always enjoyed Alison's great impression of Patrick from the Sponge Bob series. In all reality, Alison is quite good at doing different voice impressions, and when she and I teamed up to play with Mattie, Alison always played the goofy and humorous character, and I was always the more rigid, uptight character trying to keep her in line. Mattie seemed to get a kick out of our interactions and anything that was going to entertain him, only caused us to play more. In fact, one of the cardboard boxes that was on display during Mattie's celebration of life reception featured a cruise ship that he designed. I will never forget that cruise ship, because one afternoon he had Alison and I playing with it for hours. I showed it to Alison during the reception and she too was transported back in time. There are just some objects that Mattie created that hold so many memories for us. Peter and I are very grateful for Alison's involvement in Team Mattie this year, and in the midst of great sadness, we are so happy to have this connection and friendship with Alison.
After meeting with Alison, I headed home, and climbed into bed and slept for two hours. I find that leaving our home now for extended periods of time, wears me out, which only further compounds my headaches. How I went from a person who could work through the day and most of the night to care for Mattie, to now, only being able to function in two hour blocks of time is fascinating. It speaks to the toll that caregiving has on the body, mind, and the spirit.
Tonight, Peter and I had the opportunity to have dinner with Dr. Aziza Shad. Dr. Shad is the director of the pediatric Lombardi Cancer Center at Georgetown University Hospital. Dr. Shad was also the doctor on call during the week Mattie died. She did a phenomenal job helping Mattie die in a humane and comfortable way, despite the fact that for Peter and I the sight and sounds were horrific. I shall never forget the sound of Mattie's "death rattle." The sound that seemed to be coming from deep within his lungs as they filled up with fluid and were drowning him from the inside out. On my way to dinner tonight, I had to walk through the George Washington University campus (GWU). GWU is my alma mater and my employer, and yet I have been removed from this setting for over a year. Tonight was my first real attempt at walking through the campus, in order to get to the restaurant. As I was walking, I noticed all the students, they seemed so alive, energetic, and with purpose. All I could think of was at one time this is how I felt and perhaps looked, and now look at me. I am so different.
We had a lovely dinner with Dr. Shad. She is very easy to talk with, and what you quickly can surmise from her is that she is human first and fore most, and a doctor second. Which is most likely why her patients and their families love her. She isn't arrogant, has no pretenses, but is a competent and talented physician. I saw her handle some of the worst of circumstances, and she did it in a dignified, professional, and compassionate manner. Something I will never forget. We talked about so many things from cancer, families, vacations, and of course grief. Despite living through the worst thing life can throw at you, Peter and I feel very fortunate to have been connected by Dr. Bob to Georgetown University Hospital. This was the right match for Mattie and my family, and it is through this ordeal I had the opportunity to experience the beauty of the whole HEM/ONC care team.
On our way home tonight, Peter and I walked arm and arm in the rain. I told him for some reason this reminded me of our time together in college. Peter was always very gallant like that and despite my mood of sadness, I was able to step out of that for a minute, and remember those happier days we had together. For some reason that made me smile.
I received the message below from my friend, Charlie today. Charlie mentioned to me that she was happy that so many of our Mattie supporters are still there for us and supporting us now. This means a great deal to me and I do not take this for granted. I also consider myself fortunate to have an angel of hope. As many of you know I gave Ann this title early on in Mattie's battle with cancer. However, what some of you may not know is that Ann continues to serve as my angel of hope. She checks in with me many times in a day, and wants to make sure that Peter and I always feel included and needed. In fact, some of you have asked how we are spending Halloween without Mattie. If it were up to me, I probably would be in bed with the covers over my head, but Ann instead has invited us to her house where Peter will go trick or treating with her son and I will be with Mary, Ann's mom, giving out candy to those visiting her house. Not that the evening won't be hard for us, it most likely will no matter what we did, but not being alone through this means a great deal to me.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Often after a death, people stop calling and turn away, not because they don't care but because they are afraid of saying or doing the wrong thing. Then the person or family that is already feeling isolated by the death, feels abandoned on top of it. I am so glad this is not the way it is. It is good to read about your visits with those who knew Mattie and to read of how you shared stories with them. To anyone who is considering calling, writing or making an offer of a visit but is holding back out of fear, I offer this - say how much you care, share memories of Mattie and above all ofter the gift of listening without judgment. I hold you gently in my thoughts as always."
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