Tuesday, August 30, 2011

Tuesday, August 30, 2011 -- Mattie died 103 weeks ago today.

Tonight's picture was taken in August of 2007. Mattie and Peter were posing in front of the Coronado Bridge in California. Peter and I reflect on these trips and how much Mattie loved San Diego. His favorite spots to visit were LEGOLAND (naturally!!!), Sea World, Balboa Park, and he even loved the USS Midway (the retired aircraft carrier, which is now a museum).

Quote of the day: Honest listening is one of the best medicines we can offer the dying and the bereaved. ~ Jean Cameron

Today I signed up for ten more zumba classes. So at this point in my mind it is a commitment. Knowing the teacher helps. I met Jenny at Mattie's school. Her daughter and Mattie were in the same kindergarten class. In today's session several other moms from Mattie's school were also in attendance. As some of my faithful readers know, being around other moms is challenging for me. Especially when the natural discussion is to talk about children. Several of the moms were talking about their fear as it relates to their children growing up and eventually going off to college. A natural and logical fear. A fear probably every parent has for various reasons. Many of the moms were saying that it is hard to see their children growing up before their eyes and they are not sure how they will handle saying good-bye as their child heads off to college. At one time, I could have related to this conversation wholeheartedly. However, instead, today I wanted to basically scream out.... you are lucky you have such a problem. You are lucky that your child is alive, healthy, and developing. Though it is hard to say good-bye to your child as he or she ventures off to higher education, this is the natural order of life. As a parent you want your child to grow up to be independent, self-sufficient, and responsible. What we sometimes forget though is a child needs a parent at EVERY age. The relationship changes and evolves, but the love and need will always be there. Well of course unless your child dies, and then there is no evolution. There are only memories frozen in time. In situations like today, I hold my tongue. I listen, but usually don't respond, because most people can't handle the reality that can spew from my mouth.

In the midst of all of this, I met a woman in my class who is a mother of an only child. This woman learned about me through a mutual preschool friend. She has followed Mattie's battle, and is a loyal blog reader. Though I did not know her, she came up to me and gave me a big hug. When she told me her name, I recognized it because she is a Foundation contributor. The irony is we are both married to fanatical Red Sox fans, and we had a great old time talking about that today! She mentioned that she has wanted to write to me and get to know me, but was unsure how to do this and didn't know what to say. Frankly, what she said to me today was absolutely perfect and knowing that she cared and says prayers for me was extremely thoughtful to hear.

When I reflect on what Mattie's oncologist, Kristen and my friend and colleague, Denise, said today, I pause. They understand how hard some days are and aren't sure how I do it. I don't know how I do it either but having others in my life who reflect back my feelings is very helpful. As Mattie was battling cancer for 15 months, we were right along side him in the process. This meant a total lack of freedom, living in a hospital around the clock, not moving much from his side or his room, not getting fresh air, not being able to eat the foods of our choice, and not getting any sleep. All of these things over a prolonged period of time can make one feel very unhealthy, but what needs to be factored into this equation is we also lived under intense psychological and emotional stress. Life and death decisions were made daily about Mattie's care and seeing your child suffer in horrific ways is torture enough. So I guess when I look at our overall picture it is AMAZING that we "do it" each and every day.

After Zumba class I headed to Mattie's school to walk around the track. Somehow I had to keep moving today. So I walked over 3 miles and also ran into one of Mattie's kindergarten teachers, which was a nice surprise. While walking around, there was a football practice going on. I was oblivious to it, since I was listening to music and just walking and taking in the greenery around me. However, something orange caught my attention while walking. What was it? One of the Mattie Miracle Cancer Foundation's drawstring bags that we distributed at this year's Walk. A teen was walking around the campus with the bag. I am not sure what the bag means to her, but to me it is a solid symbol of Mattie's memory. Which made me happy.

I had the opportunity to visit with Ann's cousins today. Her cousin who had a tumor removed yesterday is home and doing very well. He was up and walking about and we even took a walk around Ann's neighborhood together. This is clearly NOT my experience with people who have had surgery the day before. Most people I have cared for who have had surgery weren't doing so well the next day. I am happy that Ann's cousin is progressing so well and has a positive attitude in the process.

I spent the rest of the afternoon at home working on Foundation items. While working, I opened up our windows and turned on Mattie's fountains. They were very pleasant to listen to and made the work go more smoothly.

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Just a note to let you know that I am thinking of you. When I write friends who I haven't seen in a while I usually say "I hope all is well" and while I think these sentiments to you as well I also know a little bit about how you are from reading the blog.  I admire both of you for trying to function after days without sleep. It's difficult and frustrating that's for sure! Thinking of you this Tuesday and everyday."

The second message is from my friend and colleague, Denise. Denise wrote, "I read your blog post this morning and there are no words for the profound horror and terror of Mattie's illness and his death. While you and Peter were caring for him, you had to literally shove your feelings somewhere so you could care for him both mentally and physically. And it makes sense that those feelings and sensations come up. I so wish there were words. I hold you and Peter in my thoughts and heart."

The third message is from my friend Tanja. As my readers know Mattie died on September 8, 2009. That happened to be the first day of school for most of Mattie's friends. I imagine for friends like Tanja, the first day of each school year will always be bittersweet. Tanja wrote, "I can't even imagine! Summer times, anniversaries, birthdays, diagnosis day and Mattie's passing day approaching... all of this adding up, I don't even know how you can even get out of bed - not to talk about functioning ... and you are still able to help others!!! Amazing. I know the first day of school -- while it is not the actual day Mattie passed away -- I will always remember that day every first day of school and how terrible I felt. Given how bad I feel, I can't imagine how much worse you and Peter feel!"