Tonight's picture was taken in June of 2008. One month before Mattie was diagnosed with cancer. Mattie was attending his friend, Campbell's birthday party. Mattie had a ball at this party. It involved all his favorite things, water and a moon bounce. In the picture you can see Mattie picking up items that fell from a piñata. You can clearly see him negotiating items with the other kids.
Poem of the day: Four Candles for You
The first candle represents our grief.
The pain of losing you is intense.
It reminds us of the depth of our love for you.
This second candle represents our courage.
To confront our sorrow,
To comfort each other,
To change our lives.
This third candle we light in your memory.
For the times we laughed,
The times we cried,
The times we were angry with each other,
The silly things you did,
The caring and joy you gave us.
This fourth candle we light for our love.
We light this candle that your light will always shine.
As we enter this holiday season and share this night of remembrance
with our family and friends.
We cherish the special place in our hearts
that will always be reserved for you.
We thank you for the gift
your living brought to each of us.
We love you.
We remember you.
It seems to me that there is something about Tuesdays that just make this day of the week simply awful for me. Today did not disappoint. Just when I think a Tuesday can't get worse, believe me it can! Today marks the 30th week that Mattie has been gone from our lives. That simple fact clouds my day. I am walking around, yet over my head, I feel, floats a dark and ominous cloud. My cloud even has a name, it is called grief. However, unlike your world, where days can be somewhat clear and other days cloudy, for Peter and I the weather remains consistently the same. Mentally it is always cloudy and we are never sure when a storm of emotion will break through.
I had a follow up appointment with a doctor today. This doctor and I have a good rapport typically and she has helped me on many occasions. I will spare you the details, however, what consistently disappoints me about many medical doctors (NOT all, because I have met a handful through Mattie's illness that are special and unique professionals) is their inability to empathize, listen, and understand a patient's perspective. Hope is a very crucial word in all of our lives. Without it, what do we live for? As a mental health professional, I know that instilling hope is imperative in working with clients, who are dealing with just about any issue. After all, if there is no hope that things can change and get better, than where on earth does the motivation, commitment, or drive to hang in there, to learn new ways of thinking and coping come from? Instilling hope isn't easy, but necessary. Techniques and treatments are only as good as the hope they offer. Hope is not a concept that is only instilled by mental health professionals, I would also like to think this same vital concept applies to the medical profession. I learned through Mattie's battle that science can only take medical doctors so far in the treatment process, however, if these doctors did not instill hope in us, we could never have marched forward and helped Mattie through15 months of chemotherapy, limb salvaging surgeries, and cyberknife.
Hope is a powerful change agent, and unfortunately in my interaction with my doctor today, I felt that through her candor about personal issues she squelched my hope regarding just about everything. I also think that medical doctors sometimes do not realize that we listen to the words they use and can take them to heart. I am sure my thoughts are confusing to you because I am not talking in specifics. I am physically fine, so I don't want you to think she delivered me bad news of any kind. She did not. When she and I were talking, it had nothing to do with the medical issue I went to talk to her about. She was speaking about my loss of Mattie. My point is when talking to others, being cognizant of the words, we use with each other is important. How you express your thoughts can impact and hurt those around you. I am not suggesting you lie or suger coat your communication, but I am suggesting, if you place yourself in that person's shoes for a minute, I have a feeling you will find a more effective manner to communicate the intended information.
After this fiasco, I met up with Ann and Alison for lunch. They listened to my feelings about this doctor visit today, and then we also chatted about the walk. Mattie, Peter, and I loved last year's walk. However, being inundated with Mattie's care last year, I did not know all the behind the scenes operation of hosting such a walk. I am getting a quick lesson this year, and am SO thankful that we still have such wonderful support from our communities.
Tonight, we had our second Mattie Miracle Cancer Foundation board meeting. Our board is comprised of professionals, who lead very busy lives. Yet with that said, everyone participated in the meeting, whether live or by phone. The board has really helped us refine our mission statement and goals, and I felt as if I left the meeting charged with a more solid direction. As this unfolds, I am sure you will hear more about this direction. Peter and I feel very lucky to have connections with each of our board members and I greatly appreciate their insights and their sensitivities for how difficult a time this is for us without Mattie.
After the meeting, Peter and I walked to a restaurant close to our home. We ate dinner outside, and I filled Peter in about my day and the whirlwind of emotions going on in my head. Despite Peter having a full day at work, he seems to manage to be able to have the energy to deal with my ranting and ravings. He listens, understands, and empathizes. If that is not the sign of a true friend, then I don't know what is. At this point in my life, I feel as if I have self perception problems. I no longer feel like an educator, counselor, or parent. My public speaking abilities have suffered greatly from dealing with Mattie's cancer. I went from a person who could easily talk in front of people or in meetings each week, to having little or no interactions with groups, and thereby I no longer feel capable of doing this. I express this as an illustration to the profound impact Mattie's cancer has had on our lives, so much so that it has wreaked havoc on how I define myself as a person.
I would like to end tonight's posting with five messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I, and many others, thought of Mattie this Sunday. I believe those thoughts transcend and Mattie knows how much he was thought of, and by so many. I hope you also realize we not only think of your brave and courageous little boy but we think of you and the love that you have for him. That love too, transcends. It is felt by all of us in your writing, in your generous gifts, and your time. On this Tuesday and everyday, I remind you of how great an impact your Mattie has made on our little world. It is truly an amazing feat."
The second message, I meant to post on Sunday. It is from Meg, Mattie's racing pal. Meg was one of Linda's childlife interns, and Mattie loved her. Meg wrote, "Happy Birthday Super Mattie! You'll always be my hero. We miss you very much and your Mom and Dad are laying out a legacy for you that will last forever, just like your amazing spirit. My Easter prayer is that you are happy and curious, like always. Love you Buddy!"
The third message is from my friend, Charlie. Charlie wrote, "Somehow yesterday's blog made me think of this poem about candles. Perhaps it is because we are still discussing Mattie's birthday (and birthdays should have candles) or perhaps it is reference to candles and holidays (many light candles at Easter and we light them for Passover as well). Usually birthday candles have one for each year and one to grow on; Mattie's "grow on" candle represents the growing spread of his spirit for living and loving to so many people so spread out across the world. I can't think of a better symbol. As I practice today and work to accept the feelings that practice always seems to bring to the surface for me, I will send that energy and willingness to accept what arises to you to help you today. I hold you gently in my thoughts."
The fourth message is from one of my first teaching assistants at the University. Liz is a faithful blog reader and I appreciate her support. Liz wrote, "I have no doubt that the past few days have been particularly challenging for you and Peter. The emotions come straight through the blog and are palpable. I wanted to write on Ann's butterfly book gift to you and how Mattie is all around you in nature. You and Mattie had such a strong connection, it doesn't seem hard for me to believe that he will make his spirit known in special ways and across contexts. For years before my grandmother passed away, she would always tell me that when she was gone, she was going to come back and visit me as a butterfly. Whenever I least expected it, she'd pop out to make me smile or laugh. I always brushed it off but she was telling the truth! I can't tell you how many times since her passing a butterfly has flown by me at the most opportune moment---when I'm feeling sad, happy, pensive, you name it. I seemed to see the most butterflies in the year after her death, making me feel like she was just checking in to let me know everything was ok. These moments are heartwarming and really help me to feel connected to her. I wish you many moments like that with Mattie and I hope it brings you some peace."
The final message is from my mom. My mom wrote, "The Easter blog was a beautiful tribute to Mattie and the spirit of respect for humanity that he inspired in all who knew him in his brief but influential life. All who wrote to you expressing poignantly their grief for his loss acknowledged the power of his legendary heroic actions to change lives and make people more responsive to the trials and tribulations of others and not just walk by ignoring the suffering and pain that is so often conveniently ignored. Your blog is of great importance to anyone who has lost the ability to appreciate the daily blessings so often taken for granted and who in so doing has lost a perspective of what really matters in life!"
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