Tonight's picture was taken in November of 2002. Mattie was 7 months old and riding around our first floor in his favorite toy... tot wheels. This walker was right up Mattie's alley, as it gave him the freedom and independence he so craved. Mattie wanted to walk and run, never to crawl. Though I would hold his hands and walk with him, he much preferred operating without assistance.
Quote of the day: Love Me Enough to Let Me Go (the poem below, I posted on the blog on November 29, 2009)
Your hearts are breaking-
I know, I can tell. Because you're my parents
and I know you so well
As hard as this is, there's something I need to say
I don't want to linger,
don't beg me to stay
Keeping me here only gets in my way
Prevents me from being where I want to be
Out of this body and finally pain free
Living with God is my ultimate goal
By taking me home
He is making me whole
The only thing holding me back,
Mom and Dad, Is thinking of you and the good times we had.
You fought for me when no one else could,
Refused to give up when others told you you should
You packed a whole lifetime of love in (seven short) years
Gave me strength to handle all of my fears
Showered me with courage-you said;
"It's a loan"While secretly hiding tears of your own.
You've done everything I needed.
I couldn't ask for much more
Please love me enough to help me pass through that door.
I know you are sad and it doesn't seem fair
But the time has come to put me in God's care
Since I started the job I was sent here to do
And planted a seed now residing in you.
I'm sure I can trust you to carry my load.
Please love me enough-enough to let me go.
I occasionally go back in time to re-read old blog postings. Today for example, I went back 9 years. Keep in mind that I have been writing this daily blog for TEN YEARS now and counting. What struck me about this posting from years ago were two things: 1) I had a lot of anger back then and at times retreated from the world and 2) I did not have the physical or mental energy to run the Foundation (as the below blog posting was written 27 days after we incorporated the Foundation in Virginia).
Reflecting on these two items, I would say I am still dealing with #1, but now #2 consumes most of my life. Daily I am dealing with Foundation administrative work, conceptualizing ideas, running our programs and the list goes on. I probably am aware of all of this on some level, but nothing compares my thought processes better over time than reading the blog. The blog is basically Mattie Miracle's institutional knowledge, as well as my own personal knowledge from 2008 onward. Or as I always joke, the blog is my therapy. Because I write daily, it is much easier for me to express my emotions using the written word, than the spoken one. Thankfully I have the blog because some of my feelings, highs and lows, anger, and sadness need an outlet. An outlet that others can't serve for me.
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Blog posting from November 29, 2009:
This poem evokes two feelings in me. The first of which is part of me hopes that Mattie feels as if we packed a lifetime of love in his seven short years, that we gave him courage and strength, and tried to meet his every need even in the end. However, the other feeling is I can't accept what this poem is asking me to do, which is to love Mattie enough to let him go. To go with God, I assume. It is my hope that Mattie is in God's care. Growing up Catholic, I was taught to believe that challenging God's plan and mission was neither my place or perhaps it was beyond my understanding. Maybe that is correct, because even on a good day, I still can't fathom having to let my son "go." For what reason?! What could God's plan be? If his plan was for us to witness 13+ months of torture upon Mattie, and now to have to live with the aftermath of such a life threatening illness, Mattie's death, then I must pause and wonder. That seems like a horrific, painful, and devastating plan. I am not saying I am not grateful that God provided us with Team Mattie and Mattie's amazing doctors and nurses. I am forever grateful for this and despite living with grief each day, I try not to forget the many acts of kindness and love I experienced and still experience. But somehow, I realize nothing can bring Mattie back. Nothing can bring my former life and world back, and the scary part is now I am left to live with the broken shell of a self that remains.
I woke up feeling very tired today, and I had my usual headache. It was the kind of day where I wondered if it was worth even attempting to do something "normal." Peter mentioned to me today that while he was flipping through the channels on TV, he came across a cooking show that caught his attention. He went on to tell me that the woman was cooking an Italian dish and as he described it, it sounded good, and I knew immediately who he was talking about. For those of you interested in cooking, you most likely have heard of Giada DeLaurentis. Any case, I told Peter she has a cookbook out that I have wanted to get before Mattie got sick. So we decided to try to get the book today and make a recipe from it. However, even a trip to a bookstore can be a difficult place, because the first thing you see in the front of most stores now is children's holiday books. One of Mattie's favorite authors was Jan Brett. Mainly because he was introduced to her writings in his preschool, and we both admired her illustrations. Naturally, the featured book today was Jan Brett's book, The Mitten, staring me right in the face. But being in the bookstore and then buying the ingredients today to make this recipe somehow did not make me happy. In fact, being surrounded by people only irritated me. There are some days that I can deal with the outside world better than others, and today wasn't such a day. I have been edgy and agitated all day, and unfortunately in such a state, Peter lands up being the recipient of my mood.
I had wanted to go with Peter today to Roosevelt Island, a place Mattie loved to be. However, because it was 60 degrees in Washington, DC today, and it felt like spring, every one and his cousin was at the Island and there was no where to park the car. Some how something so simple, was deeply upsetting to me. I was upset for more complex reasons than not being able to find a parking space. I was upset because I wasn't going to be able to walk on the Island and somehow connect with Mattie. Connect with his memories there, and to be able to walk in a peaceful place and reflect on those memories. Peter could sense I was upset, but I wasn't able to verbalize why.
Later in the day, we attempted to go back to Roosevelt Island, but we still were unable to park. At which point we came home, and we instead took a two mile walk on the Washington Mall. Thankfully it was later in the day, when there wasn't as much traffic or sidewalks streaming with people. While walking we talked about Mattie's Foundation. I will always love Mattie, and I want his Foundation to be successful, but I also know my limitations now. I expressed my feelings to Peter, because at the moment I have to take one day at a time. Though I am not a person who typically looks out for myself, at this point, I realize I must. So my role on the Foundation, will need to grow with me, or evolve as I can handle it.
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