Saturday, March 6, 2010Tonight's picture was taken in March of 2007. Mattie went on an adventure to Key West, FL with Peter's parents, Peter, and I. The sun felt good to Mattie, and I captured him taking in the rays through his hands! It is ironic, when Mattie wanted to absorb his environment completely, his hands and fingers would always raise up, almost like antenna trying to hone in on specific sights, sounds, and smells. Mattie did this with his hands even when he was a couple of months old. Peter and I reflected today how Mattie would move his hands and fingers to the beat of music when he was only a couple of months old. He would raise his arms, and like you can picture an octopus moving its tentacles in the water to understand its surrounding, Mattie's fingers and hands would have the same rhythmic glide and wave!
Poem of the day: A Poem from Kim H. to Trevor
I miss you more than you'll ever know
The world is not the same without you here
Sadness washes over me without a moment's notice
Your presence can be so clear
I wish I could be that Mom again
The one who answered every call
And laughed at all your stories
Who lent the understanding ear
I loved being there for you
I looked forward to all that lay ahead
I wanted the best for you
I lost such a good friend
I still long to see that bright smile
That lit up those Irish eyes
I want to feel the strong hug
I want to hear your contagious laugh
The wait seems so long indeed
Until I can see you again
I just want to be that Mom again
The one who loved you more than you'll ever know
"To be that mom again" as the poem implies is something that I reflect on each and every day. Being Mattie's mom was a very important and vital part of my life. Yes I achieved a lot of things prior to having Mattie, but some how my greatest accomplishment was having Mattie and seeing him develop from a baby, through the toddler years, to his early childhood stages. In a way, seven years went very quickly and of course one doesn't think when raising a child that this will be a finite process. There are days I look at pictures of Mattie and I together and I can't imagine this amazing little person is no longer with me. Coming to terms with this is hard on the conscious level, but I think I am plagued with this acceptance even in my sleep. I had two very unusual dreams last night. In the first dream I distinctly remember there was a little boy sitting on my lap. The boy was laughing, hugging, and kissing me, and I clearly was calling him my son, but I couldn't see his face at all. This is not unlike many of my other dreams in which I think Mattie is present, but I can't identify him. The second dream in this sequence last night took place at a circus like environment. However, the audience members were the participants. I am sitting in the audience between Ann and Peter and I remember jumping up in front of the entire audience to tell them the story of Mattie, who died from cancer. I find it so interesting that in one dream I perceive Mattie to be alive, and the following dream, I am explaining the reality of my situation. Seems to reflect the conflict I am living.
I am honored to learn that many of Mattie's nurses and support staff still keep up with our blog. I could look at this from a very academic standpoint, and say that perhaps they are interested in understanding how parents learn to cope with the loss of their child. But I know better. Certainly this may be a factor, but the real reason, I imagine, is because we connected with these extraordinary individuals while Mattie battled cancer. When you live in a PICU, the nurses become your family. This connection maybe perceived to end once treatment stops, but it really doesn't. It doesn't because the type of bond you make under the most dire circumstances is powerful and real. I will never forget any of our nurses, and as Jenn (one of Mattie's favorite Bostonian nurses) wrote to us today, it only confirmed the feelings I carry within my heart each day. So I say a BIG thank you to our Georgetown angels! Also for those of you interested Jenny (one of Mattie's art therapists) is NOT moving to Oregon, she is moving to Southern Virginia and eventually Colorado. I have no idea why Oregon popped into my head.
Peter and I had a funny morning. On Thursday while helping Ann go through Mary's things, I came across a box with a silver coffee serving set in it. Mary received this set as a wedding gift and kept it all these years. Naturally the set was VERY tarnished. I asked Ann if I could bring it home and try to restore it. When I brought it home, Peter was fascinated by the box the set was stored in. The front of the box has prints of chickens and roosters on it, and it says, "chick n chuck." Well this morning, while I was cleaning the set, Peter and I were having a good laugh at trying to guess what the "chick n chuck" stood for. Clearly the silver set did not come in this box originally. We were guessing all sorts of things from a child's game, to an egg carton, to a small appliance came in this box. We debated this for at least 30 minutes, until I had Peter google "chick n chuck." All we could determine was this was a company based out of Florida that operated in the 1950s, but is no longer an operational company. We couldn't determine what the company actually did. So I feel the only one who could possible solve this box mystery is Mary. This may not sound very funny, but if you could hear Peter and I talking about this, you would see it was an hysterical dialogue. It is the oddest things that can bring about laughter some times.
This afternoon, Peter and I headed to Prince Frederick, MD. We were invited by Brandon (Mattie's big buddy) and his parents to a mass at their church in honor of Mattie. It was a very thoughtful gesture, that seems like a beautiful way to remember Mattie, especially since his birthday is less than a month away. We had a lovely time connecting over dinner, and what is very clear to me is that once you have dealt with cancer you are profoundly changed. Thankfully Brandon continues to have no evidence of disease, however, I think it is impossible to have a child who once had cancer and not worry about whether or when it will reoccur. It is the constant fear one is forced to live with. We shared all sorts of stories tonight about Brandon and Mattie's treatments, and we also reflected on the day Mattie died. Brandon actually came to the hospital to say good bye to Mattie. Understand that Brandon was 18 years old, and walked into a room in which his friend was lying in bed dead. Most adults haven't experienced seeing a dead body, much less the body of some one close to them. Therefore, you can only imagine the great courage and love it took for Brandon to sit in the room with us. Also factor in the fact that Mattie died of cancer, something that Brandon had just battled. Brandon will always hold a special place in our heart, and I believe Mattie had a profound impact on Brandon as well.
Later tonight, I received a text message from Ann. She was attending the SSSAS (Mattie's school) auction. She wanted me to know that to the auction she was wearing the bug pin Mattie gave her for mother's day. Mattie picked this pin out for Ann at the hospital. Mainly because he knew it would freak her out, and he loved seeing her react to his antics. Despite the pin depicting a bug, it is actually a pretty pin, and I guess hearing that she wore it tonight made me smile. Between the mass in honor of Mattie and hearing about the bug pin, I felt as if Mattie was being remembered by those he cared very much about.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I don't know how you do it; to pull yourself up and go out and do what is required, even while you are ill is the true measure of a friend. I know how talented you are at arranging things; I am sure that Mary and Ann appreciated your efforts to help make Mary's new space comfortable. It is disconcerting to be in a new place whether we are old or young and to have familiar faces around all day while we adjust is a blessing. I hope Mary is happy in her new setting and is able to make friends and feel comfortable; all that takes time though. It's funny how we forget that, even though most of us have been through it at least a few times at camp, at college, at a new school...we wonder how others will regard us, will they be accepting or consider us too different to be able to connect with? I hope Mary has found a place where she can make that connection. I know you are having trouble these days finding a reason to get up each morning; some days people feel that even with children in the house, but when they are there, you don't have a choice and once up and around, you keep going. I don't know what will eventually "substitute" in that way for Mattie but I do hope you find something that is meaningful enough for you to want to live again each day. I will be practicing today with a group and I will send my energy to you to help you in your search. I hold you gently in my thoughts."
The second message is from one of Mattie's HEM/ONC nurses. Mattie instantly got to know Jenn one evening when he invited her into his hospital room to exercise to Jerry and Nancy's music. Jenn was a good sport, and Mattie commented to her that she was the only one in the group of us that followed his instructions very well! Jenn wrote, "There's no doubt in my mind you did a GREAT job of transforming Mary's room, because I remember how amazing Mattie's room in the C52 would always look once you were done decorating each admission! I hope you and Peter are doing well, my prayers are with you!"
No comments:
Post a Comment