Friday, November 13, 2009Tonight's picture was taken on November 13, 2008. Mattie, with the help of Jenny, Jessie, and Linda, created a wonderful birthday surprise for Peter in the PICU. The surprise was filled with amazing cupcakes from the Georgetown Cupcake Company, balloons, hand crafted cards, and the special gift to Peter was that Mattie created a model magic birthday cake for him. The cake included model magic candles and Mattie painted the entire cake in festive colors. Peter has this artistic cake still sitting on his bureau, and I couldn't help but admire it this morning, and pause. I paused because it is hard to believe that Mattie was with us two months ago. As Denise, Mattie's social worker stated, this year is filled with many "firsts" for us. She is 100% correct. Every aspect in our lives now is challenging, because we are doing it as a "first," or in essence the first time without Mattie.
Poem of the day: When Life Gets So Hard by M. Garren
I wanted to find some words on a card
That would help to get through it when life gets so hard.
It seems you can't bear it-perhaps can't go on.
When deep in the heart there's no trace of a song.
Some words that would comfort-when late in the night
The trials return and you're too tired to fight.
Or the tears flow so often it seems you'll run dry.
And life gets so tough that you just want to die.
Or at least go and hide-where you're safe from all pain.
Someplace you can rest until you find joy again.
What are the words you so need to hear-
That will help and will heal and will remove all the fear-
That builds up inside until you think you'll explode-
What are the words that will lighten the load?
If only I knew the right words to say
To encourage and Bless you or comfort some way.
I know not the words but this I can do
I shall offer up Prayers to the Father for you.
Today was an absolute whirlwind. I had a doctor's appointment at one of the larger hospitals in Washington, DC. Mind you I am used to smaller hospitals, and get directionally challenged in larger spaces. In any case, I was happy I got to the doctor's office on time without getting lost. However, when I got there, I learned that the doctor wasn't in that office location today, she was in a different tower in the complex. I understand these things happen, but when I asked the office staff person for directions on how to get to this different location, she just looked at me. I knew I spoke clearly, I knew what I asked her made sense, but I was very confused by the dumb founded and annoyed look I received in return. So I proceeded to tell her that I was not familiar with her hospital, and would like her to just give me some basic directions. By this point I thoroughly annoyed her and she started to shake her head back and forth and talk in an attitudinal tone. I was in no mood for this behavior today, so I gave her a piece of my mind, and the people sitting in the waiting room were smiling at me because it became clear that they had their own issues with this woman. I got the information I needed from her, but I told her that it was a shame that answering a patient question, and helping someone was too taxing for her today and most likely in general.
When I got to the next office location, it was like a night a day difference. Everyone in this office was simply delightful, patient, and couldn't do enough for you. It was health care extremes at its finest! The doctor spent an hour with me. Almost unheard of in the medical industry. She spoke to me about Mattie and a whole host of other things. One thing that we concluded today after talking and her examination was that I was misdiagnosed and labelled with a physical condition years ago that I most likely don't have. What upsets me greatly though is the medical treatments I received in the past to supposedly correct my condition. These treatments were highly, highly painful, and as I told the doctor today really barbaric. She actually agreed! I suspected the initial specialist I saw was incompetent, which is why I left his practice years ago. Why am I telling you this story? Because I guess I feel as if it is important to accept that medical doctors MUST be challenged when you assess something about your health or treatment is not right. It isn't easy to always do this, but no one can advocate for you better than you. Good doctors respect being challenged and actually look at your ability to do this as a favor to them. Because in essence by speaking up you are reporting concerns, giving feedback, and helping with the assessment process. I could see that my verbal nature was not a problem for the doctor I met today. We started even talking about the grief books I was reading, along with the necklace Mattie made for me around my neck. She noticed it and commented on it, I did not bring it up. She did say that Mattie's death makes no sense, but that if his death lands up inspiring me to do something about Osteosarcoma and helping others, then she thought that was a very touching tribute to Mattie's life.
This afternoon, I went to our vet and picked up Patches, our calico cat. Patches has been boarded there for about a year now. Patches is a very sick cat and has a thyroid problem, that was not correctable through the radio isotope procedure she received. It was my hope that this procedure would help her, but not unlike the rest of our life, Patches fell in the minority (2%), where the treatment has no effect. Peter is very close to Patches, and I thought this would be a nice birthday present for them to have this reunion with each other. Naturally I love Patches too, but I am simply the caregiver in the relationship and she treats me as such, Peter is her buddy. When Peter walked in the door tonight, Patches gave him a big welcome home. She is currently sitting with him on the couch, while I am writing tonight's posting!
Peter and I went out to dinner tonight, and talked about a lot of different things. We have always been the best of friends, and fortunately Peter is used to my highs and lows throughout the years. But losing Mattie is so devastating to both of us, that at times, the loss can feel overwhelming. We are working through these feelings together, which though hard is vital.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "None of us really "know" what happens when we die but most of certainly hope there is some opportunity to be with our loved ones after this life. Even were there some guarantee, I don't think it would lessen your grief, you are a mom, Mattie's Mom and you want him here where you can love him, see him, hold him and watch him grow. That's what we all wanted for you, but none of us had the ability to make that happen. All we can do is support you through your grief while you and Peter try to find the new pattern in your lives and reconstruct the other pieces that bind you together in love. For today, I hope you and Peter are able to find at least one of those links that binds you together in love."
The second message is from Mattie's social worker at Georgetown. Denise writes to us periodically, and I find her words and insights extremely helpful and comforting. Denise wrote, "Dear Peter and Vicki, I have just been catching up with the blog as I have been on medical leave and did not have the opportunity to read it for a few weeks. I first want to say that I thought Mattie's Memorial Service was beautiful and a true testament of who Mattie was as a person and what he meant to so many people. Each speaker's presentation created a continuous thread of the fabric of Mattie's life. I found it particularly poignant because the speakers represented different parts of Mattie's life and many did not even know one another, yet there was commonality in their sentiments. It is my hope that you received some comfort in knowing how much Mattie was loved and how special he was to so many people. Grief is a very individualized process, each of us must go through it in our own way and in our own time and on our own terms. We may be surrounded by supportive, caring, loving people, yet we can often feel alone and as if no one can understand how we really feel. On some level that is true, because "our experience" is "our experience". I say that to say, everything you are feeling right now is normal. Please be patient with yourselves and allow yourselves to feel what you feel, anger, resentment, heartache, pain, suffering….all the hard emotions that no one wants to talk about because it makes us uncomfortable. Right now your experience may seem senseless and and it may never make any sense, but in time you will figure out how it fits into your life… into your reality. You will define what role you want this experience to play. You will not go back to life before Mattie's illness that part of your life has come and gone. You have been transformed by your experience of the past 13 months and you will create a new life on the other side of grief that incorporates that experience. Grief has a beginning but it's end is questionable. It is something that can be triggered years later, by a smell, a date, a place or someone who reminds you of your loved one. It can take you back to that place of pain and sorrow, but it will not be necessarily as strong and powerful as what you are experiencing at this moment in time, because prayerfully, healing will have taken place. Healing does comes. Second by second, minute by minute, hour by hour. It may not feel like it, but it does happen in small increments that we are not even aware of. Mattie is part of who you are, he will be with you forever. You will figure out how you want to incorporate his memory in your ongoing life and for each of you that may be different. I am thinking about you as the holidays approach and what the beginning of life's "first" without Mattie's physical presence may mean to you. You might want to think beforehand how you want to incorporate Mattie's memory into your traditions or whether you want to create new ones before the holidays arrive so that you aren't even more overwhelmed by your grief as you begin to approach the"first." Even though you are going through tremendously hard times, I can see that you are living with meaning and purpose, as you assist and support Ann and her family and as you create the foundation to honor Mattie and find a cure for osteosarcoma. HOPE has been your mantra during these past 13 months and it is my hope that you will continue to allow it to be your mantra as you move through your grief process. HOPE for a life reflective of the beautiful spirit and meaningful life that you gave to Mattie. The two of you were so much a part of Mattie and now you will reflect back to the world what Mattie has infused in you. As in your tradition on the blog, I will leave you tonight with this quote."
"Death leaves a heartache no one can heal, love leaves a memory no one can steal." ---From a headstone in Ireland---
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