The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
November 21, 2009
Tonight's picture was sent to me by one of Mattie's kindergarten buddies, Cameron. Apparently Cameron took this picture of Mattie during Grandparent's day at his school. I am posting this picture because as soon as I opened it today, it captured my heart. When you zoom into this picture, Mattie's eyes were simply stunning and bright, and his smile was priceless.
Poem of the day: A letter from Heaven
To my dearest family, some things I'd like to say. But first of all, to let you know, that I arrived okay. I'm writing this from heaven. Here I dwell with God above. Here, there's no more tears of sadness; Here is just eternal love. Please do not be unhappy just because I'm out of sight. Remember that I am with you every morning, noon and night. That day I had to leave you when my life on earth was through. God picked me up and hugged me and He said, "I welcome you.""It's good to have you back again, you were missed while you were gone. As for your dearest family, They'll be here later on. I need you here so badly, you are part of my plan. There is so much that we can do, to help our mortal man. "God gave me a list of things, that he wished for me to do. And foremost on the list, was to watch and care for you. And when you lie in bed at night the day's chores put to flight. God and I are closest to you.... in the middle of the night. When you think of my life on earth, and all those loving years. Because you are only human, they are bound to bring you tears. But do not be afraid to cry; it does relieve the pain. Remember there would be no flowers, unless there was some rain. I wish that I could tell you all that God has planned. If I were to tell you, you wouldn't understand. But one thing is for certain, though my life on earth is over. I'm closer to you now, than I ever was before. There are rocky roads ahead of you and many hills to climb; But together we can do it by taking one day at a time. It was always my philosophy and I'd like it for you too; That as you give unto the world, the world will give to you. If you can help somebody who is in sorrow and pain; Then you can say to God at night...."My day was not in vain. And now I am contented... that my life was worthwhile. Knowing as I passed along the way I made somebody smile. "So if you meet somebody who is sad and low; Just lend a hand to pick them up, as on your way you go. When you're walking down the street and you've got me on your mind; I'm walking in your footsteps only half a step behind. And when it's time for you to go.... from that body to be free. Remember you're not going.... you're coming here with me.
Peter got up this morning before me, which is not all that unusual, since he has always been a morning person. He went out to run some chores, and when he returned I found that he brought me flowers and had arranged them in a vase. That may sound like a simple gesture, but to me that made me smile. I am surrounded by utter chaos at home, I can't part with anything Mattie created or had, and I live with various stacks of things and piles. I am so conflicted about this, since I am a highly organized person who has the need to straighten and unclutter things, and yet if I do this, I won't be surrounded by the remembrances of Mattie. So until I have come to some conclusion or peace about this, nothing is being touched. But this brings me to the flowers today. The flowers to me symbolize some sort of freedom or connection to nature. Something that Mattie always loved and wanted to be a part of. It is amazing to me how a bunch of flowers today, given with love, could make me feel differently about my cluttered surroundings.
I met up with Ann and Tanja today. Ann arranged for all of us to have lunch and have an afternoon at the spa to celebrate Tanja's birthday. It was very nice to be able to spend several hours of uninterrupted time to just talk, share feelings and thoughts, and then to be able to sit back in a very relaxing environment. I had an opportunity today to sit in the serenity room at the spa, and actually read a book. It was peaceful and cozy and I did not feel the weight of the world on my shoulders for just those two hours. I joked with Ann, that I would pay to just be able to sit in this serenity room two hours a week. Some how that seemed therapeutic.
I am sure you are going to get a kick out of my book choice as well. The name of the book is called "The Christmas List." It is written by Richard Paul Evans, who has been one of my favorite authors for years now. The Christmas List is a fascinating story about a man who has lived a mean and bitter life, treated others horribly, and then one day wakes up to find out that his obituary is in the newspaper. However, one key point, he isn't dead. Through this process he learns the negative legacy he has left behind, how he wasn't truly respected by others, despite being extremely wealthy and powerful, and the one woman he treated miserably, his wife (dying from cancer by the way), is the only person in the end who defends his character. I haven't finished reading the book, but the topic of a legacy and how you want to be remembered is on the forefront of my mind with Mattie's loss.
When I arrived home tonight, Peter and I had a nice dinner together. We had a whole host of things to talk about, and I think I came to one conclusion, escaping today to a spa was a very healthy thing for me to do. Not that it solves my issues, or resolves my intense grief, but I have come to see that I need these restoring distractions in order to be able to handle the next bout of sadness thrust upon me.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Yesterday sounds like it was a full day with a meeting about the foundation (many of us are anxiously awaiting its launch) and the birthday party for Ann's daughter Katie. I can just imagine how difficult watching Katie blow out those candles must have been and the chain of thoughts that they invoked. It is amazing how so often it is the simple things that transport us either to a place of joy or to sorrow. I am so sorry that right now, all these things are far more likely to take you to a place of sadness and grief. I hope that as time passes you can look on these events and see some joy in the time that you had with Mattie; that what comes will be the memory of his smiles, his laughter and his love for you, Peter, his friends and life in general. Try to take some comfort in the fact that Mattie is remembered and his life is celebrated in ways we are only beginning to see. I hold you gently in my thoughts."
Tonight's picture was taken during November 2008 in the PICU. Mattie was standing next to Brandon, his big buddy. Notice the decorations on both Mattie's and Brandon's IV poles. Mattie's (on the left) was decorated using a box that represented a caterpillar smiling (aka "Smiley") and Brandon's pole was decorated as Wall-E, the movie character. When Brandon finished his chemo treatment in December 2008, he gave Mattie his Wall-E IV pole decoration. This meant a great deal to Mattie, and from that day forward "Smiley" came off of Mattie's IV pole and was replaced with "Wall-E" in remembrance of Brandon and the good times they had together in the hospital.
Poem of the day: Go to God by Grace E. Easley
When a friend is feeling sorrow
That you wish that you could share,
And no words of any language
Can remove the grief they bear,
When the unexpected shadows
Fall across the path they trod,
There is no human remedy,
When a brave heart's torn asunder,
And it's courage seems too small
There is no solace found in pain
That overtakes us all.
When hot tears keep on falling'
Til they drench the very sod,
To find someone to dry them,
There's a reason for each heartache,
Though we cannot see it now,
And we grow with every sorrow,
That Heaven will allow.
Though we always seek the sunlight,
Earth is still "a vale of tears"
And only God can help us bear
The burden of the years.
We've simply got to trust Him,
And we can't afford to doubt,
Because He has created life,
He knows what it's about.
Because His dear feet also walked
These narrow paths we trod,
To heal our broken spirits.
Peter and I had the wonderful opportunity to meet with Lauren this morning. Lauren is a St. Stephen's/St. Agnes School parent, but her professional skills are marketing and lobbying. Lauren has met with Peter before and was instrumental at guiding us during the Mattie Miracle Walk (May 2009). Once again, Lauren was generous with her time and expertise today, as she helped us brainstorm some ideas for launching the Foundation soon. Originally we were going to have this brainstorming session by phone, but face to face meetings are important to me especially as it relates to matters involving Mattie. I realize in the world of business and in our fast paced society, face to face meetings are becoming a thing of the past. I certainly respect that, but when it is documented that 90% of communication is non-verbal, I know a great deal can be missed through conference calls. Since I hadn't had the opportunity to meet with Lauren face to face before, it was important that I got this chance today. In addition, I feel Peter and I are a good combination, because he is the one with the business sense, and knows logistically what we need to focus upon, and I consider myself a person who is skilled at reading and understanding people. I think combining these skills, is what has always made us a dynamic combination. I also feel that it is important for me to understand something about the people working with us on Mattie's Foundation. This is a very important endeavor to me, and though it would be lovely to get certain tasks accomplished with each meeting, after Mattie's death I have learned to appreciate slowing down. Slowing down to get to know the person I am working with, understanding their perspectives on life, Mattie, and then of course soaking in what guidance they can offer us. I found our meeting with Lauren today accomplished all these things. We talked about a whole host of things, but I was deeply touched when Lauren told me I was a gifted writer. In a time, where I feel less than gifted in just about anything, it was very special to me to hear how much she feels is conveyed in my writings.
I met up with Ann for lunch and this was a busy day ahead of us since it was her daughter's birthday party today. While I was with Ann at the restaurant, one of Ann's neighbors, Karen, came up to me and asked me how I was. I had met her once before, and since that time she has written me some lovely e-mails. I continue to be amazed by how Mattie's life has touched so many people, and I was very moved by the fact that Karen continues to read the blog.
Ann's daughter, Katie, had an incredible birthday party. It started at her house, all the girls were given instructions for their mall scavenger hunt, and then in four cars we headed to the mall. There were four groups of girls, and each group had an adult paired with them. I trailed after the "pink" team of girls. Fortunately I had gone to the mall with Ann prior to the party and I was very familiar with the clues and the stores. I had a good time watching the girls figure out what items they needed to purchase toward the scavenger hunt, and it was also a lesson in economics, since they could only spend the allotted amount of money they were given. The girls had a wonderful time, and while they were in one store trying to find the most cost effective purchase, I bumped in Lesley. Lesley was one of Linda's childlife interns at the Georgetown University Hospital. Lesley worked closely with Mattie, and what I found so incredibly special is that Lesley reads the blog each day. She wasn't only saying that, she knew exactly how I was feeling and what has been going on in my life. I continue to be amazed by the powerful connections Mattie has made for us. Lesley understood exactly why I was at the mall, and she also understood why the holidays were going to be so difficult for Peter and I. As we kept on talking, Lesley began to cry, and I too began to tear up. There is so much wrong about Mattie's death, and I can only imagine how this has impacted Lesley as well. After all she was a childlife student, who got close to Mattie, and then he died.
The girls at the party obtained some wonderful items at the mall, and then they got to pick a couple of these items to take home with them as party favors. There was a remaining item that none of the girls claimed, so Peter grabbed it for me. It was a nail file. Why? Because when I would travel with Mattie to places like Seaworld, or any other fun place, I would always purchase a nail file with a picture of that place on it. I guess that sounds strange, but remember I am sentimental about a WHOLE host of things. In my purse, if you are brave enough to ask me, I can show you an old Seaworld nail file that I still carry around with me. It no longer works, but I can't part with it. Mattie and I picked it out together during his trip to San Diego in August 2007.
For the most part participating in the birthday party today was fine, until everyone sang Happy Birthday to Katie and then she got to blow out the candles on her birthday cake. There was something about that whole scene that was too raw for me. The only thing I could immediately think about was I will never see Mattie blow out candles again. That there are no more birthday parties for me to plan, and the flow of thoughts just kept coming. However, the energy of the girls in the room was powerful and it helped recenter me, even if it is temporary.
Somewhere along the line tonight, I had the opportunity to have a two minute exchange with Dr. Bob. Since we were both working at the party, having a conversation was not exactly possible. But Bob saw one of the e-mails I sent to Ann and Tanja this week, since he and Peter were copied on it. In the e-mail I basically said though 12 is a lovely age, I wouldn't want to go back in time. Bob asked me why. My answer was because I wouldn't want to relive my current heartache all over again. Once was more than enough. Though we were interrupted, I could sense that Bob felt compelled to say something and wanted me to know none of this was in my control or my fault.
I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "Sometimes the "cure" can be worse than the disease and so it may be with the medication for the headaches. It sounds as though stopping the medication, at least for now is a good idea.As you get further away from Mattie's death, the "protection" of the our natural response of shock to such a horrifying, unbelievable event wears off. As it does, you feel the loss more deeply and think even more about what is now missing from your life and what you will not have in the future. This feeling is "normal" for someone grieving the loss of someone who is very close to them. It is terribly painful, beyond words and I am so sorry for your loss and your pain. There will come a point where you will move beyond this level of pain although I know you will never stop loving, missing and wishing for Mattie. A loss like this cannot be shared but like a broken limb, your friends and family can walk with you and support you even though they don't feel the actual pain. Today, lean on someone for support and don't try to bear the weight all alone."The second message is from a colleague of mine, who also graduated from the George Washington University. Denise is a faithful blog reader and lives in North Carolina. We hadn't seen each other in years, until Mattie's funeral. Denise wrote, "I wanted to share with you that I thought of Mattie (and you) today and it brought a smile to my face. This morning was a little darker than usual because we've been having overcast days, which really doesn't help me to get out of bed (I've never been a morning person). I had already hit the snooze button twice, and had drifted back to sleep after each time. When the alarm went off the final time (I have it set to the radio), "Dancing Queen" began playing. I immediately thought of the stories you shared about Mattie doing his exercises at Georgetown, and proceeded to lay in bed and listen to the entire song. Thought you might like to know his memory continues to live on. You all are still in my thoughts and prayers."
The third message is from another colleague of mine. Melissa also is a graduate of the George Washington University and moved to the mid-west, yet is a faithful blog reader as well. Melissa wrote, "I just had to write. I'm still reading your blog and I'm so comforted to read that though you know I (and others like me) can't possibly understand, I (/we) am (/are) trying to. When I read about you missing Mattie I simply break down. "There are days I try to remember what he sounded like, how he laughed, and my favorite... how his cute cheeks felt as they rubbed against my face. I remember the feeling of his hugs, kisses, and holding hands, but I must admit there are days I struggle to remember his voice. I know that Mattie once called Peter at work, and left him a message on his voice mail. I wish a had a message on my phone too, so I could hear Mattie whenever I wanted to." I simply cannot comprehend the loss, the emptiness, the longing, the anger, the bewilderment you must feel. If all I had left of my daughter(s) was memories and a longing for remembering how her cute cheeks felt as they rubbed against my face--well, I simply don't know, I simply cannot comprehend. Imagining that and knowing that it is what you (and others) are having to endure is truly overwhelming. I don't know that I could stop from crying--I hardly can stop right now, just imagining it. I don't know that I could get out of bed. If and when I did, I don't know how I'd suffer through the existence I was so seemingly cruelly called to endure. I think I'd be so damn angry and yet have nothing to do with that anger, no where to displace it, and so all consumed with my grief. I simply CANNOT understand, Vicki. I am so sorry that you or anyone has to endure this. It is just not right, not fair. I sound like and feel like a little child saying that, and yet that is how it feels when I get close to only imagining what you must be feeling. You are still so amazingly brave and courageous. Some think that soldiers are brave for they are willing to lay down their life for others, many they don't even know. I've never really been able to imagine that or comprehend that. YOUR courage, though, I can imagine. I hate to imagine it, yet I know how it could be my reality or my sister's reality or truly anyone's reality. We don't know how, or why or when it could strike. You, and others, have had to face this horrific battle. I stand in absolute awe of the courage and bravery you show to face each day and attempt to cope, and one day perhaps piece together some sense of a life or purpose for yourself. Thank you for sharing this journey with me/us. I'm so sorry I cannot understand and offer you meaningful comfort or validation from a place of deep understanding. I pray that your connections with other moms/parents who have tragically lost a child will provide some sort of comfort and/or validation to you in the days, weeks, and months to come. I also pray that you will still courageously accept love and help and companionship from those who cannot/do not understand but who LOVE you. May that carry you through some excruciatingly lonely times. Thinking of Mattie and his sweet soft cheeks."
November 19, 2009
Though hidden are my ways.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I think you came up with a really good equivalent for those who have not suffered a loss; it is like moving to an entirely new place and being lost and not fitting in anywhere. Of course the not fitting in is also on the inside as you don't have your own "comfort zone" any longer. But I think there is hope in what you said; sometimes it takes a good long while but eventually you do find some level of comfort and familiarity with your new surroundings even if they are not where you would have chosen to be. It seems the trip to Lombardi was a good one; you got to spend time with some of Mattie's "angels." Again, I see the confirmation that Mattie will not be forgotten; his "footprints" remain on people's hearts and lives even as we don't hear his tread anymore. It's wonderful that you were able to finish the day with positive thoughts and remembrances from the "music team" as remembering the happy times is sometimes hard to do. Today I wish you some happy memories of times with Mattie and the knowledge that you and Peter made those happen."
November 18, 2009
Tonight's picture was taken by Mattie's first preschool teacher, Margaret. I happen to love this picture because it captured Mattie watching a science experiment in the middle of the PICU hallway. The experiment was being conducted by members of the Georgetown University Chemistry Club. The experiment involved taking a rose (you can see Mattie is holding a rose and smelling it), dipping it for a couple of seconds in dry ice, and then immediately tapping the frozen rose on the floor. This would cause the frozen rose to shatter into thousands of pieces. Mattie and the other kids were fascinated by this process. This picture was taken after Mattie's first limb salvaging surgery, and despite his pain, he bravely found his way out of his room and into the hallway.
Poem of the day: EMAIL FROM HEAVEN by Laurie J. Crist
Night had fallen and it was time for bed,
As usual I couldn't sleep, so I prayed instead.
Dear God, I said, I miss my son
But as always, dear God, thy will be done.
I said the words but still I wept,
Then tears were done and finally I slept.
Deep in slumber I began to dream;
It was so real as night visions can seem.
I saw a line standing at Heaven's gate
And a sign that said: Here you must wait.
"Wait for what?" they all cried in dismay.
"We were good; we deserve to go this way!"
But St. Peter waved a hand and smiled at the crowd,
Please settle down, don't shout, not so loud.
And then he explained, before they filed through
That they had a small task he needed them to do.
One by one in a line you may now come along
And register for our website, Heaven.com.
Please give me the screen name of your choice;
Your email address will be @angelsrejoice.
In my dream I awoke and turned on my computer
One email subject said: Your heaven.com tutor.
I opened it up and read my email in wonder;
Surely this must be a joke or a blunder
For there in mail it clearly was stated
That for a reply my son now eagerly waited.
It told me just how I could write my sweet boy;
Now down my face ran a mother's tears of joy
So I answered my mail and then got one in reply:
Dear Mom, it said, I'm sorry I never said goodbye.
But you know that I love you and I always will.
I wish that I could be with all of you still.
But this place is so beautiful, and so serene.
Hard to explain but I know you know what I mean.
And, Mom, I know that in forty or fifty years
You'll be here with me, so Mom, please, no tears.
In the meanwhile, send me an email now and then.
Let me know all the news and how everyone's been.
Until you are here and we are together once again,
Your son in God's light, bless you, Mom, and amen.
I awoke then and knew that I had been sleeping.
My wet pillow made it clear that I had been weeping.
But how I smiled to think if only it could be true,
To hear from my son, and others who had passed, too.
But somehow I feel that my son used this way
To let me know he was fine, and that, everyday,
He is there with the Lord and the angels above.
He sees me from there and he feels all my love.
And although I miss him and will always feel sad,
Somehow a part of me also feels glad.
For I am sure now that he visited me in a dream;
It would be so like him to go to that extreme!
Knowing his mom spends so much time online -
How like him to use a computer as a sign!
So he has the last laugh and someday I can say,
Oh, my son, how you managed to brighten my day!
Wouldn't it be wonderful if this only were true?
That heaven had email and even IMs, too?
But still we can do it the old-fashioned way:
Get on our knees, bow our heads and then pray.
I had the opportunity to visit the Lombardi Clinic today at the Georgetown University Hospital. This is the clinic where Mattie did his outpatient MTP-PE treatments, where he had his doctor's visits, and of course where he would start out every visit before being admitted to the Hospital for treatment. Some things do not change, namely parking. It was hard to park when Mattie was undergoing treatment, and the parking situation today seemed even worse than ever before. Outside the Lombardi Clinic entrance, I met up with two of Mattie's HEM/ONC nurses, Katie (aka, Dorothy from the Wizard of Oz, because Mattie liked Katie's red shoes), and Erin (Mattie and Erin had a deal, with each hug he would give her, she would supply him with large syringes to squirt water). Both Katie and Erin were not wearing their hospital scrubs, so in essence they came in today just to see me, and to spend time in the clinic with me while I was beading. That alone is such a lovely, heartfelt, and generous statement. Since I know the long hours they work, the fact that they would come in on a day off, meant a lot to me. Through our conversation, I learned that Katie no longer works in the PICU. She left her job, and is now going to work full time in the Lombardi Clinic. This is a loss to the HEM/ONC patients in the PICU, but Katie is very much needed in Clinic. The atmosphere in clinic is VERY different from the inpatient floor. There is a level of clinical coldness, insensitivity, and it is hard to connect with the nurses in Clinic. It is my hope with Katie's presence, things will change since she has such a warm and caring demeanor. As for Erin, Erin too is no longer working in the PICU. She is now working with general pediatric patients, who are housed in the transplant unit. Not having Erin in the PICU also seems like a loss to me. Erin was the first nurse to teach me how to change Mattie's central line dressings, and was also incredibly supportive of us, especially during times when we clearly needed it. Which seemed often!
I also had the opportunity to see Jey today. Many of you know that Jey was Mattie's favorite CT tech, and he also considered himself Mattie's big brother at the hospital. Jey gave me a big hug today and told me he thinks of Peter and I each day. He took his hospital scrub off his head to reveal to me that he shaved his hair off in Mattie's honor. What can I say! Mattie would have been very excited over this gesture. Jey told me that he has applied to switch jobs within the hospital, from CT tech to security. I can't help but truly believe that many of the people who worked with Mattie were deeply, deeply affected by his death. So much so that working in their usual job is not only uncomfortable but difficult for them. Jey said he no longer gives 100% of himself to the children he works with. He felt guilty saying this, but as I told him, it made sense to me. He is protecting himself right now because he is grieving the loss of Mattie. Somehow giving other children this level of attention could make him emotioanlly vulnerable again or perhaps it even feels disrespectful to connect on this intense level right now after losing Mattie. In either case, I told Jey that he has nothing to feel guilty about. He is just being human, having real feelings, and I am deeply touched to see how Mattie's presence is still remembered and felt in those who cared for him. I also briefly saw Denise, Mattie's social worker. She joined us at the bead table, but unfortunately she was needed by other families, so she was unable to stay with us long. Denise has been incredibly supportive of Peter and I, and sends us e-mails which I find very helpful and meaningful. Linda also came by to say hi, but today there was a big delivery of toys to the PICU, so Linda had her hands full. The Hospital received many big deliveries last year over the holidays. I remember this fondly, because Mattie would get so excited. He enjoyed helping Linda open the boxes of toys, sort items, and earmark things he naturally wanted for himself. It is hard to believe that he is no longer around to open a present or LIVE his life like a typical child.
Deborah, the bead lady, was nice enough to come into Clinic to meet with me today. I brought her the necklace and bracelet that Mattie made me which needed repairs. Deborah helped me with both items, and she also gave me the time to create another piece that I have been wanting to make for the longest time. Katie and Erin (Mattie's nurses) were sitting with Deborah and I, and they created their own bracelets while we were talking. Deborah was talking about how she is now going back to school and changing professions, which led to the conversation of life plans. She explained that she likes to live her life according to a plan. I concurred with her, but then I said sometimes life doesn't go according to plan, and then what? How do you handle that? What if it not only doesn't go according to plan, but it goes haywire and you lose a child in the process? Deborah was honest in her response, which I appreciated. She said that she doesn't know how she could live her life if she lost a child. That this is something she can't even imagine. That was the perfect response, because that is exactly how I feel.
I stayed about two hours at the Hospital. However, when I was leaving, I felt an empty feeling come over me. I think I was hoping by visiting the Hospital today I would somehow feel closer to Mattie (as I walked many of his paths today) or that I would feel like I was part of something. Connected to a community, connected like I used to be. What I learned instead is that I feel as if I no longer fit in anywhere. The healthy world for the most part hasn't gone through 13+ months living in a PICU only to experience the devastation of losing a son and therefore, I do not feel like I can re-enter this world fully. But what surprised me is I no longer am part of the cancer culture either. I do not have a sick child to care for, nothing to tie me to the Clinic or the PICU for that matter. This was a revelation today that was a little harder to accept. I can equate this to moving to a new house/community. When you move, everything is foreign to you. You clearly do not fit in yet within your new neighborhood, school, or workplace. However, with every new situation, you grow and change in your new environment. Then when you try to revisit your former home or neighborhood, you quickly realize you do NOT fit in there anymore. You have changed, your outlook or priorities are different. Your former world hasn't evolved with you, and then you feel like you are in a quandary because you aren't comfortable in your old or new world. I have moved around several times in my life, so I understand this transitional feeling well. However, now this feeling is on a much grander scale, because I am not simply talking about not fitting into the physical world around me, but it is more of an existential crisis, where I wonder if I am so profoundly different that I can't be happy anywhere or relate to others in general.This evening I was invited out to dinner with Jerry and Nancy. Jerry and Nancy were the dynamic musical volunteer team at Georgetown University Hospital. Mattie loved them, and played many "name that tune" games, and even won a prize for his ability to guess the tunes. What Mattie never knew though was that Jerry and I always rigged the contest. I would e-mail Jerry a list of guarenteed songs that Mattie knew ahead of time. We all had a great time watching Mattie smile, become animated when he identified a song, and then of course would beam if he actually won a prize. One time, Mattie was so energetic, he had everyone, and I mean everyone doing exercises in his room to the music. We had nurses joining in, as well as Nancy and myself. That was a night to remember! Nancy and Jerry helped jog my memory tonight. I had a lovely dinner, and spent the entire time reflecting on Mattie's amazing, but too short life. Jerry told me that I created a legacy already. My legacy was giving birth to Mattie, a boy who touched lives profoundly in only seven years. That brought a smile to my face. Jerry and Nancy signify the happier times we had at Georgetown. Because when Jerry and Nancy were allowed into Mattie's room, that meant he was having a good night. They saw Mattie's humorous, fun, and spirited side, which they reflected on tonight with me. Hearing these stories about Mattie is so important to me, because my current recollection is Mattie dying and in tremendous pain. Sometimes it is hard now for me to step outside my social comfort zone now, but I am happy I ventured out tonight with Jerry and Nancy.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It is very difficult these days with Christmas everywhere. My mother passed away in the month of Dec and I know what it is like to be surrounded by all the holiday music, decorations and festivities and not feel at all festive. And Christmas is not my holiday although I always looked forward to attending the parties when I was in the military and seeing everyone dressed up and having a good time. I went to the ones I could not avoid and I wore more somber clothing and a mourner's ribbon all through the season so that I could point to it and have some relief (take a break or leave when I needed to). Perhaps this is something that would be helpful to you or perhaps you need to avoid the parties altogether. Do what is right and what works for you. I am so glad you have Mary and Ann to turn to, they clearly understand where you are coming from and can support you so that you don't have to be isolated and alone.I hope the trip to Lombardi Clinic is fruitful, be prepared to cry as restringing the beads will be very emotional. Perhaps you can make some sort of memory necklace/bracelet or chain as I did; I found it very cathartic for me and I am still carrying it around with me (in my purse) and I look at it daily. Today, I hope you find some comfort in working and visiting with the Lombardi personnel who also appreciated Mattie's place in our world."
November 17, 2009
Tonight's picture features Mattie in the hallway of the Pediatric Intensive Care Unit at Georgetown University Hospital. He was participating in a science experiment with the University's chemistry club. Mattie loved these experiments, which took place almost every Friday. You can see in this picture, Mattie is focused, wearing a glove, and is trying to catch a ball made out of dry ice.
Poem of the day: Think Before You Speak by Gwen Flowers
today you broke my heart,
In a place that was unbroken.
You did it with your thoughtless words
That should not have been spoken.
You know that I am grieving,
That my pain is deep and real.
Your hurtful words pierced like a knife.
How do you think I feel?
You may not suffer from my loss
Or share this lonely grief,
But I'm mourning my baby,
Who's life was much too brief.
I'm sure you don't know how I feel,
I don't expect you to.
Don't ask me to get over it....That's something I can't do.
Without grief, there's no healing
It's a journey I must make.
It's not the path that I would choose,
but one I'm forced to take.
No matter how you choose to see
What I am going through,
I need compassion and support....
I'd do the same for you.
There is a line in tonight's poem that speaks volumes to me.... "It's not a path that I would choose, but one I'm forced to take."This indeed is very accurate, because no one would select the option of losing a child, but such a tragedy can and does happen in life, and now Peter and I are forced to deal with it. There are times most recently when Mattie's death is too much of a reality for me. It is in those moments when I freeze and feel confused and lost and not sure how I will manage without Mattie being a part of my life. In my head I just keep hearing myself say..... seven year olds are NOT supposed to die. Each day when I enter into my complex's garage, the garage attendant waves at me. The only reason he waves at me is because he liked waving at Mattie in the back seat. This attendant doesn't know that Mattie died, yet each day as he waves at me, I can see him peek to check for Mattie, in hopes that he can wave to him too. The attendant seems perplexed by the fact that I am driving around ALONE, without my buddy behind me. I can only imagine the conclusions this attendant is coming up with regarding where Mattie is, but I am quite certain he would not be concluding in a million years that the reason he doesn't see Mattie is because he died. This is a path no one would expect or accept happening to a young child.
I went shopping with Ann and Mary (Ann's mother) today. It was a big event getting Mary out of her assisted living facility and into Ann's car. Transfers, from her wheelchair to and from the car, are a skill and an art form. But a change of scenery for Mary is vital, and in all reality I relate to Mary's feelings on so many levels. At one point we were in a Hallmark store today, and naturally this store, like many other stores is playing Christmas music. For the most part, I try to tune out the music, the decorations, and the Salvation Army people ringing their bells because to me, there is no Christmas this year. However, while in the store today, the song, "Have Yourself a Merry Little Christmas" started playing and Judy Garland was singing it. I know many of you know I love musicals, but I also love old movies. Growing up, I must have seen every old movie possible with my grandmother who lived with me and my parents. She introduced me to a wonderful world where movies have a story line, intelligent, and meaningful dialogue. Hearing this song in the store today made me flash back to the Christmas holidays when I would watch such holiday classics, like "Meet Me in St. Louis," starring Judy Garland. For those of you who have never seen this movie, here is a description. Meet Me in St. Louis is a 1944 romantic musical film from Metro-Goldwyn-Mayer which tells the story of four sisters living in St. Louis at the time of the Louisiana Purchase Exposition World's Fair in 1904. The song, Have Yourself a Merry Little Christmas, first appeared in a scene in Meet Me in St. Louis, in which the Smith family is distraught by the father's plans to move to New York City for a job promotion, leaving behind their beloved home in St. Louis, Missouri just before the long-anticipated Louisiana Purchase Exposition begins. In a scene set on Christmas Eve, Judy Garland's character, Esther, sings the song to cheer up her despondent five-year-old sister, Tootie, played by Margaret O'Brien.
I put a clip from the movie below in case you want to hear Judy Garland singing this wonderful holiday favorite.http://www.youtube.com/watch?v=5g4lY8Y3eoo
So despite my best effort to avoid Christmas, the magic of Christmas entered my spirit through this song today. In fact, I landed up tearing up in Hallmark because to me this is a sad holiday song that captures the heartbreaking feelings of losing something or someone. Pretty soon after hearing this song, I met up with Mary at the store, while Ann was purchasing things for her mother. I bent down to talk to Mary, and she could instantly see I wasn't doing well. So she started talking to me. She said she was concerned about me because I looked tired and then she said that she understood how I felt because how could I feel any differently. My life has been forever changed. I just nodded my head yes, she smiled at me, and nothing else needed to be said.
We all went out to lunch together as well and right near our table was a newborn little boy. Naturally as I observed this baby today, I couldn't help but wonder why my little baby grew up to become so sick. In fact, I don't look at babies the same way anymore. Babies should be viewed as the pure symbol of joy and life, but in my case, I can't help but associate babies with intense grief, loss, and pain. I can't help but wonder why Mattie was chosen to develop cancer, why we were forced to experience and witness this torture, and remain living to tell about it? Why are we so unique? Why is this our calling? I rather not be so unique and special!
On Wednesday, I am returning to the Lombardi Clinic for the first time since Mattie's death. I asked Linda (Mattie's childlife specialist) if I could work with Deborah, the bead lady. Deborah helped Mattie and I create necklaces and bracelets while Mattie was in clinic receiving treatments. However, two of Mattie's creations need to be fixed (since I wear them a lot), and I asked Linda if it would be possible to return to do this, and perhaps create another piece. Linda, as always, is very supportive of me and has set up this meeting tomorrow. I believe I will also be seeing some of Mattie's nurses tomorrow, so this should be quite a moving day. In the evening, I will be getting together with Jerry and Nancy. Jerry and Nancy were the hospital volunteers who played "name that tune" with Mattie and also gave Mattie an electronic keyboard. They were one of our favorite set of volunteers, and therefore, Wednesday in a way is like returning home again. Filled with all sorts of emotions and memories.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Doctors. Some are "People persons," some are properly trained to understand the whole person concept and some are not much more than good in their specialty. Unfortunately, you went to the last kind on Monday. It seems your batting average was "2 out of 3" for good ones which given the current state of training of physicians is better than most, however, it doesn't help when you run into the insensitive ones. I do hope that in spite of the poor patient relationship he was able to give you some positive news. As always, thank goodness for Ann and her unwavering support; she certainly understands where you are right now. I read Sara's email and all I can say is that talking about Mattie and things he enjoyed, things people remember is never a bad thing. Just because someone refrains from mentioning his name doesn't stop you from thinking about him and it helps to know that others are thinking about him as well. The unhelpful words are "you will get over it," "this will pass" or other comments that imply that somehow you will forget the loss of your son. That will never happen. Grief does lessen with time but the loss never leaves us. Try to do something for yourself today even if only for a short time."
November 16, 2009
Tonight's picture was taken in November 2008, after Mattie's second major limb salvaging surgery. Within two days after the surgery, Mattie decided to show off his skills. He found the strength and energy needed to lift his leg. No amount of bandages, drainage tubes, or pain was going to hold him back! Again notice the SMILE!!! When I look at this picture I sit in amazement. Mattie had a spark for life, and certainly I always knew that cancer could take his life, but a part of me never thought it would be this soon. After all how can a disease claim the life of someone so energetic, so humorous, so in love with life? I have no answers other than cancer can do anything and it does it on its own timeline not ours.
Poem of the day: My Son by CB
It’s been two months since you went away
And yet it seems like yesterday.
When you were born you stole my heart
I never thought we’d have to part.
I believed I would always see
You in my world and so loved by me
Now all I have are the memories of you
Will those be enough to get me through?
Long years ahead, I have no clue
How I am to build a life anew
Without my son, my pride, my joy
What is my life without my boy?
Today I had the pleasure of having an appointment with a new neurologist. I use the word 'pleasure' VERY loosely. Before Mattie's illness and death, I really did tolerate most physicians and I could handle those with attitudes and very large egos. However, my ability to handle certain things now has greatly diminished. Perhaps it is Mattie's doctors who have spoiled me. Mattie's doctors were human FIRST and doctors second. I am not implying these physicians weren't competent and talented too, they are most definitely, but they also understand the need to connect with a patient on a very open and genuine level. Certainly oncology versus neurology are two very different fields, but why can't all physician's value this connection with their patients? I guarantee them, they would learn more about their patients if they did! After all, you are coming in to talk to a doctor when you are not feeling well and are most vulnerable. Who wants to share anything personal about one's self when you have a physician who is attitudinal and judgmental sitting across from you?
Today's physician had several strikes against him. He is the third doctor I have seen since Mattie's death. With each of these doctors, I begin the appointment by alerting them to the major loss I have experienced. The other two doctors I saw recently, couldn't say enough to me about Mattie's death. They actually acknowledged what I said, and also acknowledged that this could affect my physical health. What a concept! After I told the doctor today about Mattie, at first he literally had no reaction, and then after about a minute, mustered up the strength to say he was sorry for my loss, but moved on with the appointment. That was strike one in my book. Strike two came quickly after that when I asked him about a previous test result and why my former neurologist seemed concerned about it. Not only did he tell me he was "underwhelmed" by these previous results, but then implied that I may have misheard what the former neurologist was telling me about this issue. Certainly I am tired now in my current state, but I assure you, when it comes to my health or those I care about, I listen very carefully, and I remember things fully. Not only did I find his tone insulting, but I did not like his judgmental nature of telling me he was underwhelmed. I am happy he is underwhelmed, because I am totally overwhelmed by everything in my life. What is underwhelming to a doctor, can still be overwhelming to a patient. The final strike today came at the end of the appointment when he asked me if I was in therapy. In his mind, I should be seeking mental health services because of the nature of my loss. He knows nothing about me, yet feels QUALIFIED to recommend that I need services. I am not qualified to prescribe or recommend neurological medications, and I think he shouldn't feel qualified to assess and determine when someone needs therapy. By the time I left his office, I wanted to throttle him, and he is lucky Ann was with me, because otherwise, I may not have kept myself in check. A part of me wanted to stop and educate him about the fact that real grief work/therapy doesn't begin until about 6 months after the death of a loved one, but I neither wanted to waste my time or breath on him. I just sat back today and wondered what he does to other patients who are not trained in the mental health field!!!!
To add insult to injury, I also underwent an hour long MRI today. For those of you who have taken a MRI, you know how loud it can be inside the machine. You are strapped to a table lying down, a grill is put over your face, and you are moved into a tube in which you feel extremely confined. The only way I can handle this test is I NEVER open my eyes the entire time I am in the machine, because if I did, I most likely would panic. I am not sure if some of you are familiar with the electronic game, Simon, but I swear while lying in this machine today I felt like I was transported inside this electronic game. The intense beeps, bangs, and pulses of noise were deafening at times, but after about five minutes, I talked myself into ignoring the sounds and this helped me tremendously. Of course I did not like receiving an IV with contrast in my hand either, but what this automatically reminded of was Mattie's time at Georgetown. Mattie put up with SO many scans. I will never forget the first time his doctor prescribed a MRI for Mattie. This particular doctor felt as if Mattie could undergo this procedure without sedation. That was ludicrous, and really inhumane, and fortunately Mattie had the where with all to say NO! As an adult, a MRI is daunting, but to ask a sick and scared child to be confined to a tube, making horrendous noises is really over the top. So while sitting in the scan today for an hour, I couldn't help but remember my brave and courageous boy.
In between seeing the doctor and having a MRI, I had lunch with Ann. She was in my neck of the woods today since she sat with me through my doctor's appointment. I took Ann to the Chinese restaurant in our complex. We sat at Mattie's table. Mattie enjoyed visiting this restaurant because he liked the owners and would even say a few words in Chinese to them, which they got a kick out of. I can't look at this table the same way now, because with Mattie, bags of Legos always came with us to the restaurant. Many a night, we would be attempting to eat and building at the same time. That vision came back to me today while sitting there. While at lunch I had the opportunity to verbalize how I was feeling on Sunday, and just how awful that feeling was. The weekdays are hard enough, but the weekends are miserable. Before Ann and I departed company today, she gave me a gift. I wasn't expecting a gift, and when I asked her why she was giving me a gift, she said because she loved me. It is true I am very down, and I have my moments where it is very difficult to pull out of these feelings, but despite how I have been feeling I am very aware that the true gift today wasn't what was in the bag, but the words that were expressed to me.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "You might want to reconsider trying to attend some of these "celebrations" until you are ready. Less than a century ago, immediate family members exempted themselves from social engagements for a year after a death; I believe the social and religious customs were to accommodate the feelings of the grieving, not just "social niceties." You need a lot of emotional energy to attend these sorts of events; your emotional "bank account" is quite low right now and what is in there is not appropriate for happy events. I think you know what you can handle and you need to trust yourself. Peter may be in a different place and perhaps you are concerned that will cause a rift between you but you can manage that as long as you keep those lines of communication open. That doesn't mean you should isolate yourself; see your friends and get out but do it in a smaller, more comfortable, restrained way. Today, think about what you can do and try to plan one short "outing" per day even if that is just to the library."
The second message is from Sara. Sara and I know each other through Mattie's preschool. Sara was Zachary's nanny. Zachary was one of Mattie's closest preschool buddies. In fact up until the end, Mattie and Zachary had a friendship that neither distance nor illness could separate. Sara wrote, "I can't tell you how saddened we were to here about the loss of Mattie.... in fact it has taken a while for it to sink in. I have started this letter many times.... sometimes email, sometimes on paper and it never seemed right. I just wanted to hug you, to sit with you. There isn't anything I can say to express my deep sadness for you. It is so hard to believe.... I have so many wonderful memories of our "play dates" together. Zachary and Mattie were such a riot. Those two knew how to have a good time and often put us in the middle of it. Those times on the playground after school or one of many lunches or homes visits we had were good times. Over the last year of reading your blog...I have to say you and Peter were (and still are) such a great team. You both have a connection that a lot of people will never have. Mattie and Zachary also had a friendship that most people don't ever find. Everyone should have someone who will question the health care they get, like you and Peter did for Mattie. There must be many mistakes made simply because no one was there to watch what was happening or to do research. I am so glad you have Ann and her family.... what a blessing. Oh, I wish I could give you another hug. When we would read your blog my son would turn to me and say "pray for Mattie" .... and we would, and he would ask questions about Mattie. He loved seeing "Mattie's Legos" creations and would ask if he could go to Mattie's house some time. I would love him to meet you some day "Mattie's MOM"..... my friend. I will have to get him some duplo legos so he can build with "Mattie legos" as he calls them. I wish Mattie could show him some of his wonderful creations. That would have been fun. I hope this isn't insensitive to say... it is not my intention to cause you more pain. I've probably said to much.... but I just wanted you to know I think of you often and please take care of yourself and Peter. You are so very special."
November 15, 2009
Tonight's picture was taken in November 2008, after Mattie's second limb salvaging surgery. Mattie is sitting in a hospital bed which we rented and placed in our living room for several months. You will notice that Mattie's companion, Patches, was sitting on the bed with him keeping Mattie company. Patches would sleep on Mattie's hospital bed each night. I mention this because this was atypical. Patches never slept with Mattie before the arrival of the hospital bed. Somehow Patches sensed that Mattie needed her company and support. Nonetheless, look at the smile on Mattie's face. Despite having great pain, his smile was like a beacon that always shone through even in the worst of circumstances.