Saturday, October 10, 2009

Saturday, October 10, 2009

Tonight's picture features Mattie with his Lego creation, "Chompy." Mattie had Peter run out to the Lego store to buy a bucket full of green legos. When Peter returned, Mattie started assembling this alligator structure without any directions or guidance! You may also notice glow in the dark stars and planets on the wall behind him in his PICU room. Those decorations remain up on the walls in room 9 even today.

Poem of the day: My Grief is Like a River by Cynthia G. Kelley

My grief is like a river--I have to let it flow,
But I myself, determine,
Where the banks will go.
Some days the current takes me
In waves of guilt and pain,
But there are always quiet pools,
Where I can rest again.
I crash on rocks of anger--My faith seems faith indeed.
But there are other swimmers,
Who know that what I need
Are loving hands to hold me
When the waters are too swift,
And someone kind to listen
When I just seem to drift.
Grief's river is a process
Of relinquishing the past.
By swimming in hope's channel's
I'll reach the shore at last.

I can confidently say that Mattie had a beautiful funeral mass, reception, and celebration of life ceremony today. I know he was looking down upon us and was smiling. He was smiling for many reasons, I am sure he was beaming over the fact that people were appreciating his art work and creativity, and most likely because he could see just how many people united together and formed a solid community. This community helped us through the past 13 months, through this emotionally laddened day, and I have no doubt some of you will be there as a continued force into our uncertain future.

It is after midnight, and I am not thinking as clearly as usual. I am exhausted physically and emotionally, and therefore plan on making this short tonight, in hopes that having another day to reflect on today, will make whatever I say tomorrow more insightful. If that is at all possible. One thing I do want to say is that we are SO grateful to Team Mattie for helping us plan, coordinate, and execute our dreams and desires for today's event. You far exceeded my expectations, and having you all in our lives is a blessing beyond measurable proportion. Thank you Olivia, Tamra, Alison, Ann, Deb P., Luda, Liza, and countless other volunteers who made today beautiful, elegant, and most importantly memorable. Mattie's art work was exquisitely displayed, and when I saw it filling each and every room, I took great pride in his works and appreciated the importance of art in his life this year.

We want to thank all of you for coming or sending us messages today. Your presence made today possible, and several of you assured me you would never forget Mattie. I had many questions about whether I would continue writing the blog as well. As I said before I would write up until Mattie's funeral. I am not sure how I feel about this now, and will continue until I have determined I can't do this any more. A part of me feels by writing each day, I force Mattie's memory to be ever present and therefore to never die. Of course I realized whether I write now or not, his legacy will continue on to some extent. But until I can assure his legacy with an effectively functioning Foundation, I most likely will keep writing.

The day couldn't have been more special. Every part of it was memorable, and seeing the children sing a self created song for Mattie was touching, along with their red balloon release with messages attached for Mattie to read in heaven! What a sight that was, and I will never forget any of this. None the less, even after a mass, talking to several hundred people, hearing tributes to Mattie, and being surrounded by amazing love and support, I still tonight feel so empty, so alone, and so directionless. I actually don't feel much these days, I can't cry, and I move from one task to another. Despite not feeling, I do know on some level I am profoundly changed and I miss everything about Mattie in our life.

I am signing off tonight out of sheer exhaustion, but I would like to end with two messages. The first message is from my friend, Charlie. Charlie wrote, "Now that the day is here for Mattie's funeral, I feel it has been just a moment from the time he was diagnosed until now. And yet, it seems a long time that you wrote your daily blog about how the treatments were going. I wonder if you feel that same odd feeling of time displacement that I do. I do believe that Mattie is here and that he will be attending his service,admiring his artwork and waiting to hear what we all say about it and about him. I think he will be there enjoying it all, from the service to the balloon release and the wonderful show of his art. And I think if there is a way, he will let you know he is here. There is the story of the caterpillars and the butterflies, which I will (badly) paraphrase. The caterpillars were all eating their fill and talking about the future. Some only watched as others of their friends spun themselves into cocoons calling, "have faith, we'll be back." They watched and waited but nothing happened and they mourned their friends' passing. One morning, when they went out to eat the young leaves, they noticed the cocoons were empty and they looked about for their friends, butnever noticed the new butterflies flying above to the flowers to drink. And the caterpillars said, "see, it was just a story about a life after", and the butterflies could only wave their wings in passing as they flew off."

The second message is from one of Ann's neighbors who I met at a picnic in the spring. Karen wrote, "I have started and re-started this email several times in the month since Mattie passed away. I worried that you would think it strange that someone who does not know you or Mattie would write an email to share her sympathy. But as you have already heard from many others, Mattie's life and his battle against cancer have been in my thoughts so much these last few months, so I wanted to let you know a few things. First, though I never met him, I will not forget Mattie. When reading your blog, it always struck me that Mattie was able to keep his sense of humor, his inquisitiveness, and his sense of self through incredible pain and through situations most adults would struggle to endure. It is truly amazing. I have two boys, and when I look at them I sometimes wonder about Mattie and how someone so young was able to have the strength and spirit to fight the way he did. He was clearly an exceptional boy, and I know it is because he has exceptional parents. Which leads to me to my second point - what a profoundly generous thing it is for you and Peter to share your journey through your blog. As I said before to you, I have several friends who haven't met you but who have followed Mattie's battle. All of us have been deeply affected by his fight and his death, and while we are sad, I also know that it has been a lesson. While I believe (hope?) that all parents love their children, your complete love and devotion to Mattie, and how you were able to fight for him so fiercely despite being exhausted and being faced with unimaginable pain, struck everyone I know who reads your blog. Something brought this home to me the other day. I had to take my 2-year-old to the ER for stitches after he hit his head on a table. He was fine, and I knew he would be fine, but it was a pretty hairy 30 minutes when they strapped him down to a board to start doing the stitches on the back of his head. He was hysterical. After they finished and I was comforting him, I thought - how did the Browns do this every day for over a year without being able to tell their child or know that everything would be "fine" in a half-hour? And it led me to this. Mattie was able to do it because he knew that his parents loved him without limit, and his confidence in that gave him the strength and courage to keep battling cancer. I am grateful to you and Peter for sharing Mattie's life and for allowing me to know him."

Friday, October 9, 2009

Friday, October 9, 2009

This picture features one of Mattie's larger creations, "Dr. Crazyhair." Those of you coming to Mattie's reception tomorrow, will get to see this doctor up close and personal. Dr. Crazyhair has things in his pockets too (for example a larger oyster shell, representing a big toe nail). But this sculpture became a vital part of our world toward the end of Mattie's life, because Dr. Crazyhair would guard Mattie's hospital door in the PICU preventing visitors from coming in. It was effective in a humorous way!

Poem of the day (Thanks Kristi!): I Lost My Child Today

I lost my child today

People came to weep and cry

As I just sat and stared, dry eyed

They struggled to find words to say

To try and make the pain go away

I walked the floor in disbelief

I lost my child today.

I lost my child last month

Most of the people went away

Some still call and some still stay

I wait to wake up from this dream

This can't be real, I want to scream

Yet everything is locked inside

God, help me, I want to die

I lost my child last month.

I lost my child last year

Now people who had come, have gone

I sit and struggle all day long

To bear the pain so deep inside

And now my friends just question Why?

Why does this family not move on?

Just sits and sings the same old song

Good heavens, it has been so long

I lost my child last year.

Time has not moved on for me

The numbness it has disappeared

My eyes have now cried many tears

I see the look upon your face

"They must move on and leave this place"

Yet I am trapped right here in time

The songs the same, as is the rhyme I lost my child.........Today.

With a heavy heart, as if my heart couldn't get heavier, I am saddened to report that Sammie and Emma, two beautiful girls with Osteosarcoma on the West coast, lost their battle today. I have followed Sammie and Emma's progress for months now, and when one child with this disease is stricken down, the whole Osteo community feels the after shocks. I have attached links to their caringbridge sites, so that you can learn more about these remarkable children who were taken from this earth way too soon.

www.caringbridge.org/visit/sammiehartsfield

www.caringbridge.org/visit/emmakoertzen

Peter did a lot of running around and logistical things today for the reception tomorrow. He met with Olivia and Tamra, who I can't thank enough for all their help, creativity, and passion they are putting into Mattie's event. We could never do this without Team Mattie's support. I had the opportunity to go out to lunch with my parents, and we talked about so many things. Of course, mostly Mattie! We are all trying to prepare ourselves for tomorrow, a day that took a month to plan, and yet will be over in a matter of hours. In a way, I don't want to miss one single word that people tell me about Mattie. I cling to these words and sentiments. Because in all reality, this is all I have left.

Later today I went to visit Mary, Ann's mom. I sat with her while she had dinner and I heard about her day and all the wonderful visitors who came by to see her. After Mary had dinner, we went to sit outside on the porch. It is a lovely weather day in Washington, DC, and I am so happy Mary wanted to sit outside and get some fresh air. I can truly appreciate just sitting and talking now, something that I may have taken for granted prior to Mattie's illness. But connecting with others on a deeper level inspires me and breathes life into me. Mary told me one of the hardest things about losing a loved one, is thinking about how you are going to spend your days without that person. There is so much truth to that. When you have a child, there is a schedule you follow. Now I find there is nothing connecting or grounding me to anything. It is unsettling, but when Mary mentioned this, I immediately understood and related.

This evening while Peter and I were preparing for tomorrow, chatting about what we will be saying, and reviewing the timeline of events, we heard a crashing sound come from the kitchen. Peter walked in the kitchen and was stunned. He found one of Mattie's rubber balls on the floor. This ball has a flickering light inside of it, so when it hit the floor it was glowing. We have NO idea where the ball came from, why the ball crashed on the floor, or why it was flashing at us. All I could say is that "Mooshi was here" and was trying to tell us something. How eerie to get this sign, while preparing for Mattie's funeral. I am sorry, but I do not think this is coincidence! Mattie is sending us messages through the world around us. Or at least this is what I want to believe.

Thank you all for the lovely e-mails and cards you have sent Peter and I! We look forward to seeing many of you tomorrow, and I realize for those of you who can't be with us, you are with us in spirit! I would like to end tonight's posting with four messages.

The first message I received from my friend, Charlie. Charlie wrote, "One line especially struck me from the blog, "come to peace with this." I can't imagine how you are supposed to come to peace with a tragedy no parent should ever have to face. Vicki, however you find the strength to get through the early days of this, is correct. There is no one way to grieve, no one right way to feel.Sometimes our brains know what our hearts refuse to admit, that our pain is so overwhelming, that if given voice, would overwhelm us and the tears would not stop. I think this may be where you are; when you sense it is "safe" to grieve, that you can somehow call an end to the tears, even if only for a while, I think they will flow. And if not, unshed tears are as much a marker of grief as those which flow freely. You and Peter just need to respect each others' responses to this tragedy and support each other as best you can. I thank you for reaching out in your pain to Ann and Mary, I send thanks to all who are helping to put Saturday's service together and for today I wish you and Peter a space of time to remember what brought you together in happiness even while you have to deal with sadness."

The second message is from one of colleagues. Melissa wrote, "I so wish I could be in DC for Mattie's funeral and celebration of life reception. I wish I could be there first and foremost to show you and Peter my love and support and how much I care for you, but also because I know it would be a tremendous experience for ME as I continue to try to cope with the reality of Mattie's passing and how it has profoundly affected me. Unfortunately, a trip to DC is just not going to be possible. When I finally accepted that, I began to think about how I could somehow participate in the service from a distance. I'm not sure all that will be involved in that for me, but I do know that my family and I will be getting balloons and at 4:45pm here in IL (5:45pm DC time), we will join you and your friends and family in in the balloon release for Mattie. How I wish the whole world would stop at that moment to join us in celebrating, honoring and remembering Mattie! I expect that you have had many moments where you wish the whole world would stop to acknowledge with you the pain and loss of Mattie's death--that it seems somehow unfair or insensitive or just plain cruel that the world could go on with it's usual things when your precious child has died. Though the whole world won't stop, I just wanted you to know that someone outside of all of the amazing people who are present to support you and honor Mattie at the services on Saturday, will be STOPPING to think about Mattie and to pray for you."

The third message is from one of my former students. Betsy wrote, "When my dad was fighting cancer it wasn't until about 1 year into the battle that he finally got a look of resignation on his face. He knew he was going to die from cancer. And that was such a kick in the gut for me. I really lost it at that point, and while the rest of my family was certainly not doing well, they were not at the low point that I was at. Then at the time of the funeral, I found it almost impossible to cry. So many people were commenting how I was such a rock and taking it all so well. Those comments just made me feel guilty and perplexed as to why I wasn't crying all the time. I remember thinking to myself "please cry, please cry." On November 9th it will be 4 years that he has been gone. And in these past 4 years, I have cried many times. But it hits me at odd moments, usually when I am alone, and when I see his face in my mind. I share this with you to reinforce to you that grief expresses itself in very different ways. If you are having difficulty crying right now, maybe it is because your body is in defense mode and is protecting you until you are more physically ready to deal with the emotions. Or maybe it's some other reason. But whatever the reason, it obviously doesn't mean that you aren't completely devastated and no one in their right mind would think otherwise. Be kind and accepting of yourself. The tears will come, and unfortunately they will never go away because you've lost an integral part of you. The bright side is that the intensity and emptiness that accompanies your tears now will give way to more and more moments of happiness as you remember Mattie and figure out how he fits into your life going forward. Just give yourself time to get there."

The final message is from a friend and fellow RCC mom. Grace wrote, "I simply can't believe that it's been a month. It seems like yesterday that we received the crushing news that Mattie was gone. I have thought of you, Peter and Mattie every day since his death. Regarding your mission to keep Mattie's memory alive, I want to assure you that Mattie will not be forgotten. There is not a day that I don't think of him, and I know I'm not alone. We are all forever changed because of him. In fact, I still wear my Mattie bracelet on my wrist so that I won't forget. I want it to be a constant reminder of Mattie and what matters in life, and if it's there on my wrist right in front of me, then maybe just maybe, I'll be able to keep my eye on the ball of what's truly important in life. I know you struggle with trying to understand why you have been placed in such a harrowing experience of witnessing two deaths within a one-month time frame, and you wonder what your purpose will be once Mattie's funeral is past. I think it's all related. Your life experiences have provided you with such powerful tools to help other people as a counselor in a way that most people can't. You are now armed with the most incredible first-hand experience and knowledge that your mere presence in other care-givers lives will help them. There is such comfort and connection in being able to say, "I've been there--I know what you're feeling." You gain instant credibility. And this will help you too. I'm so very grateful that you have been able to help Ann and her family. It's a wonderful focus for you to spend time helping others. That's what brings you joy. It's your salvation. And it's your gift. You have always been an amazingly warm, kind and compassionate person--the perfect qualities for a mental health professional. Now coupled with your experiences, there's no end to the number of people who you'll help immeasurably in life-changing ways. And it will bring you great joy and also help you in your quest to educate others about Osteosarcoma as well. I was thrilled to see you use the word "excited" in relation to setting up the foundation. And I promise there will be more exciting moments for you as things begin to come together and goals become accomplished. I would love to be a part of the foundation in whatever capacity you think I may be able to help. I have a bit more free time on my hands these days and would love to help you in whatever way I can. On another note, I also wanted to make the offer to store some of Mattie's treasures in our house. It's just too difficult to sort through his treasures right now, so please feel free to keep them in our storage area until you're ready to revisit them. Lastly, I know you're working frantically on perfecting Mattie's eulogy now. Please know that anything that you are a part of will inevitably have the stamp of greatness on it. Your dedication and perfection was made abundantly evident during this past year, and I know your 5 minutes on Saturday will reflect the same. Tomorrow will be a wonderful tribute not only to Mattie, but to his wonderful parents who made him that way."

Thursday, October 8, 2009

Thursday, October 8, 2009

Tonight's picture features Mattie with three United Airlines employees who came to the hospital to visit children and to give them teddy bears. These three United folks were curious about Mattie's art project, so they came over to talk with him and Mattie explained his project to them. They wanted to take a picture with him that day and he easily complied with that request.

Poem of the day: Inner Tempest Stilled by Beenie Legato



Sometimes I sense a little flutter
Like a shadow swiftly slipping by,
Or I hear a silent, gentle murmur,
Like a soft whisper from the the sky.
Sometimes I hear you call my name
Or clearly see your face before me.
And I feel you are with me still.
The peacefully....I come to know
As I am thinking happy thoughts of you,
You, my son, are thinking of me too.
Loving memories fill my aching heart.
As dreaming dreams of what could be...
Or might have been, if you were here.
Until the piercing pain of losing you
Comes tumbling down on trembling fear.
And clearly once again I hear you say,
"But Mom....What if I had never been?
You could not then in Love, remember me."



Today, Peter and I moved back home after spending two and a half weeks with Ann and her family. It is a strange feeling to be home, but I have concluded I am SO numb, you could transplant me anywhere, and my reaction will pretty much be the same. Peter and I accomplished a lot today, and in the afternoon we met with Father Jim Greenfield. Jim is the priest who gave Peter and I pre-cana before we were married, baptized Mattie, and now seven years later is presiding over Mattie's funeral. Who would have imagined such a happy picture turning out SO badly!?

We had a wonderful conversation with Jim, and he got us to stop and reflect on how Mattie's death is affecting us as individuals and as a couple. Clearly the very main way it is affecting us as a couple at the moment, is the simple fact that Peter and I are grieving differently. Peter is much more in touch with his emotions than I am. He has no problem crying in appropriate circumstances, whereas, for me (who normally cries over a hallmark commercial), am unable to cry. Peter commented to Jim that this is SO unlike me, and at first he misinterpreted by non-reaction to Mattie's death. But then he realized that we are simply grieving differently, but perhaps feeling the same way on the inside. I am very well aware of my "doing" philosophy that I am using to maintain stability, and interestingly enough Jim commented that Sully's illness and death, though tragic, came into my life at the right time. There is so much truth to that. I needed someone to intensely care for, and others who I perceived needed me. It is hard to move from living in a PICU, and caring for my dear Mattie, to caring for nothing, to be responsible for nothing. That left me paralyzed. Peter is worried however, that because I haven't dealt with my emotions (which is correct!), that Saturday could be a very trying day for me. Perhaps he is right, but at this point, however I react, I am hoping that others will just understand. I may cry, but I may not. But I assure you regardless of how I react, my world very much feels like it has ended. I may not show it on the outside, but there is a lot going on, on the inside. Hopefully my blog postings indicate the inner turmoil I am living with.

This evening, I went back to visit Ann's mom, Mary, at the assisted living facility. I am glad that I did, because we had a nice conversation. She said the following, "why are you SO understanding?" My response was we were both understanding because we both lived through the death of our sons. This alone profoundly changes you forever. Either you can change and become hardened, or you can try to find a way to channel the hurt and pain to help others. I am hoping I am doing the latter.

This evening, Peter and I are picking up my parents at the airport. They are coming into town for the funeral, and Peter's family comes into town tomorrow. At the moment, I am very, very tired, and do not feel like I have much more to give to myself or anyone else for that matter. In the midst of feeling like I could collapse, I am in awe of the women working behind the scenes to make Mattie's reception, art show, and celebration of life ceremony a success. How do you ever thank these Team Mattie members? I don't know, but I am deeply moved and humbled by their acts of kindness and love. They are almost too wonderful to be true!

Thank you Tamra for a lovely dinner! That was so thoughtful of you to think of us on our first night home. We also want to thank Liza for the lovely homemade pound cake. I know how special this recipe is to your family, so I appreciate you sharing it with me!

One more day left until Mattie's funeral, and I am trying to come to peace with this. I would like to end tonight's posting with two messages I received today. The first message is from my friend, Charlie. Charlie wrote, "I am glad you went to the spa and relaxed enough to fall asleep. This is the time to treat yourself kindly and with gentle care with respect for your body, your heart and your mind. It is good to hear that things are coming together for Saturday's service and so many thanks to the Mattie supporters who are making it happen; this is more than one or two people could possibly do.I see this as one of Mattie's lasting gifts, that a group of disparate people could come together, each bringing their special skills to bear to make things happen as they should. A life lesson, that given a worthy goal, everyone has a part to play in making it a success. None of us, touched by this will forget Mattie; certainly not his doctors, his nurses, his care team (including Jey), the Team Mattie supporter and those of us who love and care about you and Peter. Mattie's legacy will be with us all for a very long time."



The second message is from a former student of mine. Betsy wrote, "I know that Saturday is an enormous day. It is the day that all of Mattie's friends and family come to show how much he meant to them. It is your chance to try to express publicly how this 7 year old boy filled your life and made you a better person. And of course, it is your chance to "officially" say good bye to your beloved son. It will be an emotionally filled day. I know that it will be beautiful, and that Mattie will be so honored, proud, touched, and happy to see everyone that attends, hear every one's words, see his artwork and his pictures. I know it will be difficult for you, but also enjoyable to see just how much love Mattie brought to the world. My only words of advice are to try to soak it all in. Soak in the tremendous impact this little 7 year old boy had on this world. How this little tiny being that you and Peter created changed so many lives and made this world such a better place. Let the feelings of warmth and compassion that you receive from everyone fill you up. Those warm feelings will help you get through the difficult days ahead. I know you fear that once the funeral is over, Mattie will start to be forgotten. That your motherly duties will be over. I'm telling you that this is not true. It is clear to me from your blog that Mattie can not be forgotten by this world. He seems to have had so many gifts, and shared those gifts with as many people as possible. He had such an incredible impact on the medical community - helping to reinforce to so many of them that the career they had chosen was the right one. He created beautiful pieces of artwork and used his wonderful imagination in ways that drew people in - not only children, but grown-ups who so very often forget the fun parts of every day life. These gifts will not be forgotten, instead they are inside of everyone he knew, and are a part of all of the lucky people who were part of his life. These people are changed in a positive way forever because of Mattie. They know it, and they will not forget it. Mattie can not be forgotten. I know that you do not have the normal motherly duties that you wish you had. And that is so extremely unfair and achingly horrible. While they aren't the same, you will find new ways to feel like Mattie's mom. Whether it is through the Mattie Miracle Foundation, or through your teaching, or some other way, you will always continue your nurturing love for Mattie. For he is so much a part of you, as you live your life, you continue to show him how to be a loving and wonderful person. And as a mom, that is what I most want to teach my children - how to be loving and good people. It is obvious that Mattie left this world knowing how to be an amazing person well beyond his years. But as he continues to learn from you throughout the rest of your life, he will become even better and better, more and more amazing. And when you do finally meet him in the next life, you will be so proud of all of your hard work. Especially the hard work that you go through during the grieving process. My heart continues to go out to you. I ache for your loss and wish I could give you a hug from mom to mom. You and Mattie have taught me to be a better mom. So I thank you for that."

Wednesday, October 7, 2009

Wednesday, October 7, 2009

This picture features Mattie being silly on our staircase! Got to love his sense of humor!

Poem of the day (Thanks Charlie!): Longing For One More Day

When we lose someone we love it seems that time stands still. What moves through us is a silence... a quiet sadness... A longing for one more day... one more word... one more touch... We may not understand why you left this earth so soon, or why you left before we were ready to say good-bye, but little by little, we begin to remember not just that you died, but that you lived. And that your life gave us memories too beautiful to forget. We will see you again some day, in a heavenly place where there is no parting. A place where there are no words that mean good-bye.

This morning after saying good-bye to Ann, I sat down at her kitchen table and worked on Mattie's eulogy. I had started it last week. Actually starting it was impossible, but for some reason things seemed to flow better today. I still have to work on it, but at least something is on paper now. Later in the afternoon, I headed home for a while. I treated myself to a visit to a spa today. Somehow sitting still for several hours was VERY needed. In fact, I think I fell asleep at some point while there, which was wonderful. It felt very good to just shut off, something that I have a very hard time doing.

Later in the day, I visited Ann's mom. I think trying to come to terms with a loved one's death is almost impossible, and at the moment, both Mary and I seem to be paralyzed in terms of emotions. I just can't believe it is Wednesday, and there are only three days until Mattie's funeral. In some ways I am ready for the event, and in other ways you have to wonder what happens when it is all over?! I am not sure. However, I want to make sure my readers understand that there is a WHOLE team working on the plans for the reception and celebration. Team Mattie is in full force, and to them I am forever grateful. These women are working hard to make sure our every desire for this event is carried out. Thank you Olivia, Tamra, Ann, Alison, Christine and Ellen for spearheading all of this.

I somehow do not have as much to say tonight. Maybe I am just psychologically tired, or things are just weighing on my mind. Not sure. However, I am looking forward to previewing the video
of Mattie's life that Mary, Mattie's technology teacher, created. This is the video that will be used to start our celebration of life ceremony. Mary is another person I am deeply grateful for, not only did she visit Mattie often in the hospital, but she freely undertook this major video project, and I assure you I threw a lot of pictures and videos at Mary. Any case, I will give you an update about the video tomorrow. As always, thank you for your support, for your e-mails, and for continuing to read the blog!


I would like to end tonight's posting with three message. The first message is from my friend, Charlie. Charlie wrote, "Yesterday's blog gave me pause with the comments from Olivia about "turning one's feelings on and off" and your remark and the picture of Mother's Day. I know that it seems too far to be concerned about all this but we are coming into the holiday season and I know that so many of your memories of Mattie center around Halloween, Thanksgiving and Christmas. In fact Halloween is just three weeks after the service. From what I have read and what I have gleaned from others this is going to be a rough time and you might want to consider how you want to spend the holiday rather than letting it happen. Choose to be at the door with candy or choose to be elsewhere, but give it some thought and then make a conscious decision about what is right for you this year. Next year may be different but right now, give thought to what you wish to do this time. Either decision honors Mattie; to give out candy in his memory or to do something else becasue the holiday was so special to him as long as it iis a decision you and Peter make. For now, I wish you peace with the decisions you have already made and thanks for sitting with Ann and Mary in their time of sorrow."





The second message is from Mattie's social worker at Georgetown Hospital. Denise wrote, "Mattie's death has affected me in a most profound way that I don't quite understand. Every time that I go to write or speak about it, a huge lump develops in my throat and tears well in my eyes. I somehow was not prepared for it and thought Mattie had a little more time. It has been difficult to go on the floor which just does not seem the same. While we don't want any family to have to live in the hospital the way you all did, you brought a special presence and joie de vivre to the floor(even if that was not how you were feeling). It was lively and full of life. It now seems quiet and solemn. Everything around here is a reminder of Mattie's presence, cardboard boxes sitting out in the hall, staff members with the "faith, love, hope" necklaces that you gave us for Christmas, the playroom and searching for Mattie's creations, a child's wheelchair and thinking of how Mattie liked to play hide and seek in the clinic. As we plan for the upcoming holidays I think of Mattie and how much he enjoyed making holiday crafts and decorating his room in the holiday themes. I don't think that I have ever met a child like Mattie. In his youthfulness, he modeled something about living life, about embracing all the blessings that God gifted you with, about being all that you were created to be that has touched me in some special way. Perhaps it was the courage with which he faced the challenges set before him or the wisdom embodied in a little boy. I don't know what it is, but I do know that his living has had an impact on me that challenges me to want to live my life more fully. My heart aches for the two of you because you have lost your precious Mattie. I so want to fix this and it hurts so bad that I can't. I know each of us has to travel our own road with our grief and that the pain of grief is part of the process. I just don't want it to be. I don't want you to be in this place. I don't want to be in this place. I know that I have been stuck, first in shock and now in denial. My heart hurts too for the loss of Mattie and I know that my mind is protecting me from feeling the pain of it until I am ready to handle it. From time to time, I check in on you through your blog. I am happy that you are still writing it. I feel like it's helpful to you and at the same time you are helping so many other people with their grief as they draw upon your insightfulness, candor and strength. I know that Mattie will continue to be with us, to inspire us and challenge us to be more. Mattie was not ordinary, he was an extraordinary little boy. You and your family have my prayers for comfort, for peace, for healing. May the work that you are doing continue to be blessed. May you know that the blessing of Mattie will never be forgotten."





The final message is from Mattie's favorite CT tech at Georgetown and Mattie's big brother. Jey wrote, "I hope you both had a needed nights sleep. As I continue to read the blog and about the updates of how Ann's parent's are doing particually Sully I can't help but to feel like you both have gone through too much this past year and some odd months and I can't imagine how you are able to function without losing your minds ... ... I commend you both for all of your efforts. I think I have said it before but I know that it can't be said enough but my little brother was given the parents he could have ever wanted and Ann has the best friends she could ever find. I am sure she appreciates you just as much you appreciate each other. Don't know if I ever told you but I am truly sorry for the life changing experience that you were forced to face this year I can't say that I know exactly how you feel because losing a parent is completely different from losing a child but in losing both you gain strength and you gain true friendships, Friendships that mean more everyday and give you new hopes everyday and new strengths everyday I pray that all of these new experiences continue to help you and Peter everyday. I am looking forward to The Mattie Miracle Cancer Foundation getting up and running. I know that so many kids will benefit from the knowledge gained behind your tireless efforts, true other people are helping to get this off the ground but it is your desire and determinaton that is the driving force that is moving this project ahead at full speed. In reading the blog I have taken notice to fact that you have made references to Mattie's funeral and celebration of life Ceremony being a good-bye for some people and although this could very well be true I don't see how anyone who really took the time to meet Mattie and grow to love him the way he is truly loved could really say good-bye in fact I think that if anyone can put these words in thought and allow them to part from there lips really didn't love my little brother as much as they would like you to believe. Me personally it's not good-bye but I will see you later just as I always told him ...... I will see you later. I learned early on as a kid that saying good-bye is forever and that you don't want to see them again but I will see you later truly means just that and like you and Peter I want to see my little brother again. True he may look completely different with his new glow halo and wings but I'll know it's him just from the smile on his face."

Tuesday, October 6, 2009

Tuesday, October 6, 2009

This picture was taken on Mother's Day when Mattie was four years old. It was a memorable day, and it is hard to believe that this year, when Mother's day comes upon me, I will not have Mattie with me to celebrate the occasion. Yes I realize I will always be Mattie's mom, but I am also very aware of the fact that I won't have Mattie with me to make this day seem real. I suppose I need to take one hurdle and challenge at a time.

Poem of the day (Thanks Charlie!): Letter to Mom by Joy Curnutt

Mom, please don’t feel guilty
It was just my time to go.
I see you are still feeling sad,
And the tears just seem to flow.
We all come to earth for our lifetime,
And for some it’s not many years
I don’t want you to keep crying
You are shedding so many tears.
I haven’t really left you
Even though it may seem so.
I have just gone to my heavenly home,
And I’m closer to you than you know.
Just believe that when you say my name
I’m standing next to you, I know you long to see me,
But there’s nothing I can do.
But I’ll still send you messages
And hope you understand,
That when your time comes to “cross over,”
I’ll be there to take your hand.


Today marks Mattie's one month anniversary of his death. I can't believe that four weeks have passed by and yet, for Peter and I it seems like just yesterday. We live with a constant ache, a constant level of fatigue, and sadness. The emotions that we live with each day are overwhelming and at the same time indescribable.

Last night at 9pm, Ann's father died. Unlike Mattie, Sully died a peaceful death. It fact his heart rate just continued to become slower and slower, until it eventually just stopped beating. I still can't get over the huge difference between Sully 's death and Mattie's. However, both were similar to the extent that there was no dialogue or two way good-byes. Not being able to have a two way conversation toward the end, I find unsettling, but I guess you just have to have faith that your loved one is hearing you as you express your final thoughts and feelings.

As I told Ann last night, being able to help her the past two weeks was a privilege. I feel very honored to be able to be with her through this intense process, and to be able to sit with her while her dad was dying. In a way, watching a loved one die is a private and intimate experience, and yet Ann allowed me to participate in it, and to support her. Not unlike how she supported me for over a year. It really intrigues me to find out just how many people have had the experience of watching the death process unfold with a loved one. My guess is not many people experience death in such an intense manner, but maybe I am wrong. Needless to say, I have seen two people die before my eyes in just less than a month. Certainly that is not easy for me, and yet, after helping Mattie, not much frazzles me. Not much scares me, and most certainly no medical personnel is going to intimidate me. Georgetown Hospital taught me well. I learned to question and advocate everything, and in the end I found Mattie's doctors respected me and I felt as if I was included as a valuable part of his team. However, sitting with Ann over the past two weeks has enabled us to learn more about each other, and as I always say, under times of crisis, you really learn what a person is made of. Experiencing such life and death situations, bonds you to a person instantly, like nothing else I have ever experienced. I am not saying I am looking for these near death experiences in my life, but Mattie and Sully's death are now a part of my life, and as such I have the need to make sense out of them. There has to be a reason I am going through this, I can't imagine why, but I am hoping that the reasoning presents itself. In the mean time, I just keep doing what I can to feel safe and somewhat able to cope.

As Ann heads to Boston tomorrow to plan her father's funeral, a part of me feels almost guilty or incomplete, because I will not be able to participate on this final journey with her. Naturally it makes perfect sense that I can not go to Boston right now, since Mattie's funeral is this saturday, but I have become invested in the caring of Sully, and it seems like not attending the funeral doesn't put closure to our time together.

I had the opportunity to spend some time with Mary (Ann's mom) today. Mary, as is to be expected, is out of sorts today. As she let me know, she feels "empty." She looked at me as she was telling me this, and I told her I could completely understand how she feels. Mary is not crying, like myself, but you can tell she is profoundly sad. Sad for the loss of her husband and the loss of her son. Mary asked me today how I felt after Mattie died when I had to come back to our home. I thought that was an insightful question, especially as she sits in the room that her husband died in. This afternoon, Margaret also came by to visit with us, and Mary enjoyed her company and we appreciated the wonderful homemade goodies Margaret baked and shared with us.

We want to thank the McSlarrow Family for the wonderful breakfast treats you dropped off at Ann's house for all of us today! Thanks Alison for starting off a hard day on a sweet note. We also want to thank the Bensten Family for a lovely dinner! Thank you for your thoughtfulness and generosity. I appreciate you helping both myself and Ann!

I would like to end tonight's posting with four messages. The first one is from my friend, Charlie. Charlie wrote, "I do believe Mattie will be there watching the service and attending with us. It is just something he would not want to miss. I know you are hoping that the foundation that you are in the process of setting up will be the answer to what comes after. I think it will be part of it; I think the rest of what you are meant to do has yet to show itself.I am glad things are coming together for the funeral and memorial service. I like many others, am looking forward to the art gallery and to get the chance to see in person what I've only seen in pictures through the blog this year."

The second message is from one of our Team Mattie supporters, who is helping us tremendously as we plan Mattie's funeral. Olivia wrote, "I continue to feel pause at the experience of planning this ceremony. Somewhere, inside, I have ‘shut off’ some feelings as I walk through these organizational steps now and am busy in the ‘technical, detail, task-oriented manager’ role . . . not accessing my ‘emotive, fellow mother, want to hold you, friend’ role since I now have a ‘project’ with which to busy myself. But, I have to listen to this disconnect in my heart in how I write to you these past few weeks since Mattie died. I apologize if my words are now so task-oriented and not offering a compassionate ear. I have not meant to interact with you on such a pedestrian level as if this effort were simply a ‘volunteer project.’ I am just trying to stay focused and hear what you need and respond to those needs . . .or else I kind of fall apart. I don’t know how you and Peter are shutting on and off all day – the thought of it exhausts me and I continue to pray each morning that you may be free to be authentic – laugh, cry, curl up in a ball or fling yourself wide open and scream – and that others let you be you. I may not understand you, for I can’t know your pain, but I can accept your authenticity and the gift of your son, your beautiful life’s work, that you are working so hard and nobly to bring to others this Saturday."

The third message is from a former student of mine. Kelly wrote, "With tears in my eyes I write the email to you having just learned about your beautiful Mattie's passing. Email is a terrible way to communicate my heartfelt feelings, but I wanted to reach out to you as soon as I heard. While I'm one of hundreds of students you have helped, I consider you one of the few teachers who have had the most impact on me personally and professionally. You are a special woman, and it's just not fair that you and Peter have been dealt this hand. I can't begin to imagine what you are going through although I do have personal experience with the surreal tragedy of losing someone too soon. My brother Mike was killed in action in Iraq when he was 24-- certainly not the same as losing your own young child, but still a difficult loss. I know there is a hole in your heart that will never heal, but based on your blog it's clear you have many wonderful memories of that special boy that will provide some comfort in time. The hurt never goes away though."

The final message is from my mom. My mom wrote, "Has it been a month already? I agonized about leaving September behind because Mattie had been with us then and selfishly I thought of how much I missed his physical presence though my rational mind told me it was a blessing that he was no longer suffering and in pain. It just felt like time was marching on oblivious to my need for it to slow down because I was not ready to let go of the past. If there were a time machine, I would jump right in it and have it transport me back to the good years and relive all the wonderful moments I had with Mattie. It is a fantasy based upon my unwillingness to accept the finality of death. It is a heart breaking experience to long so much for a lost loved one. But the rational component of my personality brought me back to reality and I stopped to consider whether or not I would be better off if there had never been a Mattie. It was only then that I realized how lucky I was to have been enriched by having Mattie in my life at all and to be able to love and interact with him for seven precious years. In an effort to confront the loss of Mattie in a positive light, I vowed to preserve his memory by writing an account of his life through my eyes and tell the world about our experiences together. Not just for myself but for posterity, so that the light, buoyant, funny, insightful and happy child that Mattie was will never be forgotten by future generations. Let others know about the real Mattie, before the cancer, who loved to sing, dance, frolic, create, tell a joke, giggle and play a prank or two just like any other ordinary kid even though he was precocious, extraordinarily gifted with perception and artistic talent that was remarkable in its scope and its imaginative release. That is how I will try to come to terms with my loss. It will be my own personal contribution to Mattie’s legacy and it is my hope, there is that word again, that it will bring happiness to me and others because his innate joy of life had a magnetic effect on all who fell under his spell and were transported back to childhood by his good natured antics and escapades that in the end leaves us with a story about a short life, but luminous like a shooting star, that begs to be told and remembered."

Monday, October 5, 2009

Monday, October 5, 2009

When Mattie was four years old, we took him out to eat at his favorite restaurant for Easter. What he wasn't expecting was a visit from the Easter Bunny. At first Mattie was quite intimated by this big fellow, and jumped into my lap, but after a few minutes, Mattie got into the spirit of things!

Poem of the day (Thanks Charlie!): Borrowed Hope by Eloise Cole

Lend me your hope for awhile
I seem to have mislaid mine.
Lost and hopeless feelings accompany me daily.
Pain and confusion are my companions.
I know not where to turn.
Looking ahead to the future times
Does not bring forth images of renewed hope.
I see mirthless times, pain filled days, and more tragedy.
Lend me your hope for awhile, I seem to have mislaid mine.
Hold my hand and hug me, Listen to all my ramblings.
I need to unleash the pain and let it tumble out.
Recovery seems so far distant,
The road to healing a long and lonely one.
Stand by me. Offer me your presence,
Your ears and your love.
Acknowledge my pain it is so real and ever present.
I am overwhelmed with sad and conflicting thoughts.
Lend me your hope for awhile.
A time will come when I will heal,
And I will lend my renewed hope to others.

Today was a productive day for us in many ways. Peter and I have sorted through Mattie’s artwork, and dropped off the pieces going on display this weekend at Tamra’s house. Thank you Tamra for taking on this monumental project with your committee of Team Mattie supporters! I am grateful to all of you, because it means a lot to me to have Mattie’s art at an event celebrating his life. For Mattie this year, art was life. Last night, I did find the courage to go into Ann’s closet and look at all of Mattie’s cardboard box creations. I selected two boxes to display. These were boxes he worked very hard on and had a holiday theme, Halloween and Christmas. The Christmas box has a surprise inside, which I hope you get to see!

Peter also had a great conversation today with Peter Keefe. Peter K., is a fellow SSSAS parent, and he and his family have been outstanding Mattie supporters this year. Peter K. is guiding us on the establishment of “The Mattie Miracle Cancer Foundation.” On today’s phone call were also two lawyers working with us on generating the required paperwork to become an official corporation and publicly held entity. I am very grateful to Peter K.’s skills and guidance, because I know my limitations, yet understand and embrace Peter K.’s strengths. We are compelled to make this Foundation a success, because Osteosarcoma should not be an orphaned disease, which is the classification given to diseases, which are under researched and under funded. So stay tuned for more exciting developments about Mattie’s Foundation. In a way, Mattie’s life and energy was a gift and a miracle, and therefore selecting the title of the Foundation was actually very easy for me. I hope you think it is catchy too.

Today however was not a good day for Ann’s dad. He is practically in a catatonic state, yet is sensitive to noise and all visitors on some level. In a way, he reminds me of where Mattie was toward the end of his struggle. I am all too familiar with the no talking, no noise policy. Within one month’s time, Ann, Peter, and I have seen more than enough death for a lifetime, yet as we sit during these final hours, it is hard not to relive and reflect upon Mattie’s short life and death. I think losing a child is by far one of the worst losses you can ask a person to go through, yet, I also know that saying good-bye to someone meaningful in your life is not easy regardless of the age. The only comfort I have in watching Sully die is knowing that he lived a full, productive, and happy life. Not that it makes losing him any easier, but somehow we as human beings like to rationalize that it is okay for an older person to die. That this follows the natural order of life. True I suppose, but I know whether a death is expected or it is sudden, there is still an overwhelming amount of sorrow, anger, sadness, and emptiness that results.

I certainly have experienced many relatives in my lifetime die, and I have gone to funerals. But until Mattie, I had never helped a person die, and to actually be with a person when one’s last breath was taken. This puts death in a whole new light and context. Death isn’t pretty, it is not like it is on TV, where this is a melodramatic last breath, and the pain and suffering is over within seconds. On the contrary, death can be quite the opposite and it also doesn’t follow a script or plan. You never know what each minute holds. I distinctly remember someone at Georgetown Hospital saying to me that death is natural, but watching death happen is anything but natural. This is actually a brilliant comment, which at the time meant nothing to me until I watched Mattie’s five-hour death march. Mattie’s death had sights and sounds to it that I will never forget. Ann said she heard her dad make this “death rattle” sound today, and so far I haven’t heard it, but believe me when I do, I will be able to identify it in seconds. So in essence Mattie has given me a medical education without ever having to go to medical school. His strength and courage live within me. Having helped Mattie live and battle with cancer has taught me a lot about life, priorities, and helping friends.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I know right now it seems you are marching toward a marker (Mattie's funeral and ceremony) with no idea of what to do after that. How do you go on without him? What will the shape and form of your life be? None of us know the answer to those questions but I believe you will find them if you give yourself time. It certainly won't be what your life wouldhave been with Mattie in it but knowing you and Peter, you have too much to give to just lock yourselves away. Before Mattie's illness you had a life that conformed pretty well to the way you envisioned it; then his illness dumped all the pieces out and his death made many of them unusable. Now you have to find new pieces to fill the container of life that you have. I think some of this maybe trial and error; trying on new things/lifestyles/ways of being. Some will be better than others for you and worth keeping, some not. However, in all thissome of Mattie will always be with you, in your thoughts, your hearts and your minds and will help shape what comes after. Today I wish you a space of time in which to believe that there will still be life after the funeral although it certainly doesn't seem that way now. Be kind and patient with yourself."

Sunday, October 4, 2009

Sunday, October 4, 2009

This picture was taken a month before Mattie was diagnosed with cancer. Mattie loved our cat, Patches, and even as he was dying in the hospital, he asked for Patches to visit. I regret that we were unable to do this, but fortunately my parents bought Mattie a fish, "Super Red," which he enjoyed. But as you know Super Red was VERY short lived. He only lived for 24 hours, and like Mattie died on September 8.

Poem of the day (Thank you Kristi!): I'm an Angel Now by: Janice Grogen


One night I cried to Jesus as I sat beneath a tree
I looked into the open sky and hoped
He would answer me..I'm lost dear Lord,
I've traveled far, but still I seem to roam
Please light the way and lead me Lord,
I need to get back home...
I told Him of my burdens, and of the sadness in my heart
That from His gracious love,
I'd never felt so far apart....
Why did you take my child Lord?
I cannot understand!
No longer can I touch his face, or hold his tiny hand...
I'm angry Lord, I'm missing him,
I'm drowning in my sorrow
Please help to heal my yesterday and face each new tomorrow...
It was then I heard his gentle voice and felt his presence near
How I wanted so to hold him as I cried another tear...
He said, "Mommy, I am an angel now, my spirit is free
I'm an angel now in Heaven,
so please don't cry for me
I was chosen by our Lord above and now
I'm in His care When you need me, look inside your heart,
I promise to be there
No one can ever take away our bond
For I'll always be your precious baby, as you will be my mother
So if you cannot find your way, or the road to home seems far
Just look up to the Heavens...and I'll be your guiding star
He said, "Mommy, I'm an angel now, my spirit is free
I'm an angel now in Heaven, no need to cry for me..."

This afternoon, I went to the mall with Ann and her girls. I haven’t been around children for a while, and hearing their conversations, their plans, and the topics that brought them fun and excitement was memorable to hear. Katie was chatting about her plans for her birthday party, and I was engaged in her dialogue, her ideas, and I found her energy was contagious. Nonetheless, when I see Ann interacting with her children, I can’t help but be reminded of my life without Mattie. A life in which I won’t hear him telling me he loves me to the moon and back, and my joke with him now no longer applies, which was he was going to be my baby even when he was 80. He always got a chuckle out of that, as did I!

As the day continued on, I decided to drive home and sort through Mattie’s artwork and label it. Mattie was such a prolific artist this year that I felt his creative side was important to display during the reception. Mind you I haven’t been home in two weeks, and frankly I did not give much thought to the fact that I was heading home, well that is until I drove into our garage. Once I was in the garage, I was immediately flooded with the fact that Mattie wasn’t with me. Even my parking space reminded me of him. I notice now while I am driving that occasionally I look in the back seat through my rearview mirror, hoping to see Mattie. Of course there is nothing to be seen, though today, when I looked in the mirror, I did see Mattie’s Sponge Bob blanket, and this took me back for a minute or two. My reaction to the garage only started a domino effect of feelings, and it was hard to shake that feeling for the rest of the afternoon.

I located a lot of wonderful Mattie pieces to display, and as I started making piles of artwork, I also decided to label each piece with a description. The irony is that I remember Mattie making each and every piece. It is ironic, because Mattie could generate a ton of art in just one week in the PICU, yet despite that, I have a snapshot memory of the times he created these pieces. Mattie’s artwork reminds me of him, our year together fighting cancer, and what I find is that each piece captures his energy, spirit, and spark. For me, I can almost feel this energy by looking at the art objects. In fact, as I was touching his valentine’s box that he made me, which is filled with actual paper valentine’s, I couldn’t help but stop and appreciate that his little hands touched all the paper inside, and the love he put into cutting and drawing each of these cards stopped me in my tracks. This, along with a bunch of others, was a hard task to face. I think a part of me has procrastinated on this and other funeral related items because one thing became clear to me today. Once the funeral is over, I have NO MORE motherly tasks to perform for Mattie! There will be nothing else to take care of for him, and then of course my true feelings of being lost and directionless will take hold. On some level, I guess a part of me wishes that October 10th would never get here.

October 10th signifies a good-bye to Mattie’s physical presence, but by saying good-bye to his physical presence in a way may signify to others a closing of a chapter in my life and Peter’s. I can assure you it won’t be that easy for us because at the end of the day no one’s life is as profoundly changed as our. We are the ones who have to go home to a childless house, and accept a life without Mattie in it each day. We won’t be hearing his laughter, his songs, his antics, his experiments, and of course will not be experiencing his pranks. Yes we know Mattie isn’t coming back, but there are times this reality can be too much to handle. I am certainly not minimizing anyone else’s grief about Mattie, but I am simply saying for us this is something that we may never get over. This is not pathological or dysfunctional, it is just what it is!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Well, Mattie certainly left us many examples of love and how to live life in the short time he was with us. The importance of connections, human connectionsare one of his life gifts to all of us. I appreciate Mattie's spirit and his never ending battle to remake the situations he found himself in (physical therapy,home, art therapy, school, etc) into something that he found fulfilling and/or fun. How much better our world would be if we worked at remaking situations rather than accepting them as is or abandoning them altogether. Vicki, right now it sounds like you are trying to figure out if you go forward without Mattie or stay where you are, immersed in his memories; maybe there is a path where you can go forward and use your memories of Mattie to build something new and meaningful to do? If you can, it won't be easy, but I think it might be what you are looking for and it would be a way to honor the bond you, Peter and Mattie have that can never be broken."