Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: 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!

A Remembrance Video of Mattie

December 5, 2009

December 5, 2009

Saturday, December 5, 2009


Tonight's picture was taken in April 2008. Before Mattie was diagnosed with cancer. Mattie received this beautiful dragonfly kite from his preschool buddy, John, and Mattie loved it. As I look at this picture tonight, I find that I have to dig very deep to remember Mattie walking and running. My only recollection of him now was how he spent the last year of his life, in a wheelchair.

Poem of the day: Footprints on the Heart by Flavia

Some people come into our lives and quickly go.
Some people move our souls to dance.
They awaken us to new understanding
with the passing whisper of their wisdom.
Some people make the sky more beautiful to gaze upon.
They stay in our lives for awhile and leave footprints on our hearts.
And we are never, ever the same.


I couldn't agree more with tonight's poem! Mattie changed our lives while he was alive, and even in his death we remain forever changed. Peter and I learned a lot from Mattie, he pushed us to grow as individuals in ways that seemed unimaginable. His creativity, brilliance, humor, and stubborn nature were all aspects that caused us to pause on some days to figure out how best to parent Mattie. So yes he did "awaken us to a new understanding" and because of his sheer energy and innocence did make the "sky more beautiful to gaze upon." Mattie's footprints are all over our hearts and we will never be the same without him.

Today, I looked at the collage of photos Linda (Mattie's childlife specialist) made for us. She put this collage together as a gift to acknowledge Mattie's final chemo treatment. That seemed like a happy occasion, but now I look back on that moment as the beginning of the end! Without those toxic chemicals coursing through Mattie's body, the cancer ran rampant. The collage is lovely because it captures Mattie's nurses, art therapists, childlife staff, and doctors at Georgetown University Hospital. It is a beautiful remembrance of the fine professionals who helped Mattie and us, and who became our family for 13+ months. However, as I was looking at the collage, I admired Mattie's beautiful face, his smiles, and twinkling eyes. Of course, absorbing all of that in only made me sad. There are times I truly can't accept that he is gone. Not that I expect him to walk through the door, I am very much aware that he is dead, but my heart can't match what my head is telling me. There is a special magic shared between a child and a parent, and without Mattie's presence in a way, the magic and spark has been extinguished from my life. Each day seems just like the day before it and I assure you this isn't a good feeling.

Ann is visiting family this weekend, and while she is away, Tanja and I are helping to keep Mary (Ann's mom) busy at her assisted living facility. In a way, coordinating with Tanja reminds me of the shifts we took while helping Ann care for her dad, who was dying a few months ago. Coming together for a cause is very important to my day to day existence. Mary and I had a nice time chatting with each other while I was doing her nails. I sat with her while she had her dinner, and in the process Mary and I got to know her table mate better. The fellow who sits next to Mary is 87 years old. The funny part is no matter what is on the menu, he always chooses to eat a hot dog for dinner. I also love the saying on his hat, "Life is too short." He is a real character and full of charm. I have sat next to him before, but tonight he was in a talkative mood. He told me that he fought in WWII and that he lost his wife and daughter to illnesses. Despite all the incredible tragedies he has witnessed and lived through in his life, he has an amazing attitude and a beautiful smile. He is the perfect example of resilience and I enjoyed hearing about his life.

While I was with Mary this afternoon, Peter was working hard on Mattie's Foundation website. The website is truly coming along quite nicely, and I am impressed with what he is creating. The Foundation is hosting its first board meeting on Tuesday and there seems to be so much to still brainstorm before that point.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It sounds like yesterday was overall a positive day with notes of sadness and reflection included. I do think it was important for you to be in this sort of social setting with friends even though one of the strands of connection that you used to make the initial contact is gone. I believe you will find that the bond between you is there nonetheless, although changed in type and strength. I too, have read much about altruistic behavior and it seems it is coded into our genes but as with every other behavior, it becomes stronger when reinforced. While it would be nice to say that we should do "good deeds/mitzvahs" simply because they are the right thing to do, it is gratifying to hear that your efforts made a difference to someone. Sometimes it is the small things that make a big difference, one often never knows so it is worthwhile to do those things as often as you can. I will tell you that your style as a teacher and a caring professional have made the difference for many; we (the cohort)often talked about how much we admired you and used you for a role model as we went about learning our skills as counselors. I hope that you can find your way back to teaching at some point; it is a "good deed" of a special sort that many wish they could do as well as you do. I hold you gently in my thoughts as I practice today. Namaste."

The second message is from a colleague of mine, who is a faithful blogger. Martha wrote, "I read your Blog every day -- haven't missed doing so every morning first thing -- and if I'm up late I read it before going to bed. Especially, with my personal and professional experience, I appreciate you sharing your feelings and experiences along your daily coping path. I admire all of who you are and particularly resonate with your experiences. I remember months of only feeling good because I was getting through a day -- not because I had even one moment of happiness, but only I had made it and even accomplished keeping myself and those for whom I was responsible alive and moving along. Even now, forty years later, I can remember the horrible shock and pain of John's death, the loneliness and cares followed. The scars will always remain and the memories. You certainly want the pain to lessen, but none of the memories, good or bad to fade. This experience is part of what makes me who I am today and hopefully a better helper for others. I do know how hard it is to keep going and appreciate your strength and love of Mattie that makes you able to share yourself in your Blog each day."

December 4, 2009

Friday, December 4, 2009

Friday, December 4, 2009

Tonight's picture features Mattie using the hose to water our garden. Notice he is wearing a raincoat to do this! This was because he usually got more water all over himself than the plants, and he thought it would be a good idea to wear a raincoat for the process.

Poem of the day: In Our Hearts

We thought of you with love today,
But that is nothing new.
We thought about you yesterday,
And the days before that, too.
We think of you in silence.
We often speak your name.
Now all we have is memories,
And your picture in a frame.
Your memory is our keepsake,
With which we'll never part.
God has you in His Keeping.
We have you in our Heart.


Today, Tamra (a friend and SSSAS parent, as well as a co-coordinator of Mattie's Celebration of Life reception) planned a luncheon for myself and eight other Team Mattie helpers. She made a fabulous homemade butternut squash soup and salad, and Liza (another friend and SSSAS mom) spoiled us with her homemade fudge and chocolate covered strawberries. Tamra, as always, was a gracious host and made the day special and memorable. She also gave us an outlet to connect with each other. Several of these moms had never met each other before Mattie's illness. So I find it particularly meaningful to see how Mattie's life touched and connected people. These connections have remained, and I believe this is a significant part of Mattie's legacy, bringing people together for a common good.

Social situations for me are a mixed blessing. Part of me needs to socialize and connect with friends, but the other part of me is well aware of the fact that I now differ from these ladies. All of these women are moms, and I was a mom. So at times when this reality hits me, it saddens me. I am not saying I do not fit in with other women or in other social situations, I do, but it is a more intangible difference, that is hard to describe. Living through Mattie's diagnosis, treatment, and death have profoundly altered my life, my lens of the world, my hopes for the future, and basically has made me re-evaluate just about every thought and belief I used to hold and value. I have learned that nothing in life is guaranteed, and without Mattie, the typical joys and milestones one has when raising a child have disappeared. These were not only benchmarks for Mattie's life, but also vital markers for Peter and I. For example, I no longer measure my world by an academic calendar (okay that is the only positive - but without it, one day blends into the next), there will be no graduations, no college/grad school experiences, no wedding, or grandchildren in our future. These are major losses, because they are the loss of what could have been. So in essence Mattie's death is a loss of the present and the future wrapped up into one.

At the luncheon today, one of the mom's brought her six month old with her, and as he sat in my lap, I immediately thought about Mattie. He was such a healthy baby, and during times when I really think about all of this, I can't understand how a healthy and active child could develop such a devastating disease. There are no answers to any of my questions about Osteosarcoma, other than, it took Mattie's life, and it has ruined our lives as a family.

One of the conversations we had at lunch was intriguing. The question boiled down is what motivates people to help one another? Is it internally driven in which a need is being fulfilled within ourselves, or do we perform acts of kindness for external validation and praise? We debated this for quite some time. It would be idealistic to think that people help others for altruistic purposes. I have no doubt the intentions sometimes may seem altruistic, but we are social creatures, and I don't think anything is wrong with getting positive feedback for a good deed. In fact, if we did not get this feedback how would we even know that what we did made a difference in another person's life. So to me, it is a complicated question, in which both internal and external motivators must be examined. I am very well aware of the fact that not all people get involved with helping others to fulfill an internal need. After all, for over ten years I have taught undergraduates in the District of Columbia. Part of their program requirements call for them to volunteer in the community each semester. I have had my share of students who have challenged me about this requirement. Therefore, initially they were not internally motivated to help others, however, after a semester of working with children and teens, I began to see a change in their thinking and feelings about service learning. They began to see its relevance, and its necessity in their lives. This is a simplistic example, but if we do not provide our younger generations with opportunities to help others, if they don't see us doing it, where on earth are they going to learn the joy, value, fulfillment this provides? A fulfillment like no other, because nothing else can really provide and sustain you in your life like connecting deeply with another person!

Though I think my career path and personality naturally fits with the helping profession, Mattie's illness and death opened my heart and mind to possibilities I never even imagined. I intensely cared for Mattie for over a year. It was 24 hours, seven days a week, and within this intensity, I learned about love that is indescribable. Tamra commented to me today that she feels that my clinical background helped Mattie tremendously. I asked her to elaborate on that. She has vast experience with families affected by cancer, and her observation about Mattie was fascinating to me. She said that at no time when she interacted with Mattie, did she feel as if he was asked to support me emotionally or worry about me. He never showed that he was frightened, scared, or worried about his future, mainly because I provided him with hope, love, and consistency. In other words, I was able to keep it together (at least in front of him) and compartmentalize my feelings, so that he could live as happy and productive life as possible while undergoing heinous treatments. I never thought about this before, because when Mattie was sick the only one I worried about was Mattie. My needs went on the back burner. I admit I never matched my clinical skills to helping Mattie in this capacity, but it made me feel very good to hear Tamra's perspective that Mattie seemed happy until the end. I freely accept this external validation, and actually cherish it, since when you lose a child, you can land up second guessing every possible decision you ever made.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for posting the picture of the centerpiece- it is lovely and I know that Ann's family will appreciate having it on their table this holiday season. I can imagine how much Abigail's story of the locket meant to you; it was so lovely and what a wonderful gift to be given by one so young. Truly, children have the real touch of giving a gift that comes from the heart. I am sorry you did not get anything helpful from the workshop; I did pass your feedback on to them this morning. Hopefully, they will be able to "update" things as needed. I have noticed a lot of "non professional" presenters relying heavily on index cards and I am not sure they realize how disruptive that is to the speaker-listener connection. I understand that you will be meeting with friends for lunch today and I hope that you are able to enjoy the company. Many people are anxious to see you although everyone also wants to respect your need for solitude; I hope this lunch gives you an opportunity to see how much your friends care for you. I hold you gently in my thoughts."

December 3, 2009

Thursday, December 3, 2009

Thursday, December 3, 2009

Tonight's picture features Mattie doing one of his favorite things, playing in sand. When Mattie was one and two years old, we took him to the beach. Both times he was deathly afraid of the sand. Which is truly ironic, because once he got to preschool, he absolutely LOVED sand. In fact, he could spend hours upon hours playing, creating, and building elaborate mounds for vehicles to drive through or in.


Poem of the day: His Journey's Just Begun By Ellen Brenneman

Don't think of him as gone away--his journey's just begun
life holds so many facets
this earth is only one.
Just think of him as resting
from the sorrows and the tears
in a place of warmth and comfort
where there are no days and years.
Think how he must be wishing
that we could know today
how nothing but our sadness can really pass away.
And think of him as living
in the hearts of those he touched...
for nothing loved is ever lost--
and he was loved so much.

Today was Mary's (Ann's mom) 81st birthday, and like last year, this year I had the opportunity to celebrate it with her. I vividly recall attending Mary's 80th birthday party that Ann planned. It was at that party when I first met Mary, which is ironic, since I feel like I have known Mary for much longer than a year. It is amazing what can transpire in a year's time. After all, within that time frame, Mary lost her husband and I lost Mattie. I am pretty sure neither one of us could have predicted how 2009 was going to end for us. However, it is through these deep loses that we are bonded together, and though we can't possibly understand how the other feels, we have a pretty good sense nonetheless. We all had a lovely lunch together and it was wonderful to see what pleasure food brings to Mary. A woman after my own heart. The gift of food and conversation seem to be so meaningful to both Mary and myself.
Later this afternoon, I picked Ann's oldest daughter, Katie, up from school. We chatted about her day and other happenings and when we got to her house, she immediately noticed the centerpiece that I have been working on for her mom's table. Katie seemed genuinely interested in this project, asked how I made it, and she told me that she really liked it. She even guessed which of the trees was the hardest to create. I am not sure why her reaction surprised me, maybe because I just wasn't expecting it. Katie also thanked me for picking her up from school and for other things I did for her throughout the afternoon. Again, I don't do things for the feedback, but felt very touched that we had these moments together today.
As I promised, I took pictures of Ann's table this afternoon. The picture on the left shows a closer view of the three trees I made. One tree is made from starlight mints, the second is made from cinnamon red hots, and the third is made from candy canes. For those of you who are interested, the candy cane tree was the hardest to make. I then placed the trees on a mirror that is covered in faux snow. Within the snow, if you look closely, you will see miniature ice skaters.
The picture on the right shows the other items I surrounded the centerpiece with, in the hopes of carrying over the winter wonderland theme down the table.





















Before I left Ann's house today, her youngest daughter, Abigail, told me a story. She showed me a pretty locket that she received as a gift. I commented on how lovely it was, since I can still remember how special it was to receive a locket as a child. However, there was more to the story, and as it began unfolding, I couldn't believe what I was hearing. Abigail told me she put something in the locket. I was expecting a picture perhaps. Do you want to know what she put in it? Well, some of you may recall in the spring, Mattie stayed over night at Abigail's house, and that was a memorable sleep over for him. It was his first and last and I am so thankful to Ann that Mattie got to have this "normal" experience. At the sleep over, Mattie and Abigail planted a "fairy garden." I remember it vividly since Ann sent me pictures of it. In any case, when Abigail opened the locket, she showed me a pink petal from the "fairy" garden that she saved. She said this way she can always remember Mattie, her friend. I was lost for words as she told me this story! As I drove home, I replayed this story over and over in my mind. I later wrote to Abigail because I wanted her to know how deeply touched I was by her story. The beauty of this story is that it was completely self initiated by Abigail. She did not tell me this to make me feel good, she did not put the petal in her locket to please me, she did this because she truly cared about Mattie and wants to remember his friendship. To me I received the best Christmas present this year. It is not something I had to unwrap, and I did not find it under a tree. This gift is priceless because I know that Mattie is remembered in the heart and mind of his friend. At age 7, Abigail has taught me a valuable lesson, the power of friendship, a power that goes beyond the physical and tangible needs we have as adults.

This evening Peter and I attended a presentation in Northern Virginia on "surviving the holidays after the loss of a loved one." I went into this presentation with low expectations, and thankfully I did, because it met my expectations. The presenter was a lovely lady, but she read from index cards and the presentation was clearly geared toward people who lost an older adult in their lives. She covered many topics, but unfortunately I left with no better idea of how to deal with Christmas than when I entered the presentation. The valuable comments came from the participants and it was interesting to hear them express some of the similar feelings Peter and I have on a daily basis. The presenter discussed the importance of "moving on" and how our loved one would expect us to move on and also enjoy the holidays. Maybe so, but for us, Mattie's loss is too fresh for me to even appreciate this sentiment. She said that other professionals have told her to remove this nomenclature ("move on") from her presentation, and I would highly agree. I don't want to be told to "move on" right now. I did appreciate however, her description of grief. She equated it to having a cut on your arm. Over time, the cut heals, but under the surface the cut is always there and if you hit your arm the wrong way, you could reinjure the site, or in other words, in the emotional sense re-experience grief. Losing Mattie is indeed a wound I will always carry around with me.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I feel the same way as you do about the rain in Washington DC, particularly in the winter; it all seems very gray to me. However, there are a couple of songs (Holes in the Floor of Heaven-Steve Warnier and Clouds by Montgomery Gentry) which take the opposite view of these days, that this gray rainy weather shows the ones we love are with us. All I can say is that from my perspective it took a lot of courage for you to go into the Lego store when you were shopping with Ann. I have always thought of you as determined and passionate and now I add brave to my list. Although talking about how you feel might seem a waste of time, it is part of staying connected and staying on a path that will eventually (in your own time and own way) bring you back into the world. I know that hardly seems either desirable or worthwhile right now but you are still very close to Mattie's death and where this grief path will lead is very unclear. Try to open your heart and your mind to those who would offer to help and use what seems right to you. In days of both rain and sunshine I hold you in my thoughts."

December 2, 2009

Wednesday, December 2, 2009

Wednesday, December 2, 2009

Tonight's picture was taken when Mattie was almost three years old. Mattie initially disliked taking a bath or even being in water. However, by the time he was three, he loved bath time. He could easily stay in the bathtub for an hour or longer, playing with his toys, and experimenting with the properties of water.

Poem of the day: Gossamer's Wings By Victoria Walker

Carried on the wings of love
You were swept away
To that glorious land
Where we'll see you again one day.
With the angels hovering near
You said your last good-bye
You gave up your battle
And soared into the sky.
That sweet smile
We will always carry in our hearts
Knowing you were ready
When from our lives you did depart.
Gossamer's wings I imagine
You now call your own
As you sail in the Heavens
And sit in front of the Throne.
No memory could ever endow
The true beauty of your soul
For God gave to us our own Angel
For a brief while to hold.

It was a rainy and cold day in Washington, DC, and my mood is greatly affected by the weather, even under normal circumstances. Of course, nothing about my life is normal now, so seeing the rain only further adds insult to injury. I met Ann today at the mall. One of the places she wanted to shop at was the Lego Store. As many of you know, Peter and I know the Lego Store like the back of our hands. This is the one place Mattie loved to go, and he also had a special night at this store which was planned by Linda (Mattie's childlife specialist) right before his sternotomy. Mattie was simply in his element that night. He was wheeling himself around the store, and was thrilled to design a Lego taxi with his friend, Abigail. It was a night to remember because it was after store hours, and no one else was in the store but us, Ann, Abigail, and some Lego Brick masters.

Ann suggested I wait outside the Lego store, because she wasn't sure how going in and seeing Legos would be for me. But I figured Mattie would have been very disappointed in me if I did not go in. When we went to purchase the item Ann needed, I immediately recognized Liz (who was one of the Lego staff who helped coordinate with Linda Mattie's event). I wasn't sure Liz recognized me, so I decided not to acknowledge her. After all, having to explain that Mattie died in the middle of the store did not seem appropriate. However, Liz did recognize me and she also heard about Mattie's death. She spoke to me for a little while, and within those moments I realized yet again, that Mattie is no longer physically with me and just how much I miss him. Legos will ALWAYS hold a special place in my heart. They are expensive pieces of plastic, but they were our lifesaver for over 13 months. Even under the worst of times, Mattie could be coaxed to purchase a Lego and build a creation. I realize Mattie was only seven years old, but he was a Lego Brick Master to me.

Some days it is harder than others to talk about some of the difficulties in my life. However, while at lunch with Ann, I seemed to be able to verbalize things today. Mind you though this isn't always the case. I have many days where I usually remain at home, and talking to anyone seems like a major feat. Not only it is a major feat, but a waste of time from my perspective because I feel like my problems are insurmountable and not fixable. I think talking to someone who is grieving can be a VERY challenging experience. Mainly because the process happens and unfolds in this case on my time frame and terms. I am the person who determines the pace, what I can handle, and how vulnerable I wish I be. Naturally to the outside world, dealing with grief is something that is perceived to happen in a matter of weeks (unless you have actually had a loss yourself, and realize how ludicrous it is to have an expected grieving time), and with that we all have our prescribed notions of what we think grief should look like. But that is just it, grief looks different for all of us, even for Peter and I. We know each other well, we both loved Mattie, yet how we express our grief and what we need to process this vast loss is at times different. Ann understands that I am not looking for answers, that I simply need to be heard, not judged, and supported so that I don't feel anymore isolated than I already am (isolation which naturally occurs from living in the minority.... living through the loss of a child).


I remained at the mall today by myself. I walked around, and in the process of looking around, I decided to go into a store because I saw a jacket from the outside that caught my eye. It was a beautiful cranberry color and made out of crushed velvet. I wasn't planning on trying it on or even purchasing it, because since Mattie's death I have felt that I do not need to buy anything for myself. Somehow I view purchasing things for myself as disrespectful to Mattie and simply not appropriate. So I did a lot of inner self talk today as I managed my way to trying on this jacket and eventually purchasing it.

I spent the evening working on this centerpiece project, and have it almost completed. I know several of you are asking to see pictures of it, and I promise to post them, once I have assembled Ann's table. Peter went out to dinner tonight and I am happy he got these moments away where he could talk and reconnect with a friend.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "First, it was good to hear that the appointment went well as we are all concerned about your migraines and the issues surrounding medication. I hope this gets resolved soon so that physical pain is not a frequent occurrence for you. I am glad you had the opportunity to visit with Ann and her family and that you were able to smile and laugh some. I know this season brings lots of memories and thoughts of things that you no longer do but hopefully as well as bringing pain for the loss, they also bring a smile sometimes for the remembered joy. Clearly you don't need to dig into boxes to find memories, they are all around you. Sometime in the future perhaps will be the point at which you are ready to face certain objects, but not now. As always follow your heart, it will tell you when you are ready. As always, I hold you gently in my heart."

December 1, 2009

Tuesday, December 1, 2009

Tuesday, December 1, 2009 -- Mattie died 12 weeks ago today.

This picture was taken in December of 2004. In celebration of the Christmas season, we took Mattie to the B & O Railroad Museum in Baltimore, MD. He had a wonderful time seeing Christmas train displays and even riding on an authentic locomotive. I remember taking this picture of Peter and Mattie. Mattie was thoroughly excited to sit by the window of the train and was eagerly awaiting it to move away from the station. What you need to understand at age, 2 and a half, Mattie was enamored by trains!

Poem of the day: Because Of You by Faye Kilday

Because of you,
The world is a much nicer place.
Because of you,
I have faith in the human race.
Because of you,
I know what it means to love unconditionally.
Because of you,
I know what it means to give unselfishly.
Because of you,
I believe in magic and mystery and worlds unseen.
Because of you,
There is joy - wherever you are and have ever been.
And all because of you!



Today I had a follow up visit with the neurologist. Some of you may remember I told you about this fellow a few weeks ago. Unlike our first visit (which from my perspective did not go well), today, he was personable, empathetic, and was listening. He is trying to work on a strategy to attack my headaches, and I left today with a different prescription, but with a better feeling about our whole interaction. At this stage of my life, I freely admit that I need extra hand holding, and I need a doctor who will listen to me and my reactions to things. So the day started out better than I had planned.

I met up with Ann today for lunch. After being at home for the past two days, getting out was important. Despite how I am feeling on any given day, I do appreciate how Ann and Karen (my lifetime friend in NYC) are able to somehow draw me out, and some days I assure you it isn't easy. While I was at Ann's house later this afternoon, Ellen and her daughter, Charlotte, came over to visit. Charlotte and Abigail (one of Ann's daughters) are performing in an ice skating show later in the month together, and the girls were brainstorming the costumes they wish to wear for the show. It was fun and yet sad to see Charlotte and Abigail together, because in a way, there was an important person missing from the mix, Mattie. Mattie was very fond of both Charlotte and Abigail, and when I see these girls growing before my eyes, I imagine in my head what Mattie would have looked like as he grew older. On any given day, Mattie assured me he was going to marry Charlotte or Abigail, and like any good mom would have done with a child with a terminal illness, I allowed him to be hopeful and dream.

It was nice to connect with Ellen today, and to hear about her family and share stories. It is moments like this where I have glimpses of feeling like a part of something and yet of course, am aware of the things that I am no longer a part of. December for Mattie would have meant teacher gifts, baking things together, decorating, taking a Mattie Christmas photo for our cards, thinking about Christmas gifts, attending the holiday concert at his school, and the list goes on. Without Mattie, all of these things get wiped away. When Mattie died 12 weeks ago today, with him went a part of Peter and I. Trying to pull one's self out of the depths of losing a child almost feels like trying to hold the ocean back from hitting the shoreline. In other words, it feels impossible.

Peter went out to dinner tonight with a friend, and instead of being alone, Ann invited me to stay for dinner with her family. Her children were in a jovial mood and I just couldn't help but laugh while listening to them. Ann's house is all decorated for Christmas and for some reason today that did not bother me. Maybe because there is something very peaceful about looking at a pine tree with lights on it. On her tree are ornaments that her children made throughout the years. Several of which I recognized since Mattie designed similar ornaments in preschool. Mattie's ornaments will always hold a special place in my heart, and perhaps in the future, there will be a time when I will feel the need to pull out our Christmas boxes to find these ornaments. This year is clearly not that year.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I saw this poem and thought immediately of Mattie. As much as his death brought you sorrow, his life brought so much joy. When I read the line about magic and mystery, two things he really enjoyed, I knew that I had to share this poem with you. I had to smile when I read your blog yesterday about the centerpiece you are making for Ann. I could almost hear Mattie directing where you might glue things or how to make it more "interesting." I hope you will post a picture of it to the blog when you are finished. As for going away, that decision is up to you. While I realize you can be grieving regardless of where you are, perhaps having a break from being totally surrounded by Mattie's things and places he loved would give you some space for a little serenity. Charleston is a lovely city with much to recommend it and the pace of life is a bit slower there. If you choose not to go, make it because you chose to stay here and do something deliberate here, not as a failure to plan something even with the load of grief that you carry. If you choose to stay here, plan something, preferably something you have not done on the holiday before. Do charity work, go out to eat Chinese food on Christmas (that's a non Christian thing), go somewhere locally that you have not been. This time needs a plan, it doesn't have to be a big plan nor does it have to include a lot of people, but it needs a plan. Please be gentle with yourself, and as I have done for the past several months, I dedicate my practice and the serenity I find in it, to you today."

The second message is from Mattie's oncologist and now our friend, Kristen. Kristen writes each Tuesday to acknowledge the day Mattie died. Kristen wrote, "I am thinking of you today and everyday. I am thinking how life should be easier for you...but I can only imagine, with each passing week, facets of life are only more difficult. I know at times you are surrounded by a cloud, even on the warmest and sunniest of days. But realize those that love you and care for you blanket you too with their warm embrace and the reflection of joy that your Mattie brought into their lives."

The third message is from a former student of mine. Betsy wrote, "I'm sorry I haven't written in so long. It certainly isn't because I haven't been thinking of you. Life has gotten a bit hectic the past month, but please know that you are often in my thoughts. I just wanted to drop a quick line because I read your blog this morning, and I grew up reading The Littlest Angel. In fact, when Mattie died, I immediately thought of that book. I love that story and the wonderful meaning it has. Mattie's genuine compassion for others and his beautiful gifts are enriching the world that he is in now - I have no doubt. I know this is a very difficult season to be in right now. Take it day by day. You will get through it even though I know at moments it seems impossible or pointless. Remember that Mattie is still watching and learning from you, and he is so proud to call you mom."

November 30, 2009

Monday, November 30, 2009

Monday, November 30, 3009

Tonight's picture was taken in December of 2004. Mattie was two and a half years old, and was beaming as he was surrounded by his favorite toys at the time. Cars and trucks, or anything with wheels.

Poem of the day: When You feel Lonely

When a person you love passes away
Look to the night sky on a clear day.
The star that to you,
appears to be bright,
Will be your loved one,
Looking upon you during the night.
The lights of heaven are what shows through
As your loved one watches all that you do.
When you feel lonely for the one that you love,
Look to the Heavens in the night sky above.



As the poem describes, I would have to say since Mattie's death, I feel as if I look to nature far more than I ever did before, for signs or connections to Mattie. I never cared for wind before, but now I welcome it, because with it, comes the twinkling of Mattie's chimes. Peter and I always take notice of the moon, and on nights when there is a full moon, we can't help but think about our "Mattie Moon" (The moon was a special symbol for Mattie. This was the symbol he was given during his first year in preschool, a symbol that started the first letter of his name.). In line with this looking to nature theme, I received a children's book today in the mail from my sister-in-law's friend, Carolyn. Carolyn sent me the book, "The Littlest Angel." It is a story written by Charles Tazewell in 1939. The story is about a small angel who simply can't get with the program no matter how hard he tries until an understanding elder realizes that he is homesick and needs to retrieve a box of his most treasured possessions from back home on Earth. When it comes time for Jesus to be born on Earth, the Littlest Angel gives his precious box to the Baby, but he is worried that God will think his gift is too humble. However, God is pleased indeed, and transforms the box into the Star of Bethlehem.

I do not recall ever reading or hearing this story before, but as I was reading it tonight, I couldn't help but realize that Carolyn gave me this book at Christmas time, in hopes that I would be reflecting on my littlest angel. I have doubts about many things these days, but one thing I do know, is if Mattie is not on this Earth with Peter and I, then he is twinkling down at us from the heavens. He may not be the star of Bethlehem, but he is my brightest star in the darkest of nights.

I spent the entire day at home today, never really leaving my bedroom. I find spending time on the first level of our home difficult, since this was the area where Mattie did most of his play, and where we spent most of our time together. Despite being confined today, Patches, our calico cat, kept me company. She stayed by my side the entire day, and watched as I was putting together Ann's centerpiece, which is a work in progress. I am trying to create a winter wonderland scene for Ann's table, and the focal point of this scene are handmade trees out of candies. I joked with Ann today when I told her if I never see a candy cane again, it will be too soon. I realize we all have our own ways of handling sadness and depression in our lives. Not unlike Mattie, when I am uncertain, unhappy, or need to retreat, turning to art and being creative in some way is therapeutic. If any of you doubt Mattie's creativity, I would just have you pause and reflect on all his pieces on display during his reception of life. His works practically filled three rooms, illustrating how prolific he was in just 13 months.

I spent the entire day working on creating two out of the three trees. While working on this project, I was using a hot glue gun. This had to be Mattie's favorite device in the Lombardi Clinic. Mattie became a hot glue gun king, and over the course of his treatment, I too learned how to proficiently use one without making a royal mess. So while constructing the trees, I was watching the Hallmark channel on TV. This channel is featuring Christmas movies all month long. However, I can honestly say, I never saw or heard of any of the movies I watched today. Besides Christmas being the main focus of the movie, there was also an underlying theme. Each movie dealt with the issue of loss or death in some way. Needless to say, this caught my attention, the pairing of Christmas and coping with the death of a loved one.

I have been giving great thought as to what to do for Christmas. Peter and I are both conflicted and we even discussed the idea of going away. In fact, we both came up with the idea that we wanted to venture down South to Charleston, SC for Christmas. However, today when I started to research this trip, after about ten minutes I had to stop. I stopped because I asked myself, why am I doing this? Am I going away because I want to go away, or am I going away because others are telling me this is what I "should" do? It is plain and simple, I do not want to go away. My heart isn't into it, and why be miserable somewhere else, when I can be equally miserable at home. Of course I could change my mind tomorrow, because I have fleeting happy moments where a trip seems doable, but then the reality of my situation always comes back to haunt me.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I read your blog and I understand how the poem (Love me enough to let me go) could invoke more than one feeling in you. I think the author was saying that there comes a point when something cannot be fixed, when someone is in so much pain that if you love them, you let them go. That's what you did for Mattie. I know you want Mattie back but you don't want Mattie as he was toward the end, suffering, hurting and in pain that could not be alleviated. I am sure you will find your way with the foundation and as you make your needs known, the right people will come forward to help you develop it into what you want it to be. Just remember, you are only one person and you cannot do it all yourself. I am sorry you could not get to Roosevelt Island to walk and enjoy the weather and the peace you usually find there, but I am glad you did take a walk today nonetheless. Not only do you have the difficult task of dealing with your feelings and your sorrow, you also need to find a way to overcome grief induced exhaustion and get back in touch with your physical self as well. As always, be kind to yourself, do what feels right and as much as possible try to find a bit of serenity in the day."


The second message is from Mattie's social worker at the Hospital. As my daily bloggers already know, Denise has been very supportive of Peter and I and has written us some beautiful messages since Mattie's death. Denise wrote, "It was very nice to see you last week and I am sorry that the visit was interrupted by an emergency. I hope in some small way that you were comforted by knowing that you are very much cared for here and that you and Peter have your own significance with everyone separate from Mattie. I wanted to send Thanksgiving blessings to you, recognizing that the loss of Mattie may feel even more intense during the holiday season. I trust that you will be embraced by the love of family and friends and that it may give you some measure of comfort to know how much you are loved and cared for. Everyday you give of yourselves through your blog helping countless people cope with difficult life situations, decisions, survival and the meaning of life. May you be blessed as you are blessing others."

November 29, 2009

Sunday, November 29, 2009

Sunday, November 29, 2009

Tonight's picture was taken in March of 2005. Mattie was in a silly mood when Peter took this picture. He had his Easter sunglasses on (they had plastic Easter eggs in the corners of them) and he had placed stickers all over himself. In fact, I can still remember the energy Mattie had that day, and what you may not be able to surmise is that if I wasn't hugging Mattie, he would have most likely bounced right out of my lap and onto Peter who was sitting in front of us taking a picture.



Poem of the day: Love Me Enough to Let Me Go

Your hearts are breaking-
I know, I can tell. Because you're my parents
and I know you so well
As hard as this is, there's something I need to say
I don't want to linger,
don't beg me to stay
Keeping me here only gets in my way
Prevents me from being where I want to be
Out of this body and finally pain free
Living with God is my ultimate goal
By taking me home
He is making me whole
The only thing holding me back,
Mom and Dad, Is thinking of you and the good times we had.
You fought for me when no one else could,
Refused to give up when others told you you should
You packed a whole lifetime of love in (seven short) years
Gave me strength to handle all of my fears
Showered me with courage-you said;
"It's a loan"While secretly hiding tears of your own.
You've done everything I needed.
I couldn't ask for much more
Please love me enough to help me pass through that door.
I know you are sad and it doesn't seem fair
But the time has come to put me in God's care
Since I started the job I was sent here to do
And planted a seed now residing in you.
I'm sure I can trust you to carry my load.
Please love me enough-enough to let me go.



This poem evokes two feelings in me. The first of which is part of me hopes that Mattie feels as if we packed a lifetime of love in his seven short years, that we gave him courage and strength, and tried to meet his every need even in the end. However, the other feeling is I can't accept what this poem is asking me to do, which is to love Mattie enough to let him go. To go with God, I assume. It is my hope that Mattie is in God's care. Growing up Catholic, I was taught to believe that challenging God's plan and mission was neither my place or perhaps it was beyond my understanding. Maybe that is correct, because even on a good day, I still can't fathom having to let my son "go." For what reason?! What could God's plan be? If his plan was for us to witness 13+ months of torture upon Mattie, and now to have to live with the aftermath of such a life threatening illness, Mattie's death, then I must pause and wonder. That seems like a horrific, painful, and devastating plan. I am not saying I am not grateful that God provided us with Team Mattie and Mattie's amazing doctors and nurses. I am forever grateful for this and despite living with grief each day, I try not to forget the many acts of kindness and love I experienced and still experience. But somehow, I realize nothing can bring Mattie back. Nothing can bring my former life and world back, and the scary part is now I am left to live with the broken shell of a self that remains.

I woke up feeling very tired today, and I had my usual headache. It was the kind of day where I wondered if it was worth even attempting to do something "normal." Peter mentioned to me today that while he was flipping through the channels on TV, he came across a cooking show that caught him attention. He went on to tell me that the woman was cooking an Italian dish and as he described it, it sounded good, and I knew immediately who he was talking about. For those of you interested in cooking, you most likely have heard of Giada DeLaurentis. Any case, I told Peter she has a cookbook out that I have wanted to get before Mattie got sick. So we decided to try to get the book today and make a recipe from it. However, even a trip to a bookstore can be a difficult place, because the first thing you see in the front of most stores now is children's holiday books. One of Mattie's favorite authors was Jan Brett. Mainly because he was introduced to her writings in his preschool, and we both admired her illustrations. Naturally, the featured book today was Jan Brett's book, The Mitten, staring me right in the face. But being in the bookstore and then buying the ingredients today to make this recipe somehow did not make me happy. In fact, being surrounded by people only irritated me. There are some days that I can deal with the outside world better than others, and today wasn't such a day. I have been edgy and agitated all day, and unfortunately in such a state, Peter lands up being the recipient of my mood.

I had wanted to go with Peter today to Roosevelt Island, a place Mattie loved to be. However, because it was 60 degrees in Washington, DC today, and it felt like spring, every one and his cousin was at the Island and there was no where to park the car. Some how something so simple, was deeply upsetting to me. I was upset for more complex reasons than not being able to find a parking space. I was upset because I wasn't going to be able to walk on the Island and somehow connect with Mattie. Connect with his memories there, and to be able to walk in a peaceful place and reflect on those memories. Peter could sense I was upset, but I wasn't able to verbalize why.

Later in the day, we attempted to go back to Roosevelt Island, but we still were unable to park. At which point we came home, and we instead took a two mile walk on the Washington Mall. Thankfully it was later in the day, when there wasn't as much traffic or sidewalks streaming with people. While walking we talked about Mattie's Foundation. I will always love Mattie, and I want his Foundation to be successful, but I also know my limitations now. I expressed my feelings to Peter, because at the moment I have to take one day at a time. Though I am not a person who typically looks out for myself, at this point, I realize I must. So my role on the Foundation, will need to grow with me, or evolve as I can handle it.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am glad you found a project to work on; we all need those. You have so much creative spirit and I am delighted that you found a way to harness it for Ann. I am sure it will be special and perhaps it may become part of her holiday tradition year to year. Grief is overwhelming and it cannot be taken whole; yet it seems to overrun everything else. Finding distractions and projects is a good thing to do; the moments of grief and despair will still come and when they do, sit with them as best you can and don't judge yourself for your reactions to it. Like waves, they will recede and then return when they will, eventually spacing themselves a little farther apart. Today, just try to be gentle in your self judgment when those times come. I will dedicate the energy of my practice today to you in the hope that it helps sustain you in your moments of need. Namaste."

The second message is from my colleague and friend, Denise. Denise wrote, "I came across an essay written by Erma Bombeck-Mothers Who Have Lost a Child-May 14, 1995 and within that essay she wrote, as you have written, "And who do you think prepared them (the mother) for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going." She wrote the column for Mother's Day and said, "This may seem like a strange Mother's Day column on a day when joy and life abound for the millions of mothers throughout the country. But it's also a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back..." It seemed to echo your writing about Mattie and how he did not leave you until he felt he had connected you with Team Mattie. Although you walk this path at your own pace and it is your journey, there are many hands and hearts that walk alongside you each and every day."