MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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

April 3, 2010

Saturday, April 3, 2010

Saturday, April 3, 2010

Tonight's picture was taken at Mattie's 6th birthday party. Mattie was in love with bowling and Scooby Doo at that point. So we had a bowling party for him, and a Scooby Doo cake. Mattie was a trooper that day, because by the end of the party he was running an 101 fever and feeling ill. This was just three months before he was diagnosed with cancer. We were all oblivious at that point how our lives were going to change overnight!


Poem of the day: Where the Soul Never Dies by Sam Oliver

Nature, a reflection of our soul,
reveals the seasons of our lives.
Like people, earth’s seasons teach us
patience, awareness, and encourage us to grow.
From the sparkle of sunlight in the doe’s eye
to the sparrow elevated by the air below its wings,
the spirit of God is the source of life that fuels our spirit
and raises us above pain and sorrow.
Only the soul can travel to this place above the clouds
where we are lifted by the breath of God.
Here, the lessons learned in nature
disclose to us that dying is a transition into life
and nothing completely disappears.
Rather, we are transformed into another realm of existence
to experience the essence of living
where the soul never dies.

Peter and I spent part of the day working on "March for a Miracle" paperwork and discussed on line walk registration and Peter began working on formulating this. We spent a good deal of time assessing how other organizations handle the whole process of walk registrations. Looking at other models through the Internet is very helpful and it gave us a lot to discuss.

In the afternoon, Peter and I went in two separate directions. Peter was given baseball tickets to Nat's Stadium to see the last practice game of the season, before opening day tomorrow. The practice game was between the Nat's and the Boston Red Sox. Probably to no one's surprise, I hear the Red Sox won. The last time Peter was at Nat's stadium, he went with Mattie and myself. I will never forget that day. Mattie was like me, he did not appreciate sports for the most part. So though Peter was looking forward to seeing the Red Sox play that day, Mattie kept him hopping. There was NO sitting and watching the game for Peter. However, by that point Mattie had cancer, had been dealing with so much trauma from his diagnosis, that Peter and I basically were going to do just about anything to make sure Mattie was happy. So much so, that at Nat's stadium we visited the Build a Bear store. Mattie created a dog dressed up in baseball attire. This was about the only thing that brought him happiness and a smile on that day. Whatever it took was our philosophy. I distinctly remember that day, how people were staring and glaring at Mattie's bald head and his wheelchair. A feeling that angered me intensely. I give Peter credit for going back to Nat's stadium today, because if I never see that stadium again, I would be just fine with that.

While Peter was at the game (and he had a good time!), I met up with my friend Amany. Amany and I met each other in graduate school over 14 years old. We had a lovely lunch together. We chatted non-stop for over three hours. It was funny, Amany reminded me of the fact that when I found out I was pregnant with Mattie, a boy, that I was very concerned. Concerned because I did not know if I would have the foggiest clue how to raise a boy. When she mentioned that today, it brought a smile to my face. Actually we were both smiling, because now, eight years later, as I reflect on this, I realize just how wrong my statement was. I may not have known how to play with a boy, but I learned quickly. Mattie was the best teacher, but it was easy to learn when you are in love with the person you are caring for. Mattie and I were certainly mother and son, but it went beyond that. Mattie was just like me in disposition, personality, and temperament. We understood each other perfectly, and we had an inseparable bond. A deep bond that most people could see as soon as you met us. So in losing Mattie, I feel I lost a part of myself, and most definitely lost an irreplaceable bond!

Amany and I went through many ups and downs together during graduate school, and we both certainly know how to sit in these difficult moments. Talking about Mattie can be hard to listen to, because it naturally brings up pain, anger, depression, and hopelessness, but these feelings have to be discussed and processed. In comparison to the last time I met with Amany, today I was able to more freely discuss how I was doing, and I view this as great progress on my part. In addition, I explained to Amany that through Mattie, I have been conditioned to avoid talking to people on the telephone. In fact, I really don't prefer this mode of communication. To me it is safer talking to people through e-mail or text messages, or face to face conversations. Somehow being attached to a telephone makes me feel uneasy, edgy, and trapped. I am sure that makes no sense, but I think it is after months and months of conditioning. Talking on the telephone greatly bothered Mattie. He did not like the noise, and he most definitely did not like how it distracted my attention away from him. Because he was dealing with such horrendous treatments and surgeries, I felt it was important to respect his needs. But over time by respecting his needs, it also changed how I communicate with others.

As Mattie's birthday approaches tomorrow, Peter and I are trying to figure out where our 8th forget me not seed planting will be and how we will spend the rest of the day. We realize it will be a challenging day and we elected to spend the day alone together. I know that many of Mattie's friends thought it would be nice if we threw a party to celebrate the occasion. On some level I feel bad that I am not providing the children with this outlet to acknowledge their friend. However, this year, we need to find a way to get through the day ourselves, and some how celebrating Easter and being around children did not seem to be an appropriate match for us. I invite you to celebrate this special day with your family and friends and I certainly would love to hear any stories you wish to share with me about how you remembered Mattie on Sunday.

I would like to share two messages with you tonight. The first message is from my friend, Charlie. Charlie wrote, "I am so glad your experience yesterday with donating Mattie's unused toys in honor of his birthday went well. The picture is great and I know the staff and the children being treated there at Georgetown will really appreciate and use those toys and books. It was also nice to hear that you decided to do this planting in honor of Mattie's birthday and I will be waiting to hear what location you picked out for the last group of seeds. As I've said before, Mattie's story has spread far beyond his physical presence; his spirit is honored in a number of lovely ways. Like a pebble in a pond, the ripples spread far beyond the original splash; so too was his impact on so many. Hopefully, the success of the foundation will bring his story as well as hope to a new group of children until there is no longer a need to do so. May tomorrow be a day when the positive remembrances outweigh the negative ones. I hold you gently in my thoughts."
 
The second message is from my friend, Amany. Amany wrote, "I just wanted to take a moment and tell you that I have been thinking about Mattie's birthday and you and Pete all week. Worrying about how you will handle it. Questioning why he isn't here and so many other things......I love the planting of the seeds--so special and I intend to do the same tomorrow. In reading the blog, I am overwhelmed and continually in awe of the way Mattie's life, sickness and death has brought so many wonderful people together. Mattie and you and Pete are so special and your energy has worked miracles. To do that in the midst of such tragedy and agony is nothing short of amazing and inspiring. While his life was so short, Mattie made more of an impact and his life had more meaning than those who have lived long lives. I have never seen multiple communities of people come together and do so much. His ability to move everyone to such action speaks volume about the power of Mattie's life, soul and spirit. May it bring you just a little comfort to know how impactful and meaningful his life was."

April 2, 2010

Friday, April 2, 2010

Friday, April 2, 2010

In honor of Mattie's 8th birthday that is approaching, I will be posting birthday pictures over the next three days. This, of course, is the quintessential birthday picture. This picture was taken on April 4, 2002, the day Mattie was born. Mattie was born at Virginia Hospital Center and though he was delivered by c-section, he came into the world quite healthy. Or at least this is what his APGAR scores indicated. The APGAR(Activity, Pulse, Grimace, Appearance, and Respiration) test was designed to quickly evaluate a newborn's physical condition after delivery and to determine any immediate need for extra medical or emergency care. I will share the story of this actual day with you on Sunday. Mattie's birth story was something I shared with Mattie often. He loved to hear about that day, especially during times when he wanted to cuddle and be held, and I noticed in particular he wanted to hear this story when he was frightened while battling cancer. During Mattie's celebration of life event, I shared Mattie's birth date story in written format on a large poster board. I will post the story on Sunday as we remember Mattie.

Poem of the day: How We Survive by Mark Rickerby

If we are fortunate,
we are given a warning.
If not,
there is only the sudden horror,
the wrench of being torn apart;
of being reminded
that nothing is permanent,
not even the ones we love,
the ones our lives revolve around.
Life is a fragile affair.
We are all dancing
on the edge of a precipice,
a dizzying cliff so high
we can’t see the bottom.
One by one,
we lose those we love most
into the dark ravine.
So we must cherish them
without reservation.
Now.
Today.
This minute.
We will lose them
or they will lose us
someday.
This is certain.
There is no time for bickering.
And their loss
will leave a great pit in our hearts;
a pit we struggle to avoid
during the day
and fall into at night.
Some,
unable to accept this loss,
unable to determine
the worth of life without them,
jump into that black pit
spiritually or physically,
hoping to find them there.
And some survive
the shock,
the denial,
the horror,
the bargaining,
the barren, empty aching,
the unanswered prayers,
the sleepless nights
when their breath is crushed
under the weight of silence
and all that it means.
Somehow, some survive all that and,
like a flower opening after a storm,
they slowly begin to remember
the one they lost
in a different way…
The laughter,
the irrepressible spirit,
the generous heart,
the way their smile made them feel,
the encouragement they gave
even as their own dreams were dying.
And in time, they fill the pit
with other memories
the only memories that really matter.
We will still cry.
We will always cry.
But with loving reflection
more than hopeless longing.
And that is how we survive.
That is how the story should end.
That is how they would want it to be.

Peter and I went back to Georgetown University Hospital today. Our goal was to meet Linda (Mattie's childlife specialist) and donate, on behalf of the Mattie Miracle Cancer Foundation, about one hundred toys and books to the childlife program. All the items were unused toys or books which Mattie never had the chance to see or play with. That alone is a rather sad commentary. However, in honor of Mattie's 8th birthday on Sunday, we felt compelled to bring these toys to Georgetown so that children who are sick could use and enjoy them. New toys brought Mattie great joy and happiness, and if we can give this gift to other children, this would make us feel like we accomplished something. We also felt this would be a lovely way to honor Mattie's memory on this important week.

Linda met Peter and I by the entrance of the hospital with two empty wagons to cart things to the fifth floor. I haven't been to the fifth floor of the hospital since the day Mattie died. When I returned to the hospital back in November 2009 (two months after Mattie died), that was simply overwhelming for me. Mind you during that time, I just traversed the main floor of the hospital and went to the atrium outside the Lombardi Pediatric Clinic. I never visited the fifth floor until today. The fifth floor of the hospital, as many of you know, was in essence our home for over a year. It was my community, and I not only knew the facility well, but we also knew most of the staff who worked on that floor. Nurses, doctors, and support staff became our family. A family fighting very hard to cure Mattie's cancer. Before I went to the fifth floor, Linda asked me if I was okay doing this. That was a good question, and as I told her, I was going to have to do it some time. I might as well attempt it today. When I arrived on the fifth floor, we immediately bumped into staff that we knew. I spoke to cleaning staff, administrative staff, nurses, and doctors. Basically everyone in our Hospital community! Everyone felt that I looked much healthier and they liked my haircut. It was certainly nice to hear this feedback. I spoke with Miki, Nicole, CR, and Jenny. All of whom were Mattie's HEM/ONC nurses. What I quickly could feel internally was that I was NOT upset being there. It did not feel awkward, it did not make me upset. I wasn't expecting that reaction. My conclusion is.... yes, you can go home again. Visiting today seemed very natural, and I was happy to have the chance to tell these women how special they are and how I think of them each day.

I did not visit the PICU however. At the time Mattie was receiving treatment at Georgetown the HEM/ONC unit was integrated into the PICU. However, the HEM/ONC practice has their own wing on the fifth floor now. So entering this HEM/ONC unit really seemed fine because Mattie was NEVER in it. The space itself held no memories for me. It was the people who held memories for me, and my memories of these professionals are very positive and loving. So I believe this is why the visit today was so successful.

Linda unpacked all of our donations and arranged them on a table, so we could take a picture with them and the staff. It is our hope that we will be able to make continual donations to the childlife program at Georgetown. Mattie loved Linda, and we most certainly couldn't have survived without Linda and her interns. We are forever grateful to her, and Mattie would have wanted Linda and the children to have all these toys today. We placed a Mattie Miracle Cancer Foundation sticker on each of the donated items. The sticker had a beautiful picture of Mattie on it, as well as the name and website of the Foundation. Below you can see the donated items and part of Mattie's care team pictured. Debbi (Mattie's sedation nurse angel) isn't pictured, but she did visit with us!

Pictured from left to right: Miki (HEM/ONC nurse), Dr. Aziza Shad (Director of the Lombardi Pediatric Center, and the doctor on call the week Mattie died), Norma (the sedation nurse who worked with Mattie during all of his cyberknife treatments), Nicole (HEM/ONC nurse), Jenny (HEM/ONC nurse), Vicki, CR (HEM/ONC nurse, who returned after a year working in Ethiopia for the Peace Corp), Linda (Mattie's Childlife Specialist) and Peter.




After we said our good-byes, we were off on another Mattie mission. The mission was to plant forget me not seeds in different locations. At Mattie's celebration of life event, as a momento, we handed out butterfly shaped pouches that contained forget me not seeds.We have many left from that day, so we decided to honor Mattie's birthday this year by planting 15 seed packets in 8 different locations. We selected the number 15, because that is the number of months Mattie battled with cancer, and we selected 8, because Mattie would have turned 8 years old on Sunday. The first location where we planted forget me nots, was at Ann's house last weekend. Ann and her family meant a lot to Mattie, and it seemed like a fitting way to begin the planting process. The second location we selected was the rose garden at the Georgetown University Hospital. Today, Peter dug a spot between the roses and a holly tree, and planted 15 seed packets. Peter attends meetings at the Hospital once a month, and I look forward to hearing his report on how this planting is doing. The third, fourth, and fifth locations, were all special Mattie spots on Roosevelt Island. Peter and I walked the Island today and planted 15 seed packets in each of the three locations. The sixth location is in two of our flower boxes at home, and the seventh location is within the common garden area in our complex. The eighth location is to be determined on Sunday, Mattie's actual birthday. That will be our final planting stop for this year. We contemplated planting seeds at each of Mattie's schools, but RCC is planting their own set of forget me not seeds in their butterfly garden to memorialize Mattie, and SSSAS is planting a tree in May as a memorial to Mattie. So I did not think it was appropriate to start digging on these campuses without their approval. Therefore, the final stop will most likely be another place Mattie enjoyed visiting.

I have been receiving many e-mails as well, telling me that you are planting forget me not seeds or plants in your gardens this sunday. What a lovely and meaningful gesture, and a beautiful and visually pleasing way to keep Mattie's memory alive. Mattie loved the outdoors and nature, and I can't think of a better way to symbolize his life than with a forget me not!

Midafternoon, Peter and I stopped at McDonald's and ordered shakes. Mattie loved vanilla shakes. In the spring and summer time, they were one of his favorite things. Also during the beginning of his treatment phase, shakes were the only things he would consume. So in honor of Mattie, we had shakes. Today was an emotionally tiring day, but in the end, Peter and I felt as if we did the right thing. We felt good about our donation, seeing our Georgetown family, and planting flowers on behalf of Mattie.

Throughout the day, both Ann and Karen were checking in with me through text messages and e-mails. Naturally based on the things we wanted to do today, it could have been a very challenging day, so it was nice to have this support. As I was telling Ann about our planting journey, she asked me whether this could be a tradition each April 4, to tour the Mattie forget me not gardens we planted. I hadn't thought about it, but it seems like a very touching journey to think about and undertake.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I know you are worried that people may be growing bored with the blog or are turning their attentions elsewhere. I periodically check the counter that is on the blog and you are over 210, 000 hits to the blog. That's a huge number. That's more than 10 thousand hits a month for the time the blog has been up and running. Yesterday sounds like it was a day of intense ups and downs; I know we all admire the way you do your best to ride out the waves and stay somewhat close to an even keel. Today's practice was very difficult and intense and centered around change, accepting it without fighting. I am one who either fights or throws myself into something wholeheartedly and just staying, breathing and accepting even for a few moments is so very difficult for me. I could see the value of it; could feel the difference it made but I could not sustain where I was. However, by the end of the session I could see where I had improved and had a glimmer of where I could eventually go if I was patient with myself and the process. As always, I dedicate that energy to you; know the process of dealing with grief is there, it will eventually come but only if you let it. I hold you gently in my thoughts."  

Thursday, April 1, 2010

Thursday, April 1, 2010

Tonight's picture was taken on April 4, 2003. Mattie's first birthday! Mattie had an Elmo (the Sesame Street character) party because he was in love with this fuzzy red creature. It was a day to remember. When Mattie turned one, he was unable to walk yet, did not say any words, and certainly wasn't sleeping throughout the night. At the time I thought all these things were challenging, I had no idea what was in store for us. How I long for those correctable type of issues! As we are days away from Mattie's 8th birthday, my goal is to share birthday photos with you for the next several days!

Poem of the day: Those Who Know by Georgia Cockerham
The circle forms as each walks in.
First Tuesday of the month is here again.
We’re sorry for the reason each one is here,
But grateful we offer an understanding ear.
We say our name and that of our child.
Talk of circumstances beyond our control.
At first – so hard – to think – and then – talk.
Don’t want to be here, want to turn back the clock.
In deep grief and raw pain all come seeking “Why?”
We all start off asking why our child had to die?
The answer, we learn, is not to be found.
So simple a question and yet so profound.
Inconceivable loss. Why did we not know
That our child could be taken before we would go?
Now we sit here together. We are “Those Who Know.”
Understanding your cry - “How can it be so?”
Here you’ll find others among “Those Who Know.”
Navigating life broken - we’re no longer whole.
As the amputee learns to get by without limb,
In this room we will help you start living again.
And you’ll learn that we’re different from others out there.
And far less in this world about which we now care.
Diminished capacity—much memory gone,
But we’re here to help you learn how to go on.
As years go by, Tuesday’s come and go.
From the loss of our child so many more we now know.
Steve, Janet, Michael, Brent, Mark and Ron.
Different ages, different causes, but all are now gone.
Zach, Jeremiah, Sarah, Ocean and Jess.
You all guide us in helping those new to this test.
In your memory each of us gives what we can.
Believing that, someday, we’ll hold you again.
First Tuesday comes round. Circle forms again.
Newly bereaved parents in a fog, walk in.
We are living proof that you will survive.
We are “Those Who Know”—our children have died.
 
"Those who know" is a poem about parents who attend a support group because they too have lost a child. In fact, this poem reflects on the thoughts of parents who also lost their child on a Tuesday. Not unlike us, these parents are asking why their child had to die!? Naturally there is NO answer to this profound question, or at least one that is acceptable. The loss is inconceivable, yet, unfortunately it is our reality. The benefits of talking to other survivors of such a tragedy is that it can serve as a model of hope. Hope that there is a place in this world for us even though in all intensive purposes we feel as if our future has been crushed and eliminated. There are various kinds of support, and though we do not attend a support group, our immediate friends have taken on this role. It is ironic that through great pain of losing my only child, I also see the most tender and beautiful sides of people. A side that I have to admit I never personally experienced before. Not sure why. Maybe I was just TOO busy doing what I perceived to be important, rather than having the time to sit back and absorb this love. That may be part of it, but the other part of it I think has to do with the profound loss in question. Mattie's death at times leaves those closest to us speechless yet at the same time you can feel the empathy, the deep pain, and fear others have as they absorb the reality of life's unpredictable nature. 
 
I had the opportunity to go out with Ann, Mary (Ann's mom), and our friend Tanja. We all went shoe shopping with Mary. We were a sight to observe in the stores. Mary had multiple helpers, with Ann and Tanja picking out shoes, and I sitting with Mary putting them on her feet. I know on some level Mary appreciates this attention and certainly the opportunity for social engagement. Mary likes the sandals I was wearing today, and she landed up getting a pair of sandals that were somewhat similar. It was a beautiful weather day, and I am so happy Mary was able to get out, pick out several pairs of new shoes, and have lunch with all of us. It saddens me though to see Mary's disease progression. I have known Mary for a little more than a year, and in this period of time I have noticed so many changes. I can only imagine how frustrating these changes are for Mary, in addition to her own physical losses she is also contending with the loss of her husband and son.
 
When Abigail (Ann's youngest daughter) got home from school today, she told me she was ready to climb. Which means she wants to climb the tree, but she also wants to talk or continue our made up story about a dog named "Big Red." Remember Big Red is taking a Caribbean cruise. Not your ordinary dog by any means! Abigail is just being herself, but at times I wonder if she realizes just how special it is for me to spend time with her. She sometimes stops climbing and asks me what Mattie would think of all this climbing or the story, or whatever we happen to be talking about. Abigail has no problem bringing Mattie up in conversation, and talks about him as if he will always be an integral part of her memory. While I was with Abigail, Ann came out to sit next to me on the bench beneath the tree. Abigail came up to her mom several times and they put their foreheads together. Something Mattie and I always did. It is in moments like this it seems almost impossible that I won't have these experiences with Mattie again.
 
This afternoon, Peter and I had a conference call with Emily. Emily is a former student of mine as well as one of Mattie's first babysitters. Mattie nicknamed Emily, Emmy. Emily has just taken a new job with a company that offers a full suite of web-based software and database solutions for nonprofit organizations. Emily is a dynamic, vivacious, and bright individual who always related beautifully with Mattie and with Peter and I. However, today I had the beauty of witnessing how my student developed into a confident, capable, and engaging professional. I have the good fortune of developing long term relationships with some of my students, and watching Emily's development has been a gift. Emily has a strong on-line presence, and being of the younger generation, we wanted to seek her professional input. She shared her perspective on how the Foundation can enhance its electronic presence. I heard Emily saying many things, but when Peter reflected on the call with me tonight, I began to understand the fullness of what Emily was saying. Emily let us know that when she deals with some start up non-profits, many of them are scrambling to develop content. Emily said we are in a unique position, because we have tremendous content already. Particularly the blog. She let us know that in fact we have quite a good presence on the Internet, and shared with us our strong Google ranking. Both Emily and Peter credit my blog writing to our electronic presence. I wasn't sure I understood this at first, but Emily explained that our blog has so many keywords that when plugged into Google to do a search, our blog pops up. I tested this tonight, and I saw what she meant. In essence, as Peter said to me, it is Mattie's story and how I have captured it that explains our electronic results and by calling attention to Osteosarcoma, its treatment, and the impact of of losing a child to cancer, I am forever memorializing Mattie. I maybe able to capture the story and my feelings, but what makes this a true success is our readers. You continue to keep reading, checking in, and supporting us. Thank you!
 
Hearing this feedback today was important to me. Each night I sit down and pour my thoughts and feelings into Mattie's blog, but over time, I always wonder if others are losing interest. Emily's comments today verified that my message is indeed getting out and more importantly perhaps this message is helping others. I have to believe this, because I can't accept that Mattie's suffering was for naught! 
 
When I got home this evening, I started going through Mattie's unused toys and books and putting piles together to bring to Linda (Mattie's childlife specialist at Georgetown University Hospital). I think I was under some delusion that this was going to be easy, or easier than going through Mattie's actual toys he played with. Well I surprised myself. This was a challenging task. Challenging because as I started to see hundreds of toys around me I quickly realized the unfairness of this situation. Mattie died, but he should be alive and be able to play with all of his things. Of course in order to get to the unused toys, I had to move passed all his well used toys and things. In fact, in the fall, I took the sheets off of Mattie's bed, and I never washed them. Instead I stored them in his closet, in hopes that I could turn to them when I wanted to remember how Mattie smelled. To my dismay, the sheets had no fragrance at all on them, and that made me very upset. It is yet another example where Mattie has been removed from our lives. After making piles of things for several hours, I gave up. I couldn't do any more. I hit an emotional low. Though I dug through many things, I am still surrounded by a great deal. I frankly have no idea how I will go through the actual items that Mattie played with and loved. All I can say is I am still not ready to do that. Today's exercise proved that.
 
I would like to end tonight's posting with three messages. I am VERY touched by those of you who are writing me and telling me you are planting "forget me not" seeds or plants in your gardens. What a beautiful gesture to remember Mattie's birthday. The first message is from my friend, Charlie. Charlie wrote, "Although you are not in a formal support group, you have your own group of supporters who share your grief and support you as best they can. The description of last night's meeting around the table made me think of this poem so I found it and sent it on to you. I had heard about Sean Swarner and I am really delighted to hear that he will be at the march. I just wish that Mattie were here to meet him but I believe he will be watching it all. Thank you for sharing the story of Abigail in the tree and your interactions with her. You are still a mom; your love, caring and skill have not deserted you. The question is what will you do with those skills going forward? Sean found his "mission" climbing mountains; I think you too have a mission but you just haven't found it yet. As I practice today I will send you the energy to continue to heal and to build your strength for the search and the march. I hold you gently in my thoughts."
 
The second message is from our friend and fellow RCC parent, Mary. Mary wrote, "I wanted to let you know that we will also be planting forget me not seeds in our garden on Sunday – in memory of Mattie. I’ve been waiting for just the right time to plant the seeds. I know the girls will be so excited to plant these seeds in our garden with us. Maybe we will make it a family tradition to plant forget me not seeds in honor of Mattie on his birthday each year. Remember the few bags of forget me not seeds that came in from your order where the bags/cards were mistakenly made with hearts on the outside instead of butterflies? Well, I waited a while to try and figure out an appropriate use for these seeds. I gave them to Margaret to have the RCC children plant in the RCC butterfly garden. I think they will be doing this when they get back from spring break next week. Margaret also took a few of them to her daughter’s home outside Seattle to plant – I thought that was really touching. My Sister has a beautiful garden in Erie, Pennsylvania. She and her husband live on 13 acres of land. I will also be giving her a few of the seeds to plant as well. She will love this, not just because of her passion for the outdoors, but because she has also followed your blog (she’s currently in nursing school). Please know that we will be thinking about you and Peter (and Mattie, of course) on Sunday."
 
The third message is from one of Mattie's favorite childlife interns, Whitney. Whitney wrote, "I planted Mattie's Forget-me-not seeds in a flower pot that I painted Mattie's name on today! I cannot wait for the flowers to bloom! I put the pot right by my front door so that I can think about Super Mattie each and every day!!"

April 1, 2010

Wednesday, March 31, 2010

Wednesday, March 31, 2010

Tonight's picture was taken at Mattie's third birthday party. He had a Blue's Clues party. Mattie was in love with the TV show Blue's Clues, and we created all sorts of games around this theme. Birthday parties were not always easy for Mattie. Mainly because there was usually a lot of noise and chaos around him. However, over time, each successive party got easier and easier for him. I will never forget this party, mainly because this was the last one we planned for him at home.


Poem of the day: Memories by Lana Golembeski

All that remains are the memories
Of your laugh, your smile, and you.
Faded photographs remind me of happier times
I look at your pictures
I touch your face
Your hair
But it isn’t you.
Those are just pictures that bring back the
Memories
I can see your love of life
Your love of friends
Your love of living
In each picture of your life.
But those pictures end
Too soon for someone like you.
I long to touch your beautiful hair
To hear your wonderful laugh
To give you a big hug
To hear your stories of your life.
I want to take you shopping once again
And to lavish you with silly
and wonderful things.
I have no one to spoil anymore;
No one to call me “mom;”
No one to tell me that they love me.
And I long to hold you once again and
To whisper in your ears how much I love you…until the end of time.

As promised, The Mattie Miracle Cancer Foundation is proud to announce our speaker at this year's walk will be Sean Swarner. I had the opportunity to be introduced to Sean electronically last year. Thanks to a SSSAS parent who was a part of Team Mattie, and a parent of a classmate of Mattie's. Sean and I traded e-mails last year, because I was inspired by his story, his will and hope to survive cancer, and his mission to help others fight this horrible disease. Some quick facts about Sean. He is a:

1) Two-time pediatric cancer survivor
2) First Cancer Survivor to climb the 7-Summits
3) Author of the book Keep Climbing
4) International Motivational Speaker

Here is a snipet from Sean's website: "Sean Swarner has broken through defined human limitation in order to redefine the way the world views success. Sean was diagnosed with two completely different types of cancer, once at the age of 13 and again at the age of 16 where he was given fourteen days to live and read his last rights. He astounded the medical community when he survived both these brutal diseases and a medical-induced coma. Sean realized that after defeating cancer twice, no challenge would ever be too great or any peak too high."

I encourage you to watch the two youtube videos about Sean's life and to visit his websites. Sean embodies everything I was looking for in a speaker for our first MMCF walk. Sean understands cancer, has lived it, has an incredible message of hope and survival, and has turned what could have been a tragedy into something positive, uplifting, and inspirational. I very much value his commitment and passion to help, educate, and support others, and it is our hope that you will support this year's walk and come meet Sean and support a valuable cause (which is to ultimately raise money for pediatric cancer research and be able to offer social support services to children with cancer and their families).

Videos on Sean:


www.youtube.com/watch?v=dTGi1MhxtEM
www.youtube.com/watch?v=lVQGAg-k4bw

Websites: http://www.seanswarner.com/ & http://www.cancerclimber.org/


As the poem indicates tonight, Peter and I are left with many memories. That is all we have to pull from. Imagine, those of you who are parents, that the only reminder of your child you have is a memory? You can no longer hug your child, say you love him/her, and certainly you can't purchase anything for him/her any longer. This is quite hard for me, I have been conditioned to shop for Mattie. I knew what would make him happy and what he needed. Without this role, I feel lost. It leaves me with an emptiness that is indescribable. I miss Mattie's voice and hearing him say, "I love you." We always said to each other, "I love you to the moon and back." How do you come to peace with not having your child in your life? I really don't know, you have to accept it some how, but finding peace over losing Mattie seem unobtainable.

I met with Ann and Alison for lunch today. Meeting with this dynamic duo always reminds me of our Mattie planning days. Typically if they were both visiting me at the hospital at the same time, then things weren't going well and there was most likely a crisis. It seemed as if our lives were always in crisis. You don't forget individuals like this who always seemed to rise to the occasion, even when things seemed the worst. As Mary (Ann's mom) always says to me, she and I are united over the deaths we experienced, Ann, Alison, and I were united through cancer.

This afternoon, Ann's youngest daughter, Abigail, and I went back to the tree. I swear this tree is a powerful force. While climbing the tree, Abigail did some gymnastic routines and she had me evaluate each routine. However, Abigail then asked me to make up another story for her while she was climbing. She specifically asked for a dog story. So I did not disappoint. I created the story of a big dog named, "Big Red." Okay not a very original name, but Big Red went with his family on a Caribbean cruise. Abigail was also in my story. She was Captain Abigail, the coordinator of the children's programs on the ship. This story took on a life of its own, and in the process of telling the story, Abigail joined in and literally we incorporated her spring break vacation activities into the story. Abigail reminds me of Mattie in many ways, because this is something Mattie would have done. Mattie loved creating, and he loved spending one on one time with me. Talking, creating, and just being. Not all children can appreciate that, but as I was sitting with Abigail today, it reminded me that... yes indeed I was once a mom.

Tonight, Peter and I had dinner at Ann's house and then we had our first Walk planning meeting. Ann's dining room table was surrounded by volunteers. Many of whom helped with the walk last year. The ideas were flowing and the energy to do and participate was strong. The meeting left me very humbled. Humbled because Mattie's life touched these individuals in such a significant way that they would generously come back this year and give of their time, skills, and energy. As the meeting ended, I felt so many emotions. The feeling that Mattie's life mattered, that he brought parts of his communities together, so much so, that they are committed and behind us to plan another walk! But also I couldn't help but feel sadness. Sadness for why we were at this meeting. Once people were leaving, I began to cry. Tanja was sitting next to me, and she literally put her arm around me for about 15 minutes as I was just unable to talk. In these moments there is nothing you can say to me to make me feel better, I really have to sit in my emotions, and somehow Tanja understood that. She was quiet, yet very supportive. I felt understood and not alone. I felt like I received a gift tonight being in the presence of those who care so much.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It is impossible to believe that Mattie is not here to celebrate his 8th birthday. Like everyone else I cannot help but believe that there is a reason that Mattie's birthday falls this year on Easter Sunday and within Passover week. As we attended Seder last night with our community the Rabbi told us to search our lives for something that we needed to work at freeing ourselves from whether it was overwork or an addiction or anything that prevented us from taking joy and appreciating the life that the Lord has given us. I thought about you and how hard you work to keep from being held prisoner and succumbing to overwhelming grief. I know it takes courage to awaken and face each day and so as I practiced today I sent my energy to you to help you find that source of strength within yourself. I know that the march will be a good if bittersweet event but I hope it helps bring some peace and healing to your heart when you see all those who care about you joining with you in remembrance and support. I am glad you had an opportunity to get out and enjoy an evening with Peter, Jerry and Nancy and that you were able to find a space for laughter. I hold you gently in my thoughts."

March 30, 2010

Tuesday, March 30, 2010

Tuesday, March 30, 2010 -- Mattie died 29 weeks ago today.

Tonight's picture was taken in April of 2005. Mattie had just turned three years old. One of Mattie's favorite things to do was to play with trains. He loved arranging the track and creating different configurations. I must admit prior to having Mattie, I never played with a train, nor did I have the foggiest notion how to connect the wires of electric trains. However, Mattie taught me the art form of playing with trains, and thank goodness, Peter understood the mechanics of those set ups. Got to love the smile on Mattie's face in this picture!
Poem of the day: Softer by Lana Golembeski

The grief lies quietly,
Beneath the surface of our souls.
It follow us around like
An unwanted shadow.
It is cunning.
It doesn’t strike like it used to.
But it strikes like a ghost;
Hidden, unseen, unpredictable.
It lies just below the surface;
Following us everywhere we go.
It never leaves us.
It does not hit like it used to;
Putting us in the fetal position.
But it is unrelenting
Gnawing at our heart and soul;
Eating at us slowly, but surely.
It shadows our very lives.
It never leaves us alone.
It constantly reminds us of our forever loss.
It is a softer grief;
But it never, ever, goes away.


Today marks the 29th week of Mattie's death. It is hard to believe it is another Tuesday. But not just any Tuesday, it is the Tuesday before Mattie's birthday. Mattie would have been 8 years old this Sunday. I have to tell you, I always knew there was the possibility Mattie wouldn't make it, but I had no idea while celebrating his 7th birthday, that he wouldn't be here with us this year. Can you imagine this happening to your child? Most likely the answer is NO! Peter and I are trying to figure out how we want to acknowledge Mattie's birthday. In a way, having Mattie's birthday fall on Easter this year, is a blessing and a curse. It is a blessing I suppose because of the religious significance of Easter. However, it is hard to separate the religious holiday from Mattie's day. Perhaps they are meant to be intergrated. On one hand, it should be a day of rebirth and renewal, yet in my heart this is not how I feel. It would be easier to retreat that day, but I am not sure in the long run that is a good solution.

Peter and I are working with Linda (Mattie's childlife specialist) at Georgetown University Hospital to coordinate a drop off of "Mattie" toys for the children at the Hospital this Friday. I remember how a new toy delivery energized Mattie, and I am hoping that Mattie's unopened toys will bring this same joy to others. It seems fitting to give gifts to others on Mattie's birthday, because his life was our greatest gift.

I went today to get my hair cut. Seems like months go by, and I don't think about these things anymore. The person who has cut my hair for years is a very special lady. She owns her own business, but has a heart of gold. She helps her employees who have cancer, she gives them financial and emotional support, and she even offers her home to those who do not have a place to live. When we talk, and I catch up with her, she always has fascinating stories to share. However, what I admire abouat her is that she doesn't do good deeds to be acknowledged, instead, she does them because this is how she was raised..... to follow her heart. It is a part of her life, and giving to others clearly makes her feel alive. You have to admire a person like this, because it is unusual to find such altrustism. In any case, when I meet with her, I not only get my hair cut, but as I told her today, I feel she restores my hope for the human race.

This afternoon, I met up with Ann, and while having lunch we discussed the upcoming March for a Miracle walk on May 23. Peter and I are committed to this event, but I assure you given the year we have had and are having emotionally, staying focused is a challenge. I will announce tomorrow who the Keynote speaker will be. We finalized this today, and I am very excited to share this information with you. So stay tuned. We welcome anyone who would like to participate in the planning of this walk to contact us (mattiemiracle@gmail.com).

This evening I was invited out with dinner with Jerry and Nancy. They were two of Mattie's favorite musical volunteers at the Hospital. You may recall they did a "name that tune" game with Mattie that he loved so much. Jerry introduced Nancy and I several months ago to a Washington tradition, the Mighty Mo (a special hamburger) at the Key Bridge Marriott. Each time we get together, we meet at the Marriott, and we seem to pick up right where we left off. Tonight's conversation, as always was stimulating and down right hysterical! In a week that seems very solemn and sad, it was nice to forget my issues for a while and just laugh! Jerry and Nancy are two fine examples of the support system we developed at Georgetown. A support system which we couldn't have lived without during the battle of a lifetime.

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I can only imagine as this Sunday approaches how difficult another holiday and Mattie's birthday will be for you. Both Easter and Birthdays are celebrations of life, promise, and newness. Part of me feels it unfair for Mattie's birthday to fall on Easter this year. And yet, there is another part of me that sees this as a symbol that Mattie has found life again; a life where there is no pain, there is no struggle, where he can giggle and laugh, where he can fly with the butterflies or swoop down to blow a soft breeze through your windchimes. Know that I will be thinking of you this Sunday, as I think of you on every Tuesday, and always... Much love."

The second message is from my friend, Charlie. Charlie wrote, "It is lovely to hear that Mary is looking forward to her shopping trip and to buying new shoes. I agree with you that it is a very good sign that she is adjusting to her new residence and that her spirits are good. I believe many of our senior people suffer from undiagnosed depression, some caused by where they reside or the limits imposed by illness but I believe it is even more than that. I believe much of it is caused by the isolation we force upon them by the living arrangements so many of them have; like the rest of us, they need the energy created by the interaction of those we care about to help sustain us through each day. It is sad that when we most need the support of people we call friends, that seems to be when some of them emotionally move away from us. I am quite amazed at how we Americans are; death is a part of life, no one has ever avoided it for long and yet, it is something that we steadfastly deny in our lives. The only place one sees and hears talk of death is on TV or in the movies and there, death is quick, clean and people move on with their lives. All such a fantasy, as that is not how it is at all. Perhaps that is part of the problem, our "knowledge" is based on that unreality and when our own experience doesn't match up, some of us run away. That's unfortunate in so many ways as we need each other; that's what makes life the wonderful, precious event that it is. I have to say I loved Tamra's email. While Mattie is not here with us physically any longer, his memories, his passions, his joys live on, spread about in places where he had never even tread, shared by people who might or might not have known him. I know this is little, if any, compensation for the loss of his physical being but hopefully it does convince you of the love and support of those who have remained in contact with you. As I practice today, I will send you the energy I find; I hold you gently in my thoughts."

March 29, 2010

Monday, March 29, 2010

Monday, March 29, 2010

Tonight's picture was taken in May of 2005 on our deck. Mattie loved his sandbox. Mattie did not begin his life liking sand. In fact, he was quite intimidated by it until he entered preschool. It was at Resurrection Children's Center that he began to see the fun and the creativity one can have with sand. After that point, you couldn't get Mattie out of a sandbox. Mattie spent many hours on our deck in the fall, spring, and summer building, designing, and enjoying these simple moments in the sand.

Poem of the day: Helpless Still by Shaakiera
Six months, ten days have passed
yet nothing has changed
time has not started since that April day…
Sadness remains
Tears constant
Helpless still…
Days remind me of a roller coaster ride
not one you enjoy…
but the dreaded kind…
where every uncertain second…
so unkind
one day bearable…
the next, a bottomless pit….
falling
Anger overwhelming
Emptiness always
Helpless still…
Alone… is what you prefer
Push and shove everyone that's dear
out of your life…you want no one near
if you don't love anyone…you can't lose anyone
Patience, my answer…
but you won't hear
Your fear suffocating
Can't breathe…
Can't walk…
Can't live…
Helpless still…
Days are awesome …remembering your ANGELS smile…
remembering his antics…
that nearly drove you insane
Days are awesome
as you face lights up with the lost smile that was hidden since that day…
As if not allowed,
suddenly your laughter transforms into a sob…
Heart breaking…
Soul wrenching…
Helpless still…
Sleep does not come easy
Helpless still
Eat…What's eat?
Helpless still...
They say the pain lessens
Who are they?
Helpless still...
Questions unanswered
all the whys you ask…
Helpless still
As you struggle
day by day
hour by hour
I am still here…right beside you…
reminding you …I care…I love you!

Tonight's poem, "Hopeless Still," speaks volumes to me. In particular, two lines within the poem jump right out at me. The first line in question is, "Push and shove everyone that's dear out of your life…you want no one near if you don't love anyone…you can't lose anyone." This is a very accurate statement of thinking and feelings when grieving. Or I should say, when you have survived a child who has died from cancer. Not that Peter and I planned this, but our world of family and friends was definitely narrowed as a result of Mattie's death. I am not sure if this happened because we are protecting ourselves, like the poem implies, or simply the very fact that our world is no longer the same for us. Therefore, it is not surprising that the people who make up our world now may be different. I have no answers, but I do agree with the sentiments expressed. The second line of the poem that is also telling is, "I am still here…right beside you…reminding you …I care…I love you!" Indeed I am blessed to have several people in my life who remind me of this, however, I think when Mattie was alive, it was easier for people to reach out to me, and definitely easier for others to say they were thinking of me or loved me. Now that Mattie is gone, I do not hear these reminders as often. This is not a social commentary on my feelings in any way. However, it is an observation. An observation that I heard from clients over the years. That as time moves one, it appears as if people have moved on, are living their lives, and aren't as concerned or connected with you as when the death just happened. I absorbed these thoughts and feelings over the years when others told me about them, but I can unfortunately say I deeply understand their sentiments now.

When Charlie wrote me her e-mail message today, it got me thinking. Charlie tried to put Mary's caregiver's reaction to Mattie's death in cultural context for me. As you may recall, Mary's caregiver suggested I have another baby, once she heard Mattie died. I completely understand that the caregiver responded in the best possible way she could and it is quite possible that in her culture, infant and child mortality rates may be higher than the USA. Therefore, such occurrences may be more regular to hear about than in our society. I certainly can appreciate that, and cognitively understand this fact. However, I think what this speaks to is the necessity of understanding the cultural context of death for the person you are interacting with. Clearly, we do not all look at death the same way. It is interesting, as a young child, I travelled to Italy during the summers to visit and vacation with our family. There is a city located on the toe of the Italian peninsula called Reggio di Calabria. My father's mother was born and raised in Calabria. Visiting this small city was an eye opener for me as a child. Why? Because the streets were made of cobblestones, donkeys traversed the streets at all hours of the day, there was only running water and electricity available during certain times of the day, and to me everyone was always wearing black. I remember asking my mom and grandmother why everyone was always dressed in black. They explained to me that if a family member died, a person would wear black for over a year. Needless to say this cultural experience made an impression on me, so much so that Charlie's message seemed to trigger my memory of it today. Wearing black in Calabria was clearly a way death was recognized and memorialized. Not a tradition I observed in the United States for the most part, other than wearing black at a funeral. But I have to say these family visits impacted my understanding of how you understand death and honor the person who died.

I received a lovely card in the mail today. It was a 6 month anniversary card of Mattie's death sent to us by all our friends at Georgetown University Hospital. This remembrance and correspondence means a great deal to Peter and I. We grieve the loss of Mattie each day, and in the process also grieve the amazing support team we developed at Georgetown.

I had the opportunity to see Ann today, after her week away. It was fun to hear about her trip and all she accomplished in one week's time. However, as we all know, getting back from a vacation is hard, and when traveling with children, laundry begins to just pile up. So Ann was digging out of piles of laundry today, and in the midst of that, I tried to help out and catch up with her in the process. Mary, Ann's mother, is focused on getting new shoes and going shopping this week, so if the weather cooperates that may be a possibility. But I take that as a very good and healthy sign that Mary wants to go out on such a journey.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am sure that when one of the caregivers said you should have another child it upset you deeply. I know it is hard to take in but different cultures have different ways of dealing with the death of a child. Unfortunately in many cultures, while they do love and cherish their children, they also acknowledge that for children, life is fragile and the death rate is high, so mourning is a way of life for many families, unlike us here in the US. So their view often is one should have many children because it is likely that regardless of how much love you give them, you will lose at least one and perhaps more of them. It is difficult for us to understand but she in no way meant that Mattie as a person could be replaced, only that where she is from, many have the same heartbreak as you do and this is how they cope. I work in a school setting with people from more than 25 countries and this attitude is one I am familiar with as a result. It is amazing and awful that instead of having Mattie's alive, warm person to love and hug and care for, that you have to remember him in pictures and objects and things that he used and cared about. All of us who cared about him and about you grieve in our own ways daily to see you go through this and we each remember and honor him in our own ways. May you find some solace in that. I hold you gently in my thoughts."
 
The second message is from our friend and MMCF board member, Tamra. Tamra's message touched me deeply, and I can't think of a better way to remember Mattie and his birthday on Sunday, than by planting forget me not seeds! Tamra wrote, "The weekend has come to a close with the darkness of the night and the rain that has set in for evening hours. Spring break took us to Florida for a week of training and games for our lacrosse team. A handful of parents made the trip but the days were quite unstructured for us parents - some played golf, others went to the Disney parks, the pool was always a nice respite for reading and the warmth of the sun on one's winter-weary body...The girls played alot of lacrosse at the beautiful ESPN Wide World of Sports fields, which is a part of the Disney properties. They even have a stadium in the ESPN complex - home of the Atlanta Braves spring training. Coach Jenkins has the kids practice and also does a wonderful job of letting them enjoy the adventures at Disney as well as offering them great bonding time as well as building camaraderie and respect for each other. I had some leisure time and read a marvelous book and also took myself to Epcot. It has been many years since I have been to Disney. I was especially keen on going to Epcot because it was garden month and the grounds of Epcot are especially "dolled up" with beautiful plantings, topiaries of Disney Characters...it was a blooming splendor as far as the eye could see...The day I returned alone, I stumbled (literally) upon Tinkerbell's Garden...as I tripped on a stroller that rolled into me. There, ahead of me was a very sweet garden, beckoning all to come inside...so, I parted the little beaded curtain and found myself in a magical spot full of butterflies - topiaries of butterflies, plantings in the shape of butterflies, and real, live, beautiful butterflies. The day was overcast and while I marveled over the butterflies, I suddenly realized that there were gentle, sweet chimes being played by the flutter of the wind. I suddenly felt that Mattie was there...For the past several months, I have had tucked in my wallet one of the delicate butterflies from Mattie's celebration. I planted one by our angel statue in the back yard, but I have kept the other one in my wallet next to a wish ticket...the fragrance of the garden, the beauty of the flowers, the butterflies, tinkerbell, the fairies, the small child's garden tucked into the landscape of this very public and enormous space was a most magical respite...because it felt so full of Mattie...There were a few rain drops falling while I was in Tinkerbell's garden..so, I took my sweet little butterfly from my wallet and tucked it gently in the rich soil of the garden and carefully patted it and smiled..the chimes continued to "sing".. Mattie is everywhere for all of us..he was that kind of boy..loving, unconditionally...and always knew where the fun was...and he was, and is, a catalyst of joy. I have no doubt that the little butterfly seedling is growing..... spring...I think of you both everyday."

March 28, 2010

Sunday, March 28, 2010

Sunday, March 28, 2010

Tonight's picture was taken in May of 2005, at a park that had a walking path along the Chesapeake River. Mattie loved the water, and he also loved walking outside along nature trails. Each weekend in the spring and summer, we would walk and explore as a family. Over time, we began to know about some wonderful places to visit and walk. We miss our walking buddy and the energy he brought to these experiences. As adults our minds are closed off to many possibilities, but seeing things through the eyes of a child is a special gift. Sometimes you do not realize how much it is until you don't have it.

Poem of the day: When the crabapple blooms by Roland Cavanaugh

When the crabapple blooms, I will remember you,
remember the pain that you felt.
When its dark blooms appear, my thoughts turn to you,
thoughts of suffering that make my heart melt.
The plant was a gift from good, loving friends,
who stood close at hand in my pain.
In their kind, loving words, they suggested to me,
that this tree would live on in your name.
When the crabapple blooms, I will remember you,
remember the pain that you felt.
When its dark blooms appear, my thoughts turn to you,
thoughts of suffering that make my heart melt.
The day it was planted, by the strength of my hand,
I watered it freely with tears.
as each drop of sorrow fell onto its roots,
my heart was relieved of its fears.
When the crabapple blooms, I will remember you,
remember the pain that you felt.
When its dark blooms appear, my thoughts turn to you,
thoughts of suffering that make my heart melt.
The prayer that I prayed, as I covered that mound,
was that the young sapling might live.
I still cry out to God, in a daily report,
“May it have all of the strength you can give.”
When the crabapple blooms, I will remember you,
remember the pain that you felt.
When its dark blooms appear, my thoughts turn to you,
thoughts of suffering that make my heart melt.
While the blooms they remind me that things go on living,
and that life yet comes through when we die.
Still their pedals bring sadness and cause me to ponder,
the reason for the tears that I cry.
When the crabapple blooms, I will remember you,
remember the pain that you felt.
When its dark blooms appear, my thoughts turn to you,
thoughts of suffering that make my heart melt.
The flowers bring beauty to the eye of the beholder,
the fruit provides food for the birds.
The branches give shelter from the threatening weather,
and offer comfort like well-spoken words.
When the crabapple blooms, I will remember you,
remember the pain that you felt.
When its dark blooms appear, my thoughts turn to you,
thoughts of suffering that make my heart melt.
As the crabapple grows, gaining strength and endurance,
a symbol of health it will be.
When the birds leave its branches, and soar to the heavens,
it reminds me that you are now free.
When the crabapple blooms, I will remember you,
remember the pain that you felt.
When its dark blooms appear, my thoughts turn to you,
thoughts of suffering that make my heart melt.


"When the crabapple blooms" is a powerful poem. It is a powerful poem for anyone who has lost someone close to them and who desperately wants to remember that person. The crabapple tree, like any flowering tree, seems to illustrate the delicate balance of life and death. It is a very touching way to memorialize someone, and as Charlie points out in her e-mail to me tonight, Mattie's school is doing just that. Some time in May, a tree will be planted on Mattie's lower school campus. I am deeply touched by this beautiful gesture from the second grade parents and the school.

There are some days where I can't believe I have to even think in these terms. That I no longer have Mattie in my life, that we lost the cancer battle, and that I need to cling to objects and symbols to remember him. Today, while driving in the car, I was hit with the vision of Mattie dying in the PICU. A night and morning I will never forget. It remains with me always, and when I stop to think about it, I can't imagine how cruel the world is to allow a seven year old to suffer in such an intense manner. Fortunately in the end thanks to Dr. Shad and our Angel of Mercy, Sarah Marshall, Mattie was sedated so intensely that he most likely wasn't in pain. But no one should experience this much pain, especially a child, and no parent should have to witness such cruel and unusual punishment.

Peter and I went out to lunch and chatted about all sorts of things today. We both feel under the weather, so together we are a sight. Later in the day I went to visit Mary. Mary thought she would see Ann tonight, or at least this is what she was hoping. However, I explained to Mary again that Ann would be flying home tonight, but would see her on Monday. Everyone in the assisted living facility knows that "the Ann countdown" is zero days until her arrival. What I love about this facility, is that they value family, and understand how Mary's feels, and instead of dismissing her feelings, they empathize and reassure her. While I was sitting with Mary at dinner tonight, we had the opportunity to get to know one of the caregivers better. She was telling us that her husband and 10 year old son are living in the Philippians. She is here on a work visa to raise money for her family. She said she saw her son three years ago. I was stunned, and Mary was listening to this interchange. At which point, Mary turns to me and tried to put a positive spin on my life. She told the caregiver that I was rich. The caregiver took that to mean that I was wealthy. I told her I had a feeling Mary wasn't implying this. Indeed I was right. Mary wanted me to feel a sense of satisfaction that I was with Mattie for seven years, during every step of his developmental process, unlike the woman in front of me. The caregiver looked confused, so I told her about Mattie and that he died from cancer. She was very surprised. I am sure she meant well, but her second question to me was.... have you considered having another baby?! That question took me back a bit, especially since I do not know her that well. My only reaction to that question, which I did not express, was anger. Anger because you can't replace one child with another. It doesn't work that way, or it doesn't work that way for me at all. She then continued to tell me that her mother had a baby when she was older than I was, and therefore should consider it. I was polite through this dialogue, but wondered if it were possible for her to really understand the depths of what I am dealing with or what I dealt with. I know her comments were good intentioned and I am able to step back and understand that logically, but emotionally I am in a different place.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "When I saw this poem, I thought of the tree that will be planted on the grounds of the school and hoped that it might give you some sense of healing as it grows and matures. It seems like you could use something positive to focus on right now. After several different dream dictionaries and a number of different searches, I think I may have some idea of what is happening but of course only you will really know if the answer resonates true for you or not. Dreams about the past are very common. They can be attempts by the subconscious to review, remember, explore your deeper feelings about, or make sense of past events. They can also be part of the process of reconciling the past within yourself, including grieving, reaching closure, forgiving, coming to terms, letting go of, or reaching inner peace with your past. Since you already had one disturbing dream about a terminal illness and this is the second one, it may be that your subconscious thinks that when the doctors disagreed on how to treat Mattie, if you had made some other decision, the result might have been different. Mattie's death is awful, to have to face life without your son so unthinkable that your mind has decided to try to "second guess" the process and search for any other outcome. Of course this is not possible but we can't control how we feel, only how we act on those feelings. This whole thing has to be horrible for you; you really know you did your best for Mattie; the solution simply is not available now or in the foreseeable future but somehow things continue to replay when you are sleeping. Today as I practice, the intention will be that when you sleep, the dreams bring you if not healing, at least to a place of good memories. I hold you gently in my thoughts."
 
 
The second message is from my friend and colleague, Denise. I hope Denise is right, that by sharing my experiences with all of you, that I am indeed keeping Mattie's spirit and memory alive. Denise wrote, "Each morning I read your blog and send you and Peter prayers and thoughts for strength to support you through your day. This week you wrote a bit about your time at GW. I taught a class for Carrie on adolescent substance abuse and its connection with trauma in reference to assessment, evaluation and treatment this Tuesday evening. It was very nice to see Carrie and her class, however I missed seeing you and missed seeing you interact with your students. I marvel at how you continue with your role as an educator through the entire process of Mattie's illness and treatment and your journey as you grieve the loss of Mattie. You have educated and touched so many people about so many topics. I smile when I read the information you provide to us about places you all have been, as well as all the information you told us about on your cruise. The educator in you is always there, wanting to share with your students. My heart tells me that Mattie is very proud of you and it is through the education and the sharing of your experience that Mattie will continue to live in the hearts and minds of those who love him, as well as you and Peter. As Charlie says daily and I echo her prayer daily, I hold you gently in my heart and in my thoughts."