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

July 24, 2010

Saturday, July 24, 2010

Saturday, July 24, 2010

Tonight's picture was taken the week that Mattie was diagnosed with osteosarcoma. This boat floating in our tub, was the first project Mattie undertook with Jenny and Jessie (his art therapists) at the Georgetown University Hospital. Jenny, Jessie, and Linda were God sents, because thanks to the three of them, Mattie never refused to go to the Hospital. They made our cancer nightmare more palatable for Mattie. Though I no longer have this particular boat, I do have two of the last boats Mattie created in clinic with his big buddies Brandon and Jocelyn in our living room.


Poem of the day: Evermore by Charlie Brown
Sometimes I don't know what I feel
In fact, your death seems hardly real
I still expect you to run through that door
And tell me you love me evermore.
I hear echoes of your play
They're background music everyday
They are a little out of tune
Like a tape that stopped much too soon.
I feel you in so many places
In nature, and in your friends' faces
But as for the one I most want to see
That one is denied to me.
Son, I will miss you ever more
Until we meet again at heaven's door.

Peter and I woke up to the excitement of reading the front page of the Metro Section of the Washington Post. As I felt in my heart of hearts, I knew Rick Rojas (a Washington Post Reporter) would do a wonderful job capturing our story. He devoted a great amount of time getting to know us through extensive interviews, spent many hours with us on Capitol Hill, as we lobbied for funding for pediatric cancer, and perhaps it is a mother's intuition, but I felt Rick tried hard to understand our loss and what has compelled us to start the Mattie Miracle Cancer Foundation. We posted the link to this article at the top of the blog, and what I loved about the on line version, was there were additional pictures featuring Mattie's artwork from Legos to paintings.

As the morning was unfolding, we received many wonderful e-mails from people who know us as well as people being introduced to our story for the first time. We heard from a lovely individual all the way from Pakistan! What also caught my attention, were two women who wrote to us today who are graduates of Union College (where Peter and I went for our undergraduate degrees). Both of these women found their husbands at Union College, which provided an instant commonality among us. One woman mentioned that she is now an oncologist in St. Louis and is reaching out to connect more with our Foundation. I have been deeply, deeply touched by the outpouring of responses we are receiving. Somehow hearing that our story has touched the hearts of even complete strangers means something to me. Peter and I live with the aftermath of cancer everyday, but to hear how our story brought tears to your eyes today, and makes you reflect on the travesty of a beautiful child dying, makes me feel understood. That is SO important when grieving. This article and hearing from so many thoughtful and sensitive people today was a beautiful birthday gift. It doesn't replace Mattie in any way, but it does confirm to me that Mattie lives on.

As I was waiting for Ann and her family to arrive, I was sitting outside on Ellen's deck with Peter. Her neighbor, Jim, was outside as well, and watering his plants. We started chatting with each other and Jim said to me, "I know you." In fact he said, "I saw you in the Washington Post this morning." We all laughed at that and he said that the photographer did a great job, because we look just like our picture. This may sound like a funny dialogue, but Jim was actually very supportive and I really appreciated his openness and willingness to acknowledge us and our story. We even heard from Dr. Aziza Shad (the director of the Pediatric Lombardi Center) tonight and she said that everyone acknowledged her at the party she attended tonight, and in fact attendees began giving her contributions toward the Foundation. For all our readers today, who generously made a contribution, we sincerely thank you.

As Ann has watched me struggle to put thoughts tonight toward the blog, she sat right next to me. In a way, it reminded me of what my mom would do sometimes when I was in high school, and struggling to put my thoughts together. So together, here is what we came up with:  Today on the eve of my birthday I spent a day trying to relax at the beach. Keyword, trying! I was kicked out of the kitchen as they prepared dinner. Before having dinner, we all headed to the beach. Because of record breaking temperatures today, it was impossible to go to the beach during the earlier afternoon.We did spend a few hours in the rough surf, catching crabs (Abigail called the little crab she found, "Phil"), playing catch and getting knocked around by the crazy and wild surf.

When we got back from the beach, I was sent directly to the hammock to read while dinner and my surprise were prepared for me. While Ann was fixing dinner, Abbie and Michael were serving me all sorts of appetizers and drinks. Abbie even set a lovely table, complete with butterfly folded napkins. We all ate outside in the heat. Everyone braved the heat for me! For dessert, we had a delicious cake decorated with fake bugs. As I was blowing out the candles, Abigail had me look at the top of the cake. At the top, sat three marshmellow people. One representing, Peter, one representing me, and the third representing Mattie. This third little person had a gummy worm halo over his head, signifying Mattie in heaven. 

Tonight, before Abbie and Michael went to bed, they both came out on the deck and sat next to me. They watched me pull out my computer and were interested in seeing what I was going to do next. I pulled up Mattie's blog. Naturally this is not something a child reads on a regular basis, but they both know of the blog. I mentioned that each night I put a poem on the blog, and this caught their attention.  They read Charilie's poem as well as a few emails I received today and genuinely seemed to care about what people were saying to me - and seemed to understand the importance of remembering Mattie in the blog.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am so glad you are away this weekend. These days that so directly linked back to the beginning of the nightmare of Mattie's cancer that it must be so difficult to deal with. I am glad you are in a place that is peaceful and you are surrounded by people who care about you and understand your need to be alone at times. That's so important. I am glad you had in balance a day with more positive than negative in it yesterday; a walk along the beach, a Mattie moon, a good dinner and more. I know that Ann is joining you on Saturday and I hope that visit goes well. We finished up our three day workshop today and many things struck chords for me but one I want to share is this statement that a griever made. You don't "move on" you "carry on" as best you can. Our closing ceremony was a Peruvian ceremony of caring, remembrance and healing; we all got to pray over our herbs that would be transformed by fire into smoke carried to the spirit above. I had you, Peter and Mattie in my thoughts, that Mattie would know how much you love and miss him and that you would know he was well and whole. I hold you gently in my thoughts."

July 23, 2010

Friday, July 23, 2010

Friday, July 23, 2010

Tonight's picture was taken on July 23, 2008. I know some of you may be quite familiar with this picture since I have posted it before. Peter and I were basically shell shocked on that day, the day we learned that Mattie had osteosarcoma. I took Mattie to the pediatrician on July 23, 2008, because he was complaining that his right arm hurt from tennis camp. His range of motion was affected, and he couldn't lift his arm up over his head. I assumed he injured himself in camp. I realized it was something somewhat significant because of the pain and his limited mobility, but I had no idea the x-ray was going to show a huge tumor in Mattie's right arm. I should be thankful the pediatrician's office was thorough, or at least was willing to placate me and have an x-ray taken. Mattie had no other major symptoms like a fever or swelling. Or at least NOT the kind of swelling a pediatrician would be skilled enough to flag. To an oncologist, the swelling in Mattie's arm was quite apparent.  

Poem of the day: Visiting by Charlie Brown

I keep moving
I keep breathing
But somehow I think
Life goes on without me.
Sometimes I am a sleepwalker
Marching through, untouched
By the daily rhythm that
Other people hear.
Instead I am tuned into
My son's sight and sounds,
And how he felt
And that is all inside.
So when you see me
Far away in thought
I haven't gone far
Just within.
I've gone visiting
The one I can no longer visit
Except in memory
Join me?

July 23 is a hard and complicated day for us. I remember July 23, 2008, like it were yesterday. On that day, I innocently took Mattie to the pediatrician, expecting to hear that he sprained his arm somehow. While the pediatrician was examining him, she told me that at the very least Mattie may need physical therapy to help him regain his mobility. When she told me that, I was taken aback and had issues with that assessment. When I heard the reality of the situation, I wished that I could go back to the initial diagnosis that included just physical therapy. Cancer has a way of putting other things into perspective quickly. I recall helping Mattie jump up on the x-ray machine, so that the technician could scan his arm. I watched the whole process behind a glass window. I was beginning to get annoyed internally with the technician because he kept taking more and more pictures. Being naive, I just thought he did not take accurate pictures, and the issue was with the tech and NOT with Mattie. From that moment on, I learned a great deal about radiology techs, and then with my 15 month cancer battle at Georgetown University Hospital, I became VERY astute at reading their reactions and demeanor throughout the filming process. I wish I did not have ever had to receive such an education.

I recall in August of 2009, when we learned Mattie's cancer spread everywhere, that I read the tech person's thoughts and feelings beautifully on that day! I had Mattie get a sonogram because I was concerned of his reported stomach pain. Naturally no one thought it was possible that so soon after treatment Mattie would relapse. He had only completed treatment six weeks prior! While Mattie was getting the sonogram, the tech asked me why Mattie was originally admitted to the hospital. I knew that was the kiss of death. He saw something in the sonogram, which prompted the question. So I knew the cancer was back before hearing the actual news.

Peter and I set out on our road trip to Bethany Beach at around 10:30am. We hit some traffic, but it was an adventure for us. The funny part about this is Peter asked me if the roads looked familiar to me, considering I traveled them with Ann a few weeks ago. Naturally Peter knew the answer would be NO! I am directionally challenged and the roads to the Eastern Shore are lined with trees and farms. I need landmarks! Without landmarks, I am hopelessly lost. I recognized places along the way that Ann stopped at during our previous trip. Peter just laughed because I recall directions based on gas station locations, restaurants, and stores. A real city girl, I suppose. On my car journey, I kept Ann posted on the landmarks I was passing, which reminded me of our previous trip! Our friends Carolyn and Mary also kept track of us today, and both of them were hoping that I would find a way to relax as the day progressed. Relaxing, I admit, no longer comes easily to me. I blame that on living in a hyper alert state for so many months.

Peter and I stopped at a farmer's stand along our journey into Bethany Beach. Tonight, I cooked fresh fish, corn, and had an amazing tomato salad. Food tastes very different when it is this fresh, in fact I do not think I ever tasted corn as tender and sweet as what came from this farm today. Peter and I are enjoying our time at Ellen's house and before dinner we went out looking for bunnies. Ellen reminded me that bunnies come out in her neighborhood around 6pm. It was hot as blazes out, but we still went for a walk. I am happy to say we saw one bunny along our journey, and then we sat along the beach and watched the people and the waves. Peter and I had fun watching one particular family, because we were trying to figure out who was related to who, and the dynamics between each of the members. This may not sound relaxing to some of you, but I enjoy observing people, and I also loved watching this little girl learn to fly a kite.

While we were having dinner outside, in maybe 98 degree temperatures, Peter told me to turn around. What was over my shoulders, up in the sky? But a beautiful Mattie Moon! I have had my moments today, and just when you don't expect me to, I will cry. As Peter can attest to over lunch! We weren't even talking about Mattie, I simply just started crying. Peter asked me to take a break while writing the blog tonight, and we sat outside staring at the moon. Peter tells me there will be a full moon on my birthday, and as Peter says, "Mattie will be shining brightly on that night for his mama!"

I received a beautiful e-mail today from Lana, one of Mattie's preschool teachers. Lana was and continues to be very supportive of Peter and I. Lana's son is in the Navy, and when she read in last night's blog that the VP-26 tridents were raising money for Mattie this year, she stopped in her tracks. This turns out to be the same squadron her son is in! In fact, her son and Palen's (Whitney's sister) husband are friends! I continue to be in awe of how small our world is, or at least how Mattie is connecting us with so many people in our lives. The irony is the VP-26 tridents were supportive of us when Mattie was sick. They sent Mattie a signed Blue Angels poster and even gave us Navy patches! It seems noteworthy that this squadron continues to support us even after Mattie is gone.

As we head into Saturday, Ann and her family are driving to Bethany Beach to spend Saturday with us. Ann and her daughter, Abbie, and I are going to cook dinner together and celebrate my birthday. Though they are only staying one night with us, I am very appreciative of the fact that they are making the trip to be with us. Ann and I have known each other technically since 2005, when Mattie entered preschool. However, our deep friendship was created on that ominous diagnosis day of July 23, 2008. Cancer united us together, and though Mattie is no longer physically with us, I credit him for bringing Ann and I together. Mattie loved Ann, he loved her energy and he loved her creative hands on projects. I shall never forget the times Mattie had with Ann, and those moments will remain in my mind and heart forever.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "First, I am so glad you got out of jury duty. It is difficult enough to stay focused on a court case but with grief riding shotgun and the number of triggers available to set things off, it is not a positive picture right now. I know you and that you would give it all you have if you were selected, but I am glad you don't have to do it right now. The news about the Officers Spouses Club selecting Mattie's Miracle Foundation as the charity they want to raise funds for is amazing. That's fantastic. Once again, ripples in the pond and no way of telling where they will end. Along with the funds (always welcome), comes the opportunity to educate a whole new group of people who in turn, have access to others. I suspect that it will eventually make its way to someone who Needs to know about the foundation and Mattie's story. It is really nice of Ellen to afford you the opportunity to get away with Peter; I hope that you have a safe, easy and uneventful ride out to the beach and that you find the experience to be relaxing. I know Charlotte misses Mattie and I am sure she is happy that you continue to be in touch with her. I bet she will treasure that snow globe; what a lovely gift to bring to her. It was another challenging day in conference, particularly for those, who like me, are military linked as the whole day was centered around military grief and survivors. As always I learned a lot and shed some tears. As we finish up our conference tomorrow I will be thinking of you and Peter; the closing ceremonies for these conferences are always special and Mattie is always in the forefront of my thoughts when I am asked to bring to mind someone who I care about who has died and who we might wish to dedicate our ceremony to. As always, I hold you gently in my thoughts."

The second message is from our friend and Mattie's preschool teacher, Lana. I appreciated Lana sharing the thoughts below from Henry's mom. I relate to what Henry's mom has written, and in a way in helps to know that Peter and I are not alone in our thoughts and feelings. Lana wrote, "I've been thinking of you a lot recently. First I do have to share my "small world" story...I was reading last night's blog entry and thought hmmm, isn't VP-26 Sean's (my son) squadron?? So, I just texted my daughter in law and yes it is!! How crazy is that!! In fact I'm trying to figure out if the patches Sean gave me for Mattie were from VP-26? I told Jen that they have to make sure they attend the auction and donate!!

Now ...why and how you've been on my mind. For one I happened onto a blog, that I have occasionally read and knew of because the author has written on parenting issues. Last week, I discovered that her 18 year old son had died of a beating and drug overdose. A horrible event that was painful to read, but I thought of you with some of her feelings of losing a child...

So here we are in Mid-July. Henry is no longer battling for his life in the hospital; he’s gone. The memorial services and condolence cards have faded away. The surreal, fuzzy first days of having a child die have now passed. Life has begun getting back to normal for everyone who loved Henry, and for the many people who supported our family and took such amazing care of us during Henry’s hospitalization and in the immediate days after his death. Now, nearly two months after he left us, Henry isn’t the only or even the first thing people talk about when they talk to me. They are – as they should – getting back to normal.


I understand all of this and appreciate it. Life goes on. It has to. Henry has siblings who need to move forward, and Jon and I have responsibilities and jobs and a new baby who needs our full attention.


And yet…and yet…

For me, there is no sense of moving on. Instead, there is often a sense of everything and everyone moving on without me, ahead of me or around me, while I stand in place with empty arms that long to hold my son. I am his mother. I have been his mother since I was 23 years old, I don’t know how to be anything else. Henry is the first thing I think about when I open my eyes in the morning and the last thing I think about when I drift off to sleep each night.


The day he died, when his father and I held him close as he struggled to let go. I did my best to assure him that it was okay to go, but every fiber of my being longed to scream “No, sweetheart, don’t go! Please stay. I need you and I love you. Please don’t go!”

I haven’t yet been able to go through the things he left behind, which are mostly all packed up since he had moved out of our house. There are boxes and bags to open some day, full of books and t-shirts that will smell just like Henry. I also haven’t yet been able to bring his ashes home. I don’t know when I will be able to face that. A family member is keeping them for his father and me until we feel ready.


Others will move on and remember Henry with a sense of peace and closure. As for me, his mama, the wound remains acutely fresh – my child just died. I walk around with a hole in my heart. I feel many years older and even when I’m smiling or talking about something trivial, my heart is swollen with grief that I suspect will never really go away.

This mother has also had much support from her "online" community. As I read your entries each day, I always stop and reflect on losing one of my children...and I just cannot imagine it...the pain is just more than I can fathom. I think because my kids have recently gone through many new "life stages" (Erin's semester abroad, Evan purchasing a condo and getting engaged, Sean and Jen talking of starting a family) and I think of you and Peter and my heart just breaks. You are and have always been awesome parents and now you continue to educate, support and advocate for ALL children and families. Mattie's spirit lives on through you two each and every day. Please know how many of us are so grateful to you. Here's wishing you a wonderful, peaceful weekend at the beach....by any ocean is my favorite place in the world!"

July 22, 2010

Thursday, July 22, 2010

Thursday, July 22, 2010

Tonight's picture was taken on July 25, 2009, my birthday. This was my last birthday with Mattie. Mattie created me this beautiful lighthouse birthday card, with the help of my in-laws. Mattie knew how much I love lighthouses, and this special card is something that I cherish. Along with many other priceless items, this card sits in my living room. If you look in the background of this picture, you can see Mattie's Lego Taj Mahal in the upper right hand corner. Needless to say, it hasn't moved much since Mattie created it. As I look at tonight's picture, I think it is quite evident that Mattie and I looked very much alike, and in so many ways when Mattie died, a part of me died too. I can't believe this beautiful face is no longer in my life and I will be unable to receive a wonderful Mattie hug this year.

Poem of the day: I've missed you.

A million times I've missed you, a million times I've cried.
If love alone could have saved you, you never would have died.
To some you are forgotten, to others just part of the past;
but to me who loved and lost you, your love will always last.
It broke my heart to lose you, you didn't go alone,
for my life went with you -sweetheart- the day angels called you home.
For things on earth didn't matter, but now I feel so alone,
My heart will always be broken, my life will never be whole.
We might be parted for awhile, our hearts will always be together
for one day soon we will hold hands again forever.


My day began with reporting to jury duty. In all reality, I most likely should have rescheduled this service date, because there was the possibility that I could be called back on friday if I was empanelled on a trial today. Peter and I are very much looking forward to going to the beach tomorrow, so jury duty was really not high on my list. However, I decided to take a chance and navigate through the system. Since we report to jury duty every two years, Peter and I have had quite a lot of practice working through the DC jury system. This was the first time I was asked to report in at 10:30am, rather than 8:30am. Unlike Peter, I have never attended jury duty and been dismissed from service for the day. When I got there at 10:30am, I had the opportunity to talk to several jurors who had been waiting around since 8:30am. These were NOT happy folks. While I was waiting in the jurors lounge, I thankfully could use my blackberry. In fact, my friend Carolyn emailed me and told me that when she did jury duty in Virginia, they had jurors shut off all cell phones even while waiting. I told Carolyn if they asked me to do this, I would need a sedative. You can take a lot away from me, but not my blackberry. We all have our vices, the blackberry became mine in July of 2008. However, I don't view it as a vice per se. To me it is virtual support group, that I can take with me wherever I go.

I thank SO many of you who e-mailed me today, you helped to keep my mind busy while I was sitting through this process. At 1:15pm, I had the good fortune of being dismissed from service, and it really was a close call, since they called three large sets of groups from the jury pool during the morning! By 1pm, people around me were getting tired, frustrated, and hungry. Particularly since the lunch break wasn't until after 1pm. However, once our group was dismissed, I noticed an IMMEDIATE change in attitude with everyone around me. It was like we all won the lottery, it was that feeling of elation that fascinated me. I joked with the woman at the jury office, and told her I will see her in two years. She laughed, because she admitted that is true. I told her instead of sending me a jury summons, they should just send me a jury anniversary card!

While sitting near the jurors lounge, I called Whitney's (one of Mattie's favorite childlife interns) sister, Palen. Whitney e-mailed me last night and she told me that her sister wanted to share some excellent news with me today. Whitney wouldn't give me a hint, so when I had a free moment today, I made the phone call. Palen lives in Florida now and is married to a US Navy officer, who belongs to the VP 26 Tridents Squadron. Palen is VERY familiar with Mattie's story, and attended both The March for a Mattie Miracle in 2009 and the Mattie Miracle Cancer Foundation Walk in 2010. Palen has been elected to serve as the Vice President of the VP 26 Tridents Officers Spouses Club, and one of the activities the Club is undertaking this year is a service auction. The Club solicited feedback from its members regarding the charity the group wanted to raise money for this year. Palen told me that the group was deciding among three finalists. One of which was the Mattie Miracle Cancer Foundation. Palen clearly represented our Foundation in a very passionate way, and the group decided that this year's funds from the auction will go directly to our Foundation. I was thrilled and so honored to receive this news, and as I told Palen it is awe inspiring how women who never met us are so committed to our story as well as dedicated to helping other children and their families battle cancer. But Palen made a very astute comment, many of these officers' wives have children or want to have children, and they know how devastated they would feel if they found out their child had cancer. A remarkable group of women! I told Palen, we already love her sister, and now we love her as well for her compassion and advocacy for this vital cause, and for helping us keep Mattie's memory alive. Stay tuned for more details about this exciting event!

When I got home this afternoon, I decided to put Patches' (our cat) carrying case together so that I could transport her to the vet to be boarded this weekend. For some reason I have the darnest time putting this carrying case together, and watching me assemble it, could be a comedy show in and of itself. Mind you I have to lock myself up behind two closed doors so Patches doesn't hear me assembling this case. Because if she senses this, she will hide in the house and it will be very challenging to get her out. Once the case was assembled, I had to track Patches down. She was downstairs, and as soon as I went to try to pick her up, she bolted. I literally ran from one room to the other, and just when she was about to dive under Mattie's bed, I grabbed her. It wasn't pretty but the mission was accomplished. As soon as she enters the vet though, she calms down. She spent so much time at this vet while Mattie was sick, that it really is her second home, and she is VERY comfortable there.

Later this afternoon, I visited with Ann briefly and then headed over to Ellen's house. Ellen is Charlotte's mom, and many of my faithful readers know that Mattie was very fond of Charlotte. In fact, they were talking marriage, which always made Ellen and I chuckle. Mattie and Charlotte had a special bond, he knew how to make her laugh and would always try to stand up for her if he thought he needed to, and Charlotte in return laughed a contagious laugh at all of Mattie's jokes and was a loyal friend. I met with Ellen today so that she could give me the key to her beach house. Peter and I feel very fortunate to be able to use Ellen's house twice this summer, and this gift provides us a much needed break from our daily living environment. Ellen and I chatted about many things, and when Charlotte was done with her piano lesson, we had a chance to chat as well. Charlotte's piano teacher is Rebecca. Rebecca and her husband are music teachers at Mattie's school, and Mattie's teacher was Rebecca's husband. At the end of Mattie's kindergarten year, he gave all his teachers a gift. The gift consisted of a painted clay pot for each teacher and I helped him plant a vinca in each one. Some of you may remember that Rebecca sent me a picture of this vinca several months ago. Vincas are usually annuals, but some how this vinca has decided to be a perennial. Rebecca told me Mattie's vinca is growing strong in her garden, and I told her that Mattie is clearly with her family.

As many of you know, Ellen gave Peter and I tickets to see Mary Poppins. That evening, I bought Charlotte two gifts from the show. Today, I had the pleasure of watching her open them. Naturally I raised a little boy, but when I picked the gifts I tried to remember what I would have liked when I was a little girl. One of the gifts was a musical snowglobe, with a figurine of Mary Poppins in the center. There is something very magical about a snowglobe and to hear the music twinkle away, while the snow is falling seems special. I was happy to see that Charlotte thought so as well. There is something about being in Charlotte's presence that reminds me of Mattie. Charlotte showed me a Ranger Rick magazine today that she was reading and we looked at the animals together and talked about them. Something Mattie would have most definitely done as well!

Peter and I are basically packed and will leave on our journey Friday, after rush hour. I am naturally bringing a laptop to the beach, so you will be hearing from me while we are away. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I just find it almost incomprehensible that Mattie was diagnosed only two years ago and yet September will see us at a year since his death. I just can't fathom it. I know that you were pleased to have the chance to see Mary (the RCC mom); it is lovely when friendships forged in the heat of battle (that's how I think of cancer, as a full out war) survive and grow afterward. I know that Ann's mom, Mary, was glad to have Ann back but I am sure Mary was pleased to have you there as well. You have become very much an important part of her life. I do hope you can do your jury duty in one day and take off and get away to the beach for the weekend. I am sure you and Peter can use some time away. I am in a grief and loss conference for three days and today was all about helping children process loss. I heard what was said about including children as mourners when someone they are close to dies and I thought about how you put so much effort into finding meaningful ways to include Mattie's friends in his memorial service and how much that meant to them. I am thinking of you constantly during this seminar and hoping that some of what I glean from it will be helpful to you or someone that I do grief counseling with. I hold you gently in my thoughts."

July 21, 2010

Wednesday, July 21, 2010

Wednesday, July 21, 2010

Tonight's picture was taken in May of 2005. Mattie was three years old. The irony is Peter and I sat on this exact bench this past weekend. This bench is at the DC Aquatic Gardens. Mattie was a fellow in constant motion. As you can see from this picture, if I wasn't holding him, he most likely would have flown right out of my arms. Mattie loved exploring the DC Aquatic Gardens, and he was successful at spotting all sorts of creatures there such as Great Blue Herons, ducks, snakes, frogs, turtles, and even a beaver. This weekend, Peter was reflecting on my love of nature, and was thinking through when this love developed. He is correct, I wasn't always like this. I appreciated my green spaces, but now I don't only appreciate them, I seek them out and they give me some sort of peace. I do think having an active little boy in my life, got me outside more, and since Mattie took to walking and spotting things in nature, I suppose I developed this love over my years of raising Mattie. Though Mattie is no longer in my life, the gift of nature, which we found together remains.

Poem of the day: Lifestream by Charlie Brown
Another Tuesday comes
And I mark another week
Sometimes sadness overwhelms me
And I can hardly speak
Individual moments pass slowly
Yet the days are a swiftly running stream
Time is like a watercourse
Seen through the filter of a dream
So much of it is hazy
And if you asked me to recall
I'd have trouble telling you
What filled my days at all
What seems to stand as rocks
And boulders in this stream
Are the memories and thoughts of you
When we faced life like a team
We were mother and son together
Facing the many challenges of life
But our connection is now severed
By a disease that cuts like a knife
So what will be my touchstones
Those things I want to do
Now that my life's work as your mom
While just started, is now through.

As this week approaches the anniversary dates that Mattie was diagnosed with cancer, I find that this brings about great sadness. Mattie was initially diagnosed with osteosarcoma on July 23, 2008 at Virginia Hospital Center. This diagnosis was confirmed by Dr. Bob on that night at his house, and then Bob connected us with Georgetown University Hospital. Mattie was then officially diagnosed with osteosarcoma on July 25, 2008, my birthday. The anniversary of a diagnosis is troublesome enough, but when mingled with a birthday, it seems like a very bad combination. As I reflect on Mattie's loss tonight, I couldn't help but think of a song I sang to Mattie often. It was a Helen Reddy song entitled, You and Me Against the World. I attached a link to it below in case you are not familiar with it. In the chorus of the song, she sings:

And when one of us is gone
And one of us is left to carry on
Then remembering will have to do
Our memories alone will get us through
Think about the days of me and you
Of you and me against the world

When I would sing this song to Mattie, I never thought it was going to be me who would have to rely on memories of our bond together to get me through. This thought NEVER crossed my mind. Instead I sang this song to Mattie, because he and I dealt with many challenges together. The challenges of being a late walker, talker, and a biter, to name a few. Despite all the negativity and feedback I received about Mattie early on in his life, I saw the true beauty and character underneath his rough exterior. Which is why Helen Reddy's song spoke to our relationship.

You and Me Against the World by Helen Reddy
http://www.youtube.com/watch?v=gJAKmWAIKcY

I began my day with meeting my friend, Mary for tea. Not Ann's mom, Mary, but a fellow Resurrection Children's Center mom. Mary and her family were very supportive of us during Mattie's battle with cancer. They provided us with meals, toys, and visits in the hospital. In fact, during Christmas of 2008, Mary gave me two lovely red square plates. I still have these plates, and use them often. They remind me of the generosity of friendship. Mary and I had a delightful conversation, and in a way, I feel as if I am learning about people in my life in a whole new way. Naturally it was hard to really connect with anyone when caring for Mattie in the hospital. But the one thing I have learned from cancer, is the importance of making the time to connect with the people who were there for us in incredible ways. So Mary started my day off on the right note.

This afternoon met up with Ann. She had a busy day with her children by the pool. Though Ann was running around in this heat supervising her children and their friends, I instead sat in one place and continued to read my book. Normally I would participate with Ann, but today, I just did not feel like I could emotionally do that. The beauty of Ann, is that she doesn't seem to mind when I have to step back, nor does she expect me to be a certain way on any given day. I continue to be glued to My Sister's Keeper. There were so many things written on these pages that I read today, that absolutely brought me back in time. A time when I couldn't think of anything else in my life other than cancer. When a 24 hour a day clock meant absolutely nothing to me, a time when I heard and was surrounded by pain, nausea, and toxic chemicals, and a time when talking about anything other than treatment, survival, and surgeries were irrelevant. Reading this book, in essence is therapeutic in its own right, because it hones in on the depths of family crisis, disturbance, and the desperation a parent has when facing the pending death of a child.

Toward the evening, I went with Ann and her daughter, Abigail, to visit Mary (Ann's mom). On the car ride there, Ann's phone rang. It was her older daughter, Katie, who called. Katie is at sleep away camp this week, and she called to say hello to her mom. Ann was clearly happy to connect with her daughter, and this was evident because she pulled her car over to the side of the road to talk to Katie. This may not sound unusual to my readers, but Ann is a multitasker, so driving and talking on the phone comes naturally to her. But when she pulled over to talk to Katie, this caught my attention. In fact, it was actually a very loving act, because her simple gesture showed me that this connection today was important to her, and she did not want to focus on anything else other than what Katie had to say. I tried to imagine myself in Ann's position today, talking to Mattie on the phone. I could sense Ann's excitement and at the same time I could also understand how she missed having her daughter around. I understand all too well how the absence of your child leaves a hole in your heart. A hole for Ann which probably won't be filled until Katie returns.

I have been called to jury duty in DC on thursday. This is a process I am VERY familiar with. If you live in the District of Columbia, then you know that you are called to this service EVERY two years. Without fail! Peter was summoned to a grand jury trial this coming September. Meaning that he would have to report to jury duty for 30 days straight. How someone is expected to miss 30 days of work is beyond me. Any case, with the help of Georgetown University Hospital, we made a compelling case as to why jury duty right now in Peter's life would be a hardship. Not sure why I did not do this for myself. But my ultimate concern was Peter and balancing a month of jury duty, and no work, would be too stressful. Especially since Peter missed many days at work from Mattie's cancer. So wish me luck as I venture to jury duty. It is my hope that I complete my one day of service, so that on Friday, Peter and I can head to Ellen's beach house. Ellen has given us her beach house to use this weekend for my birthday, and we are looking forward to this change of scenery, and to be by the Atlantic Ocean.

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, "For the first summer since moving into our home...I've noticed butterflies fluttering around the flowers on our deck. Perhaps Mattie's way of saying hello to all of us. I hope this email finds you well. Thinking of you on this Tuesday and everyday."

The second message if from my friend, Charlie. Charlie wrote, "I've read My Sister's Keeper and one of the thoughts that kept coming back for me was how much we define ourselves by the connections to others in our lives. And what happens when you find yourself in a life where your sole reason for being is just one connection, one role, one task? Can you find another when that one ceases or do you cease to exist as well? I am glad your visit to the spa yesterday was a better one and that you were able to rest. It takes a long time for the body to "unlearn" habits that we've developed to cope with difficult situations and yours is still relearning that it is "safe" to sleep through the night. Until that happens, napping periodically is a good way to recharge your physical and mental batteries as you face each challenging day. It is really nice to hear that Mattie's story and your blog have moved others who were only remotely connected, to do such a thoughtful gesture and donate and spread the word even further about the foundation. Like ripples created by a pebble in a pond, Mattie's life and your blog have spread in directions we cannot yet see. As I practice today, I send you my strength to help you through another week. I hold you gently in my thoughts."

July 20, 2010

Tuesday, July 20, 2010

Tuesday, July 20, 2010 -- Mattie died 44 weeks ago today.

Tonight's picture was taken in September of 2006. Mattie was about four and a half years old. Potty training Mattie was a true experience, and just like everything else with his development, he was going to do that only when he was ready. When Mattie entered Resurrection Children's Center, he was three and a half years old, and was not potty trained. However by the spring of his first year in preschool, Margaret (his teacher), said she thought he was ready to try moving to underwear. That was an adventure for all of us. Mattie had a couple of accidents, naturally, but for the most part, when he was ready to do something, he was really ready! I must have snapped this picture of Mattie in our bathroom, with his tractor stool (that he and Peter made together), and sunglasses of course. Doesn't every one wear sunglasses in the bathroom? This picture was SO Mattie, and I must have grabbed my camera that day to capture this very entertaining sight!

Poem of the day: Something by Author Unknown

I want to leave you something.
Something much better than words or
sounds. Look for me in the people
I've known and loved or helped
in some special way.
Let me live in your heart as well as
your mind. You can love me most
by letting your love reach out to our
loved ones. By embracing them
and living in their love.
Love does not die, people do.
So, when all that's left of me is love,
give me away as best you can.

It is hard to believe that another Tuesday has passed us. Today marks the 44th week that Mattie has been gone from our lives, and as is typical with most Tuesdays I find myself reflecting on the magnitude of the day. I spent a great deal of time today reading the book, My Sister's Keeper. This book intrigues me because it is about a couple who decides to have a third child. However this child is genetically engineered to be a perfect bone marrow donor to her sister (their first daughter) who is dying from leukemia. If this seems like a farfetched story, I assure you it isn't. In fact, Peter and I have met a mom through Georgetown University Hospital who had a "rescue" child to help her son who was dying from cancer. I think knowing that this story is based in reality, makes it very compelling. The way Jodi Picoult, the author, describes cancer and its devastating impact on family dynamics is very well done. It has captured my attention, because I can feel what she is expressing in the book and it is quite legitimate. I spent a great deal of time reading outside on Ann's porch. Though it was hot out, the sun wasn't out, so to me it was quite pleasant just to sit still. While reading, something caught my eye. When I looked up, I saw a rare sight. A hummingbird had landed on a branch and wasn't moving. It eventually fluttered away, but seeing his tiny and delicate body up close was a beautiful sighting.

I saw Ann only briefly today, but while we were chatting, Ann saw a familiar face in the distance. It was Lee, the speech therapist, who works at Mattie's preschool. Mattie's preschool is an inclusive school, meaning that each classroom has around 25% of children with special needs integrated into the classroom. The beauty of this school, is that children with special needs and typically developing children can learn side by side, and in fact, they can learn a great deal from each other. Children with special needs have a unique view of the world, and many times from my experience are very sensitive, intuitive, and perceive a great deal more than those who are typically developing. Lee eventually worked her way toward us, and when she saw me, she gave me a big hug. Lee and I are both graduates of the George Washington University, and while Mattie was in preschool, we had many wonderful opportunities to chat. Lee told me she thinks about Mattie and I often, and that she wanted me to know that his life mattered and made a difference. Lee shared with me that a friend of hers was recently diagnosed with a form of sarcoma. This same friend went to a wedding last weekend and while at the wedding she noticed that the bride and groom were asking guests to contribute to the Mattie Miracle Cancer Foundation in lieu of gifts. Lee's friend asked her if she knew of a Mattie Brown who went to school in Alexandria, VA? Lee naturally knew Mattie and explained our story to her friend. Her friend with cancer, was so touched to see that people who are unaffected by this disease care. This made her feel less alone, and in a way she felt supported by observing this generous act at this wedding. But this story gets better. We actually know the bride from the wedding Lee's friend attended. The bride is Becky and she is a St. Stephen's and St. Agnes school 3rd grade teacher. I met Becky for the first time in May, at Mattie's tree dedication ceremony. Becky is an avid blog follower, but I had never met her in person until that day. When I met Becky she told me she was getting married and in lieu of gifts she was asking her guests to donate to the Foundation. It seems quite remarkable that on a very special day for this young bride, instead of thinking of herself and the gifts she could accumulate, she instead is thinking of Mattie and the Foundation. To me, this special story and person needed to be mentioned, and I am happy that Lee inspired me to write about this tonight. As always, it was wonderful to see Lee since her smile has a way of warming your heart.

This afternoon, I attempted to go back to the same spa I went to a few weeks ago. You may recall, the spa in which I told you a mom brought her newborn baby. I am happy to say that the spa was quiet today, and I had a moment to relax and to continue reading my book. Relaxing doesn't come easily to me, but as I continue to have problems sleeping at night, I find that by day, if I am relaxed enough and not moving, I literally will fall asleep. Later in the day, I headed home and completed some Foundation paperwork.

When Peter got home tonight, we experimented with yet another recipe. I am not sure what we enjoy more, cooking the product, or critiquing it. But it brings us together and through the process we connect about our day.

I would like to share a passage I read today from, My Sister's Keeper. Just so you understand the cast of characters in the book, Kate is the daughter of this couple who is dying from leukemia. Jesse is this girl's brother, and Anna (who I am quoting) is the genetically engineered child, conceived solely to rescue her sister, Kate, from cancer. Anna says, "If you have a sister and she dies, do you stop saying you have one? Or are you always a sister, even when the other half of the equation is gone? I crawl onto the bed, which is narrow, but still big enough for both of us. I rest my head on her chest, so close to her central line that I can see the liquid dripping into her. Jesse is wrong, I didn't come to see Kate because it would make me feel better. I came because without her, it's hard to remember who I am."

The last line of this passage catches my attention. I did not lose a sibling, as in the book, I lost my son. However, I understand this line of questioning. Am I still a parent, now that Mattie is gone? Certainly before Mattie died, when clients of mine lost a loved one, I would work hard to help them see that this person will always be a part of their life. However, now that I have experienced such a traumatic loss, I get the true quandary of this question. Certainly on a cognitive level our loved ones will always be a part of us and our lives. But without their physical presence, our roles really do CHANGE, and they CHANGE dramatically. As Anna asks herself in this book, "who am I" without her sister? I often ask, who am I without Mattie? When you are a parent, your children define you. Children give our lives structure, purpose, meaning, and a trajectory toward the future. When you lose someone of great importance in your life, it is an existential crisis. Not only am I grieving the loss of Mattie, but I am also grieving the loss of my identity.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "First, I want to tell you I came back several times to the picture of Mattie you posted yesterday at the DC reflecting pool. I read what you wrote and I looked at Mattie, who usually to me looks like you, but in this picture I saw his resemblance to Peter. I came back several times to it and I finally realized that it was his "stance" that reminds me of Peter; how he was holding himself, while intent on his objects of interest. I am not surprised that you have so many thoughts and emotions all whirling in your head; while you were helping Ann out, doing things with her family, her children are not yours and the relationship is not quite the same. You don't make the decisions for the child, teach him or her your values system, share your inner self the same way. It is a loss that can never be filled but the edges of the "hole" will hopefully soften with time. Stepping over the mark of September 8, 2010 will certainly not stop your grief nor will Sept 9 likely find you in much of a better mood but you will know that you survived the first year and that you can go on sadly, without Mattie. As you move on this path toward your first year without Mattie in your life, I send you strength to help you with your journey and to search for ways to continue to connect to others. I hold you gently in my thoughts."

July 19, 2010

Monday, July 19, 2010

Monday, July 19, 2010

Tonight's picture was taken in May of 2004. Mattie was two years old. We took Mattie to the Washington, DC reflecting pool. Right by the Lincoln Memorial. As you can see from Mattie's expression he was very happy to see the ducks swimming in the water. During the spring, there are usually ducklings swimming along side their moms, and Mattie and I both loved that sight. What you may not be able to see, but you can if you look in the shadow of the picture, is that my right hand was attached to Mattie's clothing. Here is the irony of the matter. I always tried to think of all the potential risks that could happen to Mattie. Water and a two year old, always led my mind instantly to the possibility of drowning. So I was hypervigilant by water. If you would have told me that only four years later Mattie would have developed Osteosarcoma, I most likely would never have believed you. Cancer is a sobering reality check, because it showed me that there are things beyond our control, and this disease showed me that no matter how much I wanted to protect Mattie, I just couldn't!

Poem of the day: Symbols and Reality by Charlie Brown


I see the sun rising
On another cloudless day
I watch for little things
Sometimes I even pray.
A bird, a bee, a butterfly,
All are linked to you;
While I appreciate these symbols
They also make me blue.
I want so much to hold you,
To feel your arms around my neck;
To hear you whisper in my ear,
Or to give my cheek a peck.
But all I have are memories,
And objects, pictures too;
And none of them can have the force,
Of even one minute spent with you.

I do not get many days like this, where I just sit down in front of my computer, and wonder what on earth will I write today? Typically I have thoughts and feelings of some sort that I want to express or to at least catch you up on our day. Tonight, I think my thoughts are jumbled and I have many emotions running into each other inside my head.

Ann and her family are back from their trip. So I had the opportunity to spend the day with her and her children. I went with Ann to pick up Abbie from her soccer camp and Michael from his basketball camp. In this sense being around children and seeing them in camp doesn't appear challenging for me. I mean I go, and I seem to have no reaction to what I am seeing, other than observing what is around me. However, I know that I am very good at depersonalizing what I experience, and therefore I do not allow myself to accurately feel what I am seeing and hearing and apply it to myself (or at least NOT in the moment). I think this skill has been a wonderful coping mechanism to help me manage grief in pieces. None the less, if I were to remove the composed facade, perhaps today's sights do affect me. I know at least by the end of today, I can feel something bothering me. Could it be that I continue to realize that being a parent is no longer part of my life? My life is NOT like the life of a mom. I may try to help Ann, but at the end of the day, the cold facts speak for themselves. I no longer have a child to love, nurture, run around after, take to camp, and be there for. Not a pleasant reality at all. I am not saying that running around with Ann today triggered this, because if this did not get me thinking, then something else in my life would. That is the overwhelming nature of grief, it hits me in ways and in times that I least expect it. Grief can hit me when I watch a TV program, read a book, hear a song, talk to someone, and the list goes on. Simply stated, grief distorts my vision!  

Peter and I received a beautiful e-mail today from a former neighbor of ours. This particular fellow lost his mom a little more than a year ago. He was a devoted son and caregiver to her, and he wanted to let us know how much he thinks of us always and he knows things are hard for us. However, he also wanted us to know that there is no magic time period when we will feel better. In fact, he acknowledged that after the first anniversary of his mother's death, he continues to feel deep grief. Naturally I am saddened to hear the pain my neighbor continues to be in, and yet on the other hand, I admire his ability to articulate exactly what I know is true. Grief doesn't end after one year. In fact, I think with certain losses, the pain and grief from this most likely lasts a lifetime. I was happy he had the courage to admit something that I hold deeply within my heart, and even happier that he shared this with me and helped normalize my feeling. If my readers are hoping that on September 8, 2010, Peter and I are going to miraculously feel better, then I hate to disappoint you. I know this won't be the case. Peter and I are trying to evolve with this loss, but this loss will always be at our core and will drive many of our thoughts and feelings now and into the future. In fact, I think time doesn't heal, but in many ways, time can cause more pain. Time allows you the chance to truly reflect on your loss and what is missing in your life. Time also tries to fade memories from your mind, and it is a real struggle to keep these special moments we had with Mattie alive.

My mom sent me a story that she wrote today, entitled, A visit from a monarch. It seems to me that so many of us are now having incredible butterfly sightings. Frankly I can recall many summers without seeing a butterfly at all. Either these glorious creatures were always there and I took them for granted, or Mattie is trying to send us a message. Either case, I hope you enjoy my mom's story as much as I did.

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A Visit from a Monarch by Virginia R. Sardi


You no doubt can relate to having the experience of walking out the door when the telephone rings and though you wish to ignore it, you know it could be important so you go back to answer it. It turned out to be a friend of Mauro’s who was to meet us for lunch explaining that he was not feeling well and could not join us as usual. We were disappointed but continued on our way. Mauro turned on the alarm and I had already walked outside the house. If we had left five minutes earlier, as we scheduled to, we would have missed this unexpected and serendipitous visit that caught me by complete surprise as I have never seen a monarch butterfly in the Burbank Hills.

But there it was fluttering its beautiful golden and black patterned wings on a low branch of our jacaranda tree that was directly in my line of vision. It was elegant and full of energy, vim and vigor as it maneuvered itself from limb to limb. I called to Mauro to hurry out to see it before it departed for other parts of the Hills. He came out just in time to see it and remarked that it was our very first sighting since we moved here in 2007. As we spoke, the monarch headed directly for me, taking my breath away, before it took off and flew away. It seemed to know us and I felt it was a sign from Mattie that he was thinking of us and that he sent this beautiful creature to let us know that love never dies!

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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I do believe that some of the people in your life are still in it because of the blog. It makes it "easier" for people to stay in contact as if you had called us all on a party line in a one way phone call and given us the low down on your day. If not for that, I think some would have considered calling but been afraid to somehow "violate" your space since they might not consider themselves long time friends. As our lives get busy it does get difficult to stay in touch and finding the right time to call can be problematic so in a way, the blog stands as an all day (tune in when you can) call to be responded to when you are able. I think this encourages a number of people to stay in touch. But it is more than this; I believe it is also the force of your personality, the caring, loving person that you are that comes through in your relationships with people that makes them connect to you and want to continue that connection. I loved the pictures from the DC Aquatic Gardens and it is now definitely on my list of places to visit soon. I have this mental picture of you spraying Peter with water to cool him down that just makes me smile. Reading your comments about your visit with Mary was interesting. First, whether the person is in a positive or negative mood, everyone needs social interaction of some sort. Second, why do people think that they can change (or have the right to do so) someone's likes and dislikes after more than 70-80 years of  behaving a certain way? Mary doesn't eat corn, has probably never liked it, but somehow the center attendants have decided she should eat it anyway. Why? And what will it accomplish now for her? Thought about in this way, it is totally absurd and worthy of laughter if nothing else. It really was a good deed on your part to see Mary every day this week and I think that Mary is in much better shape for Ann's return than she would have been without your visits. As I practice today I send you my energy to help you continue to deal with the little and not so little signs that Mattie is gone. I hold you gently in my thoughts."

July 18, 2010

Sunday, July 18, 2010

Sunday, July 18, 2010

Tonight's picture, though a little blurry, captures the essence of Mattie. It was taken in May of 2006. Clearly we received a large box in the mail, and Mattie did not want us to throw it out. His affection for boxes occurred early in life. Though I have found with small children, that you can buy them all sorts of toys, but it is the everyday objects in the end that interest them the most. As you can see, Mattie was having a ball in this box and smiling away. In many cases, Mattie would transform his boxes into cars, boats, and trains primarily. Our living room served as a race track, dock, and track on many occasions. Having Mattie's energy for life around us for seven years is a force we greatly miss now. Our home no longer has the same vibrancy and action in both the physical and emotional sense.

Poem of the day: Progress? by Charlie Brown


I often don't know
From day to day
How I'll feel or
What to say
I know you're gone
And yet in my heart
I just cannot accept
That we're now apart
For me, all your things
Hold pieces of you
It's hard for me to share
Would you feel that way too?
I think I'm making progress
But that makes me sad too
Because it means I admit
I will never again be mom to you

I think this weekend in some ways was challenging because on a deeper level I was forced to see that I will never be Mattie's mom again. Charlie's poem accurately captures my sentiments, and I told her today that I appreciated her understanding exactly what I was trying to express in last night's posting. I still reflect on Mattie's shoes and other items that I relocated in the past day or two, and Peter reported to me that the little girl was playing in Mattie's sandbox again today. All signs that Mattie is not here, and will never be here again. As you will see reflected in Charlie's message to me today, she acknowledges that our core Mattie Team hasn't forgotten about us. That this team is just that.... still is a part of our lives. I agree that this is VERY atypical. Those who grieve usually land up doing it alone after the first few weeks or even month. However, I am not doing any of this alone, unless I choose to. The question is why? I have to imagine the main reason I am not doing this alone is because I continue to write the blog. From the time that Mattie was diagnosed, Peter and I became very open about our day to day thoughts and feelings. In a way, I am trying to make grieving, not necessarily a public affair, but most definitely an accepted and more understood aspect of life. I know that not all people who experience grief would be comfortable sharing the details that we do. I respect that, because I know that we all need different things to cope. Since our core team helped us survive over a year of torture, it only seems natural to continue reaching out to these people. I am fortunate though that this team keeps reaching back, that I am not left alone in isolation to wallow through the days without help. Life right now for Peter and I is difficult, but if we did not have people reaching out to us, it would be a hundred times more devastating. If that is at all possible.

Despite it being extremely hot today, I told Peter, I wanted to visit the DC Aquatic Gardens. We usually do this around this time of year, when the lotus flowers are in full bloom. However, Peter and I haven't visited these gardens for over two years now. I admit today was a rather hot day to be standing in the sun, but as always the sights were not disappointing. I remember the very first year we found this little gem, I was in shock. I had never seen a lotus flower before in my life. Or at least not one growing in front of my eyes. The locus flower is the national flower of India and Vietnam. The flowers, seeds, young leaves, and roots are all edible and the flower has been known to represent elegance, beauty, perfection, purity and grace. When you stand in a field filled with these flowers, you can't help but feel captivated in a state of beauty. The sight to me is almost surreal, and I feel transported into another land. Peter caught some of our moments today on camera. Mind you while he was doing this, I was spraying him with cold water from Mattie's spray bottle we bought him at the LA Zoo. We were quite the pair today, but despite the heat, we enjoyed this outing and our time together doing things we used to enjoy. To learn more about the gardens, I attached a helpful link: http://www.nps.gov/keaq/naturescience/gardener-corner.htm


On the entrance to the gardens is a beautiful pond with water lilies in it. Staring at these flowers, I can almost feel why Claude Monet, one of my favorite impressionist painters, was intrigued by these sightings.















This sighting always gets me.... a pond filled with lotus flowers for as far as the eye can see.















A close up of a lotus flower, that hasn't opened up yet. To the left of this flower, you see something that reminds me of a shower head. It is all green. This is what is left over after the flower blooms and all the leaves fall off.



















Lotus flowers can be pink or white. You can see the "shower head" pods that remain once the flowers have bloomed.














Can you see why I call it a shower head now? In fact, this remanent is actually used by florists in flower arrangements.













Peter took a picture of these cat tails today. Notice how there are 7 lined in a row. It seemed to be very symbolic of Mattie's seven years on this earth. I also happen to love cat tails. When Peter and I first began dating, Peter and I visited a nature area outside of Boston. He picked several cat tails for me, and I brought them to my apartment in Boston and put them in a vase. About a month later, when I woke up, it looked like I lived in a cotton factory, and the factory just exploded. The cat tails literally all popped open and let out pollen in clumps of cotton all over the place. I learned my lesson at that point, NO more cat tails for me. They are meant to be outdoors!

I asked Peter to snap this last picture because it captures one of many beautiful butterflies that surrounded us on our visit. We had all sorts of butterflies around us from monarchs to this black swallowtail. On Mattie's birthday this year, Ann gave me a book about butterflies and moths. Probably because she knew I had begun turning my attentions to nature and trying to see signs from Mattie. Since I have received this book, I have used it many times. Tonight, I used it to figure out that we were visited by a black swallowtail.









This afternoon, I went to visit Mary, Ann's mom. Mary wasn't having the best of days, but in all reality, when I go to see Mary, I am happy with whatever mood she throws at me. I realize that life for her hasn't been easy, and now as she accepts her physical decline, I know that this is challenging and frustrating. I read several articles in the paper to Mary today, and then we read some magazine articles. Mary and I learned about the Russian Spies in NY, and also read a funny story that classifed woman as either angels or devils when it came to eating. I think it is safe to say that Mary and I are both devils, because we can make very good excuses for why we eat what we want to. I helped Mary through dinner, and despite Mary telling her caregivers that she doesn't like corn, they served her corn mixed in with other vegetables. Mary wanted the other vegetables, but not with the corn. So while helping her, I literally picked out all the kernels of corn, and made a mountain of it on another plate. Yes this might sound like a waste of time, but it accomplished two fold. One, Mary was able to ate all the other vegetables, and two in a subtle way (without me verbally having to say anything), it reminded her caregivers that Mary doesn't like corn. They acknowledged that to me as they saw my corn mountain growing. After dinner, Mary and I sat outside. I don't only drag Peter outside in this weather, but now I am also bringing Mary into the heat. It has become our evening routine. After dinner this week, we would venture out on the deck for ten minutes. While outside, we look at the trees, bushes, and flowers. When isolated inside, as I know all TOO well, seeing greenery and life are VERY important. While outside tonight, Mary spoke with Ann and all her grandchildren by phone. She thoroughly enjoyed that. Could Mary have survived without me this week, most definitely. However, as I told her tonight, when she said she has wasted my entire week, I told her we are friends, and as such, friends help each other. I asked her if the shoes were reversed, would she be visiting me? Her answer was of course! So I figured I proved my point.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It's very hard when the loss of someone you love also means the loss of the connections they brought to the relationship. You have done far better at staying connected to the school, the teachers, the medical personnel and Mattie's friends than anyone else I know has managed a similar loss. Usually those connections fade within a couple of months and the grievers have new losses especially if they enjoyed those connections. Instead you seem to have found a way to expand your connections which as always speaks volumes for your abilities as a counselor and communicator. I know it is hard to see some of Mattie's things being used by another child; however, I think that Mattie would not mind. I know on one hand it is tempting to try to "fix" things in place so that nothing changes but that is also a reminder that with Mattie gone, nothing will change except time and that the natural progression of Mattie outgrowing toys and giving them away will not happen. I believe you will come to a place in your own time when you are able to "outgrow" the need to be surrounded by everything of Mattie's and be able to sort that down to those things which were truly special to him and to you. Perhaps when you get ready to do that, you might want to take pictures of each thing and put them in a memory book/CD so that you will have the pictures to refer to. That point will come in your own time. I appreciate your issues concerning your belief in G-d. You are right that both Mary's son and Mattie are not where your prayers can bring them back. However, both you and Mary are now the ones in pain and the ones who need the prayers and so I will continue to pray for you both. I hold you gently in my thoughts and in my heart today."