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

August 20, 2010

Friday, August 20, 2010

Friday, August 20, 2010

Tonight's picture was taken in July of 2002, at Mattie's baptism, three months after he was born,. Father Jim Greenfield baptized Mattie. Jim and I go back a ways since we met each other at the George Washington University. Jim was the priest overseeing the University's Newman Center. He gave me my first clinical client, he gave Peter and I Pre-Cana (a process to prepare to be married in the Catholic church), he baptized Mattie, and he even presided over Mattie's funeral. All of this happened in a very short period of time. When I look at Mattie's baptism picture it is truly impossible to believe that Mattie is gone from our lives. He was full of energy, life, and spirit that day. Jim allowed us to have a private baptism for Mattie, so this sacrament wasn't part of a regular church mass. When Jim was pouring water on Mattie's head, Mattie literally smiled! Jim said that was a first for him. I remember picking out Mattie's outfit and it is hard to understand how such a healthy baby has died so young.

Poem of the day: Heart and Mind by Charlie Brown


Could I stop thinking of you?
Somehow that doesn't seem right.
Memories of who you were,
Fill the spaces of my day and night.
Whenever you are not on my mind,
I think it is guilt that I feel.
And sometimes I can't believe you're gone,
Truthfully, that just doesn't seem real.
While I know that you're gone
And you will never return,
That's a lesson my heart,
Just can't seem to learn.
Maybe inside I hope,
If my life is so tough,
Somehow G-d will say,
She's suffered enough.
And then send you back,
To where you belong.
I know that can't happen,
But I'd like to be wrong.
So until my heart learns,
What's known by my mind.
I guess I will keep searching,
For what I can't find.

Two particular sentences in tonight's poem have caught my attention... "Somehow God will say, she's suffered enough. And then send you back, to where you belong." If only it was that easy to allow God to see one suffering so much, that in the process God would grant us peace. In our case the peace to have Mattie back with us. Despite my intense feelings and pain, I am very aware of the fact that I am not the only one in the world suffering. There are many others who may feel like I do over a loss, or an illness, a psychological issue, financial hardship, divorce, the impact of serving in the military, and the list goes on. I hope it is clear to my readers that as I write each night, I am not claiming the cornerstone on pain, and regardless of my circumstances, I try to be sensitive to what others have and continue to go through.

However, with all that said, I find that I am going through a very difficult point in the grief process now. It is when I hit this point, I wonder when and if I will ever be able to pull out of it. It is scary at times, with no end in sight or hopes for brighter days ahead. I am not sure what triggered this, perhaps coming back from vacation, back to the reality of our surroundings and our life.

I was focused on seeing Ann and her cousin, JP, today. In fact, knowing that JP wanted to see me, motivated me to get up and pull it together. In a few short hours we accomplished a lot together, and in the process we also got to see Mary, Ann's mom today. Mary told me she was worried about me, but was happy to see me. Mary had many visitors today between her grandchildren and friends, and she was soaking it all in. What is evident though is that visiting Mary not only perks her up, but it also perks up her fellow residents. It is wonderful to see them smile or try to engage with you and on days like today I can't help but feel frustrated. I am frustrated because I know at one point all these residents were vibrant people, and yet to see them stricken into their current state is very sobering. Frankly I think a visit to a hospital and a nursing care facility are mandatory exercises for our younger generation. So much can be learned about the fragility and beauty of life by helping others in this capacity and in turn we learn more about ourselves than we thought even imaginable.

This afternoon, I went to the airport to pick up my parents who were returning from Copenhagen. They had a wonderful trip, but they both came home quite ill. They are naturally on another time zone, and that did not help how they were feeling either. Once I got them settled, I mobilized into action and made hot tea and homemade chicken soup. When Peter came home from work, he jumped right in to help me, and together we made a wonderful soup. Before dinner, Peter and I sat outside together and chatted and tried to recapture the time we had at the beach. Uninterrupted time, time to connect and talk.

Over soup and dinner, we got to hear about my parent's trip. Naturally they were exhausted, so I am sure we will continue to hear more over this next week. But they bestowed on me a beautiful set of nesting dolls from St. Petersburg. They are a true work of art, and I put them near Mattie's music box (which hold his ashes). I think Mattie would have loved these nesting dolls and found them very whimsical.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Unfortunately, we are not in control of our lives. We may make decisions but ultimately, what happens to us is beyond our ability to control. All any of us can do is to realize that the time we have here is limited and try to use it the best we can given our gifts/talents/interests and our limitations. I believe the key to you finding satisfaction in your life is to retake an "inventory" of your talents and interests (and you are one of the brightest, most talented people I have ever met) and find a way to use those going forward. If not thinking about Mattie brings you guilt, then consciously dedicate any project you are about to embark upon to him; make him a part of the things you decide to do. Whether it is work with your hands, like gardening or creating something for one of Ann's children, or whether it is writing or"mindwork," dedicate it to Mattie and then do it to the best of your ability. Bring his memory to you, and then do the things you need to do. Perhaps you can even come up with something that represents Mattie for you and find a way to incorporate it into what you do. Adding a butterfly to a design, or a car or a "circle" over the "i" representing the moon when you sign your name. It can be anything meaningful to you and it can add Mattie's memory to anything you do. I have had to take my practice alone this week due to meetings and I miss the energy that the group generates for me; I encourage you to continue to make yoiur connections to friends and family for the same reason. I hold you gently in my thoughts."

August 19, 2010

Thursday, August 19, 2010

Thursday, August 19, 2010

Tonight's picture was taken in August of 2009. Mattie was riding the famous, Speedy Red! My parents got Mattie Speedy Red, because they knew this was something he had always wanted. Because Mattie became terminal right after treatment, Mattie was never able to have his 'Make A Wish' Foundation wish granted. So at the end of his life, we were scrambling to give him something special, and a moment of happiness. Those moments were too few and precious toward the end. In the beginning, I rode on Speedy Red with Mattie, but after one or two drives around, he got the idea of a gas pedal and brake immediately. He also got the concept of steering, and was an excellent driver. So despite the fact that Mattie had a central line, in which he was hooked up to pain meds, and was wearing an oxygen cannula attached to an oxygen tank, I allowed Mattie the freedom to drive around on his own. It took a great deal of courage to step out of that car, and to give Mattie this space, but I am glad I did it. Driving Speedy Red made him happy, and I try to cling to those memories now. Some parents have the joy of watching and teaching their children to drive. Peter and I have been deprived that developmental milestone as well, but we will always have Speedy Red. Which may be why parting with Speedy Red isn't happening any time soon.

Poem of the day: Day to Day by Charlie Brown


My sorrow is nearly constant,
Day to day to day.
And yet, if I look back
Over the past months
A gently upward slope appears.
So fragile is this path
That I scarcely want to
Acknowledge its existence,
For fear that it
Will crumble beneath my feet.
I know the path back to joy
Is rambling and filled
With ups and downs.
And the only safety rails
Are the prayers and hopes
Of my family and friends.
Day to day I cannot see
Many changes in my grief.
But I have to believe this path
Eventually leads to a brighter sky
Reflecting the light of your memory.


Tonight's poem, Day to Day, reflects quite well how I feel on a daily basis. However, as time moves forward, do I see an "upward slope appear," as the poem so aptly points out? Well the answer may be yes, but I am not sure. In the beginning of my grief journey, I would say I was absolutely numb and quite closed off to most feelings. With time, some of the protective shell that I established to survive has cracked and at other times the shell is completely peeled away. However, for the most part, my true feelings of loss and grief over Mattie are quite private. Sure I write on the blog each day, but I certainly do not write the full picture of my highs and lows on such a public forum. What I will admit however, is that time isn't healing for me. Certainly the pain may not be as raw, but the feelings of sadness I carry with me each day hasn't disappeared. In addition to sadness, there is also guilt. Guilt that I am still here and guilt that I would take my mind and heart off of Mattie for a little bit each day. That may sound healthy to those of you reading the blog, but for a mother to admit that, it doesn't feel good or natural. Because what mother caring for a child can block out her child in any given day? A mom may be engaged in work and other tasks, but somewhere in the back of her mind is the thought of her child. What happens when this child is no longer alive?! Where do those caring thoughts go to? Not being able to think about Mattie each and every day is the first sign to me that my mind knows he is no longer with me. I am no longer performing my mom role, and that begs the bigger question, why? Accepting Mattie's loss means also facing guilt head on, and I find these days I am battling grief and guilt and together they are a powerful combination.

Peter and I left Bethany Beach around noon today. We definitely came home with more than we left with. I am not sure if it was the notion of leaving or coming home, but I wasn't myself on the car trip home. Thankfully the beach is only three hours away, because I couldn't have managed to be trapped in the car for another second longer. When we got home we had many chores to do, but one thing I was happy to see is our garden managed quite well. Peter created a sprinkler system for the garden that went off on a timer twice a day while we were gone. I am so happy he did this, because everything looks so green and happy. I spent some time outside with my flowers today, and I was very grateful that Peter made dinner. The thought of that task wasn't appealing at all to me.

On Friday, I will have the opportunity to see Ann and her cousin, JP, before I head to the airport to pick up my parents, who are flying back from their overseas vacation. I spoke to JP tonight, and I got to hear about his adventures today and what he wants to do tomorrow when I see him. Returning home is met with its own challenges, which in a way have made me feel like retreating. However, I am focused upon knowing that Ann's cousin is looking forward to seeing me and then the fact that my parents will be arriving at the airport and are expecting to see me there. So again, I take it one day at a time.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I hoped you would have better weather and be able to enjoy the beach before you packed up to leave, but it seems as though in spite of the weather, you made it an adventure and went out anyway. It's easy to see that Mattie got his determination from you and Peter and I know he would have made the most of the time and perhaps even found a way to enjoy all the water in the streets. I can see him with one of his ships, taking advantage of the opportunity to be Captain Mattie in a place where normally there is no lake. As you said, all the feelings are mixed in every experience you have. Tears mix with laughter and joy is tinted with sadness at the sights of children playing. I can only hope that as time goes on the burden of grief lifts and lets you enjoy more of the simple joys of life. Although you said you were not sure that G-d was with you on your walks along the beach, I hear his presence in that still, small voice that tells you, "You are needed" and gives you courage to get up and try to face each day. As you head home to DC, I wish you a safe journey and that you might see some positive reminders of Mattie's presence. I hold you gently in my thoughts."

The second message is from one of Mattie's babysitters and our friend, Emily. Emily wrote, "Mattie and I shared so many laughs and special times that replay in my mind constantly. Every time the Lion King on Broadway advertisement plays on TV, I immediately think of him. I will NEVER forget the moment when "Can You Feel The Love Tonight" was playing and Mattie grabbed my hand. I had tears in my eyes watching him hold my hand, and remember tapping Adam so he, too, could see the genuine love this child had to give. The funny part was once Mattie caught me staring at him and not the show he whispered, "Emily! You're not watching!!" I laughed, but I remember crying inside hoping that this would not be the last time I would be able to hold his sweet hand. (Unfortunately, it was...and I replay that night over and over hoping for comfort).I hope you know that his memory is forever in my heart and mind, and my love and support for you and Peter is forever. If you ever visit NYC, please let me know because we would love to see you. I miss you and Peter very much. All my love always."

August 18, 2010

Wednesday, August 18, 2010

Wednesday, August 18, 2010

Tonight's picture was taken in October of 2006. It was taken by Emily, one of Mattie's favorite babysitters. Emily lived in our complex and was getting her Master's degree in counseling at the time. Mattie loved Emily, and he really enjoyed his trip to her apartment. He clearly loved one of her chairs, and most likely Emily photographed Mattie in one of his playful moments.

Poem of the day: Footprints in the Sand by Mary Stevenson

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."

Based on last night's blog, where I reported that Peter thinks he is walking on the beach with the "invisible woman," Charlie sent me the poem, Footprints in the Sand. I have read this poem many times before, and it is a very touching and spiritual poem. I am not sure if God is walking with us along the beach these last few days, but I was touched by the meaning that Charlie was trying to attach to our special walks in which both of us were walking side by side, and yet only one set of footprints could be seen!

It started raining at the beach last night. A torrential rain like I haven't experienced before, and basically a rain that kept on coming throughout the day. It was my hope on our last vacation day that we could spend it by the beach, but that wasn't meant to be. By noon time, Peter and I decided to venture out and we drove to the town of Bethany Beach. I snapped some pictures of the incredible flooding around us. Keep in mind that this flooding was caused from ONLY one day of rain, but since many of the beach communities do not have storm drains, water accumulates quickly.   

This was the incredible view I observed through our windshield while Peter was driving to the town. Some streets were barricaded off because they were impassable. Others were simply entertaining to navigate. But we got into town and many other people were there trying to escape the weather and make the best out of the storm.







As we were walking around town, we stopped at several shops. One shop that I wanted to go into, never happened. In order to get into the store, I would have had to wade through at least four to six inches of water. I deemed no shop was worth that adventure. However, while Peter was taking this picture, I was watching some young boys jumping into this lake, which was once a street. They were having a good time, and it was a sight to see.



Later in the day when we got back to Ellen's house we decided to go for, a walk on the beach. I don't normally travel with a rain jacket but borrowing Ellen's made this walk possible. As you can see, the only ones nutty enough to walk in this wind and rain were Peter and I, and two seagulls in the background. Even the life guards left the beaches.



At some point today, Ann called me and we chatted and I also had the opportunity to talk with her cousin, JP, as well as her mom (Mary), who was spending the day at Ann's house. When I got on the phone with Mary, her first comment to me was I, "miss you." Mary wanted to know how I was feeling and that she was thinking of me and wanted to tell me some things. Unfortunately it is sometimes hard to connect with Mary on the phone, but I got enough from the call to understand that I am on her mind. I connected with Toni, Brandon's mom, today as well, and there is one conclusion I have come to regarding Mary, Toni, and myself. We are all moms who loved/love our sons who have been touched by cancer. Somehow cancer is a unifying factor, regardless of our age differences or our geographical distances. In some respects we understand each other immediately and it is nice to be understood with all our ups and downs.

As tonight is our last night at the beach, I am feeling mixed emotions about leaving. As Peter knows nothing is ever simple with me. Before dinner we walked through Ellen's community, and spotted bunnies (seeking shelter in the rain), and also saw many children outside playing. We saw children on bicycles, tricycles,  playing ball, and just having a good time. It was a wonderful sight and also a painful one at the same time. So the next time you will be hearing from me, I will be back in Washington, DC, with all the stresses that our post-Mattie world brings us. Not that the beach was an escape per se, but seeing trees, flowers, birds, and ocean were very good for us.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I know I am grateful that Brandon continues to be "no evidence of disease" and I am sure the other blog readers are as well. I will continue to pray that whatever is causing the weight loss is innocuous and stops soon. Those are lovely pictures of your niece and nephews; they look to be full of energy and enthusiasm. I am sure it is difficult for them to understand (as it is for us all) why Mattie died. As you said, children process grief differently from adults and they seem to incorporate it all into their lives and their beings in a much more realistic way. They move into and out of grief and they understand that one cannot and should not be "stuck" in one way of feeling but are open to it all. They may be sad and cry for a while and then go off and do something else. They may invite the spirit of the departed to join them in play or they may tell you how much they miss their friend or family member. If children sense we are accepting, they are very open about how they feel and this is something we adults could definitely learn from. I am glad you and Peter enjoyed your time at the beach and that it was long enough for you to relax some and enjoy your time together. Hopefully, you can do it again in the not too distant future as the ocean seems to be very healing for you. I hold you gently in my thoughts today and hope you enjoy your remaining time in Delaware."

The second message is from my friend and colleague, Nancy. Nancy wrote, "In the Jewish religion, we have a prayer said when someone we care about is ill. This is during the time that our Torah (bible) is read. I used to include Mattie's name when I went to synagogue. I would like to add Brandon's name to my prayer. What is his last name? Please let Toni know that others send their hopes for No Evidence of Disease to continue. May they find a simple reason for Brandon losing weight. I wish it worked all the time as we all wanted Mattie to get better. I remember an earlier picture of Sydney, Nat, and Will with Mattie. They are beautiful and growing like weeds. It was lovely that Lisa called and despite the weather you were all able to have a visit. Seeing their faces must have been a mixed blessing, glad to see them having fun and feeling Mattie should be there too. Maybe he was! You did say that you saw toads and had unexpected fire works.Thanks for all the wonderful descriptions of Bethany and Ocean City beaches. They are two areas that friends have talked about and we haven't seen yet, in person. Now we will add them to our list. I know that you are having your last day at the beach. I am glad that you had this time together. Connections are medicine for healing. Each of you seems to bring a strength for the other.Peter, I'm glad that Vicki got to laugh a bit as it seemed that her headaches were back for a few days, too. As we get older, I think, nature does become a special awareness. It gives the soul a chance to rest and focus on the important areas of life, like love, compassion, sharing, gratitude. Not that we may not have them within our daily lives, however, living in a city does take great imagination for the quiet of water, trees, plants, and creatures. I just had a flash of Mattie and his creatures."

August 17, 2010

Tuesday, August 17, 2010

Tuesday, August 17, 2010 -- Mattie died 48 weeks ago today.

Tonight, as we remember Mattie, who has been gone from our lives for 11 months or 48 weeks, his spirit, energy, and joy for life seems captured in this picture. I snapped this picture in my parent's living room in California in March of 2003. Mattie was 11 months old and this was his first trip across the country. Mattie proved to be a very good traveler, handled planes better than I do, and he simply loved an adventure. In this respect he was his father's son!

Poem of the day: Gifts by Charlie Brown


Some days missing you is soft
It's that quiet, gentle ache.
But sometimes it is hard
My whole world seems to shake.
I didn't see how I'd cope
Or how I could get through,
Each of the past 11 months
That I've spent missing you.
But when you had to leave
You left gifts behind,
A new appreciation for life
And people who've been so kind.
I do appreciate them all
Birds, animals and even bugs.
But I would trade every one
For one more of your hugs.

I wanted to let me readers know that I heard from Toni today. Toni is Brandon's mom, and as so many of you know, Brandon was Mattie's big buddy at the Hospital. Brandon got all of his blood work back today, and his news is very positive. He is No Evidence of Disease, but he will need to be monitored weekly because he continues to lose weight, which is naturally a concern. When I spoke to Toni last week, I immediately understood her fears and concerns. Once your child has been diagnosed with cancer, it is very hard to not live in fear. Every physical symptom brings about panic, and of course the first thing to pop into one's mind is that the cancer is back. As Toni went through Mattie's battle with me, she saw first hand that after being off of chemotherapy for six weeks, Mattie's cancer not only returned but returned with a vengeance. I can only imagine how Toni feels about Brandon being off of chemotherapy for a year and a half. Being on chemo isn't pleasant by any stretch of the imagination, but chemo in some ways gives you a false peace of mind. Because these toxic drugs make you think you are actively fighting the cancer, and on chemo you feel safer. Once your child is off of chemo, you live on the edge, waiting, hoping, and struggling. Struggling to try to live a "normal" life again, but in all reality as I say to Toni all the time, neither one of us will ever be normal again.


My sister-in-law, Lisa, is visiting her good friend this week at a neighboring beach. So today she visited with us, and we got to see our niece, Sydney, who is 12, and our nephews, Nat and Will, who are 13 and 9. We had lunch together at the house and then the hope was to go to the beach together. But today was NOT only overcast, it was pouring for a good portion of the day. Nonetheless, we ventured to the beach and as you can see from the pictures, the kids did not seem to mind the wind and the rain at all. In fact, they even went into the water until it started to thunder and lightning!









From left to right is Sydney, Nat, and Will. In many ways I know it is hard for these children to understand what happened to their cousin, Mattie. I think for Will, who is closest to age in Mattie, the whole loss is hard to understand and grasp. Lisa and I talked about how to help children grieve such a loss. The beauty I feel about children is they are very good guides, and we as adults need to take their lead. Unlike adults who sometimes need help processing thoughts and feelings, because we protect ourselves and those around us. I have found from observing Mattie's friends, that children deal with this loss quite differently from us. For them, talking about their friend and bringing up memories are more natural for them, and the best thing we as adults can do is support them in their memories and dialogue when they bring it up. Children do NOT live with grief 24 by 7 as adults do, but because they don't that doesn't mean they aren't clued in and have questions. They most certainly do, and I continue to be impressed with how the parents of Mattie's friends continue to help their children with this loss.

Lisa and her family live in Boston, so we do not get a chance to see each other that often. However, it was very special to receive hugs from our niece and nephews today. As I told them, they give the best hugs! In a way it is hard to believe how much older they are, especially since it seems like yesterday they were just babies. Time seems to have moved so quickly as I watch them mature. I see so many children around me growing up, and yet for me time is stuck at age 7, the age Mattie was when he died. For Mattie, he was robbed of this aging process, and instead experienced things I wouldn't wish upon anyone.

After our family visit was over, Peter and I went out for a drive. We went through Ocean City, MD. People have told us visiting this beach area is an experience, and they were correct. I never ventured out of the car, because it was raining, however, while driving, I became very quiet. Peter knows that is the tell tale sign that something is not right with me. I couldn't articulate what my issue was, so I remained quiet. When we got back to Ellen's house, I took Katharina's blanket with me, and went to sit outside on a chair. I listened to the ocean and the birds and fell asleep. When I woke up, my headache felt better, and though fatigued, I was in a somewhat better mood.

Peter and I had dinner outside, and then we went for a walk on the beach. Along our walk, we saw toads and even fireworks. It was all special sightings. There isn't much anymore that brings me joy, but seeing the ocean still makes me happy. I love the sight, the smells, and the sounds! In fact, as tomorrow approaches, which is our last full day at the beach, I am saddened to be leaving. Peter and I have developed our own routine here and a great deal of it involves being outside and walking, and appreciating the ocean. While walking with Peter by the ocean the past two days, he has gotten me to laugh. Particularly over our footprints in the sand. After we walk a bit, Peter has me turn around to figure out which prints are his and which ones are mine. Peter's are discernible, but we can never find mine. Peter's joke is he is walking with the invisible woman. I can't explain where my prints are, because clearly I am walking beside him, but it is eerie! Needless to say, it is a mystery that makes me laugh!

While writing tonight's blog, Ann called me. We chatted a while, and then her cousin, JP, came on the phone. Apparently JP enjoys talking to me, and likes to connect with me each day he is visiting Ann. I find it very sweet and touching, and he is looking forward to seeing me on Friday when I return to DC. Naturally returning from a vacation is NOT easy for me, and going home signals my return to being directionless and being without Peter by day. But because JP is so motivated to see me, it helps me redirect my focus. It is funny how another person can influence your life in such a way.

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Just a note to let you both know I am thinking of you on this Tuesday and everyday. We went to the Jersey Shore over the weekend to visit with friends and as a result I am a few days behind on the blog. I hope you found some peace and a moment of true rest while you were at the beach... Much love and many thoughts."

The second message is from my friend, Charlie. Charlie wrote, "It seems as though this time away has been what you and Peter needed. The opportunity to connect with others when you are up to it and the choice to be alone when you are not. However, I have to say I am glad that you are making the effort to spend time with others as much as you can. Grief won't go away with time; you will always remember and ache for those missed opportunities, those things that Mattie won't get to do but you are doing what should be done in situations like this; you are growing, learning, and connecting and thereby honoring Mattie's time here in the most important ways. I don't think it is strange that your picture taking has shifted from Mattie who is no longer here to taking pictures of nature. When children are with us, our focus is more immediate and they fill our "view screen"; sometimes you even see things in the background of the picture you did not notice when you pushed the button. Without a child as the focus of the picture you look farther out and your view is more expansive. I think this evolution naturally happens as we age but yours has come much too soon. You are certainly thought about daily (and sometimes much more often) by many of us; thank you for the reminder that it is important not just to think about someone but to actually reach out as well. I hold you and Peter gently in my thoughts."

The third message is from my friend and colleague, Nancy. Nancy wrote, "Today, another Tuesday, marks a crossroad. Charlie and I each discuss the end of your first year without Mattie. I'm sure others do too. The Brown family has created a safe haven for many families. I know that you didn't want it to happen this way. Unfortunately, each of us encounters times when we get something we don't wish for or we are challenged to close a door when we want it to stay open. I know that you are struggling with what is in store for you next. Charlie's poem, Messages, was poignant. Her reference to hope, intense pain, confusion, joy, along with guilt and scars, you have experienced all of these. And, you still reach out to others and share a part of yourself. This is a special gift. One that Mattie learned too. As your heart heals a bit more, I believe you will find your answer. I pray that Peter and you had a day with beauty and calm. With love always and in all ways."

YOU ARE MY INSPIRATION by Nancy Heller Moskowitz

The world is filled with amazing things,
Butterflies, stars, a beautiful sun or moon,
All capture a piece of my time with you.
However, nothing brings me as much emotion,
As a memory.
You, my little boy,
A treasure, a challenge, an engaging soul.
I wrestle with my thoughts,
Of how to be each day.
Then grief reaches out to touch me,
An emotion, I'd gladly give away.
For grief keeps joy from brimming,
From my head down to my toes,
I knew it once. I hope it shows,
The road to follow, once again.

August 16, 2010

Monday, August 16, 2010

Monday, August 16, 2010

Tonight's picture was taken in March of 2003. This was Mattie's first trip to California, at 11 months old. Mattie's first plane trip was an experience, because in typical Mattie fashion he did not SLEEP at all. In fact, for a portion of the flight, he and I were literally on the floor by our seats playing with toys. This picture was taken at one of my favorite gardens in Los Angeles, Huntington Library's Gardens in Pasadena. As you can see Mattie's favorite mode of transportation was on Peter's back. Prior to the back pack, being mobile with Mattie was challenging. He did not like the motion of strollers and despised being in any sort of baby carrier. In fact, with Mattie, I came to love four things, and never wanted to part with them. They were the keys to our survival with him! They were his entertainment saucer, his Graco jumper which attached to the threshold of any door, his walker (aka, tot wheels), and the back pack!


Poem of the day: Messages by Charlie Brown

Sometimes the message comes in "code"
Sometimes it comes in "clear"
Maybe I'm just imagining it
That at times you seem so near.
When I walk the beach
And look up at the stars,
I find that I have hope
I can heal without too many scars.
But at others times I'm saddened
And I feel so all alone,
Then the grief seems unbearable
And my heart and soul just moan.
This year of mourning is ending
But there is no end to my grief
Sometimes I think I'm conquering it
But then I'm blown just like a leaf.
At what point can I be happy,
Can I find joy in my life?
Without the grief and the guilt,
That cut just like a knife.
People say you'd want me to be happy,
To find a way to go on without you.
In my mind I know you would,
But my heart can't yet admit that's true.

I believe Charlie's poem entitled, Messages, speaks volumes. I do look toward nature and my environment to keep connected with Mattie. I see messages or codes in butterflies, birds, stars, and now talking seagulls! Actually as I write this, it sounds hysterical, and if I wasn't of sound mind, I would really wonder about what I am writing. But losing Mattie has left me grasping at straws sometimes. Charlie is correct, this year of mourning is coming to an end in calendar date ONLY, because there is NO end to our grief. We carry it and wear it where ever we go. Sometimes you can see it, but most times, it is an internal scar you can't see, I can only feel it deeply.


Peter and I drove to Lewes, Delaware today. Lewes is the FIRST city in the FIRST State. It is a charming and sleepy town filled with history and shops. While on our drive, I saw this huge wind turbine in a beautiful field. The turbine is part of the University of Delaware, but it wasn't a sight I was expecting to see. I found myself fascinated with it, and was compelled to take a picture of it. I then googled this sighting tonight and here is what I found out:

The University of Delaware and Gamesa Technology Corporation joined forces to install a utility-scale 2-megawatt (2-MW) wind turbine at UD’s Hugh R. Sharp Campus in Lewes. The joint venture, First State Marine Wind, is a partnership between UD-owned Blue Hen Wind and Gamesa USA. This partnership came about because of synergies that emerged from wind research being conducted at UD’s College of Earth, Ocean, and Environment and College of Engineering, the State of Delaware’s interest in offshore wind, the City of Lewes’ interest in innovative energy opportunities, and Gamesa’s interest in improving its understanding of the effects of marine conditions such as salt spray on turbine coatings, corrosion, and avian impacts.


This afternoon, Peter and I met up with our friend, Tamra and her family. We met at a restaurant in Lewes called the Buttery, which had lovely Victorian charm. Today was Meredith's (one of Tamra's daughters) 17th birthday. Peter and I are very fond of Meredith and her sister, Louise. These young women were very generous with their time when Mattie was sick, they would visit him, bring him creative and special gifts, and when we were home between hospitalizations, they would come over to play with Mattie so that Peter and I could get a minute to recharge our sanity. As I told Meredith today, Peter and I will never forget their kindness and the moments they had with Mattie. Such thoughtfulness and humanness doesn't go unnoticed with me, and this helps to explain why these women have a special place in my heart. Lunch was lovely, and we sat outside on the veranda of the restaurant. I thought it was charming, and Peter was a good sport, especially since he isn't a hot weather fan like I am. I guess what today's lunch illustrated to me was the friendships Mattie helped to create for me. We talked to Tamra about friendships and my philosophy since cancer has changed the way I look at the world and people. Cancer has made me experience people on a deeper and more intense level. I wish I could have learned this in some other fashion, but I guess I would feel worse if I was writing each night about my loss and had to reveal that I haven't learned anything from all of this, that with Mattie's death, my heart and mind also died. To some extent there are days that I do feel this way, but then I reach deeply to reflect on who Mattie left behind for me. Some days this simple yet beautiful notion gets me through the day!

After a delightful lunch filled with conversation, I decided to walk around the town and explore the buildings and the shops. It is a small town, so this is VERY doable. Peter retreated to air conditioning for a bit, but then returned outside with me.

Before dinner, Peter and I headed to walk the beach. The sun was out over the water, and everything had a much different feel to it from yesterday's overcast look. Peter snapped a close up on my favorite beach bird, the piping plover. I love these birds, because to me they are like the ballerinas of the bird world. They have long and slender legs, and they move with the utmost grace. 
We returned to the same spot on the beach where we sat yesterday. Certainly there were many other seagulls flying overhead, but I found it absolutely fascinating that while we were sitting watching the waves tonight, a seagull came to sit by us for quite some time. In my mind this was Christobal coming back to say hello. If you think I have lost it with these seagulls, then Peter would agree with you! 
It is funny, on vacation, I used to take pictures of Mattie. Now I land up taking pictures of birds and other sources of nature. Not sure what this all means, other than it gives me something beautiful to look at and concentrate on. However, I do admit that at times I can be funny about this, and I am sure to the average person this may seem odd.

As I was sitting with Peter today, I told him that I remembered how Mattie would call him, "Daddy." I can literally hear it in my head, but that I do not recall so easily how Mattie called out to me. Peter agreed with me that it is more challenging to remember this mainly because Mattie did not usually call out mom or mommy. Like myself, he liked to use cute names for people, and my nickname was "Una Moona." That word or name I can distinctly recall in my head, especially since Mattie had a song about Una Moona that he created and would sing often.

While cooking dinner, I called Ann back. Her cousin, JP, is visiting with her this week, and yesterday while they were driving back from Boston to Virginia, I had the opportunity to chat with them periodically. It was a 12 hour drive, with a ton of traffic. So JP and I had many times to converse along their endless journey. It was touching to hear that JP wanted to talk with me today too, since he got used to our calls yesterday. That brought a smile to my face, as did a text message I received from Mary's (Ann's mom) caregiver today. Mary is concerned about me, the fact that I have been sick for a while, and she wanted me to know she was thinking of me today. What is my point to all of this? I guess the point is as human beings it is vital to feel connected to something and to people, and hearing that I was missed today in some way, was a feeling that reminded me that I am alive.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It is very hard to get back on "track" once your cycle has been so disrupted. It many take a trip to a specialist who can help you to "reprogram" your body and mind to relax, fall and stay asleep. I know there are sleeping pills available, but you might want to try more natural, self controlled methods first if your situation doesn't improve soon. I am sorry you lost your pictures of the gull but I am sure the entire thing must have been hysterical. I can see you and Peter in my mind's eye, feeding this gull, having him respond to Peter and Peter having a conversation with him. As you said, Mattie would have found this all hysterically funny and I can imagine him telling Abbie, Charlotte and his other friends about it, flapping his arms and making the sounds that Peter and the gull made. I've seen shooting stars and so I understand why you were unsure about whether you had seen one. They are beautiful but they are so quick to pass that it leaves you wondering if you really saw them at all. The stone that you saw in the garden is inscribed truly I think. Those who we have held in our arms for a little while, are held in our arms forever. What a lovely way to memorialize a young soul who left sooner than they should have. And a garden is a perfect place for such a stone; it is a reminder that life can rise again even after a season of barrenness. May your life be able to nourish the new, fragile shoots of joy that you find in your days going forward. I hold you gently in my thoughts."

August 15, 2010

Sunday, August 15, 2010

Sunday, August 15, 2010

Tonight's picture was taken on April 4, 2005. This is a follow up to last night's picture. At Mattie's third birthday party, we had a college student perform magic tricks, create balloon animals, and  introduce the children to his bunny, Hobbs. As you can see, Mattie just loved Hobbs and was sitting very still so he would not scare the bunny. What you may not be able to see in the picture though was Mattie was listening very carefully to the instructions that Hobb's owner was giving him. Mattie enjoyed hearing about what the bunny liked to eat and how best to pet him.

Poem of the day: Here and There by Charlie Brown

I was out in the world today
But with you gone it's hard to play
So I sat watching those little birds
And hoping that my prayers are heard
That you are somewhere beyond pain
Where only flowers are brought by rain
And that the moon and sun's lights
Fill your new "world" with beautiful sights
But I'm still here in the place
Where you lost your final race
And hoping someday to meet again
In that place far beyond the pain.

Last night Peter and I sat outside on the deck and were able to stare up at the incredible light show in the sky. The sky by the beach is filled with stars for as far as the eye can see. A sight we never can observe in the city! We sat there for at least an hour, at times chatting, but at other times just taking in the glow of our surroundings. Peter did not tell me, but he was clearly waiting for me to see a shooting star. I did see something flash before my eyes, but I told him I thought it was a bird flying by. He did not challenge me on that pronouncement, but most likely he knew that was NO bird. However, the second time I saw this occurrence I realized that what I indeed saw was a shooting star. A first for me. Something that Mattie never had the chance to see, but I know he would have been in awe. Despite having a relaxing day yesterday, I did not have a good night of sleep on Saturday night. This is naturally very frustrating.

This vacation has provided us with many opportunities to reconnect with nature. From the ocean, the moon, the stars, and today..... birds.

Peter and I spent a good portion of the day sitting on the beach. It was another overcast day, and at times there was spitting rain. Nonetheless, it was lovely to hear the sights and sounds of the sea. This weather is right  up Peter's alley, but for me, it is cold. I was most likely the only one on the beach with a fleece jacket on and towels over my legs in lieu of blankets. I packed lunches for us as well, and what I quickly saw was a seagull had adopted Peter. This seagull literally sat with us the entire two hours we were on the beach. Peter at times was squawking at the gull, and I hate to say it but the gull responded back. It was as if they were having a conversation with each other. We took many pictures of "Christobal," the name I gave this particular gull. Why? Because Peter was feeding this gull the lunch I made him, and this gull apparently liked tomato and mozzeralla salad, including basil, and he also loved fresh peaches. So I felt this discerning gull, needed a special name, so I named him Christobal, after Christopher Columbus. Unfortunately while transferring photos from the camera to Peter's computer tonight, I lost all the photos. I was so disappointed because we captured the many wonderful sides of Christobal, and we even snapped a picture of him talking to Peter. That is what I get for not bringing my own computer, but you will have to take my word for it. This interchange was very memorable, and when other seagulls approached us, Christobal had a fit. He would chase other birds away and became very territorial about us. I can only imagine what Mattie's reaction would have been to all of this. He would have loved it and would have told this story for weeks to come!


After dinner, Peter and I went back outside and walked along the beach. After our walk, we sat on the sand for a while and stared at the water. Our friend, Tamra, who is staying at a neighboring beach, emailed me today and let me know she spotted dolphins. So I was motivated to see a dolphin tonight, despite not seeing dolphins the past two times I have visited Bethany Beach. But patience is indeed a virtual. At 7:15pm, I spotted dolphins. These incredible creatures were doing somersaults and truly performing. They were so quick however, that we couldn't capture any of the three we saw on camera. It was a special sight nonetheless. It was such an overcast day, but while we were on the beach tonight, a glimmer of sun came out and shone on the water. It was a magical quality!

For the past two days, Peter and I have been taking a different pathway to get to the beach. On this particular pathway, we pass someone's charming garden. However, what captures my attention in this garden is a stepping stone that reads, "Those we have held in our arms for a little while we hold in our hearts forever." Each time I see this stepping stone, I feel as if it is calling me. I feel it speaks to my personal loss and tonight I came back and googled this quote. It turns out that this stepping stone is a gift that is sold to people who have lost a child. Somehow that doesn't surprise me, and even if I did not know this fact, I feel a real connection to the person living in this house. I understand the pain that they must feel and I am deeply touched by the stone they have outside for all of us to read and reflect upon. It is a stone that I would like to someday incorporate into my own garden.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I appreciate Nancy's poem especially the line about keeing Mattie''s smile like a warm and comforting vest. That's really all we can do is to carry some piece of our loved one with us to comfort us when we are in need. Beyond that we can watch for and appreciate the signs they send us that they are still connected to us and will be there to welcome us home. It's too bad that the beach towns are all madness this weekend but perhaps some peaceful, quiet time is what you need anyway. Please try to relax and enjoy the time; the dues for this have long been paid and both you and Peter gave far more than your share. I agree with Nancy that death is a paradox, it ends suffering for those who are in pain but it brings pain and suffering to those left behind. As I practice today I send you the thought to allow yourself to immerse in the serenity of the natural world and to let it begin to help you heal. I hold you gently in my thoughts."