MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

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


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



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

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

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

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

August 28, 2010

Saturday, August 28, 2010

Saturday, August 28, 2010

Tonight's picture is priceless! My friend, Carolyn, sent me this picture last night. This picture was taken in May of 2006, when Mattie was four years old. He was attending Ellie's (Carolyn's daughter) birthday party, and having a great time riding the pony! The irony is this picture is hanging up on the wall in Mattie's room. When Ellie sent out her thank you notes that year, with the note came the picture. Mattie loved the picture so much and wanted to remember the party, which explains why the photo is still hanging up in his room. Mattie and I are both pack rats, and I can also report that the flowered lei Mattie has around his neck from the party is still in our home as well! It is funny, this party was over four years ago, yet the picture has evoked so many memories. I am so glad Carolyn took pictures that day and shared them with Ellie's friends, because for Peter and I, only the pictures remain.

Poem of the day: You Won't by Charlie Brown


Your friends they are all changing
Growing big and tall,
Trying out new things
Heading to school in the fall.
But you my son are frozen
There at seven years old.
Always remaining the same boy,
Adventurous, loving and bold.
Sometimes that's what
I think hurts the most,
That your place in the future
Is no more than a ghost.
You never will grow any older
Or have children of your own
I won't be asking you who you are
Talking to on that phone.
No sports, no girlfriends
No tuxedo for the prom
No more hugs for dad
Or kisses for your mom.
You always will be here though
Loved and safe in my memory
And though you had to go away
Those can't be taken from me.

I actually did sleep last night, but I am still so exhausted that it feels like I never went to sleep at all. Peter took on the project of painting our deck this weekend. This is most definitely a project he would have done with Mattie. So I am sure this whole activity is bittersweet. Peter is painting the deck, one half at a time. This is necessary since Speedy Red needs to sit on one half while the other half of the deck gets painted. Needless to say, half of our deck looks MUCH better now. While Peter was working on that project, I decided to finally take windex to our living room windows, and peel off all the gel like creatures Mattie stuck to the windows over the course of a year. We had jelly like fish, dogs, and snowmen attached to the window. However, over time, these jelly like things melt with the sun, and not only were they dripping down our windows, but worse, there were flies and other bugs trapped into the gel. I couldn't take looking at that mess any longer. So I slowly worked on that, and at some point Peter had to help me because this gel like substance was sticking to me and everything else. For me, taking these creatures off the window was hard. It was hard because this is something Mattie absolutely loved. With each season, I would get him these jelly like window catchers, and we would put them on the windows together. Taking these creatures down means so many things, from the simple fact that no new creatures will be replacing these old ones, to a tradition between Mattie and I is now dead. I did keep up the Valentine's day gel like hearts we put up together, and did not have the heart to remove them!

You should note that Peter has been SLOWLY cleaning out the window area of our living room. I know we need the space by the windows to bring our trees inside during the winter, and frankly I couldn't deal with this, so Peter has taken this on. Peter is relocating the things he is moving from the living room to Mattie's room, which is now looking more like a wherehouse than a room. But because Peter has been taking things apart in this particular area of our room, I am seeing things there that I haven't noticed before.

So after my window clean up ordeal, I noticed a plastic container by the curtains. When I opened up the container I found Mattie's clay art work stacked in it. I had NO idea that I put these creations in there, and it was like opening up a treasure chest today and finding gold. Mattie's art work in a way is priceless, because it captures his spirit and creativity. I must admit though that these art pieces did not look familiar to me. However, they were VERY familiar to Peter, who helped him create most of them in clinic. So I will share with you the new found pieces.


During the beginning phase of Mattie's treatment, he created a set of lovely hands with Peter in the Lombardi Clinic. What you may not be able to see, is that each hand has a letter on it, or in other words, the hands spell out M...A...T...T...I...E!









The yellow hand with the letter, "I" on it, was literally the size of Mattie's hand. He traced his hand in clay! I did not even know I had this special gift, so you can imagine my surprise when opening up this container.












This creation I distinctly remember! This was Mattie's version of an outdoor movie theatre. The green thing on the left is the movie screen. Notice that the figure in yellow is a movie goer, with a VERY large head. Mattie called this fellow, "Big Head!" This theatre and Big Head actually took many visits to the Clinic to create. With each visit, Mattie would ask for his piece to come out, so he could add to it. In fact, we have several other clay pieces featuring "Big Head." Big Head became a clay series for Mattie.




I tried to take a closer shot of "Big Head's" face. Hopefully you can at least see his eyes! Mattie always joked about the poor person who had to sit behind "Big Head" in the theatre!














This was Mattie's version of a clay sea turtle! Somehow the camera doesn't do justice to the vibrant colors Mattie selected for the turtle's shell!




Despite chaotic traffic today due to a rally and a protest, I managed my way out of the city to Ann's house and then to Mary's. Ann's daughter, Abigail, has a new pet, a betta fish named Poseidon. Poseidon needs to be fed each day, and I could bring the fish to my home, but Patches is one clever cat, and Poseidon would be one tasty snack for her! I must admit I can take care of mammals, but fish are NOT my forte, especially Betta fish. Some of you will recall that my parents bought Mattie a red Betta fish on September 6, 2009. On September 7, 2009, this fish died, right in the PICU! Thank goodness Mattie was too out of it to notice, because he would have been crushed, since he really wanted a fish! In a way this fish was his last request. I can't help but worry about Poseidon's safety after my last Betta fish experience. I went back to the blog tonight because I was racking my brain trying to remember the name of Mattie's fish. I searched through the appropriate dates, but what I discovered was I never actually told our readers what the name was, most likely because I was trying to down play having a fish in the PICU! Peter reminded me that Mattie's fish's name was "Super Red." Super Red was a beautiful red color and looked like the picture of health. However, when the fish died, I felt this was a bad omen for things to come for Mattie. Unfortunately I was right!

I spent some time with Mary today, and she seemed very tired. So tired that her caregivers did not bring her to the dining room table for dinner, they served her dinner by her comfortable chair. I sat with Mary and helped her eat. I noticed Mary's caregivers was primarily feeding her, rather than allowing Mary to feed herself. Sometimes I too land up feeding Mary, but only after I have assessed that she looks tired, and is struggling. In a nice way, I told the caregiver tonight that I would take care of Mary while she was eating, and freed her up to work with other residents. Instead of standing over Mary, like I observed her caregiver doing, I sat down next to her. I held the bowls of food, and placed the fork in her hand. Yes she needed some assistance, but assistance is better than being depersonalized and hand fed. Mary perked up with conversation, and after dinner, I put Mary's hand in a basin and cleaned her wedding rings. Mary's rings no longer can come off her finger, but she has asked me to clean her rings for a while now. So today, I finally decided to bring ring cleaner with me, a tiny brush to scrub the ring, and a basin for her to put her hand in to catch all the water and cleaner. Needless to say, Mary's rings are sparkling and she told me the story about how her husband picked out her engagement ring, and that her wedding band is her mother in law's. It was a project that got Mary talking, retelling history, and also enjoying the beauty of her ring, a symbol of her marriage. As she said to me tonight, this is the last remaining thing she has that her husband gave her. I understand the need to cling to things when everything else is gone.

As I was driving home this evening, and crossing over the Memorial Bridge two things caught my attention. George Strait's song, "The breath you take" came on the radio (a very meaningful song about not getting caught up with the everyday tasks, but instead enjoying and appreciating the moments that take your breath away) and overhead, three Canadian Geese flew by. Somehow these geese symbolized our family of Peter, Mattie, and I. This sight was indeed a moment that took my breath away! Peter and I had a nice dinner together, and we listened to songs from various musicals in the background. The music got us talking about the shows we have seen over the years, and it turned out to be a good distraction for us.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What you wrote about Mattie's story is so true. So many are caught up in it even though they may never have met him or in some cases never met you or Peter face to face. Such can be the power of words to invoke the feelings of love, dedication and loss. And the pictures you select are so compelling as well It would be hard for anyone who followed this blog for even a short time not to feel connected in some way. The pictures of you with the girls is really great and as you wrote they both have really grown this summer. I understand what you said about not wanting to be 12 again; if you had to go through this again, who would choose that? If you knew you could change the outcome, that might be different, but just to live it all over again....I am not sure too many of us would be willing to do an exact replay of our own lives either. Today as I practice I send you my strength to help you continue to get well and to find a way back into a more healthy waking/sleeping cycle. I hold you gently in my thoughts."

August 27, 2010

Friday, August 27, 2010

Friday, August 27, 2010

Tonight's picture was taken in June of 2009. In fact, I just found an electronic photo file that I did not know I had, and as I came across it tonight, I realized it is filled with wonderful pictures. In this picture, Mattie is sitting on our kitchen counter. He was my kitchen helper, and that morning he helped me make homemade waffles. He was good at helping me measure out the flour, eggs, baking powder, etc., and then mix in all the ingredients. Mattie loved waffles, and at times he couldn't wait to taste the final product fast enough, and would start eating prior to making it to the dining table. Notice the fork Mattie was using here as well. It was a LEGO fork that he received from Team Mattie, and naturally LOVED!

Poem of the day: The ways I miss you by Charlie Brown


Sometimes I miss the sight of you
But right now it's how you felt
The softness of your cheek
Always made my heart melt
I miss the fun you brought
Into our lives each day
And how you taught me
Almost anything can be "play"
So I am just very lonely
And I can't sleep at night
There isn't much I wouldn't give
To see you in bed, tucked tight.
But that's a sight I won't see again
'Cause you are gone from our life
And the pain that your absence causes
Well, it cuts just like a knife.
I keep asking myself when
Will the pain ever get any better
And I fear I know the truth
That I will stop missing you never!

Ann's cousins (Helen and JP) visiting from Boston were leaving today, and I had the opportunity to have breakfast with them. Our friend, Tanja, and her daughter, Katharina, also joined us, and we were quite a large group at the restaurant, with a whole lot of energy and things to say. I have met Ann's cousin Helen before, perhaps two years ago, and with each visit, I have gotten to see her and get to know her better. Helen and I have a lot in common, we are both originally New Yorkers, we are only children, we married men who grew up in Massachusetts, and we love animals. Helen and I email each other occasionally and you may find it interesting to know that Helen is an avid blog reader. Helen started reading the blog before we really knew each other, and she never met Mattie in person. However, Mattie's story impacts so many of us, it is a human story, and therefore no personal encounters are really necessary. So much about Mattie's spirit can be captured through pictures and the stories I hope I have captured over time in the blog.

As my parents went back to Los Angeles on Thursday, Peter and I are once again in DC without family. Therefore it was nice to have this time with Ann's family to help ease the transition. Ann's cousin, JP, Tanja, and I had a good time joking around with each other today. JP is one of these lucky people who has a very high metabolism, and can literally eat you out of house and home, and yet be as thin as a rail. I have enjoyed watching him put away amazing amounts of food over the course of two days! Ann took JP, Helen, and I shopping for DC t-shirts today, so that they could bring souvenirs back to Boston. On the car ride there, I am not sure how we got into talking about Mattie's final hours, but we did. As Ann was describing what she saw in Mattie, the day before he died, I was recalling the picture she was painting. A picture that I am not sure will ever fade from my memory. It is hard to forget a bed filled with pain syringes everywhere, screams of pain, the inability to breathe, the infamous death rattle sound coming from Mattie's lungs, and of course the sound of Mattie dying and his monitors all beeping because his vitals all flat lined. This memory flashed back to me, and unlike my usual frozen state, I started crying.

Later in the afternoon, just before we said good-bye to one another, Tanja took some pictures of me with Katie (Ann's oldest daughter) and Katharina (Tanja's daughter). Both girls have sprouted up in height this summer, and they are getting a kick out of the fact that they are as tall as me. I joked with Katie, who is a half an inch taller than me, and asked her since I am shorter than her, perhaps we should switch ages. Katie laughed, but later in the day I thought about this notion. Would I really want to be 12 again? Would I really want to relive cancer again too? The answer was NO! Being 12 again was not appealing, and I guess that response within myself wasn't what I expected.
The funny picture with the girls acting goofy......
From left to right: Vicki, Katie, and Katharina

The after picture, with the girls smiling.......




I would like to end tonight's posting with a message and a poem. The message is from my friend, Charlie. Charlie wrote, "I think that you may have to take some action to help your sleep situation. You have "learned" not to sleep at night and now you need some help in relearning that skill. You might want to talk to your physician about short term sleeping aids or else trying meditation or perhaps Valerian, an herb which some people find helpful. I've read lots of articles on sleep problems and the majority of them are very strongly in favor of developing night time rituals and sticking to them as a way of reminding yourself that it is time to rest. You do need to do something about this problem as it will continue to impact your immune system and cause you to become ill more often as well as possibly setting off your headaches. Given how little sleep you are getting I am amazed you can function but I am glad you are still getting out and visiting people. I know you will be seeing Mary next week in Ann's absence and that she greatly appreciates your presence in her life. I am glad your parents made it home safely; flying is no longer a fun thing to do. As you go into this weekend, try to come up with some night time calming rituals you can do to help you relax and rest. I hold you gently in my thoughts."


The poem is from my friend and colleague, Nancy. Thanks Nancy for taking my Mattie feelings and encounters seriously!

A PASSING GLANCE by Nancy Heller Moskowitz

As your grandparents' left today, I sat and wondered
What you would be doing as we waited?
I realize that I do that a great deal,
Wonder, what if?
As I drove home, I stopped to check
And for a flash, I felt you there.
Sitting in your seat with a smile upon your face.
I hold on to this vision for only a moment,
Afraid to spend more time, reflecting
For the reality is more than I can bare,
That you are not really there.

August 26, 2010

Thursday, August 26, 2010

Thursday, August 26, 2010

Tonight's picture was taken in July of 2009. I have posted this picture a couple of times before on the blog. I like this picture for so many reasons. The primary reason I like it is because it captures Mattie's beauty, strength, and also hope. At the time of the picture we thought Mattie was done with treatment and was headed toward rehabilitation and perhaps returning to school. What a pipe dream, now that I know the reality, but when fighting cancer your mindset changes, from future oriented, to a one day at a time philosophy. In this picture, Mattie is sitting in his wheelchair in front of the Lombardi Clinic art therapy statute. A statute comprised of clay art pieces that nurses and patients created with messages on them. Somehow this picture makes me smile, because to me there is a ray of sunshine that is captured. It captured a feeling between Mattie and I at that very moment, and it captured our faith in a process we hoped would work and get him better.


Poem of the day: Changes by Charlie Brown


How did you do it
In living and loving and leaving
You changed so much more than
Just those around you.
Butterfly sightings
Tent caterpillars and forget me nots
Legos in the window of the toy store,
All are reminders of you.
You are a piece of memory
An unforgettable part
Of the lives of those who were
Touched by you.
Even for us who knew you
Only at the distance
Or perhaps never in person
At all.


I am not sure why night time is a particularly tough time of day for me. I am thoroughly exhausted, I look tired, and yet I am unable to sleep. Peter came home last night, and was so tired from his business trip and from driving. He fell asleep, but he woke up later on in the night, because I was still up and he was concerned. For the first time yesterday I had a vivid picture in my head of times I would rub up against Mattie's cheeks. We would do that often with each other, and there is nothing like a child's skin. It is a pure soft, a soft untouched by time and the elements. I rarely allow myself the times to think about those tender moments, but I was able to yesterday, and this naturally made me sad. I could picture looking into Mattie's eyes as well last night. As I was driving home tonight, I looked into my driver's side mirror to merge onto a highway, and I also looked over my shoulder. As I did, I swear I saw someone in the back seat with me. In the place Mattie would sit. He always sat in his car seat right behind me, and it was an eerie feeling tonight as I was driving. It only lasted a split second, and it is most likely my mind playing tricks on me, but I know what I felt.

After a four hour delay at the airport today, my parents finally made it home in one piece. It was a long day for them. I dropped them off at the airport this morning, and then spent the rest of the day with Ann and her family. Ann's cousin, Helen, is visiting from Boston. So I got to see Helen, Ann's cousin, JP, and Mary (Ann's mom). While together, Ann's daughter, Katie introduced us to a computer program in which she can literally do fashion design. I found it fascinating watching Katie putting colors together and also watched her layout a page, as if creating a cover to a magazine. I did not really focus in on what Katie was doing at first, until she pulled me into the process, and as I was watching her create designs, I noticed that she has an eye for color, and for design. So she captured my attention this afternoon, and I enjoyed seeing her imagination unfold.

As always, I enjoyed my time with Mary, and was very touched to hear that one of her highlights to her day today was to see me. Mary and I understand each other, and I appreciate Mary's sensitivity and her assessments of certain situations and people. As Ann and her family are headed out of town tomorrow, Mary and I will be seeing a bit of each other next week in Ann's absence. After work, Peter came over to Ann's house and we all had dinner together. We had a lively time with each other, and in many ways today was an excellent distraction from my sadness and exhaustion. A break which is much needed.

I would like to share two messages with you tonight. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "We are in Michigan now, visiting family. I had hoped to get a picture of the lighthouse at sunset to send to you...but it rained last night and we missed it tonight. Just a note to say I am thinking of you today (Wednesday) and every day."

The second message is from my friend, Charlie. Charlie wrote, "I am glad your parents are feeling better and that they had the chance to spend some time with you before heading back to California. I am glad that Peter is coming back today; while I know you manage fine alone, it is better to have company in the house (besides Patches). I love the story of the butterfly and Rocket; every time I see a butterfly now I wonder if this will be a "sighting" or an "encounter"? We have a lot of flowers in our yard and the butterflies love them, so there tend to be a number of them around on any given day. However, sometimes one will do something unusual or your eyes are drawn to one in particular and you just stop and keep watching to see what will happen. That's happened more times this summer than I can possibly explain. As for the sharing by your waitress, I think that you resonate differently than the average person now. I think that people sense you are more caring, open and sensitive than most and they respond to that with information that they would not normally share with others. That's a huge gift for a counselor to have and perhaps you will find a way to put that skill to use in the future. As always, I hold you gently in my thoughts."

August 25, 2010

Wednesday, August 25, 2010

Wednesday, August 25, 2010

Tonight's picture was taken in July of 2009. Mattie, along with Peter's mom, decided to paint our deck together. In fact, that was the last time our deck was painted, and despite that the paint is all chipped away this summer, Peter and I have yet to paint over Mattie's work. In reality, Mattie was a fantastic painter. He was methodical, neat, and paid attention to details. He was my kind of painter, and he, Peter, and I painted the deck many times over the years. In fact the first year we did this, he was just a little guy. Maybe 3. However, Mattie insisted he wanted to help me. I figured he would make it painting for about five minutes or so and then would be bored, and want to move on. But on the contrary, even at that age, he remained focused and on task. He was a good little painter, and Peter and I miss our helper this year. He always inspired us to take on this task, especially since we would spend so much time on the deck together.



Poem of the day: Tuesday, Once More by Charlie Brown


Tuesday is here.
A reminder
As if I needed one
That you are gone
Another week.
Sometimes I look back
To where we were
A year ago
And I am horrified
At how it was.
I could not wish
That upon you
Any longer
No matter how much
I miss you.
I know you tried
To stay in spite
Of all the pain,
You loved us
That much.
I will use that love
To help me through the winter
Until the spring
Blooms again
In my heart.

Today is a day of transitions in many ways. My parents are getting ready to leave tomorrow morning, and Peter is driving home from New Jersey. My parents are both feeling better and have readjusted to our time zone. Fortunately they stopped over in DC for a week to recuperate before flying directly home to Los Angeles.

My parents and I went out to lunch today with my friend, Tamra. Prior to meeting for lunch, Tamra sent me a lovely e-mail about her most recent butterfly sighting in her neighborhood. In fact, her dog, Rocket, seems to attract the attention of butterflies and a beautiful monarch flew down on Rocket's back yesterday and literally stayed on his back for several blocks, from the park to his house. I told Tamra, Mattie is all around us! Tamra asked me if I was interested in building a butterfly garden. I told her I was, and she plans on connecting me to a wonderful horticulturalist at the US Botanical Gardens, who is willing to work with me. Now where I will create this garden is up for debate, but I would love to learn about the plants that attract these fine winged creatures.

Tamra was a loyal member of Team Mattie, and when my parents would come into town to visit Mattie while he was battling cancer, Tamra always made the time to visit with my parents. So over the course of two years, they all became friends. What I will never forget is that Team Mattie did not only care for Mattie, but Mattie's entire family. Frankly prior to cancer, I wasn't sure that the beauty and cohesiveness of such a Team was possible, but I learned a lot in two short years. To me this Team is noteworthy, and will remain alive always in my mind and heart, because living through cancer was impossible, but living through it without the support of this incredible Team would have been unthinkable.

We ate today right by the Potomac River. We could see boats and planes taking off at Reagan National Airport. Our waitress introduced herself to us, and her name was Mary. Mary sounds like she has had a difficult life and explained to us that she was an actress and a hairdresser, but had a traumatic experience (which she did not elaborate on), and was unable to return to either profession. Now if I heard this story prior to Mattie's cancer, I may have thought perhaps it was inappropriate of her to share this information with her customers, but my perspective is completely changed now. She is human and was making a human connection. I relate to traumas very well, and give her credit for admitting she survived one and is trying to find her way back into the world. This is just one of many ways cancer has changed my life. I have a need to connect with others on a more deeper level, and small talk for the most part no longer interests me. We covered many topics over lunch, and I am happy I have been able to connect my parents with some of my friends this week while they have visited.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Recovery from cancer treatment takes a long time. First, there are the drugs and/or radiation that cause havoc in the body and then there are all the sleepless nights of worry, pain and illness. Since you went through every step of that with Mattie, of course your body is still recovering just as your heart and mind are. The body (our physical self), our mind (the mental self) and our heart (our emotional self) are the three sides of the triangle that make up who we are. When any side (in your case, all sides) are damaged, it takes time for healing to happen. Love, rest and creative "work" for the hands and the mind are the keys here but like any other medication or therapy, they take time to work. Learning to live again in this world is like physical therapy after an accident. At first it seems impossible that you will ever do it. You put all your weight on the bars when you stand and even so, just staying up is incredibly exhausting. Slowly you learn to put one foot in front of the other and move, but the weight is mostly supported by the equipment until eventually your body is strong enough to support itself. The scars remain, to remind us of what we have achieved in the process. We function again and yet, we are never the same even if no one sees our scars. Just as Mattie's scars were his badges of courage, so too are your invisible scars badges of honor and courage for helping him fight and then having to do the even more difficult work of continuing to live a meaningful life without his physical presence. As we come up on the first year of that work, I honor your efforts and your scars. I hold you gently in my thoughts."

August 24, 2010

Tuesday, August 24, 2010

Tuesday, August 24, 2010 -- Mattie died 49 weeks ago today.

Tonight's picture was taken in August of 2009 in the Georgetown Lombardi Clinic. This photo seems to be saying so many things. As you can see Mattie needed oxygen, and yet despite that was sitting at the art table ready for an activity. You can also see he has two cups to his ears. Most likely he was giving those around him a subtle message that we were being TOO loud. He wanted to shut us all out. As I observe what I am doing in the picture, I see that I was flushing out Mattie's central lines. I had to struggle to remember why I would be doing this, since in the hospital, the staff was required to do this, and really wouldn't allow me to take on these responsibilities. Ironic, since Peter and I were the ones doing this at home. However, the only thing I can conclude was that Mattie was hooked up to an in-home pain pump in clinic, and therefore, this was the reason I was allowed to take on this task in the hospital. I always travelled around with syringes, alcohol pads, and heparin. It was just standard issue for me back then.


Poem of the day: The Illness of Grief by Charlie Brown


Why does grief cause illness
I think the body catches it
From the heart.
There is a reason for the term
"Heartsick" and I,
Have that and more.
There are scientific explanations
About immune systems and
Lowered resistance to disease.
What I know is that,
While the heart weeps,
The body cannot heal.
The antidote to this is joy.
A medicine my heart cannot yet accept
And use except in measured doses.
I will be well
When my heart hears your name
And I laugh for the sheer joy of having known you.


As Mattie died 49 weeks ago today, I find myself being very reflective. I read the blog from August 24, 2009 today, and it brought back so many memories of the pain Mattie suffered toward the end of his life. In fact, last year on this day, Mattie had a rough time filled with crying and screaming from pain. Until Peter and I replaced his fentanyl pain patch, Mattie's day was simply torturous. You have to wonder how he made it from day to day, and in turn I have to wonder how Peter and I made it as well. Frankly when I look back at what we lived through, and now survived, it is absolutely no wonder that my body is so exhausted and depleted. Cancer has affected me physically and psychologically, not unlike Mattie.

True to form, Patches (our cat) made sleep impossible last night. But I was so tired and not feeling well, that I was able to wake up, deal with her, and go right back to sleep. Patches has been with us for 12 years now, and what you need to understand is that she was an abandoned cat. Her previous owners threw her out on the streets of DC. Patches was in bad shape when she came to us, literally walking to our doorstep. She was shot by a bb gun, and was quite ill. So we have a long history together.

My mom saw the doctor today, and continues to improve with each day. We spent part of the day together, and then literally we all rested midday because we are suffering from different types of exhaustion. I rarely nap, but I shut down for an hour.

Pictured from left to right: Ziad, my mom, Vicki, Amany, and my dad

This evening, we met my friend, Amany, and her husband for dinner. Amany and I went to graduate school together, and have been friends and colleagues for over 15 years. We had a nice time chatting about a host of things, and we talked about clinical issues and the evolution of one's career. Amany reminded me of some advice I gave her years ago, and as she was talking, I remember saying the words that came out of her mouth. It was actually touching to hear that she remembered what I said and reflects upon it. I suppose we all want to know that we have a purpose and what we say matters and helps others. So I appreciated her acknowledgement of my professional contributions. A life I no longer live, and in fact, it seems like another lifetime ago. Amany and I also spoke about how I was doing, and some of my fears around the first anniversary of Mattie's death. I am not sure what I should do on this day, and like I told my friend, Nancy, I am hesitant to do anything very public oriented. To me this day is a personal day, and I agree with Amany, it is about getting through the day. I do think anniversaries are hard, but frankly I think every day is hard, not just one particular day in general.

I do know internally that on this anniversary I need to do something related to nature. I am not sure what that means yet, but I do know that I want to visit Mattie's tree and add a gift to the tree. I have already contacted the Magic Man, aka Bob Weiman (Mattie's lower head of school) to alert him to my desire to attach something to the tree. Bob graciously said YES, so stay tuned as I work on these details.

The gardening ideas for the fall and winter keep coming in! My lifetime friend, Karen, sent me a link to winter plants last night. Frankly I had no idea that anything other than evergreen-like things grew in the winter! So I am being introduced to a whole new plant world. Though as Karen points out, gardening in the cold may not be up my alley.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Your parents are very special people. I had the privilege of meeting them during the course of Mattie's illness and I can say that talent, caring and love "run true" in your line from your parents right down to Mattie. It is no wonder that Lorraine, the waitress at the restaurant was so taken with your parents, it would be hard not to connect with them. It was especially nice of the staff to extend their special caring to you as well and provide a dessert that would appeal. I am glad that others have taken up the issue of the bulbs/gardening with you. I think that you will enjoy designing and planting a special garden to bloom in the spring. I know it will do your heart good when you see the garden in its glory after all your planning and work. One of the things I most enjoy is that it tends to invite the early butterflies and bees to arrive in great numbers, another reminder that life comes full circle. On this, a Tuesday, I send you my strength to help you get well and make use of your day. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "It does amaze me how much you get accomplished, in a day, especially when you aren't feeling well. I, too, am glad that Mom and Dad, along with Patches, are with you while Peter is on his trip. It was so good to connect with him yesterday (even if it was just email). I know that we will get to see each other during one of his trips to NJ. Maybe I can get him to our Roosevelt Island or you might come with him and spend the day with me. As you know, it is common for our sleep patterns to be erratic when in turmoil. It is just a few short weeks until the 1st anniversary of Mattie's death. You have so much on your plate and want it all to be done well, A DAUNTING TASK! My computer put the last sentence in caps, not me or maybe Mattie was just speaking to us both. Another thought regarding your not feeling well. Do you know Louise Hay's work? One book that I go to often is You Can Heal Your Life. Here she talks about positive and negative self talk and how it effects the body. I just looked up Colds. It signifies: Too much going on at once. Mental confusion, disorder. Small hurts ( and from me, Big Hurts). She redirects this with the following affirmation: I allow my mind to relax and be at peace. Clarity and harmony are within me and around me. I know that clarity and harmony are distant thoughts with Mattie gone. The grief you have will take forever to heal, yet, I hunch Mattie doesn't want his Mommy to suffer more than she is. He would not want you to be sick. He would want you to take good care of yourself as you did him, even though the results were devastating. You know what they say in AA: One Day At A Time! And then there are tears! I believe that colds keep us from letting our body naturally heal because we block up our passages, with the cold, so there is no place for the tears to get out."

FEAR AND SADNESS by Nancy Heller Moskowitz

When fear meets sadness, they often say:
I wonder which one of us will rule the day.
It's my turn, no, it's mine!
A battle that I do find,
Causes my mind to feel no rest.
For fear, wants me to be afraid,
That I shall forget you.
SOMETHING I WILL NEVER DO!
And sadness, says the hurt's too deep,
That I cannot bear,
The pain and loss of not having you.
Now anger shouts; DON'T FORGET ME!
I need to have my say.
I will keep the battle going, each and every day.
However, another waits patiently in the wings,
Joy.
Allowed to come and go sparingly.
Is there shame in seeking joy?
It doesn't change the meaning,
Of my life, my loss.
It wants me to remember,
To live each day with thought and care,
To share myself with those who dare,
To stand up and say, I MISS YOU!

August 23, 2010

Monday, August 23, 2010

Monday, August 23, 2010

Tonight's picture was taken in August of 2009, right in the middle of our living room. A room which was transformed over one year's time period from our common living space, to literally a Lego museum and workspace. That particular night, Peter resumed his usual position on the floor to build a Lego structure with Mattie. At that particular point in time, you could see that Mattie was having trouble breathing, and was on oxygen as well as IV pain pumps at home. At times I try to imagine the immense level of discomfort and pain Mattie was in, and yet despite this, he wanted almost desperately to play. He certainly had his challenging moods and moments where he would shut down from talking and communicating, but for the most part, Legos were our therapeutic tool. These were tools that worked for all three of us, it kept us busy, stimulated, and engaged with one another. I wonder if Legos ever realized the true value of their toy!?

Poem of the day: Missing you again by Charlie Brown


I missed you yesterday
This is not news
And I will miss you
All the tomorrows
Of my life.
However, in the today of my life,
While I miss you,
I invite you to visit.
To be with me in spirit
And help me learn to take joy
In the things you loved.
It is so very hard without you.

I had another problematic night of sleep, and I seem to be sick yet again with another head cold. I practically think I was sick for most of July, and August hasn't been much better. I now get up periodically through the night and can't seem to sleep straight through until the morning. Poor Peter is used to me getting up and down now, and sometimes I get very frustrated and land up turning on the TV. Needless to say my movement mobilizes Patches, and then it is a domino effect with everyone being up at odd hours. This morning, I woke up again at 6am, but this time, Peter escorted me back to bed and encouraged me to sleep.

My parents and I went to the mall together today. We had lunch at one of their favorite restaurants, and while there, they introduced me to Lorraine. Lorraine, works at the restaurant and got to know my parents over the year Mattie was in the hospital. After they would visit us in the hospital, they would sometimes go out to eat, and Lorraine learned about our family's story over the 15 month ordeal. I have met Lorraine once before, but today, we had an opportunity to chat. She loves my parents and literally sat down at the table with us to chat. Lorraine gave me a big hug and clearly she is touched by my story, and even made me a special dessert today with baked apples. I am a fruit fan, and especially love cooked apples, so she found a way to my heart, especially since I sound terrible and my head is so stuffed up.

My mom and I walked around the mall for a while, but then we headed home. I just feel miserable and need to figure out how I will get myself better. As Ann reminded me today, I have been on antibiotics literally for over a month, and somehow this isn't helping.

This evening, I cooked dinner for my parents, and Patches was staying close. I know was a rude awakening for her when Peter didn't come home tonight. As of 8pm, Peter safely made it to his destination in New Jersey! Despite not feeling well, I did get outside to our garden and watered today. I appreciate some of you brainstorming ideas with me about planting bulbs in the fall, to keep my gardening focus alive and well. I think it is a great idea. I haven't planted bulbs in a long time, but I welcome this challenge and then will be awaiting the magnificent outcome in the spring. My friend, Carolyn, and I have been chatting about bulbs and things to plant in the Fall, so I appreciate the fact that so many of you are listening to me and actually understanding many of my fears and sadness.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I hope your mom is beginning to recover from her illness. These transitions from one climate and time zone to another are harder than we think sometimes. I am glad they are there with you while Peter is gone for a few days. While I know you cope just fine alone, it is nice to know that someone is in the house with you, although it seems Patches is quite willing to play the role of the abandoned sweetheart while Peter is away. I am sorry she disturbs your already precarious rest; perhaps the vet can suggest something. There are also natural anti-anxiety pheromones that can help with animal anxiety. It seems that JP has been a "light" in the shadow of grief for you these past few days and I am glad you got to go out to dinner and enjoy his sense of humor. As always, I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I loved this story about the bug. What a sense of humor to pick one of the uckiest bugs and make a big one for you and then to give you the big fly swatter! Mattie thought of all the conditions and didn't hesitate to keep humor in your lives in spite of his illness. Bravo, Mattie. I have been thinking of you all weekend as another week , since Mattie's death, comes to an end. I was reflecting on your comments regarding his visit with you during the show. You learned from Mom to give to a child even when one is not feeling well. That is what you did every day of Mattie's life and especially during his illness. She continues to do this as she went to the show on Saturday evening just because you asked. That is what Charlie and I call a mitzvah. and being a beautiful, generous parent. I am glad that you enjoyed the show a second time and this time Mattie joined you for part of it. I haven't seen it in NY yet and now am more tempted than ever. We have spoken of Sept. 8th and what Peter and you might do on that day to memorialize Mattie. Although it is very close to this important date in your lives, I did think that the Foundation might sponsor a Lego contest. I thought the store might give a portion of the money taken in and there could be a nominal entrance fee with a prize for the most creative Lego creation. There could be different levels of competition and each group would get a certain amount of Legos and then go to town. As you know, rituals are very important to us at any time. I have learned that they are even more important when remembering a loved one. That is why I am confident that Peter and you will come up with one unique to Mattie and you. As you have shared with all of us, in pictures and stories, Mattie was very special. Each person that has been in his life has been touched by his being. I do wish you more peaceful days and nights as you spend this day with your parents. With love always and in all ways."

August 22, 2010

Sunday, August 22, 2010

Sunday, August 22, 2010

Tonight's picture was taken in August of 2009. Mattie was home and one day Peter and he decided to get creative while I went out. Out of construction paper, they made me a BIG surprise! I asked Peter about this roach today, and he told me the story about its design. Mattie naturally wanted to see me jump and have a reaction upon my return home, so he brainstormed the idea of creating a huge roach, with a face and smile included. Got to just love his sense of humor despite being so sick, on pain killers, and oxygen. To this day, this roach hides behind our television, but I frankly did not remember the story behind it, until Peter refreshed my memory. Also notice that Mattie was holding a huge fly swatter in his hand. Ann found these fly swatters, and we used them at Mattie's birthday party, which he absolutely loved. When Mattie showed me the roach, he suggested that I could use the fly swatter to squash it out. As you can see in the photo, he was cracking up from the whole notion! 

Poem of the day: Fragrance by Charlie Brown


Was that "message" from you?
Were you there with me?
I felt you so strongly but
My mind says, "how can it be?"
I am sure you came
To let me know you're okay,
And in the way of your humor
You picked the most perfect play.
It was during a song,
Accompanied by an impossible dance
I recognized that fragrance,
This was certainly not by chance.
I'll remember this happening
When I was so lonely and sad
You sent me your message
For that I am glad.
I have to believe
You are out there somewhere,
And until we meet again
I must try not to despair.

I continue to reflect on the fragrance that wafted passed me at last night's performance. Between Karen and Charlie, we have dialogued about my feelings on this throughout the day. It is hard to understand the things we can't explain, but I appreciate the fact that my friends have been open to the possibility of me connecting with Mattie last night. Perhaps I experienced this because I have been going through a hard time, and on some level, I needed a minute of peace from my feelings. I am not sure, but when I told Peter the story, he did not bat an eyelash. He knew exactly the fragrance I was referring to, and as Charlie mentioned to me, it is interesting that I did not smell a newborn baby smell or a smell of Mattie during his well years. No, instead the smell that grabbed a hold of me last night, was unique, so unique that I have never smelled this fragrance before Mattie had cancer, and after he died, I never smelled it again.

Peter and I had lunch together with my parents today. At lunch we exchanged gifts. Gifts they brought back for me and gifts we got them from our beach trip. Through the exchange it was fun to hear about how the gifts were picked and where they were found. As always we had a lively lunch, and unfortunately my mom continues to feel under the weather.

Peter is headed to New Jersey on Monday and will be there for three days on business. As he has a bag out to pack some things, Patches (our calico cat), is getting very anxious. Patches is very attached to Peter. My joke with Peter is I am not sure who will have a rougher time over the next three days, him or myself. When Peter is gone, Patches loses it, and wakes up at 3am, and literally howls and roams around. She makes sleeping very unpleasant, and mind you I am going through a period right now where sleeping is very difficult for me anyway. So between Patches sleeping schedule and mine, there may be only one of us standing on Wednesday night when Peter returns. At the moment, Patches has jumped inside of Peter's bag, and I am encouraging him to take her with him.

Tonight we all went out to dinner with Ann, Bob, and JP (Ann's cousin). We went to Mattie's favorite restaurant, and I can't help but think and reflect on Mattie when I pass the koi pond in the front of the restaurant. Before having dinner tonight, Peter snapped a picture of me with my parents.                      






Peter and I had the good fortune of having JP sitting between us at dinner. JP has a very good sense of humor and at times he simply had me cracking up. I appreciate his friendship and most likely doesn't realize that seeing him means as much to me as it does to him. Rarely are Peter and I animated these days, but with JP, we stepped out of our shells for a bit, and joked with him and each other.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Sometimes all we can do, is to do something whether our heart is in it or not. Judaism says it is best to "believe and to do" but failing that, we should still "do" and eventually the belief will come. And if it does not, what needs to happen will happen anyway. This is what the Rabbis tell us about prayer, about charity, about doing mitzvahs (good deeds) and so on. It is certainly easier to "do" if you believe but it is important that you "do". I use this as my mantra when I am sad or unmotivated; I know that people depend on me and so I pick myself up and I "do" what needs to be done. Usually somewhere in the process I feel better but even if I don't, at the end of the day, I have accomplished something. Some days will be easier than others and some will be gotten through only by force of will but if it is at all possible, get up and "do" something useful/productive/for someone else. It helps more than I can say. I know you are enjoying Ann's garden right now and that you are not looking forward to the end of the growing season. But it isn't the end really, it is a rest time for some and the fall is a good time to plant the bulbs that will give us the spring flowers we love so much. They need the touch of the winter's cold to be able to bloom in the spring. Perhaps you can take some cuttings so that you can restart her garden in the spring. Coleus is easy to root and makes a nice winter indoor plant that can go right back out in the spring. Think of bedding her garden down for a long winter nap so that it all can come back healthy in the spring. As for your experience in the theater, all I can say is that smell is one of the very strongest memory links that we have. It lights up not just the olfactory section of the brain but those involved in all sections where memory can be stored. It is truly a transporting experience. While the fragrance is probably not the one you would have chosen, it is indeed unique to Mattie and leaves no doubt that his spirit is still with you. I hope you are able to draw on that when you need to. I hold you gently in my thoughts."

Saturday, August 21, 2010

Saturday, August 21, 2010

Tonight's picture was taken in August of 2002. Mattie was four months old. This entertainment saucer was sent to me by my college roommate. When it came in the mail, my first reaction was.... are you kidding me, where am I going to fit this? But this saucer became one of the tools of the trade while raising Mattie. Mattie LOVED it, though I must admit the first time we placed Mattie in the seat he was frightened out of his mind. However, after that initial greeting, he took to it like a duck to water. He loved spinning around, moving the parts on the saucer, and trying to stand. Peter just reminded me tonight, when Mattie sat in this saucer, his arms would be up in the air typically over his head and his fingers looked like tentacles capturing every sight and sound and absorbing it inward. It was a precious sight to see and remember. 

Poem of the day: Now and Then by Charlie Brown
Right now my heart
Is so full of pain
It's been almost a year
How does one stay sane?
Is there an end,
To the grief one can feel?
Is there a point when,
Fleeting happiness becomes real?
I don't know how
For as yet I can't tell.
I'm still living here
In my own private hell.
My friends and my family
They knock at the door
And try to help me see
How to get up from the floor.
Looking backward hurts
But going forward hurts more
Because I know you will never
Again open that door.
At least in the past
We had our boy,
But in the future
There's no hope of that joy.
That's how it feels,
Though others may say,
You will get through this
And there will come a day,
When you smile without tears
And take comfort in knowing
That although he is gone
You did not stop growing.
And you'll find him again
In that place we go after
There'll be tears, but of joy
Hugs and kisses, and laughter.

When I woke up this morning, Ann had already sent me a text message to start my day. Her question was did I want to meet her and have a pedicure? I am a very well planned out person normally. So much so that I used to plan out my weekend, and spontaneity was never anything I excelled at. There is some comfort to living to a plan, to having order in one's life, and all those things used to bring me comfort. Well of course until cancer hit my life. Cancer showed me that sometimes in life there is NO plan, or not the plan you are hoping for. That living a predictable and stable life in the end doesn't always make one happy or healthy. Cancer has taught me a great deal about death, but also about life. Prior to Mattie getting cancer, such an invitation from Ann would have sent me spinning, mainly because I did not plan such a meeting into my day. However, now the unexpected captures my attention, and chances to spend time with a close friend, does take precedence over other mundane tasks. Tasks which at one time seemed SO important to me.

I had the chance to spend some time in Ann's garden today, and it is simply amazing to me how such tiny plants from the spring time, have transformed into such beautiful and robust plants this summer. Watching Ann's garden unfold has been a special part of this summer for me, and fortunately she allows me a great deal of latitude with what I do with her space. As I know the summer is slowly coming to a close, I find myself becoming saddened by this. This summer has allowed me the time to be outside, to plant, see birds and butterflies, and to connect with something that is bigger than I am, nature. I have found digging, pulling weeds, reshaping things, and watering flowers very therapeutic. But what happens in the fall and the winter, when this garden will lie dormant? This may sound like a silly question, but where does this therapeutic outlet go for me?

My parents are trying to adjust back to East Coast time, but between the jetlag and feeling quite ill, they are lying low today. For a change of scenery for them, we did go out to dinner and then my mom and I went to see Mary Poppins. I wanted my mom to see it, because I loved it so much the first time I saw it. I rarely rave about new musicals, so I know my family took notice when I did. My mom truly isn't feeling well, but she did pull it together to see the show with me, most likely because it was something I really wanted to do. Despite how she was feeling, she too loved Mary Poppins. It is impossible to sit through this musical and not be transformed in some way. If the plot doesn't get you then the singing and dancing will. I loved it just as much the second time around. I truly feel I need a year of musical therapy. Hearing music, seeing dancing, and following a plot helps transform me out of my state of depression and sadness.

To me this musical is very magical, however, what happened during the second act of this play tonight, I just can't explain. While the actors were performing a song entitle, "step in time," a fragrance wafted passed me. I hadn't smelled this fragrance throughout the ENTIRE performance, and it only lasted during this one song. As quickly as it came upon me, it left in the same dramatic fashion. Why am I mentioning this? Because this fragrance was that of MATTIE. It wasn't when Mattie was well, instead it was the smell he had on him at the end of his life. It was a sickly smell, that would come from the scalp of his head, a smell that I would wash off of him each time Debbi sedated Mattie. I never smelled this fragrance on Mattie at any other point in his life, and frankly I have NEVER smelled this fragrance on anyone else EVER before. So when I smelled this sickly smell this evening, I almost fell out of my seat. I continued listening to the show but was subconsciously transported to another time. I consider myself a very logical person, and naturally have tried to come up with some rational explanation for what happened, but I have none. I should have tapped my mom to ask her if she smelled what I did, but I was somewhat paralyzed in my seat from what I was taking in. The song, "step in time," in a fascinating song in and of itself, because the main character, Bert, lands up literally walking and dancing on the walls and ceiling of the stage. It defies gravity, but with the help of a guided wire, this magic is possible. But I find it very interesting how this fragrance was timed to a song that captures one's imagination, mind, and spirit. I am not sure if Mattie was with me tonight, and frankly it doesn't matter what the reality is. My reality is I felt his presence, so needless to say this is a show I won't be forgetting any time soon.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Each of us has our own pain to bear and it does no good to "comparison shop". I find it particularly unhelpful when people say, "it could be worse..." To me that is a wonderful line for comedians but not for living life. Grief seems like fear to me; it is different for each person and we are the only ones who can face it and work through it. We can and should draw strength from those we love and who care for us but it is from within ourselves that we find the desire and motivation to make it through. I know that you have it, although it is difficult to access right now. It may be that you are one of those who not only has to walk a difficult path but build as you go. Remember that it is okay to reach out for help when you need to; whether it is to find a reason to get out of bed or a shoulder to share your grief. I know yesterday was overwhelming for you and yet you pulled it together and did a lot for others. I suspect that is part of your key to staying on your particular path out of overwhelming grief. There will always be sadness but it will not always be the kind that swamps you and doesn't allow you to laugh or play or take joy in the people and things around you. Today as I practice I send you my strength to help you stay on that path until you can see a clear direction to go. I hold you gently in my thoughts."