Mattie Miracle 2021 Walk was a $125,000 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: 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

January 30, 2010

Saturday, January 30. 2010

Saturday, January 30, 2010

Tonight's picture was taken when Mattie was one month old. I loved his facial expression in this photo. It almost looks like he is saying, "ohhhhhhhhh!" Mattie was the cutiest baby in my perspective and I miss snuggling up against his adorable cheeks.

Poem of the day: Frabrizia by Kristin Burridge

I held your little fingers curled
And watched you leave this lonely world.
My heart was torn apart, in two
I am so badly missing you.
I think of how you used to smile,
And even though it's been a while
My heart is still an empty place
With days that still, I cannot face
The long dark winter's turned to spring
With nature's beauty, birds that sing.
But I'm so sad you're missing this
I have no little face to kiss....
The park, the swans, you used to look
At pictures in your story book
Your teddies lined against the wall,
They badly miss you, one and all
I see your bus from school go by
I feel the tears well up and cry
I wish my darling I could be
Just near to you-so desperately!
My only thought to help me through
That angels looking after you,
Will send a message from above
Of hope, and everlasting love.

I have been very ill all day. I was unable to sleep last night at all, and have been running 102 degree fevers. So tonight's posting is going to be very short. I am just not physically up to writing. It is my hope to feel better, because I have tickets to see my favorite ballet on Sunday. I find I need these moments to look forward to, otherwise, dealing with grief each day can become overwhelming.

I would like to share a message I received today from my friend, Charlie. Charlie wrote, "You hit several notes in your blog that resonated for me. One was about having shifting priorities. It often seems when one is young and starting out that all the time is devoted to working and it either takes a significant loss or just aging and the losses that come with that to make us realize that where we put our priorities are not necessarily in the right places. If you ask an older person what they want, most will answer, more time with those they care about. Not money, not things, but connections. Many of us who had strong friendships growing up abandon them in our 20s and 30s and sometimes even 40s to pursue promotions and the things that work will buy in the hopes of being happy. What we often find is that we are surrounded by things, but not by love and caring and so we begin to try to recreate those connections we once had with varying degrees of success. While none of us are happy about what has brought you to this point, I am glad that you have found connections that are meaningful to you and I encourage you to maintain them; these friendships are priceless. The other thing that stayed with me was your comment about expressing oneself in a creative way and how therapeutic it can be. This is so true and it makes me wonder what our next generation will do when faced with loss (as we all are). Will they be able to learn or find an outlet for their feelings as adults if this has not been cultivated in them as children? I suspect we will soon find out and the answer may not be one we like. I encourage you to explore those artistic and creative things you loved and to find a way to incorporate your feelings in them. As always, I will be mindful of you when I practice today and dedicate my focus and energy to you."

Friday, January 29, 2010

Friday, January 29, 2010

Tonight's picture was taken when Mattie was one year old. Mattie wasn't crawling, walking, or standing independently by this point. Nonetheless, he was full of energy, and I could tell he wanted to learn to walk, and three months later, did take his first steps. I particularly love this picture, because when Mattie was five or six years old, we had him pose for the same picture. Clearly you could see the amazing growth in Mattie within a few short years and Mattie always loved to compare these pictures.  

Poem of the day: I Can Almost By Victoria Walker

I can almost see you smile
In the shadows of my mind,
Bringing to me the peace
I have struggled so hard to find.
I can almost hear your voice
Telling me "Be not saddened nor afraid,
Just remember all the good,
How we loved and laughed and played."
I can almost feel your touch
Wiping away my every tear
As I stand among my shattered dreams
Letting me know you both are still near.
I can almost hear you say,
"One day, you'll be here too.
Live the life you have before you
For (I) will be here, waiting to welcome you."

I want to first acknowledge our blog readers. Mattie's blog gets a consistent 300 or more hits each day. Thank you for your support, it means more to us than you probably ever could know. In addition, today I received a lovely e-mail from a woman named Lana, who lost her only daughter three years old. I do not know Lana, but she reads Mattie's blog. I appreciated her e-mail a great deal, and also appreciated her honesty, that the pain doesn't go away after losing a child. It confirms my gut instinct. Lana's message is below, so you can all read it. In the midst of great sadness, I am humbled and honored that people continue to check in with us, and most importantly continue to remember my dear Mattie.

It was a busy social day for me. I met Christine (Campbell's mom) and Ellen (Charlotte's mom) for lunch to celebrate Christine's birthday. We had a nice time catching up with each other, hearing about one another's lives, and talking about the upcoming March for an Osteosarcoma Miracle. The lovely part about the three of us, is we are able to pick up our conversations from when we last met. I also appreciate their willingness to talk about Mattie, and the fact that they do not shy away from these moments. I have a feeling, we have now established a tradition with each other, to celebrate our birthdays, and also to work at getting together more often. This is definitely something that has changed within me. Prior to Mattie's illness and death, I would always think I was too busy to get together with friends, but these personal connections with those around me have become crucial in my life. This is just one of many priorities that have shifted for me.

Despite it being frigid in Washington, DC this afternoon, after lunch, I went for a walk. Definitely not typical for me, because I despise the cold. But when I have a lot on my mind, walking does help to clear it. I spent the evening with Ann's family. Her daughter, Katie, was in her school's performing arts show. I had the pleasure of hearing Katie perform Fur Elise on the piano, and I also heard some of her friends (who I have met over the past several months) perform pieces on the piano, sing, and even dance. I simply like to hear music and love dance, so I enjoyed this opportunity to see the next generation embrace the arts. Learning core subject matters is definitely the focus of schools today, but the beauty of learning and appreciating the arts are crucial. Expressing one's self creatively in and of itself is therapeutic. I have certainly learned this the hard way. While Mattie was ill and even in his death, I find that I turn to some of my creative talents to get me through. Therefore, I am happy to see this vital component celebrated in Mattie's school. I think it takes a great deal of courage to perform in front of other people, and these middle schoolers did a wonderful job in front of their school community.

While I was at the show, Peter got together with Tad. Tad is Junko's husband (and I know many of my faithful readers know who Junko is, she is our friend who would give me massages in the hospital). Peter and Tad are both New Englanders and have a ton in common. I am happy Peter has this social outlet, and I think it is so important to be able to talk with those we feel close to about thoughts and feelings.

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, "I ran into the grocery store near my house last night a little after six and couldn't help but notice the "Mattie Moon" staring down at me from the sky. The moon will never be the same. I think of you often, although I may not write you as often as I would like. I still can't help but reflect on your strength and your abilities to move through each day. I know it is not easy for you but from the outside, looking in, you continue to bless those around you simply by giving us your time and your thoughts, and continuing to share your Mattie with us through your words. He is ever-present to so many of us."

The second message is from my friend, Charlie. Charlie wrote, "Thank you for the story about the fish tank. Every time I see a tank (many restaurants I frequent have them), I always think of Mattie and the fish that would not live on without him. Now I will look a little deeper and see if I can find a Mr. Aggressive or a Nervous Guy or see what else may strike me as interesting or funny behavior. It is clear to me from your blog that you shared so much with Mattie about nature, people and all sorts of things that he will never be far away in your thoughts or your heart. In today’s practice our instructor reminded us to be patient and that changes can only be seen over time and sometimes only in retrospect. What holds for my practice holds for grieving as well. As you look day to day, I am sure it seems as though often you are where you were 20 weeks ago and then a day will be a little better and another one worse. However, when you get a year or two out you will look back and see a difference from where you were to where you are. The loss will still be there, the scar will still be there but you will be a survivor. I wish you the strength and the endurance to continue the journey; you have the courage. I will keep you in my thoughts and prayers."

The third message is from Lana, the person I told you about in the beginning part of this posting. Thank you Lana for writing to me today! Lana wrote, "I am so sorry for your loss. There is nothing worse than losing a child. And no other child can take the place of the one we have lost. I have hundreds of grief poems. My only child...was killed more than 3 years ago...and the pain never goes away. We simply learn to live with it like we live with arthritis. I wish so much I could take your pain away. Please contact me if you wish. Hugging you tightly .....and knowing Mattie is shining his light overhead for all of us to see and to follow!!"

January 28, 2010

Thursday, January 28, 2010

Thursday, January 28, 2010

Tonight's picture features another moment from Mattie's trip to Los Angeles, when Mattie was 11 months old. This picture was taken at 5am, on top of my parent's kitchen counter. Mattie was confused with the time difference between Washington, DC and Los Angeles, and woke up bright and early. I have never been a morning person, but Mattie had a way of forcing me up and out, even at 5am. Mattie did not wake up slowly, he always woke up ALERT and ready to go! Fortunately Peter was a lot like Mattie, so they were good morning partners!

Poem of the day: MATTIE by Charlie Brown

M for magic, magnetic and moon
A for artistic and ALL that was lost too soon
T for the time, it was just not enough
T for the tears, we cried so much
I imaginative and inventive were all your games
E Empty is my heart, without you nothing is the same

As I was visiting with Mary, Ann's mom, we brought her to see the fish tank at the rehab center. She was intrigued at watching the fish move about and to see how well they were camouflaged with the plant life in the tank. It is interesting how the mind works, while standing there with Mary, my mind instantly went back to the huge fish tank in the PICU. This fish tank was one of our main forms of entertainment after hours, when Linda, Jenny, and Jessie were no longer there. Watching fish became our hobby, so much so, that Linda allowed Mattie to feed the fish on the weekends when she wasn't there. He took that responsibility serious, which I was happy about, because psychologically it got him up and out of his room, and he felt the fish really relied on him. It gave him a purpose, and I think Linda understood that dynamic and need WELL! I may never look at fish in a tank the same way again. Mattie and I had nicknames for the fish in Linda's tank. There was "Nervous Guy." He swam back and forth repeatedly, doing time trials. Accomplishing nothing other than giving us a laugh or two, because we were wondering what on earth this fish was doing. The other fish we watched closely was a purple fish, "Mr. Aggressive." Mr. Aggressive, was just that, he was the boss of the tank, and kept every fish in line, and the others did not seem to mess with him. So clearly you can see we spent lots of time by the tank, so much so we had named the fish! Some of you may not have known this!

As I sit back tonight, I realize I am simply tired and do not have much to say, other than I MISS Mattie. Seems to be my usual mantra, but as I read Charlie's clever poem today, I realized she captured the M in his name beautifully.... he was magical, magnetic, and of course the moon will always remind me of my "Mattie Moon." It is ironic how his preschool picked the perfect symbols for Mattie, Moon and Magnet. In fact, tonight is a full moon, and Peter and I both looked at the moon and we both thought of Mattie. Once Mattie was nick named "Mattie Moon" in preschool, whenever he spotted the moon, he would shout out.... Mattie Moon, Mattie Moon! At times I almost believed he thought the moon was named after him! It was very cute to watch and to experience. Now of course I use this beautiful glowing symbol in nature, to remember my special seven-year-old.

I received this wonderful picture of a Canadian Goose from Tad, our friend, today. He knows I love geese, and I shared this love with Mattie. Apparently Tad tells me that Huntley Meadows is full of fowl life right now, including the arrival of goslings. Mattie and I always loved watching Mama birds with their young. He would always tell me this reminded him of "Mattie with his Una Moona" (that was ME!), and naturally when Peter heard this, he would make fun of this whole interchange! Then we would all land up laughing over this. I love this picture of the goose, it almost seems like she is deep in thought and has something to say. Mattie and I would have these dialogues all the time, trying to guess how others and animals felt, and I think these peaceful moments allowed us to understand each other quite well. Since so much of one's own thoughts can get projected into how we interpret how others are feeling and thinking.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Acceptance and adjustment must sound impossible and perhaps not even like something you want to work toward. I can understand that; does acceptance mean somehow that what happened is okay? I don't believe it does. This is one of those times that it all depends on your definition I believe. Just because your heart aches, your whole being longs for Mattie doesn't mean you have not accepted that he died. It doesn't mean you can't be angry about his death and the way that it happened. It means that you know that you don't (and none of us do) have the power to return him to this life, this place. You know this in your head and at some point, your heart will come to know it too, but it will never make it okay or the loss any less significant in your life. I have to tell you how much I admire what you are doing in the area of patient advocacy; it is so tough to confront doctors and other specialists even when you are well; how much more difficult for someone like Mary who is frail and having difficulty to do so. In addition, you put your great networking skills to use to help another person connect to the help he needs. You have so many talents; I do look forward to hearing what you will eventually do with them. As always, you are in my thoughts and prayers."

January 27, 2010

Wednesday, January 27, 2010

Wednesday, January 27, 2010

Tonight's picture was again taken when Mattie was 11 months old, on his first trip to Los Angeles. My mom snapped this eclectic picture of us at Huntington Library's gardens. What I particularly love about it, is all three of us are doing different things. Almost like a snapshot of a moment in time, not posed, but our reality. Peter of course couldn't see anything going on behind him, and Mattie was all smiles as he had my undivided attention.

Poem of the day: The Void

by Anthony Portillo

How do you keep life’s music playing
How do I help you understand what I’m saying
when this feeling of loss and emptiness consumes me
How I pray someone or something would set me free
Like floating thru a void that has no beginning and no end
These tattered and broken emotions I will try to mend
Hopeless are the thoughts that fill a guilty mind
And never were so true the words, life is unkind
Cold and cruel now is this life, with a hole so immense
Which way to go, which way to turn I have no sense
To laugh and to play these things seem so far away
To live without this pain in my life, how I long for that day
Searching my thoughts for happiness already spent
To feel that again all my prayers I have sent
I could never imagine a world without you
To carry on is something I must find a way to do

As I reflect on tonight's poem, and particularly on this line, "To live without this pain in my life, how I long for that day," I find that I am conflicted about this statement. I certainly wish I never experienced the void of Mattie in our lives, and I do long for the day when he was healthy and those more simpler times. However, now that Mattie is gone, I can't say that I long for the day without the pain. Because what does it mean to live without this pain, does it mean that I have come to peace, acceptance of his death, and adjusted to life without him? Certainly any grief counselor would say these are the ultimate goals: to accept the reality of the loss, and be able to keep Mattie's memory alive, and yet adjust to life and the environment without Mattie. I have heard about these grief tasks for years, but now that I am actually expected to try to apply them to my own life, I have major issues with them. I can see myself accepting Mattie's loss and adjusting to the loss on a cognitive level, but at the emotional level, the words accepting and adjusting DON'T compute. How can I ever accept and adjust to the torture we lived through in the hospital, what we witnessed Mattie go through, and to now being a childless family? It is ironic, having this profound loss has enabled me to directly see and experience that dealing with grief, and helping someone through this process doesn't occur through stages or through tasks, but over a lifetime.

I received this beautiful picture of a heron today from Tad and Junko. Many of my readers may remember that Junko is my friend and SSSAS mom who would come to the hospital and give me massages. Tad knew that we would take Mattie on walks at Huntley Meadows. Mattie loved this park, its boardwalk over water, and particularly was fascinated by the amazing bird traffic at the Meadows. Great Blue Herons, are the Maryland State bird, and we are lucky to have many of them around our area. To Mattie and I, they always reminded us of prehistoric birds for some reason. But mostly we loved watching them move, their slender necks and long legs gliding in the water. I enjoyed receiving this bird picture today, because it brought back all the memories I have of all our trips and bird watching.

I spent part of the day visiting Mary, Ann's mom. Mary was moved to a rehabilitation facility today, and despite the trip, the transportation, and the change of scenery, Mary handled it all quite well. I have come to see, that despite Mary's physical decline, she has great perseverance and fortitude. In a way, this kind of resilience is to be acknowledged and appreciated. Mary and I have spent a great deal of time together over the past five days, and despite not being related to her, you do get an understanding about someone's likes and dislikes, when you spend a great deal of time together. In a way, getting to know someone on this deep level is a privilege.
Helping move Mary into this facility today reminded me of all my admission days with Mattie. Between Ann and I, everyone in the facility was hopping to get things accomplished. We were moving furniture, having floors cleaned, paperwork being completed, and of course helping Mary adjust to her new surroundings. The irony is, after living in a hospital for 13 months, I feel like I know most of the strategies necessary to enter a health care system. I certainly couldn't have said this prior to Mattie's illness. In fact, prior to Mattie's illness, I despised hospitals, and everything that went with them. So in a way, I have experienced a total perspection change while dealing with grief. Helping people who are sick, advocating for their needs, and providing them with emotional comfort are things that bring me peace now. I don't say that lightly, since not much brings me peace these days. But with Mattie, after being his intense caregiver for so long, it is hard to shut off this caring intensity. Perhaps that is okay too, if I can channel it in an appropriate way.

I did come home this afternoon and rested. I am intensely tired, and feel fatigued physically and emotionally. So I knew that meant I had to slow down. Peter and I went out to dinner tonight, and we talked about his experiences at Georgetown University Hospital today. Peter went to visit a colleague's brother. This young man was diagnosed with leukemia. Peter's colleague contacted him for a referral to an oncologist, because she wasn't happy with the information he was receiving at another hospital. So Peter contacted Dr. Aziza Shad, the director of Lombardi's Pediatric Center. Aziza within minutes connected this young man with a top oncologist at Lombardi, and he is now in treatment. As many of my readers know, Aziza was the doctor on call, who helped us the week Mattie died. No matter where Aziza is, and I mean where ever, she could be in another country, if Peter or I text message her, within minutes she responds back to us. This is not only a fabulous doctor in my mind, but she is an incredible human being. I don't say that lightly, but we are very grateful that she helped Peter's colleague, and I am happy Peter had the opportunity to visit this young man.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "The cystoscopy is not a fun or pain free exam; I’ve had one. It takes a couple of days before the feelings in your bladder and urethra return to normal. Given how I feel about most medical tests, it is amazing what Mattie managed to tolerate and make it through as well as he did. It is a testament to your bond with him as well as some of the best medical folks around, like the ones who ran the scans and gave him sedation for his multitude of tests. It is hard for me to believe it has been twenty weeks now; it doesn’t seem that long to me since you gave us the heartbreaking news. It was wonderful of you to advocate for Mary as you did; this is another area where you might find future employment or volunteer work if you decide not to return to teaching. Or perhaps there is a way for you to combine your strengths and teach medical personnel how to emotionally support patients. The right opportunity will surface when you are ready to accept it, I’m sure. At the beginning of practice today, the instructor reminded us not to be competitive, either with others or with ourselves. Today is a day that is different than yesterday and will be different than tomorrow. So too it is with managing grief; today is the day that you have to go from wherever you are. I wish you a space of serenity and peace in that grief and as always you are in my thoughts."

The second message is from one of my very first teaching assistants. Liz wrote, "Just wanted to share that I love, love, love the past two pics you've posted of Mattie. Both have made me smile...what a little darling. Also, I laughed out loud when I read the part about you sticking it to the psychiatrist on Mary's behalf. Well, done. I know it must have felt great to do this (for many reasons), what is also amazing to me is that a psychiatrist actually listened and changed her mind about etiology and diagnosis. You remain, as always, a fantastic advocate."

January 26, 2010

Tuesday, January 26, 2010

Tuesday, January 26, 2010 -- Mattie died 20 weeks ago today.

Tonight's picture was taken on Mattie's first trip to Los Angeles, when he was 11 months old. We took him to The Huntington Library Gardens, in San Marino (near Pasadena). As you can see, Mattie was in his favorite form of transportation, the backpack on Peter's back. Mattie was simply fascinated by the bamboo, and while he was investigating it, I snapped a picture of both he and Peter because somehow they both seemed engrossed in admiring different scenes from the garden.
Poem of the day: The Raw Pain of Grief By Lana Golembeski

Wham! Bam!
Grief comes tearing around the corner
Blindsides you
You can’t even see it coming!
Life is back to an even keel
As best as it can be.
And then grief rears its ugly head
It just takes a single moment
For it to find you
And hit you hard in your gut
Spinning you back to square one.
The tears flow uncontrollably
And you feel like you just got the news for the first time.
The pain racks your entire body,
And the anger fills your entire soul.
And you scream WHY??
But you know there are no answers.
No one is listening.
The emptiness of that black hole surrounds you
And it sucks you down into the pits of despair.
Why can’t grief just let you go?
Why can’t you have your child back?
Nothing could feel more wrong
And there is no way to fix it.

Mattie died 20 weeks ago today. It seems to me that I just wrote about Mattie's passing last Tuesday, and here we are again, marking yet another week without his presence. The feelings this produces within me is summed up perfectly in the last line of tonight's poem...."and there is no way to fix it." Indeed, there is NO way to fix grief, it is a process of adjustment that can take a lifetime to cope with from my perspective. In our fast paced society, where we want issues and problems resolved instantly, when grief comes knocking at the door, it presents a challenge. A challenge because for Peter and I who are grieving, the world has stopped moving, and our feelings and thoughts are intense and skewed. Never the less, while falling in this pit of despair, the rest of society is evolving, moving on, and on some level expects us to do the same. So a natural disconnect arises between us and the world, and it can be hard to face this reality.

I started off my day at the doctor's office having a cystoscopy. For those of you who are lucky enough never to have had this procedure, what basically happens is a thin (the doctors say it is "thin," but it actually looks and feels quite intimidating), lighted instrument called a cystoscope is inserted into your bladder. This procedure was done without sedation. My lifetime friend, Karen, suggested that the doctor try having a cystoscopy herself without sedation and see how she actually likes it! Karen made me laugh, because she is right. It is actually quite painful, and I continue to be in pain tonight. I think any time I have such experiences, I reflect on what Mattie went through, and honestly wonder how on earth he managed what he did, and in turn wasn't deathly afraid to enter the hospital with each admission.

I had the procedure done at the same hospital that Ann's mom is being treated at, so after this 20 minute nightmare, I went over to visit Mary. Mary was up in her chair today, and had both physical and occupational therapy. The therapists got their workout today with Mary, but Mary was also working hard. Mary responds quite well to positive feedback and encouragers, so I am her cheering squad, when she does her therapy. This is a role I learned to play quite well over the last two years. After watching two sets of physical therapists work with Mary, I realize how lucky Mattie was to have Anna (his physical therapist at Georgetown). Anna is an amazing, warm, and sensitive individual, who not only normalized things for us, but found unique and creative ways to stimulate and challenge Mattie. This is not a skill set that every therapist comes to a session with, and now having experienced Anna, my benchmark for physical therapists is set quite high.

Ironically this evening, Mary was revisited by a psychiatrist. The same psychiatrist who I interrogated the day before. When the psychiatrist came into Mary's room, she did not introduce herself as a psychiatrist, but within minutes of her questioning, I knew who she was. She was trying to assess whether Mary has depression. Goodness gracious, after all Mary has been through, if she wasn't depressed, then to me something would be wrong with her. Any case, after asking her all sorts of questions, the doctor was about to leave the room. But I stopped her. I explained to her that I was listening to her questions, and that I was a mental health professional. I asked her whether she considered Mary's neurological disease when making her assessment. I asked her how she distinguished Mary's disease progression from true clinical depression. She did not like that question, and gave me a pat answer. In addition, I suggested that Mary would only be in the hospital for a few days, and if she started psychotropic medications, she would be unable to manage them because of the temporary nature of Mary's stay. Any case, tonight as she revisited Mary's room, guess what? Answers to both of my questions were revealed. She changed her mind and agreed that Mary's flat affect was directly related to her neurologic condition, and she also realizes adding medications that can't be managed and followed isn't appropriate. I sat back and felt like my mission was accomplished. I got to this doctor yesterday! In fact, as I was in the hallway tonight making a phone call, this psychiatrist came up to me and thanked me for my insights. All I can say is I may have had skills going into Mattie's treatment, but caring for Mattie enabled me to think and advocate concisely and passionately. I mention this whole interaction because not much brings me happiness these days, but hearing that something I did helped provide better care for someone else..... well that still impacts and inspires me. While the psychiatrist was talking to Mary, she happened to say, that she realizes there is "NO MAGIC PILL" to help one recover from losing a son. I almost fell off my chair, because I have been feeling that way for the longest time! It was nice to actually hear a medical professional admit this.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "We do reflect our surroundings. It is not something most of us do consciously but you can see it when people leave a busy, noisy, city street and walk into a quiet tree lined, grassy area; they seem to breathe slower and deeper and relax. That's one reason visualization works so well for some people; they can "see" and "feel" their calm place in their minds. Lying in bed, in a hospital gown, tells a person that he/she is powerless, ill and in need of assistance. Just getting a patient up and into a chair makes all the difference sometimes. You can see the change in level of alertness on someone's face. What all hospitals need is a gathering spot for non contagious patients where they can interact with others and get the social interaction we all crave. I hope that today's procedure goes well for you. I will keep you in my thoughts and prayers."

January 25, 2010

Monday, January 25, 2010

Monday, January 25, 2010

Tonight's picture was taken in March of 2003, when Mattie was 11 months old. He was visiting my parents, and in their living room I snapped this picture of him. Mattie was all about movement and was a bundle of energy. Taking his picture was the ultimate challenge. I always liked this picture because it captured Mattie in motion, trying to lunge forward and grab the camera away from me.

Poem of the day: Grief
Grief is a companion
That pushes others away.
Grief is a blanket
That smothers my ambition.
Grief is a thief
Stealing energy, light and joy.
Grief is all pervasive
Like a starless night.
Grief is blinding
Like thick morning fog.
Grief is an unrumpled bed
Legos untouched in a tub
A small shirt, colored red
A too quiet house
With deafening silence
That breaks my heart

I would like to say I wrote tonight's poem, but I did not. Though I did not write it, I am unfortunately living it and identify with it in a very real manner. I agree wholeheartedly that grief is indeed a companion that pushes others away, it smothers ambition, and it steals energy and joy. On any given day, I feel all three of these descriptions. There are times I just can't participate in social interactions, and I still shy away from group events. I do notice that I question my goals or ambitions I had in the past, and wonder if I still have these same interests and priorities now. Though these things are taxing, the hardest for me is the physical toll of grief. The constant state of tiredness and feeling lethargic, is something I almost fight each day. I wake up in the morning with the intense desire to want to stay in bed. I want to stay there because I am just physically drained, and moving seems to require great effort.

Today I had the opportunity to have lunch with Honey. Honey is faculty member at The George Washington University, and I have worked with her for 10 years. I have been away from the University for a year now, and it was nice to meet with Honey and get caught up about things happening on campus. Honey and I have a lot in common and I appreciate all the support she has given me and Team Mattie throughout Mattie's illness, and now as we grieve his loss.

Later today, I went back to the hospital to visit with Mary, Ann's mom. I sat with Mary while she underwent an echocardiogram. It can be very disorienting to be transferred to a stretcher and placed on an elevator to head to another floor in order to sit for a test. After it was over, Mary held my hand and thanked me for being with her today through this. She said she was actually scared. I don't think the test itself scared her, but the whole relocation and transportation process was daunting. The irony is Ann has been telling me that hospitals are not a good place for older adults. She has been warning me that I would see a change in Mary after her hospital admission. Well I am afraid she is right. Mary entered the hospital alert, talking, and engaged, and now on day four of her hospital admission, she spends most of her days in bed, sleeping, in a hospital gown, and disengaged. This stark transformation is actually frightening, since I can see Mary becomes more lethargic with each day she remains in the hospital. So this screams out two things to me. The first is the environment we live in impacts us tremendously. Mary has been isolated and laying in bed, with a hospital gown on, and as a result she is almost reflecting the "sick" role that she is forced to live. Second, because of convenience sake, I notice that the hospital staff would prefer to keep Mary in her bed. Since Mary is not ambulatory, and needs major assistance or lifting from one place to the other, it saves the staff time and energy to keep her confined to her bed. I certainly understand their dilemma, but the physical and psychological impact of isolating someone to a bed is profound. So profound that in just four days, I see a major decline in Mary. 

Tomorrow morning, I head back to the hospital, which Mary is in, to take a medical test. Should be a fun procedure without sedation. I appreciate all your good thoughts and as always I thank you for continuing to read our blog and supporting us.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "The people who come to Haven tell us that grief is very much as you described it, always there in the background of everything and then sometimes with no apparent reason totally overwhelming almost to the point of despair. I do hear that it gets better, that those really intense moments become fewer and farther between and that laughter comes more frequently and with less guilt but it takes time. You never forget, you never stop missing your baby but you do find an equilibrium that holds up most days. Be patient with yourself as you heal and seek a balance in your life. I think what you are doing for Mary is lovely. Your visits help insure that she will get good care. While none of us do it consciously, we do pay more attention to those who clearly are cared about by others; somehow it says to our unconscious that this person is worth paying attention to. And a simple thank you to the nurse or person who is responsible goes a long way too; one can do that as a job or as a labor of love and all of us would prefer it be the latter. As I practice today I will keep you in my thoughts and send the serenity I find to you."

January 24, 2010

Sunday, January 24, 2010

Sunday, January 24, 2010

Tonight's picture was taken at the Los Angeles Zoo in March of 2003. Mattie was 11 months old. This was Mattie's first big plane trip out to California to visit my parents. He handled flying and traveling quite well, as long as we brought a ton of things to entertain him. He NEVER slept for the entire 5 hour plane trip. His favorite parts of a plane trip were (and ironically they are all the parts I highly dislike): taking off, turbulence, and landing. In tonight's picture, you can see one of Mattie's favorite modes of transportation, sitting in a backpack on Peter's back. Mattie was always fascinated by animals, and truly was in awe of the petting zoo.

Poem of the day: The Pit by Lana Golembeski

Sadness permeates my soul
It fills every part of my body
I feel the pit in my stomach
As reality roars in my ear
I cannot bear the truth
I hide from it
Under the covers in my bed
In the busy-ness of my work
But the truth is relentless
The absence of [his] presence
Fills my soul with pain
I miss [his] smile and [his] laughter
[His] presence follows me everywhere
And the emptiness of reality fills the air.

I think our grief is ever present, as the poem indicates it does permeate your soul. There is always an underlying level of grief to everything Peter and I do now, however, in addition to this feeling, we sometimes feel the intensity of grief. The intensity comes back and forth on us, just like waves come crashing onto the shoreline. Peter and I are currently being hit by a wave, and it truly feels during these times as if we could be carried out to sea, or in other words, we feel powerless. Powerless in a sea of hopelessness, in which we do not see an end to our pain and our heartache. Fortunately this intensity isn't experienced every day, because it would make it almost impossible to function and live. I can't even pinpoint what causes these intense waves of grief, they are unpredictable, but I do know that Peter and I have felt this way before, since Mattie's death.

I spent some time visiting Mary, Ann's mom, in the hospital today. Mary did not seem like herself this afternoon, and was excessively tired. As we were chatting yesterday, I could tell that Mary wanted to have her nails done, so today, I gave her a manicure and pedicure. I have had the opportunity to get to know Mary's nurse over the last three days. Mary is fortunate to have the same nurse assigned to her for three days in a row. The consistency of this is beautiful. Her nurse is lovely and diligent, and apparently Ann and Mary tell me that the nurse inquires each day about when I will be visiting Mary. In fact, before I left tonight, Mary's nurse asked if she would be seeing me tomorrow. After my experience in the hospital with Mattie, I have a great admiration for nurses, and I appreciate their efforts, their knowledge, and their sensitivity, and perhaps this level of appreciation (though not consciously expressed) is felt.

Mary enjoyed getting her nails done, and while holding her hands to give her a manicure, I realized without looking at her face, that her hands reminded me of my grandmother's. My grandmother was a special person in my life, and she died in January of 1994. My lifetime friend Karen wrote me an e-mail about my connection with Mary a few months ago. Karen knew that I was in college when my grandmother suffered a stroke, and she wondered if a part of me is trying to provide Mary with the social and emotional connections I wish I could have provided my grandmother years ago when she was sick. After all, my grandmother lived in California with my parents and I was in college in upstate New York. Karen's e-mail registered with me, but frankly I did not think much about what she was saying until I noticed Mary's hands today.

Ann was visiting her mom while I was there, and I have noticed that Mary loves listening to Ann and I talk. She is usually very alert, engaged, and processing everything we are saying. I think this stimulation is so wonderful for Mary, but it also tells me about the importance of social connections in women's lives. Before I left tonight, Mary wanted to let me know that she heard what Ann and I were talking about and that she wants very much for me to be happy. She told me she strongly feels that I can achieve happiness again, but that I have to allow this for myself. That was an interesting comment, because that is indeed a component of my problem. I shy away from thinking about happiness because I feel this tarnishes Mattie's memory and his suffering. Perhaps it is just too soon for me to even talk about potential happiness, but I am very cognizant of the guilt that arises within me with the mere mention of the topic.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Mattie's death is certainly not a "bump in the road" and none of us would ever suggest that it was. I can think of few events more life changing than the death of a child for a parent. The change in the world is so profound that it takes a significant amount of time just to figure out who you still are, let alone what you want to do. You need to be kind to yourself as you struggle to figure out where all these pieces go. I understand what you said about Mary and the assisted living center. We tend to treat aging adults like children; we speak to them in childlike tones, we don't respect their knowledge and experience and we "do for them" as we do for children. As a result we disempower them, and cause them to do much less for themselves than they otherwise could. And most of the time it is unnecessary; we just do it out of convenience to ourselves. We forget we will be there someday and if we don't change the way these places operate, we will be subject to it ourselves. My instructor said something yesterday that resonated with me as we closed our session; we always say: "the light in me, honors the light in you." Then she said, 'But remember to honor and respect the light within yourself as well; give yourself no less love and compassion than you give others.'"

Saturday, January 23, 2010

Saturday, January 23, 2010

Tonight's picture was taken in June 2002. Mattie was two months old. I remember taking this picture of Mattie and Peter as if it were yesterday. I loved Mattie in his sailboat outfit, and of course loved his cute red cheeks. At the time I thought life was complicated dealing with a baby who had colic and never slept. Little did I know what was in store for us. It saddens me to know that this beautiful baby suffered so much, that he did not have a chance to grow up, and that we will always have this void in our lives.

Poem of the day: As If by Kristen Spexarth

Somewhere along a lifetime most are broken
but we pretend we are not
taking up armor and masks
as if so doing we could fool the rest
as if a state of brokenness
was something to be ashamed of.
Contorted behind a smiling
and daily polished patina
we bend ourselves into pretzels for fear
a glimmer, warm and needing,
might shine through and blow our cool.
As if no one could read the details
running tickertape across our foreheads.
As if none could see our clumsy antics
tripping over bloated and rotting unattended business.
As if our single-minded hypocrisy
caused no pain.
As if we could hide from who we are,
as if who we are was hiding.
And still we are loved by those who see us
better than we see ourselves
love letting go of face forever and
taking up the heart of us
however broken.
Perhaps it is time to accept that broken is a part of place
that within these learning fields on earth
broken is a state of grace
wherein opportunity exists to learn the best
and the worst of it.
Perhaps it’s time to recognize
and embrace the way we feel
picking our broken pieces off the ground of being
learning to knit them together again
with compassion for ourselves
larger than we were before,
larger than we ever imagined,
building with a new awareness
that somehow broken opens a door
invisible before.
And with newfound wholeness, expansive,
that embraces the broken and the mending
we become alive to the possibility
of sharing our humanity.
Unbroken we can never know this.
So let go of fear of falling,
stubbing pride and dignity
embrace the lessons a lifetime brings
laughing and crying wholeheartedly.
To ride our time without a bump
in our imagined being
would be to live an epoxy bubble,
brittle, indifferent, and unmoved by beauty
untouched by an ocean of love surrounding
beckoning us to jump.

There is some truth to the message in this poem, that we all experience bumps in the road, or at times feel broken. Broken or shattered physically or emotionally from our experiences. Certainly as we are forced to deal with life's challenging moments, we realize we can either get stuck in them or adjust to them. It is through the process of adjusting and coping that we learn a great deal about ourselves. About our strengths and about our support networks. As the poem expresses, living life without adjusting to the bumps in life's road would only leave us in an "epoxy bubble, brittle, indifferent, and unmoved by beauty, untouched by an ocean of love surrounding beckoning us to jump." For the most part I embrace the sentiments of this poem, however, Mattie's death is more than just a bump in the road, it is actually more like running up against the grand canyon. Such a trauma leaves me unable to navigate, adjust, and cope. Do I see the world differently now? Yes, certainly. I see both the pain and unfairness of life, and also the true beauty, goodness, and love within the people who surround us. Yet, despite my gained clarity, my overwhelming understanding of the fragility of life, and the depths of emotions cancer and Mattie's death has produced, if given the choice, I rather have Mattie back and simply be clueless to the depths of pain and the enlightenment Peter and I now feel. 

I had the opportunity to visit Mary, Ann's mom, in the hospital today. At one point, Mary was evaluated by a physical therapist and an occupational therapist, and what fascinated me about this process is with encouragement and time, lots of time, Mary can actually do more for herself physically that I thought was possible. This speaks to two things to me, first, every assisted living facility should have resident therapists on call, and if that isn't possible, the aides working with older adults need to have some skilled training. Second, the key is time. All of us lead busy lives, but within an assisted living facility, there shouldn't be the same pressures. It shouldn't be about the speed at which we get someone dressed, it should be about empowering older adults to do things for themselves, even if it takes longer. There is no telling the strides older adults would be able to make if only given access to trained personnel and the time to achieve certain tasks. Needless to say, after Mary's therapy session today, it made me pause and wonder. The goal of ANY facility working with an older adult should be to empower them. It is only through feeling empowered that we can effectively instill hope and enhance one's quality of life.

Tonight JP, our neighbor and owner of JJ (our resident Jack Russell Terrier), invited Peter and I out to dinner. JP's friend, Sheila joined us. Sheila works at Georgetown Hospital, and always checked in on us when Mattie was battling cancer. Peter and I value their support, and we had a delightful and memorable dinner, and in the process had the opportunity to laugh throughout the evening.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "That dream must have been quite something for you to remember it so clearly. I looked up bugs and cockroaches in the dream "dictionary" to see what I could find about the symbolism. What struck me was the note about cockroaches being a symbol of the need for renewal and rejuvenation. Perhaps this is a sign from Mattie that you are on a path to healing even if it doesn't feel that way. He is "bugging" you to continue to try to get out and connect, especially with children so you are surrounded by a crowd of them in the dream. I am sorry Mary (Ann's mom) is in the hospital; that is a stressful place for anyone but especially a fragile, older person. It is lovely of you to understand this and to spend time and to keep her company at dinner. She is accustomed to eating in the dining facility at the nursing home with lots of company and to eat alone must somehow feel like punishment. My instructor said yesterday in practice that each person's practice is theirs alone, that it differs day to day with the weather, your mood, your diet, etc. I think life in general is that way and our ability to deal with the stresses of a particular day as well. I hope today is a day in which you are able to find the energy to be out and to connect with those you care about and who care for you. I hold you gently in my thoughts."