Saturday, November 20, 2010

Saturday, November 20, 2010

Tonight's picture was taken in November of 2007, on the walking bridge to Roosevelt Island. Peter and I went for a walk on the Island today, and while crossing the bridge I recalled all the times we traversed this structure with Mattie. However, crossing the bridge with Mattie usually meant stopping midway, throwing stones into the water to see their rippled effect on the water, and feeding several mallard ducks swimming by. Mattie loved collecting leaves as well, and as you can see in the picture I was carrying one of the huge leaves he found on our walk that day. Mattie, not unlike me, was a collector, and he loved collecting mementos from all of his walking journeys.

Quote of the day: I don't regret the things I've done; I regret the things I didn't do when I had the chance.

Peter sent me this quote this week because he found it very simple and yet powerful. I think as Mattie's parents, it is very easy to regret many things. But one thing I can confidently say is I DO NOT regret "the things I didn't do when I had the chance." As Mattie's mom, if I felt something needed to be done, then I did it. I had this philosophy right from day one when he was born. I did work, and I had a ton of professional and volunteer obligations in my life, but Mattie always came first and other things came second. I rarely went away without Mattie, my free time wasn't spent with friends, it was spent with Mattie, and the list goes on. Our time together was very rich, deep, and concentrated. I am not sure if this was as a result of our bond and relationship together, or if something unexplained in the universe enlightened me early on to the importance of this quality time. Either case, when Peter sent me this quote, I agreed with its sentiment, and also felt no remorse or regret about missed opportunities when Mattie was healthy and well.

I got up this morning, and then jumped right back into bed. Peter observed this, and came over to my side of the bed and basically said..... "what do you want to do today, because you are not spending the day in bed." I smiled, because I hadn't said anything, but he understood immediately what my intentions were. I have been thinking of Roosevelt Island lately, and since the sun was out, I suggested we take a walk there. Peter and I haven't been back to the Island in quite some time, mainly because walking there is very reminiscent of our time with Mattie. Some people are lucky enough to walk down their hallway of their home to see their children, we are not so fortunate. Instead, our connections to Mattie are wrapped up in things and places. Visiting Roosevelt Island today was like a journey of rediscovery. In the sense that we shared and reflected upon memories of Mattie by the water, on the rocks, walking the trails, by the fountains, and on the boardwalk. Peter snapped many pictures today of our day, which I posted below. In many ways, the pictures show some of the wonderful sights that surrounded us.

This is a picture of our 6 foot lemon tree that has been moved from our deck into our living room for the winter. This tree is impressive and a producer. In fact, the tree has so many blossoms on it, that our living room smells like a lemon grove. The smell is intoxicating! I received this gift years ago in the mail from my sister-in-law. It was a birthday gift, and was a tiny little sapling when it arrived. After years of nurturing (thanks to Peter!!!!), this tree is taller and most likely stronger than I am.

This is a close up of some of the lemon blossoms. This tree came from Florida, and in all reality, I feel like its presence is providing us with beautiful greenery to look at this upcoming winter.

About five years ago, Peter and Mattie went out to Home Depot, and came back with this beautiful burning bush. Despite living in the city, we have taken on a portion of our complex's green space and we plant on it. Typically the burning bush is green in the spring and summer, and in the fall it turns this stunning red color. The burning bush has great religious significance, but in my mind when I look at it now, as the holidays are approaching, it is flaming red (Mattie's favorite color) and reminding me of who is missing in our lives.

While taking some pictures at home, we naturally couldn't leave out Patches, our cat. Patches has taken over our couch, specifically my portion of the couch. In fact, I rarely spend time in our living room any more, so when Peter is on the couch, she hops up and keeps him company. She has her own blanket on the couch, and as you can see she is good at making herself right at home.

One of the places we walked to on Roosevelt Island today, is a point where you can walk out to the water. It was low tide, and we literally walked through the mud to get to the water's edge. In the background, you can see some spires, and that is Georgetown University and the Hospital. It seems ironic that we looked at that sight many years while visiting the Island. It is hard to believe that we then landed up having a close up view of Georgetown by living there to fight for Mattie's life.

Peter snapped a picture of this pine tree today. The rust color of its needles was captivating against a very blue sky. This picture speaks FALL to me.

One of my favorite parts of being on Roosevelt Island is its boardwalk. At the end of the boardwalk, you can see a very clear view of the marsh. Peter and I stopped to look at the water, the vegetation around us, and for bird traffic. We were just about to move along on our walk, when something caught my eye and I decided to look up into a tree. When I looked up, here is what I saw. An amazing Great Blue Heron. These birds fascinate me, because they are beautiful and prehistoric looking at the same time. As I said to Peter, it pays to stop, look around, and explore, because with just a quick glance through the area it would have appeared that nothing was there to see. But as we have found, there is ALWAYS something to see on Roosevelt Island.

Along our journey today, I collected three leaves in honor of Mattie. One for Peter, one (the red one) for Mattie, and one for me. They seemed like a beautiful composition, that I know Mattie would have appreciated.
 



Later today, I went to Ann's house, because her daughter was celebrating her 13th birthday. Part of the party entailed a shopping mall scavenger hunt. With almost 16 girls in tow at a busy shopping mall, it was important to have adequate adult supervision. I attended only the hunt portion of the party and decided that I wasn't up to staying for the rest of the party. Ann was aware of my feelings before the party started, and I felt guilty for not staying, but I also am aware and sensitive to the fact that my feelings on a happy occasion should not be the priority. I am not sure why this particular party has set me off this week, since I have been to other parties for Ann's children, but it has. The energy and happiness in the air for this event were almost too much for me to handle and absorb. When I find that I am feeling bitter and upset for someone else's happiness, then I know I need to distance myself from the situation, rather than put myself through this, and potentially upset Ann or anyone else in the process. What it comes down to is Ann and this party represent living, growth, and a future. Whereas, my world feels like the land of the dead, lost, and misunderstood. 

The shopping mall was packed tonight with people, and where I was standing was complete sensory overload. I was standing near an entrance to the mall, and several large teen groups came into the mall tonight. The noise level was over the top, and though I tried to deal with it for a while, I landed up text messaging Ann, and I moved to another location. Thank goodness for cell phones, because while waiting and watching for the girls, I was chatting with Peter, Ann, and Karen all at the same time. I learned the beauty of having a Blackberry in the hospital, because with it, I am never alone. 

Friday, November 19, 2010

Friday, November 19, 2010

Tonight's picture was taken in November of 2007, on Roosevelt Island. One of Mattie's favorite places to walk, explore, feed the ducks, sail his battery powered boats, and climb rocks. This is my second favorite photo of Mattie, after the pumpkin photo I captured of him at Butler's Orchard in Maryland. Mattie found an osage-orange or sometimes called a crinkle hedge apple on the Island that day. Of course at the time when he picked it up, I had no idea what on earth it was or what it was called, other than some sort of tree fruit. So based on Mattie's curious nature, he took the fruit home with us. We searched the Internet for the name of this fruit, and eventually we figured it out. When you cut the fruit open, which we did with Mattie, it has an amazing citrus smell. I was always learning something NEW with Mattie, something I now miss. Can you guess who took this photo of Mattie, was it me or Peter? It is funny, Peter can instantly tell by looking at a photo which one of us snapped it of Mattie. Peter claims that Mattie posed differently for us. In Peter's words, if Mattie was beaming and had a glorious smile in a photo, then I was taking the picture. So tonight, if you guessed I took the picture, you are correct. I loved Mattie in red, his favorite color, and in many ways Roosevelt Island was our backyard. We walked it on good and bad weather days, and during good times and difficult times.

The Lone, Wild Bird by H.R. MacFayden

The lone wild bird in lofty flight is still with thee, nor leaves thy sight. And I am thine! I rest in thee. Great spirit come and rest in me. The ends of earth are in thy hand, the sea's dark deep and far off land. And I am thine! I rest in thee. Great spirit come and rest in me.

The above poem was actually a hymn sung at the "Time of Remembrance" ceremony last Sunday at Georgetown University Hospital. In fact, I found this hymn and the one I posted earlier this week (Hymn of Promise) so moving, yet last Sunday, I couldn't keep it together long enough to sing. The words just seem to speak to me, though the music itself isn't memorable. I think both hymns resonated with me because they both spoke about nature. In this particular case, the spirit of our loved ones is captured symbolically in the "lone wild bird." Throughout the spring and summer, I saw many birds, and watching their energetic moves and listening to their calls, they reminded me of Mattie. Therefore, when I read, "I am thine! I rest in thee," I was captured by the beauty of this visualization, sentiment, and feeling. As if these words were written just for me. Though I realize they were not. With each bird that soars over my head, I catch that moment in time, like a photograph, and think to myself..... are you with me and will you stay with me? In Ann's garden this season, I had more visits from robins, blue jays, and hummingbirds than I can count. Not sure if these creatures were saying to me...... I am thine, I rest in thee, but somehow their presence brought me comfort.

As it is getting much colder in Washington, DC, Peter bought us a new bird feeder and hooked it up to our balcony. This was a tradition we started when Mattie was born. When Mattie was a baby, I spent many days at home, alone together. Peter put up a bird feeder that year, and it was a marvelous diversion for both Mattie and I. Even though we live in the city, you would be amazed at the bird traffic that comes by for food. Mattie and I LOVED our family of red headed finches who always visited, and I am hoping to see them again this year. So far, I haven't seen one bird stop by our feeder, but I realize there is still a great deal of food to pull from nature still. I am sure in time, all our feathered friends will return.

I began the day with visiting the dentist. Going to our dentist's office is a true experience. It is located in the heart of Washington, DC, and their philosophy is the patient is always right and deserves to be comfortable and treated with respect. This philosophy hits you as soon as you step off the elevator and are greeted by the receptionist. Frankly, I would love to clone my dentist and his entire practice and introduce him to the rest of the medical community. It makes a big difference when you feel you are being listened to, that you aren't rushed when dialoguing with your doctor, and that the things you say aren't being challenged. I had a new hygienist today, and she claims I haven't visited the office for two years. I know this couldn't possibly be the case, since I remember the last hygienist crying with me when I told her Mattie died. So I believe I haven't been to the dentist in a year. Very unlike me though, since I usually take doctor visits seriously. Any case, I was worried what state my teeth were going to be in today, since the rest of me feels worn out from Mattie's cancer. Despite all the precautions taken at Georgetown, Mattie did receive many different types of radiation from x-rays to cyberknife. I personally feel like a walking piece of radiation, and I am sensitive to getting exposed to more xrays, even dental ones. So I had a long talk with the hygienist today, and she explained the difference between the type of xrays Mattie took and the digital xrays (which use minimal radiation) I would be getting. I was due for over 20 dental xrays today, however, after four, she could see that the pain of holding these things in my mouth made me cry. So she quickly decided that putting me through more of this would be cruel. So instead I took a digital panel xray which was fascinating since I got to see my nerves, jaw, and sinuses.

After the cleaning, I got to see my dentist. Who I absolutely love. He remembered that Mattie died and he cutely said...... "don't you know I have been sitting in my office each day just waiting for you to come back!" He meant it in a sweet way, and he got me laughing,

This afternoon, I received an unexpected email. Sometimes when you receive an email that you weren't expecting, it makes you pause and appreciate the message. I received a lovely message from Ann's cousin today. Helen lives in Massachusetts, and was out in her yard raking leaves and saw two glorious flowers blooming. She took pictures of a lovely white azalea and a beautiful pink rhododendron, and shared them with me. She knows how much I love flowers, and with Boston getting colder it was surprising to see these delicate treasures doing so well. I guess these plants really do live up to their name.....shrubs for all seasons! Somehow seeing these photos brought a smile to my face, because even in harsh weather, beauty (as seen in these flowers) finds its way out into the world.

I was called to a special meeting between the DC Board of Professional Counseling (which regulates and oversees the licensing and practice of counselors in the District, of which I am the chair) and the director of the DC Department of Mental Health today. An issue was brought to my attention which has been preventing Professional Counselors from being recognized as independent and qualified providers of mental health services. I won't bore you with the details, but I have been thinking about this meeting all week. Most likely because this turfdom issue is prevalent throughout the District and unfortunately the Nation. Sometimes others (and I don't mean the public, I mean other mental health providers) need to be educated regarding the qualifications of my profession. So today, I came into this meeting with my facts and a great deal of passion. One of the skills I used to have, and I suppose I used it quite often when Mattie had cancer, was advocating for a cause or a person. If I am responsible for you, then honestly watch out, because you will most likely not want to mess with me while protecting this cause/person. Today, the head attorney for the DC Department of Mental Health, experienced this side of me, and by the time I finished with her, she was apologizing to all of us for NOT doing her homework! In fact, when the meeting was over three of my board's staff came to talk with me. Two of them have seen this side of me, which is most likely why I was asked to come to the meeting, but the senior deputy director of the DC Department of Health couldn't get over my transformation. He says I always look so sweet, yet as he saw, when I get passionate about a subject, I am far from sweet. Armed with facts and my convictions, I am a powerful force. By the time the meeting was over, I felt very good about myself. I saw a side of myself I haven't seen since Mattie got sick. A side that could think clearly, sharply, and had the energy to get people to listen and understand my point of view. It was an empowering feeling, and one I rarely feel anymore.

When Peter got home tonight, we went out to dinner, to our neighborhood restaurant. The irony is I am an avid Cheers (the TV show) watcher, and for Peter and I, this restaurant is our Cheers. Everyone knows us in there, what our preferences are, and they know all about Mattie. In fact, Mattie also used to go with us to the Magic Gourd. Somehow each week when we dine there, they surprise us with something else. Tonight the surprise was fresh blackberries for dessert. They were so wonderful, I ate Peter's share and my own. Peter got to hear all about my day today, and at the end of dinner, when I opened up a fortune cookie (Mattie's favorite part), I had two fortunes to read. Seems symbolic somehow of the day I had.

Thursday, November 18, 2010

Thursday, November 18, 2010

Tonight's picture was taken in August of 2002, Mattie was four months old. This saucer was one of Mattie's favorite things to sit and play in. Right from the beginning Mattie had the desire to learn to walk. He strongly disliked sitting on the floor, despised tummy time (refused to do this!), and had NO interest in crawling. At first though neither Mattie or I appreciated this saucer. I did not like its huge footprint, as I took over my living room. As any new mom knows, it takes an adjustment period to see one's home transformed from a place where adults lived, to a full blown daycare center. I learned quickly. When Peter picked Mattie up and placed him in this saucer, Mattie was hysterical. He was frightened, crying, and wanted OUT! But since this was a gift, and it was assembled in my living room, I was determined to be open minded. So after about the third time Mattie sat in this seat, he LOVED it! He loved the freedom, the mobility it gave him with his legs and feet, and he enjoyed making noise and literally jumping up and down in this thing. As I was selecting the photo for tonight, I originally was going to pick a more recent photo of Mattie, however, I just did not want to see him sick tonight on the blog. This picture, to me, captured the potential and hope we had for Mattie, not unlike any parent who looks at their young child and wonders what he/she will become. However, in our case, we will never find out. 


To Realize

To realize
The value of a sister/brother:
Ask someone who doesn't have one.
To realize
The value of ten years:
Ask a newly divorced couple.
To realize
The value of four years:
Ask a graduate.
To realize
The value of one year:
Ask a student who has failed a final exam.
To realize
The value of nine months:
Ask a mother who gave birth to a stillborn.
To realize
The value of one month:
Ask a mother Who has given birth to a premature baby.
To realize
The value of one week:
Ask an editor of a weekly newspaper.
To realize
The value of one minute:
Ask a person who has missed the train, bus or plane.
To realize
The value of one second:
Ask a person who has survived an accident.
To realize
The value of a child or family member or a good friend:
LOSE ONE.
Treasure every moment you have.
You will treasure it even more when
You can share it with someone special.
Time waits for no one.

Peter sent me this poem entitled, To Realize, today. The whole premise of the poem is absolutely correct and yet unfortunate. It is unfortunate that we take certain things for granted and expect they will always be there. When we lose them, then we take notice, and realize how lucky we were before the event in question happened. It is my hope that through my constant writing for two years that my readers have an enhanced understanding for the value of a child, and that you do NOT have to lose yours to grasp the pain, devastation, and uncertainty about the future as a result of such a loss.

I met Ann at the mall today, as she is planning a scavenger hunt this weekend for her daughter's birthday party. Ann has been working on this for a while, in order to generate just the right questions for the hunt. We went back today to make sure that the merchandise and window displays matched up with all the questions being asked. Somehow in all my trips to the mall, I NEVER ventured into two stores in particular, Abercrombie and Fitch and Hollister. Well I have to tell you, I was absolutely taken aback as soon as I entered these stores. They are both owned by the same company, and Hollister is the California apparel version of Abercrombie. When I entered both stores, I frankly was assaulted by loud music, darkness (there are ABSOLUTELY no windows or natural light coming into the stores), misting machines releasing subtle fragrances, and pin spot lighting. If I did not see clothes displayed, I would have thought I just entered a nightclub. All of the employees in the store are energetic and friendly and greeted us with "what's up" or "hey!" Naturally these stores, I assume, appeal to a certain age demographic. But the atmosphere inside the stores intrigued me so that I went on line and googled the stores when I got home. I attached the links to both stores below. Why? Because I want you to see the pictures of the individual featured on both websites. I remember when I was teaching child and adolescent development, one of the issues my students would investigate was the role that the media played in teen body image development. I can't think of a more blatant message these stores are selling to our youth and I find it concerning on so many levels.

Abercrombie and Fitch: http://www.abercrombie.com/webapp/wcs/stores/servlet/home_10051_10901_-1
Hollister: http://www.hollisterco.com/webapp/wcs/stores/servlet/home_10251_10201_-1

I had the wonderful opportunity to see Margaret today for lunch. As many of my faithful readers know, Margaret was Mattie's preschool teacher and is my friend. We shared several items together at lunch, chatted for hours, and covered a lot of territory together. When I first arrived at lunch I felt very anxious and tense, nothing to do with Margaret, but over time I began to unwind. I am sure Margaret sensed my feelings, but did not call attention to them. Margaret and I both enjoy restaurants with atmosphere, conversing, and not feeling rushed.

One of the things I discussed with Margaret is the concept of friendship. I have learned many lessons over the course of Mattie's illness and death about some of my friendships, relationships I had for ten or more years prior to Mattie getting sick. Some of the closest friendships I had, or thought I had, did not weather cancer. To me this was very surprising and hurtful at the same time. Mainly because in my mind friendships that last the test of time, I always considered to be more solid. But that isn't always the case, and Margaret and I processed that today and the feelings associated with the loss of friendships on top of losing my son. This is a topic I rarely talk about on the blog, but none the less, a topic that has been pervasive over the last two years. I do not want to elaborate on this further tonight, but I did want to mention that the aftermath of cancer does not always bond friends and family further together. Sometimes it severs it apart. As always I appreciated my time together with Margaret, the connections we share, and the memories captured of Mattie within her classroom. It is within Margaret's classroom that Mattie met Zachary and learned the beauty of having and being a good friend. Margaret and I talked about Mattie and Zachary's friendship and in many ways, they were soul mates. They were comfortable with each other, respected each other (though they had differences), and connected on a deep level. Some of us can spend a lifetime looking for that type of friend, Mattie found that friend on the first day of preschool.

This evening, Peter and I went out to dinner with our friend Tamra and her husband, Ken. I met Tamra when she signed up to be an involved member of Team Mattie. I never had the opportunity to get to know Tamra prior to Mattie having cancer, most likely because her daughters were on the upper school campus and Mattie was at the lower school campus. There were many families over the course of Mattie's battle who rose to the occasion to help us in incredible ways. People who we did not even know. I saw the saying, ordinary people doing extraordinary things, come to life before my eyes for over 15 months. I am always fascinated by altruistic acts. I remember my biology professor in college telling his class that humans DO NOT perform altruistic acts, that we only do things for others mainly because of our biological connectiveness to them. He would argue that people doing something for others, who they weren't related to, have ulterior motives. Rather cynical, and perhaps I believed that at one time, but Mattie's cancer helped me see random acts of kindness on a daily basis.

Tamra did not know us or Mattie, and yet something inside her responded to the Team Mattie call for help. I believe she began helping us initially because we were part of the school community and also lived in Washington, DC. The majority of families who attend Mattie's school are from Virginia. Tamra is also very familiar with the world of cancer and has advocated for individuals struck by this disease for years. So all of these explanations may help us understand why she initially got involved with our family. But the reasons our connection grew and evolved over time has to do with so much more than performing tasks. It has to do with several things such as feeling love for a little boy battling osteosarcoma. A battle she read about daily on the blog and saw first hand on several hospital visits. In fact toward the end of Mattie's life, Tamra came by each day at the hospital with coffee, tea and breakfast for us. Some days we talked and other days, she could see talking was too taxing. Our connections also deepened as Tamra can easily imagine the devastation Peter and I face each day without Mattie's presence. These are just a few reasons, but I think what causes people to do acts of kindness are very much intertwined with feelings. Though our crisis of caring for Mattie is over, Tamra still reaches out to me on a regular basis and sends me messages, drops off gifts, and foods and goodies she has cooked. I do not forget thoughtful acts, kind words, and heartfelt gestures, and Peter and I enjoyed the opportunity to celebrate Tamra's birthday and letting her know she is appreciated.

Wednesday, November 17, 2010

Wednesday, November 17, 2010

Tonight's picture was taken in July of 2009. Mattie was in the Lombardi Clinic with Peter and his big buddy, Brandon. I missed this excitement, but apparently Jenny (one of Mattie's amazing art therapists) inspired this creation that stands before you, by giving Mattie a styrofoam head that day. With just the head, Mattie transformed it into a whole character. I introduce you to Dr. Crazyhair. Dr. Crazyhair has feathers for hair, he has an oyster shell in his pocket which was supposed to represent a patient's toenail that he pulled out, a stethoscope made out of pipe cleaners, and wears rubber gloves on his hands. The reason I am sharing Dr. Crazyhair with you tonight is because I was moving things around in our living room today, and one of the things I relocated was this fellow. He needed to be relocated because the other day, he collapsed right onto a begonia we brought inside. The begonia is still in shock from this encounter. Dr. Crazyhair takes up space, but to me it captures Mattie's humor and creativity. These are talents Mattie had even when his body was slowly being taken over by osteosarcoma. Hard to believe behind that beautiful smile lies a killer we could never see or stop. 


ABUNDANCE by Nancy Heller Moskowitz


It is so early, I've tossed and turned for...
My mind filled with many images
Each vying for a voice, a way to make sense
Of all that I am feeling.
The wind howled outside the window
Rain seemed to fall like a crashing wave against the surf.
It was there and then, SILENCE!
My mind was not silent.
I rarely leave the house without my book
To capture the moment, often confusing
As I jump from idea to idea.
How do I settle myself these days?
By writing.


As I was trying to fall asleep last night, a major thunder and lightning storm was occurring in the background. Storms were always something Mattie and Peter liked to watch together. In fact, they would open all the doors and windows in our home and examine the clouds, wind, and color of the sky. They would give me periodic updates on the a storm's progression. I did not share the same love and excitement for storms, but I always enjoyed watching them bond over this natural occurrence. Some how as I was drifting off to sleep, I had this image of Peter and Mattie in my head, and wondering if Mattie was watching this storm along with me last night.

I woke up this morning to a beautiful email from my friend Nancy. Nancy wrote tonight's poem and what strikes me about the poem is the last two lines..... "how do I settle myself these days? By writing." Writing has been the only constant and stable factor in my life for the past two years. It has become part of my routine and I am fortunate that there are still readers interested and willing to read the blog.  

I spent the day doing chores at home and then met Ann and her mom briefly. Mary (Ann's mom) has a cousin visiting, and it was lovely to finally meet a person I have heard so much about for the past two years. When Mary saw me today, she asked me where I was last night. What this translates into was she missed seeing me especially since we spent every evening together last week. It is always nice to hear when you are thought about and missed. I am not sure why today was a particularly hard day for me. It could be the continuation of yesterday's meeting and having to reflect on Mattie's death and end of life care. It could also be the aftermath of attending the Time of Remembrance ceremony on Sunday. Or it could just be me. On my mind today was that Ann's daughter was celebrating her 13th birthday. This is a huge milestone developmentally, becoming a teenager, and of course as you see your child grow and mature, it is a special occasion for a parent. As Ann was talking to Mary about the birth of her daughter 13 years ago, I had mixed feelings. I understood Ann's happiness, her sweet memories, and her thoughts about the future. However, at the same time I couldn't help but feel upset, angry, and saddened. Saddened because Mattie did not get a chance to have another birthday, and that I won't get the chance to be a parent and watch him grow. In fact these feelings were racing through my head all day, and I feel badly for even having them because as Ann's friend, I should be happy for her.

After lunch, I meandered through the Hallmark store. Well meandered may not describe my pace, perhaps flying through the aisles would be more appropriate. As I was flying by, I noticed a woman in red out of the corner of my eye. Despite moving fast, my mind registered that I knew this person, and therefore I stopped and backed up. It was Margaret (Mattie's preschool teacher and my friend). Margaret chuckled over my pace through the store, and as Margaret and I were talking, I slowed down and began appreciating the things around me. Margaret and I are scheduled to see each other for lunch tomorrow, so our chance meeting today was just meant to happen.

The hallmark store is a challenging place for me, even on a good day. But today was overload. The store has Christmas music playing, Christmas ornaments everywhere, and the colors and glow of the holidays. As I was absorbing all of this, one conclusion jumped out at me, Christmas (or at least the holiday that is marketed to our society) is for children. Without a child in your life, Christmas looks a bit different. If you think I am wrong, then I suggest you go out to a store this week, and enter it with the mindset that you don't have a child in your life. I would be curious to know how this makes you feel!?

I received a beautiful posting from Karen. Karen (not my lifetime friend, Karen) is Keaton's mom. Keaton died from Osteosarcoma, like Mattie. Karen and I have exchanged many an email over the course of the past two years. On days or weeks like this, when I feel isolated, unable to relate to others around me, and not sure what on earth is going to help me move forward, I receive an email like Karen's. Karen's email helped me understand that I am NOT alone, that she too is painfully grieving for the loss of her son, and she too is confronted with how to survive such a loss. Karen's words meant a lot to me and I encourage my readers to check out the link below to Keaton's website. Karen is a powerful writer as well.

I end tonight's posting with Karen's message and a link to Roberta Flack's song, Killing me softly. I agree Karen, I am telling my life with Mattie's words. So well stated!!!! Karen wrote, "For some reason, last week, I started reading back on Mattie's blogs, and ended up sitting for hours, and reading every post, back to the first of this blog. The more I read, the closer I felt to you, and I am amazed at how your words so exactly echo my feelings. Have you ever heard that old Roberta Flack song "Killing me softly?" In it the chorus goes,- He was strumming my heart with his fingers...telling my life with his words,... and another part of the lyrics say "I felt he'd found my diaries, and read each one aloud." Anyway, your words remind me of that song, and I feel that you are probably one person who really does understand just how I feel. Sometimes it seems to me that all those around me have made it through their grief, and gone on with their lives, while I have not even actually been able to accept the reality that my son is gone, and as such have not even started the real grieving process. But I do notice that those blinding flashes of reality that hit me like a lightning bolt of pain, seem to be occurring more often these days, and I am not sure how it is possible to survive this unspeakable loss, this impossible reality. Thanks for your support on Keaton's guest page..it means a lot to me." Karen, Mother of Keaton for Always www.caringbridge.org/visit/keatonlee

Roberta Flack's Killing me softly
http://www.youtube.com/watch?v=dpNdMIAnKko

Tuesday, November 16, 2010

Tuesday, November 16, 2010 -- Mattie died 62 weeks ago today.

Tonight's picture was taken in June of 2009. Mattie was visiting Tanja's house, and had a full day of excitement with her, Katharina, and Ann's children. Mattie got to go on Katharina's tree swing with me, he got to pop bubbles in their backyard, and even attended their neighborhood picnic. But I think what stood out most to Mattie that day was meeting Ginny. Ginny is Katharina's pet bird. As you can see Ginny found a very comfortable resting place on Mattie's Curious George knee immobilizer. In fact Ginny blended in beautifully with Mattie's t-shirt. Ginny and Mattie had a natural rapport that day, and unlike me, when Ginny flew up to Mattie, Mattie was calm and relaxed about it. As I reflect on Mattie's 62nd week that he is gone from our lives, I remember his love for animals and his connection to nature. To me, this picture illustrates that connection.

Quote of the day: There is no pain so great as the memory of joy in present grief. ~ Aeschylus


I began my day by visiting my six year old friend, Abby. Abby is the daughter of my friend, Mary (and I don't mean Ann's mom!). Abby wasn't feeling well and is home from school this week. I played with Abby this morning so that Mary could go to her other daughter's holiday event at school. I had the pleasure of getting to know Abby before so I already had a feeling for some of the things she likes to do. We watched a Scooby Doo episode together, and I naturally couldn't help but think of Mattie. Mattie LOVED Scooby Doo and I do not think there is an episode out there that Peter and I haven't seen, and multiple times! After the episode was over, Abby and I played solidly until Mary came home. Abby loves board games and she is a good player. Some of the games I had never played before, but she took the time to explain the rules of each of the games to me, which I appreciated. I can officially say I LOST every game today. Frankly after playing with Mattie intensely for over a year in the hospital (around the clock), I perfected the art of losing. I could lose on a continuum, and the more significant the loss the funnier I would get! Mattie loved it! Together Abby and I played several rounds of Uno, Sorry, Ungle Wiggy, Caraboo Island, Slamwich, and a Scooby Doo game. I LOST every time! It was humbling and Abby was laughing. We had a fun time together, and I appreciated her initiative to pick up and put away every item we played with. I of course helped her, but her thoughtfulness and sense of responsibility caught my attention.

I spent a couple of hours today reading the book, Saving Henry. I have written about this book before on the blog, and I find because of its emotionally laden content, it takes me longer to sift through the chapters. One thing that is apparent from reading this book, is that mothers will go through great lengths to try to save their children. I can relate to many of the feelings Laurie (the author) expresses in the book, from feeling powerless to help your child to feeling socially isolated from everyone. I am about half way done with the book, and I know unfortunately like Mattie, Henry did not make it.

On Tuesdays I try to help Ann out and pick her son, Michael, up from school. Each time Michael and I are together, he usually mentions Mattie or asks me a question about him. Last week's question was about Mattie's hair. Michael couldn't remember Mattie with hair or Mattie healthy for that matter. I can certainly relate to that and since I was Mattie's full time caregiver, I find it much harder to remember the healthy days. The cancer days are ever present to me. Today, while driving Michael home, he picked out a Highlights magazine of Mattie's that is still in the car. Instead of tossing it somewhere, he actually opened it up and was reading it to me. He told me he loved Highlights when he was younger. In the magazine there were all sorts of brain teasers, and Michael asked me each one, and I tried to respond. I appreciate Michael's questions, his sense of humor, and his singing voice.

This evening, I attended the Georgetown Hospital Pediatric Advisory Board. This is only my second meeting I have attended, since I am a relatively new board member. There are some topics I can become very passionate about, and when I do, I imagine that others are not sure how to react to me. One topic that we discussed is the necessity of training doctors and nurses on end of life care. Specifically how to help a dying child and his/her family. We were told that doctors are given outstanding ethics training regarding this issue. I have no doubt! But as I explained, we are NOT talking about an ethics issue. When helping someone die, along with their family, it requires professionals to understand, listen, and process feelings. It means being emotionally present for the devastating news a family has to face, and the potentially challenging issues that arise throughout the dying process. So from my perspective, I am talking about the humanistic and existential concerns that families and children face when dying, which are NOT black or white (like ethics), but instead filled with many shades of gray. I described Mattie's death as an illustration.

The doctor on the board told us that there is a protocol for each pediatric team as it relates to giving families bad news. Bad news, such as death, is delivered by a doctor. Well I addressed that issue right off the bat. What if circumstances arise so that this protocol isn't followed? What if a nurse has to give this news? Then what? In fact, despite doctors coming in and out of Mattie's room, none of them had the courage to tell me.... Mattie is dying. It was two nurses who confronted me, and when they told me, I was utterly shocked. However, after they told me, the question is now what? What is a nurse's role in helping a family whose child is dying? Clearly there has to be a role, since they are really the ones who do the one on one care in a hospital. In our case, we were fortunate, and though Mattie's nurses haven't lost many patients over the years, they rose to the occasion and helped us in extraordinary ways. But as I mentioned to the board, there needs to be a procedure in place for all medical personnel to follow when a family is in crisis, and I also expressed my concern for the nurses. Who cares for the caregiver after they have witnessed and helped a child with cancer die? This is a very valid question because of the close nature with which these nurses work with their patients and their families. My point in telling you this is by the time this two hour meeting was over, I was emotionally finished. I could remember Mattie's death and could visualize it. It is in times like this when I know most of the other board members have not lost their children and I feel out of place. Because they can't possibly understand me. Yes we may have all had to cope with seriously ill children at one point, but they did not see their children die. This is a big distinction. By the time I got home, I was upset, and Peter as usual got it right away.

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen, who remembers us each Tuesday! Kristen wrote, "I want to thank you. Everyday, when I think of you both and Mattie I reflect on life; its innocence and danger, its joy and humility, its long days spent waiting and its immeasurable losses blinked away. Thank you for giving me inspiration to find the blessings in the little moments of each day. Thinking of you this Tuesday and every day. Much Love."

Monday, November 15, 2010

Monday, November 15, 2010

Tonight's picture was taken after Mattie's sternotomy. We took Mattie outside to get some fresh air. Peter and I sat in this same location yesterday as we awaited for the "Time of Remembrance" ceremony to begin at the Hospital. However, unlike in June of 2009, there were only two of us sitting in this garden instead of three.  As I look at this picture, I remember the feeling of being SO naive. Naive in the sense that I thought we removed every tumor within Mattie's body, and that he had a real chance at survival.  Technically all the tumors that were detectable to the human eye were removed, but that certainly did not mean the cancer was wiped out at the cellular level. Clearly it wasn't! I want you to take notice of what was in Mattie's lap. It is a huge rock! He claimed this rock during our walk through one of Georgetown's gardens. Typically I don't allow him to take a rock, but this rock seemed important to him, and under the circumstances, I figured Georgetown would understand. Well this rock remains with us today. We use it to prop our front door open in the spring and summer months. It serves as a wonderful door stop, and when I see it, it reminds me of that walk we all took together that day at Georgetown Hospital.

Hymn of Promise by Natalie Sleeth

In the bulb there is a flower; in the seed, an apple tree; in cocoons, a hidden promise: butterflies will soon be free! In the cold and snow of winter there's a spring that waits to be, unrevealed until its season, something God alone can see. There's a song in every silence, seeking word and melody; there's a dawn in every darkness, bringing hope to you and me. From the past will come the future; what its holds, a mystery, unrevealed until its season, something God alone can see. In our end is our beginning; in our time, infinity; in our doubt there is believing; in our life, eternity. In our death, a resurrection; at least, a victory unrevealed until its season, something God alone can see.


This hymn was sung yesterday at the Georgetown University Hospital's "Time of Remembrance" ceremony. The music itself wasn't as memorable to me as the words. The words struck a chord with me because I relate to the bulbs, the seeds, and the hidden promises. Perhaps the outcome of things are only "something God alone can see." Yesterday's service was a message of promise and hope, and even a day later I am reflecting upon it, and its impact on me.

I continued talking about this ceremony today with my friend, Christine. We met each other for tea, and because Christine had to return to work, we tried to limit our time together. But that is not something we are good at, mainly because we enjoy chatting with one another. Our boys brought us together, and though Mattie is not with us, our friendship remains. To me that is rather unusual, since friendships established through children, do not always remain once the children migrate away from each other.

Christine and I talked about the challenges of parenthood, the challenges of being a teacher in today's society (where I feel teachers are no longer given the respect and authority they need to manage their own classrooms), and the generational differences we see between us and our children. In a way, when we were growing up, parents set expectations and the family's agenda, and the children in many ways followed the guidance and direction of their adults. In today's generation, parents are jumping through all sorts of hoops to meet their children's expectations, their needs, and their social calendar. I am not saying one philosophy is better than the other, but I do wonder what the long term ramifications are for raising a society of children who are used to getting what they want and when they want it? Christine and I discussed the importance of being able to occupy one's self without outside stimulation. This is definitely something that was expected of us when we growing up, and yet we won't tolerate this for our children. In a way, sometimes being bored stimulates one's creativity. Without having the chance to be bored, we lose the art form to self soothe and to develop and explore various interests. I told Christine I was listening to the radio this morning and the host had a travel agent on the air. The agent was encouraging people to drive to their Thanksgiving destination this year rather than fly. She said traveling by car now is SO much easier than when she was a child. Why? Because now you can plug the children into their iPods and DVD players. I get what she was saying, but I did not like the visualization. In fact I found it disturbing. The message this is sending is on a family vacation, instead of talking or even playing games together, we are spared this hassle because we can all plug into our own devices and have solitude. All I can say is wow, because it speaks volumes to a culture in which we rather be isolated and connected to things rather than people. In my perspective that is never a good sign.

I reflected on the ceremony at Georgetown with Christine, and as we were talking we discussed Mattie's several visits to her house when he had cancer. Mattie was unable to climb up and down her stairs and had trouble keeping up with her children while he was there on a play date. Somehow in a very subtle way, Christine became Mattie's legs that afternoon. She was sensitive to how this made him feel, and together they had fun with her role, rather than Mattie feeling inadequate in any way. What I distinctly felt from Christine today was that she tried very hard to earn Mattie's trust and respect, and some point during that afternoon together, she got it. In a way I could sense this connection with Mattie touched her deeply, as she can vividly reflect on what Mattie felt like when she picked him up. Very light and bony. In many ways, toward the end, Mattie was a skeleton of his former self. When you pick up a child who is so emaciated, it is hard to keep it together and not fall to pieces. But Christine did not. Instead she normalized things for Mattie and she gave Peter and I eight hours away from our caregiving responsibilities to plant our garden.

In many ways talking with Christine today about Mattie helped me see that I am not alone. Christine was able to verbalize how she and her family feel about Mattie's loss, and she did this in such a way that it caught my attention, because from my perspective on many days I feel like I am the only one (other than Peter and our families) who struggles with these feelings. When I feel like I am the only one feeling this way, I tend to keep these personal feelings to myself, because I figure no one will get them or appreciate them. So for me it was a morning of connecting with a friend and being understood.

I had the opportunity to see Ann today and heard all about her family trip and got to see some wonderful pictures. We chatted about her mom, Peter's birthday, and the ceremony at Georgetown. While addressing the audience at the Hospital yesterday, I could see that what I was saying caused others to take notice and for some to cry. As I was telling this to Ann, she did not seem surprised by this at all, since apparently while expressing emotions I have been told I pull on people's heart strings at times. Ann could see that telling Mattie's story yesterday was empowering for me, which is when she said... that is why you have to write a book. Ann and I reflected upon the time Mattie when had his first and only sleepover in his life, at her house. In a typical sleepover fashion, all the kids landed up staying in the same room. The only difference was Ann was in the room sleeping as well. In the middle of the night, Mattie whispered to Ann to get her attention, so as to not wake up the other kids in the room. He wanted her help going to the bathroom and he also wanted her to give him medicine. I think what struck Ann and I both with Mattie's behavior was his sensitivity to others even when he was so uncomfortable and in pain. I can picture these moments that Christine and Ann described to me today, and I guess what I most appreciate is that these memories exist and that they are willing to share them with me.

Sunday, November 14, 2010

Sunday, November 14, 2010

Tonight's picture was taken in February of 2009. My friend and colleague, Susan, came to visit Mattie in the Hospital. Susan had Mattie's number and always came armed with interesting things for him to do when she visited. That day, Susan gave Mattie a block of clay and in the clay were plastic dinosaur parts. Mattie had to put his goggles on and do some digging through the clay to excavate all the parts. He then assembled the parts to form the dinosaur you see before you in this picture. That sounds easier than it actually was, Mattie spent a great deal of time that afternoon sitting on the floor of his room, digging. We put a bed sheet on the floor, and literally there was clay and dust flying everywhere. Mattie LOVED it! After this adventure, he was exhausted. I captured that moment of happiness and exhaustion in this beautiful picture. This is one of my favorite photos of Mattie while he was in the hospital. Since we remembered Mattie today publicly at Georgetown, I feel this photo is very fitting for tonight's posting.


A remembrance day poem: We Remember Them by Roland B. Gittelsohn

In the rising of the sun and in its going down, we remember them. In the blowing of the wind and in the chill of winter, we remember them. In the opening of buds and in the rebirth of spring, we remember them. In the blueness of the sky and in the warmth of summer we remember them. In the rustling of leaves and in the beauty of autumn, we remember them. In the beginning of the year and when its ends, we remember them. When we are weary and in need of strength, we remember them. When we are lost and sick at heart, we remember them. When we have joys we yearn to share, we remember them. So long as we live, they too shall live, for they are now a part of us, as we remember them.

I spent a good portion of the morning debating back and forth as to whether I wanted to attend the Georgetown University Hospital "A Time of Remembrance" ceremony. Peter wasn't far behind me in my feelings and he already determined yesterday that he wasn't going to speak before the attendees today. I respected and understood his decision. I did commit to Rev. Sharon (the reverend who sat with us the night Mattie was dying and said a prayer for him before he died and after he died) that we would be coming, and a part of me felt we needed to do this for Mattie. Logistically whether we went or did not go, Mattie's memory would always be remembered within us, but there seems like there is a spiritual connection for us to return to where Mattie was treated and died.

Peter and I both selected a photo of Mattie that we brought to display during the ceremony. I selected the pumpkin picture that is permanently posted on the blog, and Peter selected a Christmas photo of the three of us! We arrived at the Hospital early, so we placed Mattie's photos down in the chapel and then sat outside in the sun. I was freezing, but sitting next to Peter and being in the sun helped. While we sat outside, we reflected on the very space we were in. We sat on this particular terrace overlooking the parking lot quite often when Mattie was a patient. While taking in the sights, it dawned on me or I should say it HIT me that....... I do not miss living in the Hospital at ALL! That is a big change from how I felt last year. Last year at this time, I desperately missed our Hospital community and felt so lost being home and away from this incredible support network. A network that became our 24 hour a day family. This year, I still miss the people, but I can't imagine living in those rooms or dealing with those bathrooms for another second.

When the ceremony began, we could see that there were several nurses and doctors we knew in attendance. Also behind me sat, Nancy. Nancy of the dynamic musical volunteer duo.... Jerry and Nancy. It was lovely to have Nancy's support behind us! The ceremony was about an hour, it included prayers, hymns (which were actually quite beautiful and I may post the words to them in the next few days), reflections, candle lighting, and staff and parent reflections. Rev. Sharon did another great job this year of delivering a powerful reflection. This year's message was of HOPE and how we can find hope after losing a child. When Mattie's name was called, Peter walked up to the front of the chapel and lit a candle. He told me he selected the candle right in the middle of the circle of other candles. Most likely as a symbolic gesture of Mattie being an important and prominent part of our family. There were two parent reflections today. Somehow there seemed like more to me last year, but then again, I was in such a fog then. This year, I was able to focus on what was being said, and did quite well for most of the ceremony, until one of the hospital nurse administrators spoke. Alice spoke about the role of a nurse, their bed side manner, their care and concern for our children, and how they are personally affected when our children die. Needless to say, Alice's message brought back many memories for me. Her message touched my heart, and caused me to let down my guard. Which is a good thing, but with that comes many emotions that don't end once the ceremony does.

I had been thinking all week about what I wanted to say today. I purposefully did NOT write anything down because I did not want a script, I wanted to speak from the heart. Despite this desire, I did spend some time thinking about what I would say, because in such an emotional arena, coming prepared is vital. I tried to recreate what I said this afternoon for you:

_________________________________________

Hello, my name is Vicki Brown and in my hands is a picture of my son Mattie. Mattie was diagnosed with Osteosarcoma in July of 2008, when he was six years old. After many months of grueling chemotherapy and surgeries, he died in September of 2009. Mattie was a healthy child up until age six. When I attended this ceremony last year, Mattie had died two months before. I was rather numb last year, and therefore attending this ceremony and speaking was far less emotional for me. This year, I am up here representing my husband, Peter (who is sitting in the audience) and I. 

I would like to share with you some of the things I learned this year, during my first year of grieving. I say that, because I now understand that grieving the loss of a child is a life long commitment. I have heard many cliches this year as others have tried to comfort me or help me mourn the loss of Mattie. But that is all they are, they are CLICHES, and I HATE them. My top three are: 1) Time heals all wounds, 2) God doesn't give you anymore than you can handle, and 3) there is a reason for everything that happens. Well I can assure you time doesn't heal all wounds, God can give you more things than you can handle, and honestly what possible reason is there to take away the life of a child? Anyone who believes these cliches HAS NOT lost a child!

Mattie was a fun loving, bright, energetic, and humorous little boy. He was also a boy who LOVED bugs. Mattie would come prepared during each hospital visit with a bag of plastic bugs. He got great delight out of scaring his nurses and watching them jump at the sight of one his realistic looking bugs. The nurses were our angels and they played along with Mattie and allowed him to be the free spirit that he was. Now that Mattie is gone, I find that I am turning to nature to connect with him. For perhaps the first time in my life I have noticed butterflies, hundreds of them, and frankly the moon never seemed so bright to me as it has this year.

Losing a child is NEVER about forgetting it is about remembering and I am so happy Georgetown gives us this opportunity to share our memories together.
____________________________________________

After the ceremony was over, I had many people come up to talk with me. Parents appreciated my candor about expressing grieving as a life long process. This is how I feel and it was comforting on some level to know that others feel exactly like me. It was like we were all speaking the same language today. I had the opportunity to speak to one couple who lost their daughter, and we literally said at the same time, that we both feel as if our former selves have died, and now we are left to exist on a day to day basis. Another woman came up to talk with me, and she lost her son 8 years ago. She wanted me to know that his death still pains her, and that I am absolutely right, the pain remains always.

As we left the chapel, we saw Brenna. Brenna was one of the outstanding PICU nurses assigned to Mattie's care during one of his limb salvaging surgeries and for his sternotomy. Some of my faithful readers may recall that Mattie strongly disliked the respiratory care therapists at the hospital. They wanted him to do breathing exercises post-surgery and literally would stand over him and watch him do them. They clearly did not understand Mattie, and Mattie refused their treatment. It made for some challenging times for me who had to serve as his interference and advocate. Needless to say, when you don't listen to me, I report you, and I met with the Head of Respiratory Therapy at the hospital and explained my concerns for Mattie and the other children on the floor. In the midst of all of this, Brenna (a PICU nurse) devised her own ingenious respiratory therapy game using Sponge Bob (A Mattie Favorite!!!), water, a hospital basin, and two straws. The goal of the game was to see who could blow Sponge Bob down the river in a plastic cup boat and cross the finish line to win the race. Naturally my role that entire year was to be a complete screw up! I played the role very well. Mattie won each Sponge Bob race, and he really was using his lungs in this game. This game became a lifesaver to me, and Brenna earned a special place within my heart. She is an exceptional nurse, but also an incredibly compassionate person. She worked hard to gain Mattie's trust, but she indeed got it. 

When we saw Brenna today, we learned (or could see!!) that she is pregnant with twins. She was a beautiful sight to see and despite carrying two, she is in good spirits and is able to do her 12 hour shifts. While talking to Brenna, Anthony approached us. Anthony is a volunteer at the hospital and plays the violin. In fact, each time Anthony was at the hospital, Mattie seemed to allow Anthony to play and to interact with him. Which was unusual, since Mattie was very selective. Anthony came up to me to let me know how much he appreciated Mattie and how special he was. He told me that Mattie was always clear about what he wanted and was able to speak up to get his needs met. He said that there were days where Mattie told him he heard enough and it was time for the music to stop. Anthony said that he appreciated Mattie's candor because many times children don't give him feedback and it is therefore hard to know when to play or when not to play without such communication. What Anthony then said hit a chord with me, and that was Mattie had a way of getting other kids to be engaged and to listen. I would have to say Anthony was correct. Mattie was a force, and what Peter and I find so fascinating today with conversing with Brenna and Anthony is that they did not ONLY work with Mattie, they UNDERSTOOD Mattie. I was actually very touched to hear about Mattie through their eyes, hearts, and memories. In fact, this was even more beneficial than the Remembrance Ceremony itself.  

As we were driving home, Peter asked me if I saw the flashing light bulb in the chapel. I hadn't noticed, so I asked him to tell me more. Peter said throughout the ceremony a light bulb behind a piece of stained glass was flashing. So after the ceremony was over, he went over to look at the bulb. What was on the piece of stained glass in front of the blinking bulb? But the name, Matthew, for St. Matthew. I told Peter that I viewed this as a sign from Mattie. He was trying to get Peter's attention during the service and in typical Mattie fashion it WORKED!

Later today, I visited Mary (Ann's mom). On my drive to Alexandria, right over my head flew a beautiful Great Blue Heron. It was a graceful and peaceful sight, and it made me pause and think of Mattie. As this mom I met today, who lost her son 8 years ago, said to me...... Mattie is my angel and he is all around me. I just need to look!

Tonight was my last evening with Mary. I brought her dinner and we chatted. But both of us were simply off today. I know I was off because I spent an hour crying and felt wiped out from that experience. As I left Mary tonight, I explained that Ann was coming back and this was my last night I would be visiting. I told her I enjoyed our time together this week, and she agreed. Mary is certain I should have been a nurse. I always laugh when she says that, but at the same time take this feedback as a high compliment.