Friday, February 24, 2012

Friday, February 24, 2012

Tonight's picture was taken in June of 2002. Mattie was two months old and Peter, I have no doubt, snapped this picture because in our home this was a novel sight. Mattie rarely napped, but if he did, he usually was attached to me. Mattie was a precious bundle and from this picture he also was an angelic one.


Quote of the day: Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow. ~ Mary Anne Radmacher

Anyone who has had to face a challenge or obstacle, would probably admit that it wasn't possible to manage without courage. Courage is the quiet character that is needed to persevere when things seem at there worst, or with no end in sight. We all have defining moments to reflect upon, and perhaps my greatest one was helping Mattie battle cancer and then to help him die. This battle remains so fresh in my mind, which is why having to deal with my current unknown situation is causing me great angst. Within the last three weeks, there have been many feelings that "roar" within me, but listening to my "quiet voice" is truly hard. 

I spent part of the day working on the Foundation's Symposium. I have assembled a great group of psycho-oncologists to work with, and I am truly enjoying my interaction with the psychologist from Children's Hospital of Philadelphia who I appointed as our scientific chair for the event. Over the past two weeks, I have targeted organizations and individuals to personally invite to the Symposium and I am thrilled so far with the response, and hope that is indicative of the need for such a venue.

At lunch time I met up with my friend Tina. Today was Tina's birthday, and we had a lovely time together over food and conversation. Despite how I am feeling, it made me feel good to make someone else happy. Lunch was the highlight of my day, because after that I came home and returned to being in a mood, with a bad headache, and simply not feeling well. When Peter got home from work, he found me in pajamas and in bed and quickly assessed dinner was not getting made by me. So instead he made it, brought it upstairs, and we watched a movie together while I ate in bed. Not a typical occurrence for me, but then again the last three weeks have been sheer havoc for me.

Thursday, February 23, 2012

Thursday, February 23, 2012

Tonight's picture was taken in June of 2002. Mattie was only two months old. However, when I look at some of Mattie's baby pictures he seemed so contemplative. I remember in kindergarten Mattie got a progress report from his school, and that first semester his art teacher described Mattie in the report as an "old soul." I think Debbie was indeed right, because in many ways Mattie just understood and felt certain things that were beyond his years.


Quote of the day: How far that little candle throws his beams! So shines a good deed in a weary world. ~ William Shakespeare


"So shines a good deed in a weary world!" I love this Shakespeare quote because I do believe it is the small things we do that make a large difference to people. It is ironic that I should reflect on this quote this evening, because recently one of the business school groups we are working with this semester submitted an analysis to us about the Foundation. One of the comments they had for us was that to grow larger we need to conserve our money for bigger and more nationally focused projects. Rather than for example, raise money to support a child life program at one hospital. Though I understand what they are saying in theory, I did push back at this group because I believe making a tangible difference (even if it is at one hospital) in the lives of children and their families battling cancer is imperative and at the end of the day, it is this that makes me feel good about what we are accomplishing. In order to have a national presence, I strongly believe a local one is needed first and also I find through working at Georgetown I continue to be made aware of the needs of families. Which is very grounding and humbling.

Today I had my first acupuncture experience. As I was sitting with the therapist for the first thirty minutes going over all the reasons that brought me to see her, I became overwhelmed with my own list. In fact, at one point I paused and said to her that if I were her, I would be thinking how does someone my age present with all of these health issues? She responded by saying that she was not taken aback but was more in amazement that I am dealing with all of this. I learned today that there is a difference between Chinese versus Japanese acupuncture. The therapist I saw today is trained in Japanese acupuncture techniques.

Japanese acupuncture significantly differs from other styles in its delicacy.
The obvious differences between Japanese and, say, Chinese practice, are that the needles are far finer (using needles barely thicker than a human hair), and that they are inserted often barely deeper than 1 or 2mm, with an absolute minimum of manipulation (thankfully because I have heard from others that this can be painful!). These techniques demand far greater precision and care than normal acupuncture. The therapist worked very hard today at trying to reduce my headache. I had needles in my feet, legs, arms, hands, stomach, neck, face, and head. I must admit that this hour long session did help to relax me, but my head is still pounding. I have had daily headaches for ten years now, so I cannot imagine they will go away quickly, yet I am hoping over time they become more manageable.

I have Foundation work piling up all around me, and yet between my headaches and my latest medical concern, I feel very distracted and on overload. I cannot seem to get relief from the headaches and they are absolutely debilitating in addition to other physical symptoms I am contending with. What weighs on my mind, and will for the next several days, is whether to have a biopsy next week. For those of you reading along and for writing to me, I thank you!

Wednesday, February 22, 2012

Wednesday, February 22, 2012

Tonight's picture was taken in June of 2002. Mattie was very fond of his car seat. This was where he actually slept at night, because he hated lying flat or being in his crib. When he began to eat cereal at four months of age, he accomplished this in his car seat too. I am not sure what we would have done without this car seat, because Mattie was so turned off to his crib, stroller, and swing. In this picture Mattie was only two months old and from my perspective he was smiling and laughing at me. Though I recall his pediatrician insisted that babies at this age can't smile and felt that this gesture was simply "gas." Regardless, from my point of view, Mattie was tracking me and smiling!


Quote of the day: The future will be different if we make the present different. ~ Peter Maurin


Peter and I had our last meeting with the Georgetown University business school class. The Foundation served as the class' community based learning project this semester, and we were invited to class so that each student group could present to us, their "client." Each group developed strategies to help us grow, to enhance our visibly, and to expand our use of technology and social networking. I must say that I came into this class today very tired and extremely stressed out given my past three weeks. Naturally the students are not aware of what I am worried about, nonetheless, my medical concern does cloud every aspect of what I do and how I live my life right now. So I admit to being a little more sensitive and irritable. The Foundation for me is personal and emotional, and in order to work effectively with me on brainstorming the enhancement and development of this organization, I need to feel that others have a certain level of buy in and connection to our story, to Mattie, and the battle children and families face each day when contending with childhood cancer. I did not feel connected to this group of students at all emotionally. They certainly presented some interesting ideas and we look forward to their final reports, but I had to step back and understand the differences in personality, priorities, and the make up of a business graduate student versus my counseling graduate students.

At the end of class, I took a picture of Peter with the entire class!

After this class session today, I journeyed back to the Lombardi Cancer Center to try to get some answers to my latest debate.... can my mass be biopsied? The sad commentary to all of this is that I am treated with kid gloves because I lost Mattie to cancer. I don't mean that doctors are sensitive to my emotional loss (though some are), but I suspect doctors feel I need to be monitored extra closely because of the simple fact that I produced a son who developed an aggressive cancer and died.

Tomorrow I will have my first acupuncture appointment. That may not sound like a big deal, but you need to understand for me to turn to alternative medicine for pain management, means I am desperate and have reached my limit with chronic pain. I am staying open minded about tomorrow and truly hope that help or relief is on the way.

Tuesday, February 21, 2012

Tuesday, February 21, 2012 -- Mattie died 128 weeks ago today.

Tonight's picture was taken in June of 2002. Mattie was two months old and sitting in Peter's arms on our deck. We learned early on that Mattie preferred to be outside, in the fresh air, and not confined by blankets. As today marks the beginning of the 128th week without Mattie in our lives, I find that looking at these baby pictures helps to confirm that we missed nothing. Mattie looked like a happy, typical, and healthy baby.


Quote of the day: I have not failed. I've just found 10,000 ways that won't work. ~ Thomas Edison


In a way I feel as if I relate to Edison's quote tonight. I saw a third oncologist today to consult on my situation. The reason I sought a third opinion, is I wanted this doctor to confirm one of the two opinions that have already been presented to me. However, in true medical fashion, that is NOT what happened at all. Instead, I had a third opinion which I hadn't expected come my way. Keep in mind that each of these three doctors are highly regarded in their field and are associated with major hospitals in my area.

Today's physician was referred to me by Kristen, Mattie's oncologist. This doctor is considered a skilled surgeon and has expertise in robotic surgical technology. I knew this going into the appointment, however, even if I wasn't aware of this, I could tell from his examination that he had skilled hands. He found the mass right away on touch and his examination was less painful than most. This doctor feels he can biopsy this mass and we scheduled this procedure to be done next week. However, what perplexes me is that my other two doctors felt this procedure could not be done given the location of the mass. So why the discrepancy? It isn't like I have two small community hospitals looking at these scans and doing internal exams on me. These are experienced people in their field working at research and teaching hospitals. So after my appointment today, I worked on connecting with my other two doctors and plan to get down to the bottom of this in the next couple of days. But in all reality this is modern medicine today as it relates to a complex issue..... the patient is left to get smart on the problem and make an intelligent decision based on the information presented. Seems to me I should get an honorary medical degree after all of this.

Tomorrow, in the midst of all of this on my mind, Peter and I are going to Georgetown Business School to meet up with the class we are working with this semester. The student groups are presenting their Foundation ideas and are looking to us for our feedback and input. In the state I am in, they are lucky I can even concentrate on what they are saying. 

Monday, February 20, 2012

Monday, February 20, 2012

Tonight's picture was taken in May of 2002. Mattie was a month old and I must have snapped this picture because I was stunned that he was napping. Mattie was NOT a napper at all. His pediatrician used to make me nuts with her pronouncement that babies have to nap and the benefits of napping. Nap time in our home was absolutely ridiculous, because I would go to great lengths to try to get Mattie to sleep. However, if I moved even an inch away from him, he would be up and crying. By the time Mattie turned one, I rationalized with myself that if he wanted to sleep he would, but I no longer was going to be working for 45 minutes to try to get him to nap. Mattie and I found our own rhythm together, one that wasn't covered in any baby book or doctor's office. It maybe hard to really see this from the angle of this picture, but when I saw it today, it reminded me of the beauty of Mattie's nose. Mattie's nostrils formed a heart, and I recall many a day while he was napping admiring that very sweet feature about his face.  

Quote of the day: The essential thing is not knowledge, but character. ~
Joseph Le Conte

I continue to be worn down by a horrific headache. It is so bad that it is hard to keep my eyes open due to the pain. Yet I knew staying home all day wasn't a solution either. So today Peter and I went to Huntley Meadows Park. This 1,500-acre park is one of the largest non-tidal wetlands in our area. We hadn't visited this park in a long time and to me our visit was overdue. I love the boardwalk at this park, which takes its traveler over beautiful wetlands where you can see some wonderful birds. As soon as we walked on the boardwalk today, I noticed the ducks and Peter made two observations. The first observation was that the wetlands looked flooded, more like a pond then what we were used to seeing. The second observation was the boardwalk structure looked completely new. Peter was right on both accounts. The boardwalk wood had been replaced with an environmentally friendly material in October of 2010 and the area clearly had a very busy beaver building dams and creating ponds which never seemed to exist on previous visits.

As we kept walking along, here was the next beautiful sight we saw, an egret. This egret was rather camera shy today, but nonetheless was a special sight to see on a February day!

Peter was very happy to see this mud and stick structure, or in other words, a beaver lodge. This confirmed the presence of a beaver in the area. A beaver lodge, or its home, has underwater entrances to make entry nearly impossible for any other animal.

The walk and getting outside was the highlight of our day. Tomorrow we head to see another doctor for a consultation. So this will be the third oncologist I have seen in two weeks. I am hoping he can shed additional insights on my situation and care plan. Nonetheless all of this is highly stressful for me and exacerbates my already daily headaches. So I am shutting down the computer for the night to rest my head and eyes.

Sunday, February 19, 2012

nSunday, February 19, 2012

Tonight's picture was taken in May of 2002. Mattie was one month old and that afternoon I decided to take all sorts of pictures of him to create a birth announcement. Though I never used this picture, I happen to love it! It shows Mattie's curiosity and intrigue with following my every move.

Quote of the day: Imagination enhances our lives by supplementing the inadequacies of the real world, or our experience of it, and can also give us the vision to transform present reality into something new and better.  Erik Blumenthal


Today was a day ruled by imagination. Not my imagination, but that of my friends. I met up with Tanja and Katharina in the morning. Katharina celebrated her 12th birthday last Friday, and though we had plans last week to make her day memorable, they graciously rescheduled these plans because of my medical issues. We had a lovely lunch together and chatted about all sorts of things. Katharina even surprised me with a few gifts of my own. She picked out a bracelet for me that says Mother, Love, Forever. It has to be one of the most thoughtful gifts I have received, and it means even more because it was given to me by a child. After lunch, Tanja arranged for all of us to have a double chocolate pedicure at the Hotel W in Washington, DC. I knew such a thing was possible in Hershey, PA, but I did not know such fun existed in my hometown.

Tanja snapped a picture of Katharina and I getting a pedicure. What made the day extra special was knowing that Katharina had never been to a spa before nor had she ever had a pedicure before. So it was very special to share these firsts with her. She enjoyed it, and the fragrance of chocolate was intoxicating. They even gave us hot chocolate to drink! A chocolate pedicure is an incredible experience for a chocolate lover. Mind you, you aren't putting your feet in a bowl of chocolate, but instead your feet soak in warm milk with chocolate shavings, and then all the products used have essences of chocolate and chocolate oils. I was thrilled to be introduced to this heavenly experience.

I told Katharina that in a way she also helped to inspire a party my friend Tina was hosting for her daughter this evening. One day a couple of weeks ago, I told Tina that I wanted to do something special for Katharina's birthday. So Tina began brainstorming all sorts of ideas with me. In the process, she was mentioning the wonderful cupcake stores in DC and Virginia. Her conversation inspired me and I told Tina in jest that she could plan my next birthday party ----sweet store hopping. So tonight I got to see what such a party actually looked like in action and I had the honor of being invited.

There were 17 girls at the birthday party today and in order to get them to six different stores, Tina creatively had a solution to this transportation issue. She rented this amazing pink limo. This limo caught the attention of almost everyone we passed in Georgetown. People were snapping pictures of it and the girls inside the car were excited and felt special. Tonight's adventure I have no doubt was something these girls won't forget anytime soon. It was like being a character in the movie Willie Wonka and The Chocolate Factory, and of course the big difference was there was no flying glass elevator. Instead, we had the longest and most pink car I have ever seen.

This pink number took us to six different sweet locations: Sprinkles, Georgetown Cupcake, Pops, Sugar Cube, Alexandria Cupcake, and the Dairy Godmother. Our first two stops were in Georgetown, and each time we got out of the car, people would come over to talk with us and wanted to know what the occasion was and how they could rent this car. This car got the attention of both young and old and the girls inside the car were having a great time, singing along, joking around with each other, and if there were room to dance, they would have been doing that too.

Some of our stops were crowded. For example, Georgetown Cupcake (MY FAVORITE ON THE TOUR!) is so popular, the line to get into the store was about two blocks long. But Tina preordered cupcakes and simply walked into the store, grabbed the box (with mini strawberry cupcakes inside---which were incredible) and then the girls got to enjoy them in the limo (as you can see in this picture). At each location stop, all the girls got out and we took a landmark picture!

One of the stops along the way was to a candy store called Sugar Cube. Though we took photos of the girls at each location, I think this one gives you a feeling for the energy level, fun, and happiness within this group.

I did things today I had never really done before. I am so lucky to have friends who want me to share in these special moments and include me in this way. Naturally of course, I am grateful and happy for this, and yet at the same time I would be lying if I did not say it is hard to know that I won't have these special moments with my Mattie.

Saturday, February 18, 2012

Saturday, February 18, 2012

Tonight's picture was taken in May of 2002. Mattie was a month old and getting some fresh air with me outside on our deck. If you look closely in the background of this picture, you will see Patches. She was also sitting outside with us on a white deck chair. I love the facial expression that Peter captured of Mattie. This was what Mattie looked like after being fed, he was very calm and mellow. That moment was short lived typically, but these were moments I distinctively remember.


Quote of the day: Success is not final, failure is not fatal. It's the courage to continue that counts. ~ Winston Churchill


It's the courage to continue that counts! What a brilliant quote, and though I do not think Churchill had grief in mind when he stated this, I believe it so aptly applies. Since it takes great courage to continue on after losing a child. When you look at the picture above and see a happy and healthy baby, it simply perplexes me how Mattie could then develop Osteosarcoma. When life doesn't bring you what you expect or hope for, disillusionment can easily settle in. Feeling disillusioned and with a lack of hope, can lead to a whole host of other emotions and problems. Which is why reflecting on Churchill's quote is so meaningful to me.

Despite feeling debilitated physically and emotionally, I got myself together today and took a walk with Peter by the Potomac River and then we had lunch out. Sometimes at home I feel so overwhelmed that I am unable to eat, and therefore getting out and in a different environment, enables me to change my mindset, which improves my appetite.

But as this evening settles in, I find that I am contending with a terrible migraine and really can't focus on anything, including writing the blog. So I will stop writing for tonight and hope that tomorrow is a better day.

Friday, February 17, 2012

Friday, February 17, 2012

Tonight's picture was taken in January of 2008. One weekend we took Mattie to Mason Neck State Park to walk around and explore. In typical Mattie fashion, he found himself a stick that he carried with him throughout the park. As some of my faithful readers may recall, Mattie collected a walking stick on all his nature adventures. But Mattie wouldn't toss the stick once the walk was over. OH NO! Instead, he would transport the stick home with us and then add it to his stick collection in our complex's common space.
This stick collection still exists today, though ivy has grown in and amongst the sticks. 


Quote of the day: Kind words can be short and easy to speak, but their echoes are truly endless. ~ Mother Teresa


Today was a doctor and hospital free day. Which was needed because I find those two things can put me in hyper alert mode given the situation. I was planning on spending the day at home working on Foundation things and really had no intention of getting outside.

As the morning progressed I got an email from my friend Tina. She wanted me to know that it was going to be a lovely day, the sun was shining and headed to be in the upper 50's. Too nice of a day not to go outside and walk. So we met to walk in a nature preserve in her area. I had gone once with Ann to this preserve to pick up her children from summer camp, but I really never walked around the grounds or went into the beautiful wooden lodge within the preserve. So today I saw a part of Alexandria I never saw before and got to hear about how this nature preserve was saved from having a road built right through it. Tina was instrumental in this preservation and as we walked I heard the story about the advocacy efforts that took place to save this land. 

So it was walk in which I got to see trees, water, and geese, but it also was a walk in which I learned something about my friend. Sharing stories and learning about what a friend is passionate about are great gifts. Tina introduced me to one of the main educators at the preserve. This teacher uses her skills to bring alive science and nature for children in the local public schools. She was sharing with us stories today from the special education class that visited her classroom just an hour earlier and how they learned about penguins and then got to use modeling clay to illustrate what they learned. Tonight's Mother Teresa quote came to mind as I was hearing this teacher talk. Because this preserve's classroom environment gives many children opportunities they might not get in a typical school setting. Sometimes kids in school get labeled with a particular issue and problem. Yet when they come to the preserve the territory is neutral. Children can learn, explore, and perform hands on educational activities that not only stimulate the mind but also the spirit. It gives them the permission to be true to themselves and their character. It is within this classroom lodge some kids learn they are artists and are appreciated for their ideas and talents! What I reflected upon while hearing this teacher talking was that kind words are indeed short and easy to speak as Mother Teresa indicated, but they can have profound and life altering effects.

Getting outside today and in and amongst the trees and seeing the birds helped to reorient my mood. With Mattie's illness, I perfected the art of compartmentalizing some of my feelings. That may not sound healthy, but it actually is, because if I continued to live in a heightened state of anxiety and stress over my current situation, that would just be toxic for my health. So being able to forget about it even temporarily is therapeutic. Today I took a big first step for myself. I finally made an appointment with an acupuncturist for next week. I am a conventional medicine person, and yet I have learned that modern medicine can't provide a safe and effective relief for my headaches. Many of my friends have recommended I try acupuncture specifically for my headaches, so given all that I am managing right now pain wise I figured I had nothing to lose. A good friend of mine swears by this particular professional, so I look at this upcoming appointment as a ray of hope.

Thursday, February 16, 2012

Thursday, February 16, 2012

Tonight's picture was taken when Mattie was a month old, on May 4, 2002. Peter's family came from Boston to visit with Mattie and that afternoon we all went out for ice cream. On our journey out, Peter's parents bought Mattie this cute bunny. A bunny which I still have. Mattie was fascinated by that bunny and at the time being a naive mom and person, I thought life was challenging with a newborn. The irony is I had no idea how much harder life was going to get. I suppose thank goodness none of us have a crystal ball to rely upon, because if we did, there are some days we just may not get out of bed knowing what lies ahead.


Quote of the day: A good head and good heart are always a formidable combination. ~ Nelson Mandela


It has been non-stop doctors, testing, and stress for the last two weeks. We are living at such a heightened level of tenseness and anxiety that I am back to not sleeping or eating. A feeling I recall all too well when Mattie was ill. I went back to Georgetown today to meet with my oncologist there. As soon as I walked into the Lombardi Clinic there awaiting me was our friend Tim. Tim is a hospital administrator who we have gotten to know quite well since Mattie's death. Tim is a big Mattie Miracle supporter and has become a dear friend of ours. He was sitting in clinic awaiting my arrival because he wanted to lend support and also to let others in the clinic know that he considers us special people. In addition to Tim, Linda (Mattie's childlife specialist) met us in clinic. Linda was working hard today to get all my scans on a disc for me to bring to my third doctor on Tuesday.

If you want to know why I love and support Georgetown University, it is because of people like Linda and Tim. Georgetown has become my medical home, and though I do not know the oncologist there well, I do know the support staff has become like family. My appointment today with the doctor was interesting. I characterize it as interesting because in my perspective he was humble. Humble because he knows he doesn't know the answer to my problem any more than I do. I am no oncologist, but I know enough about cancer first hand to know when push comes to shove no scan or doctor can predict what will happen to me. I am sure for some of my readers all of this may come as either a shock or a surprise. We want to strongly believe that if we see a doctor, he/she will have a solution to our problem! But modern medicine in so many ways is NOT modern at all. It doesn't have all the answers and as even today's doctor admitted my situation is rare. He told me if doctors sit me down and say they have seen lots of people like me, then I shouldn't believe them. He said he wished he had a crystal ball and could tell us more about my mass and its trajectory, but he can't. It is with that, that I said I know this all too well. Medicine doesn't have all the answers because if it did Mattie would still be alive today. He got what I was saying, and I felt we understood each other quite well.

Though I did not feel this way last week, today I felt as if the doctor wanted to accommodate my concerns and desires and began including me as part of the care team. An approach that works best for a person like myself. So we are working on a strategy for the next month that involves additional scanning and the potential to try to do a biopsy. Because of the mass location, this may not be possible, but he is consulting with several radiologists on this. Needless to say, today was just a very emotional day back at Georgetown. I cried with the doctor, I cried in the clinic, I cried with the man taking my blood, and then I cried for two hours after I left Georgetown. While I was getting my blood drawn, I was hysterical and there was an older woman sitting next to me getting her blood taken as well. She told me she has leukemia and that I chose the best facility in Washington. With that I told her I lost my son to cancer at Georgetown and know the hospital all too well. She was down right shocked to hear me say this and responded by saying that I have experienced "the worst kind of loss."

Unlike with Mattie, I do not know what I have. I may not have cancer at all, but one thing is for certain I have two choices, one is to get the entire mass removed, or live with periodic scans for the rest of my life (assuming that the mass doesn't change in size, because if it changes at all, then the decision to have surgery will be made for me). I am worn out tonight and somehow have to get a drip on this reality before the stress of this situation makes me completely sick.

Wednesday, February 15, 2012

Wednesday, February 15, 2012

Tonight's picture was taken on Valentine's Day of 2009. My last Valentine's Day with Mattie. Mattie was in the hospital for yet another holiday and that day Jenny and Jessie (his art therapists) worked with him in the childlife playroom to create a special gift for me. Mattie designed many things that day, from the paper crown on my head, to a valentine's box with cards, and then he also gave me a clay painted vase (that he had been working on over time) with tissue paper flowers. When he presented all the gifts he made, Jenny snapped a picture of that moment. The picture wasn't posed it just happened naturally and Jenny captured it. This is one of my favorite pictures of Mattie and I in the hospital. Why? Because this was a very typical moment for Mattie and I. He would always stare at me in my eyes and want to touch noses. It was like his sign of connecting and affection. Needless to say, I have all these gifts still. The vase with tissue paper flowers is in my living room and the box with valentines and crown are in our bedroom.

Quote of the day (actually a poem): I Wish You Were Here by Angela Salyer

Although from Earth, our loved ones are gone

They live in our hearts as time goes on
God truly blessed us with the time that we had
Though their departure leaves us very sad
"Time heals all wounds" We've heard it before
A broken heart gradually begins again to soar
God works miracles in His time, not ours
Not by our wishes, but by faith and prayers
By each person he claimed, we were given a gift
Wonderful memories for our spirits to lift
Reunions and Christmas, and simple every day fun
To carry with us always, until our work here is done
Thank God for Kodak, for video and audio-tapes
And for the time together that this family takes
The message is clear from those who have started life anew
"We're waiting in Heaven for each and every one of you"
Each one would say "Don't cry for me dear"
"This place is wonderful, I wish you were here"

Back on June 7, 2010, I posted the above poem entitled, "I wish you were here." If you go back to that blog posting you will see that I was less than happy with this poem. Keep in mind that Mattie had died only nine months before I read it and for the most part I could not manage the feelings expressed by the author. In addition, those closest to me, know that I am very capable of lashing out both verbally and in writing. My friend Ann says to me at times she has to be like "Teflon" because otherwise, the things I say to her would probably be considered hurtful. Naturally I do not set out to intentionally hurt anyone, but when I feel most vulnerable and dealing with Mattie's loss, my ability to censor or present things in a more palatable way simply decrease.

Today, I actually received an email from the author of this poem. Angie is a survivor of multiple losses and she actually uses poetry and writing to express herself and her feelings about the various tragedies she has endured. Angie shared her poetry with only selected people, and was stunned to find this particular poem on the Internet and on Mattie's blog. Writing can be a very private and personal thing, especially when it reflects upon one's thoughts and feelings regarding a loss. Therefore, I am sure finding her poem all over the Internet and on a blog was a bit disconcerting, especially since from her vantage point she never gave any of us access to her inner most thoughts. As I told Angie today, the poem was sent to me by a friend who found it on the Internet. This is the beauty and the complexity of the Internet these days. It gives us access to everything, even maybe to things that weren't meant to be published.

However, my comments about Angie's poem were less than complimentary back in 2010 and as I told her my intentions were not to insult her but instead were a reaction to my own hurt and anger over Mattie's death. Angie wrote the poem to bring comfort to her own life and world, and I imagine was quite upset when she perceived her poem as causing me or anyone else pain. But here is the thing, as I told Angie tonight, her poem (though I did not agree with it in 2010) was actually therapeutic. I view it that way because it helped me express my frustration and anger, it got me to sit down and write and get out my feelings. Whether they were positive or negative. To me the expression of any feeling is very healthy especially when dealing with the death of a child. Now almost two years later, I can reflect on Angie's poem and Angie's email today and I can see my own progress. My progress is that I can appreciate where Angie was and is coming from, and understand that her faith in God and her expressions in poetry are avenues that continue to help her with grief. I can now step back and see a different perspective to this poem and appreciate the meaningful intention Angie had when writing it. I think it took Angie great courage to write to me today, but as I said to her, I learned something about myself and about grieving. We all have different ways and needs to cope with our loss and losses and the greatest gift in all of this is we can unite together and discuss these differences and our similarities. This further confirms to me that the grief process is a life long one, in which I learn and feel something new with each turn.

My health saga continues. I saw one of my two doctors today who followed up with me about the MRI results. She and my doctor at Georgetown have two completely different strategies on how to proceed. Just NOT what I needed to hear. The doctor today asked me to trust my gut feeling as to what to do. I told her my gut feeling was ALWAYS right with Mattie, but frankly I have absolutely no inner voice when it comes to understanding my current situation. I have no idea why that is the case other than I am probably so bogged down with emotion and fear that I can't hear/think straight. Any case, knowing that I have two very qualified doctors with two separate opinions makes me uneasy, so I felt the need to seek a third opinion. Again I reached out to one of Mattie's doctors, Kristen (the oncologist who is my friend and writes to me each tuesday in memory of Mattie), and she connected me with another top oncologist in the area who I will see on Tuesday. So I head back to Georgetown tomorrow to consult with my second doctor, but I know already how he feels about my situation. He presents the more aggressive and radical approach which will be a hard approach to listen to tomorrow.