Friday, February 8, 2013

Friday, February 8, 2013

Tonight's picture was taken in February of 2009. Mattie was sitting in his hospital bed and in usual Mattie style was VERY busy. He had a glue gun in one hand, which by the way, he was skilled at using since preschool, and check out the rubber ROACH sitting on his foot. Despite Mattie's down and very sick days, he always had a sense of humor. He loved creeping me out and ALL his nurses. Needless to say Mattie never traveled to the hospital without his rubber bugs, spiders, snakes, or anything else that could produce a howl or two!




Quote of the day: Follow your heart. It will get you to where you need to be. Sometimes it's hard, sometimes it's easy, the places that your heart takes you. But continue to follow it. ~ Erykah Badu


I had a full day today which started with my monthly professional counseling licensure board meeting. At the meeting, I presided over an ethical violation hearing and though I can not discuss the nature of this case, I can say it was disturbing. So much so that after it was over, I just had to be out and among people, and I couldn't return home right away. As my friend Karen said tonight, I sometimes have the pleasure of seeing the worst in people. I think her assessment is so right! Unlike what tonight's quote implies, sometimes people DO NOT follow their hearts, or let me restate this...... that their hearts have been frozen by selfishness, self absorption, and the desire for self gratification. When this happens only negativity, harm to others, and a profound disconnection from meaningful relationships results. As I left the hearing today, I found that I was shaking my head back and forth in disbelief. I wasn't consciously doing this, it was simply more a reaction to what I had absorbed.

Peter and I are spending the weekend on finalizing think tank folders, paperwork, and giving some thought to some of the verbal messages we wish to share at the event. I also wanted to mention that recently Peter and I have received several messages from first time blog readers and I very much appreciate the lovely feedback, comments, and your perspective of what the blog means to you!
 

Thursday, February 7, 2013

Thursday, February 7, 2013

Tonight's picture was taken in February of 2009. This was classic Mattie..... a multitasker extraordinaire. In this photo Mattie was playing with his cars in a pot of water with one hand and in the other he was eating a vanilla frosted dunkin donut. The joke back then was..... "one donut a day and everything will be okay." In fact, my friend Susan sent me a song with this exact title and Mattie thought it was an absolute riot!!! Literally when Susan sent me this link, Mattie played it OVER and OVER again!!! http://www.youtube.com/watch?v=b36sUPqE8Gg.


Quote of the day: The role of a writer is not to say what we all can say, but what we are unable to say. ~ Anaïs Nin


I began my day with a conference call with the four key psychologists working with us to plan the think tank in California. It was interesting to be on the call with them and to hear them dialogue about research, the profession, and so forth. I remind myself often that despite their years of experience the one thing (which from my perspective is key) that Peter and I bring to the table is that we are parents of a child who had cancer. There is one thing to know the research and to be a clinician and quite another to have lived the experience. Our lived experience enables us to see things that others might not. It is hard to believe that after months of dreaming this up and planning this event, in a matter of days, it will happen. As one of the psychologists said this morning on the phone..... this event is HISTORIC. Historic and yet you can be sure NBC, CBS, and the like won't be there to cover it. Our society is a bit skewed regarding what is important and newsworthy. News is about sales and not necessarily reporting the reality. It is unfortunate, but thankfully Peter and I are not doing what we do for noteworthiness, accolades, awards, and so forth. If we were, we would have stopped our work years ago. We are driven by a much higher cause and mission and that is the memory of Mattie. Which may be why working for the Foundation can have extreme highs and lows for me.


Perhaps the role of a writer is to write what others are unable to say (but are definitely feeling or thinking), as tonight's quote eloquently states. For the past several weeks I have shared pictures of Patches with you. Patches was diagnosed with bone cancer over a month ago, and technically if I agreed with the vet to put Patches to sleep a month ago, we wouldn't of had the time we are having with her now. I know all too well what pain and suffering looks like and what dying looks like. Patches is not there yet! Despite being 17 years old and in failing health, when I wasn't feeling well today and got into bed, look who was right next to me? Nurse Patches is always on duty and for hours she remained by my side. Those who haven't experienced a bond with an animal are missing out on one of the joys in life. Animals are about unconditional love, they don't argue with you, but are instead happy and joyful to be in your presence. They can be the most loving of friends. Recently several people I have talked to have told me about their relationship with their pet and how their pet has helped their mood and depression. One woman said that her dog prevented her from carrying out her thoughts about suicide. I know for Peter and I, Patches is part of our family. Patches tries to fill a huge void in our home, and for years, Patches felt this void too. She missed Mattie that first year and even now still spends time everyday on Mattie's bed. She never did this before, but there is a connection between them. I tend not to think about life without Patches too. However, next week, we have to board her at the vet as we go to the conference, and I am naturally concerned about my Nurse Patches. She is thriving around us and little does she know that we need her to thrive too.
 

Wednesday, February 6, 2013

Wednesday, February 6, 2013

Tonight's picture was taken in March of 2003. This was Mattie's first trip to Los Angeles, and on a plane. Mattie was 11 months old and I had to go to a conference in Anaheim, CA. I was very apprehensive traveling with Mattie and if it weren't for the conference I am not sure I would have gotten up the courage to do this trip. Fortunately Mattie traveled better than I do. He never slept a wink, but he wasn't agitated, scared, or edgy by motion. It is funny, as Mattie got older, he would be holding my hand on the plane, NOT for his own comfort, but to offer me support. It was very cute! Any case, I love this photo because while we were touring around Huntington Gardens (one of my favorite gardens in LA), Mattie came across this piece of bamboo. Neither Peter or Mattie knew I snapped a picture of them, but I captured them both staring and examining something. Like father, like son!


Quote of the day: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~ Leo Buscaglia

I had the opportunity today to listen to someone's life story for two hours. This wasn't in a professional capacity, nor was it planned that we were going to end up chatting. It just kind of happened and when I sense someone needs to talk, I always make the time to listen. Peter jokes with me often, because he doesn't know how I have the where with all, energy, or desire to listen to people's problems. As I say all the time, we all have our own talents, skills, and abilities. I am not as taken by this skill as others maybe, but I am more impressed by the fact that so many people in my life feel comfortable talking with me. About ALL sorts of problems and issues! I have come to the conclusion that since Mattie died, people feel even more comfortable approaching me with issues, concerns, and problems because they assume that on some level I will relate to, understand, or most of all not judge them for having certain feelings or thoughts. That to me is the highest compliment someone can give me, and I am honored to be trusted.

As this woman was talking with me today, I couldn't help but reflect on her comments and see how there are similarities between us. Mind you we weren't talking about death or grief. The irony is I find listening to people's life stories therapeutic, because in their messages, lessons, heartbreaks, and joys, I find meaning and I learn something about myself. Whether that be I am not alone in my own feelings or frustrations or that I actually find new ways of looking at a problem.

At the heart of the matter though is we sometimes fear that we are not like others or that others won't understand us. These two realities can be hard to grapple with at times and they can even make us feel very isolated and different. I can understand these fears on a profound level and some days when you analyze these fears too deeply you can feel like you are actually unstable. As we talked about these feelings and thoughts today, I could see that the fact that I understood her, that I could share aspects from my own world with her, made her see that sometimes being different is not only okay, it can be a good thing. As Buscaglia's points out in his quote, to be listened to and cared for are powers that can TURN A LIFE AROUND! 

Tuesday, February 5, 2013

Tuesday, February 5, 2013 -- Mattie died 178 weeks ago today.

Tonight's picture was taken in February of 2009. That particular day, Mattie entered the clinic and Jenny and Jessie (his incredible art therapists) asked him if he wanted to help them with the creation of the in-patient unit's welcome sign. Mattie was not interested in this notion at all until I suggested that perhaps he would like to put his footprint on the sign. That was just off the wall enough to intrigue Mattie. As you can see in this photo, Jenny was holding Mattie's left leg and foot (the only appendage NOT operated on) and Jessie was painting it. Whenever I visit the fifth floor of the hospital and see that welcome sign, I can't help but be transported back to February 2, 2009, when this photo was captured. I imagine to those who pass this welcome sign on a regular basis, it is just a small footprint on a canvas, but to me that is no ordinary footprint. It belongs to Mattie and I am so happy that Jenny and Jessie captured a piece of Mattie on the floor where he spent over a year of his life.

Quote of the day: There are two types of people – those who come into a room and say, “Well, here I am!” and those who come in and say, “Ah, there you are." ~ Frederick L. Collins


I decided given how my leg is feeling, that going to zumba this week wouldn't be smart. Yet I do see what the doctor is saying, in that my problem originates from my back. If I sit a funny way or even lift something heavy, the pain eventually intensifies in my leg. Unfortunately today I had to mail our large box of Foundation materials that we need for the conference in California. Peter carried it to my car, so I literally only had to get the box from the back seat onto Mattie's stroller and into the post office. Somehow that was more than enough lifting for me and I am now paying the price. 

This afternoon I had the opportunity to have lunch with my friend Christine. Christine and I met when Mattie entered kindergarten. Her son and Mattie were very close friends, and it was through our sons we became friends. Christine is a key person to us on many fronts, but with regard to the Foundation she specifically oversees our Annual Walk registration process. This is a complex job and certainly a labor intensive one. Especially when I dump off 500 t-shirts, bags, and other items in her house every May before the Walk. I don't only dump them at her house, but then she folds them and organizes all these materials for me. Her whole family gets involved with this process, including all three of her children! We had a lovely lunch together, and like me, food is important to Christine. It was restaurant week, so we had a wonderful 3 course lunch. Not something we have often, which is what made this extra special. In a way, such a lunch allows one to escape from reality, from the pains of life, and be able to connect over food and conversation.

Earlier today I received an email from Linda, Mattie's Childlife Specialist. Linda is a person who is near and dear to both Peter and me. I do not know where we would have been without Linda when Mattie was battling cancer, which may be why I feel compelled to support her program at the Hospital. Like the Foundation is a personal cause for me, supporting Linda is personal as well. I have seen what Linda is capable of and I also know that her profession is challenging and involves MUCH MORE than playing with kids. Linda shared some statistics with me that were truly impressive. As many of our readers know, part of the funds from the 2012 Foundation Walk went to the Mattie Miracle Childlife Program Fund. That fund helps to pay the salary of Jess, Georgetown's newest Childlife Specialist. Any case, in one year's time, Jess has worked with and supported 3200 children and their families. There are some other wonderful pieces of news which I will share over time. But the point of the matter is the funds we are raising are helping thousands of children and their families A YEAR. This to me is significant and something our supporters should feel very positive about.
 

Monday, February 4, 2013

Monday, February 4, 2013

Tonight's picture was taken in January of 2003. This was one of my favorite outfits on Mattie. I loved the puffy baby chicks on his suspenders. They just looked happy and were so soft and cozy. The chicks matched Mattie's adorable cheeks.




 
Quote of the day: It is highly significant, and indeed almost a rule, that moral courage has its source in identification through one’s own sensitivity with the suffering of one’s fellow human beings. ~ Rollo May


Today I began the process of applying for permits in the City of Alexandria for our May Foundation event. The permit process I have to admit is extensive and daunting. Fortunately I did it last year, so it isn't novel to me this year. However, this year, my desire is to close down neighborhood streets for our walk/run. That is my desire, but we shall see what pound of flesh needs to be extracted to get this accomplished. Doing anything like this for the first time always seems monumental. I spent the majority of the day at home working on Foundation items as well as issues related to my work on the DC licensure board.

At lunch time, I walked to Peter's office and we had lunch together. It was an extremely bitter day out, but walking, getting out of our home, and seeing other people were all helpful.

This evening, I received a five pound bag of chocolates I ordered to take to the conference. We plan on giving out chocolate at our exhibit hall table. Any case, as soon as I put this small box down (the size of an 8" by 12" piece of paper) Patches jumped in the box and made herself right at home. Despite how deformed her face has become she is still the best of companions.
 

Sunday, February 3, 2013

Sunday, February 3, 2013

Tonight's picture was taken in January of 2003. Mattie was nine months old and eating a cracker. But the priceless thing about this photo was Mattie was staring right at me, intrigued by the camera. In fact, Mattie was fascinated by ALL lights (such as the flash of a camera or electric light). Mattie's first word ever was CAT, but his second and third were LIGHT and BUBBLE!

Quote of the day: Blessed are those who can give without remembering and take without forgetting. ~ Elizabeth Bibesco

I came across this quote tonight and it resonated with me. I must admit I am much better at the latter part of the quote rather than the former. I sometimes wonder why others in my life can move on and yet I remain entrenched on where I am in both thoughts and feelings. Part of it has to do exactly with the sentiments of this quote. When Mattie was sick, people gave us SO much of their time, energy, and resources. Therefore based on the circumstances we did a lot of "taking." But taking for me comes with gratitude and a memory. Peter jokes that I have a mind like a steel trap for some things, and he would be correct. I am NOT so good with the memorization of long term facts and matter of fact knowledge. However, if the the content involves emotion, the connection between people, and human dynamics, then rest assured it has been filed in my emotional memory bank. I can recall usually what people have said to me, to one another, what place and context it took place in, and so forth. I assure you this skill has its advantages and great disadvantages.  

Peter and I worked the day away on Foundation items. One of the things we are doing in California in February, besides sponsoring a psychosocial think tank, is we were offered an exhibit table at this national conference. This is a first for us, at least in terms of traveling a distance with our materials. So literally I have to think strategically about what Foundation merchandise to bring based on the number of people projected to attend, and of course I have to box it and ship it to the hotel. The box I am using seems about as big as I am. So I am packing it carefully and trying to determine how to transport it into the post office. I look forward to sharing with you pictures of our exhibit table set up on the blog in February. Peter and I are very fortunate to have our friends Denise and Dave flying to California to help us at the think tank and at the exhibit table. These two individuals are not only Mattie Miracle supporters, but their daughter, Marisa, was one of the wonderful young people who helped me with caregiving for Mattie when he was home between hospital stays in the summer of 2009. Marisa is also the person who has coordinated our Foundation bake sale three years in a row. Marisa's whole family is instrumental to us and supports us in countless ways. So when they offered to come to California to help us, we weren't only beyond appreciative, but we decided to accept their help. Asking for assistance is not always my strong suit, especially when all of our help is voluntary. I prefer people to initiate the help, and when they do, chances are I am right on board to accept it! So you will be seeing pictures of all four of us on our conference adventure in February!

At some point Peter and I stopped working and we went out for a diversion. We had tea and coffee together and just chatted. For me some days are better than others, and yesterday just seemed depressing. I don't know if it was the cold weather, the snow, or the continual realization that our weekends are SO different from others in our lives. In fact, tonight I was downstairs in our complex doing laundry. I figured who would be doing laundry on Super Bowl Sunday? Well there were others down there besides me, but one of my neighbors said to me that only us "old" folks would be down there on a night like tonight. Mind you I apparently fall into the "old" folks category. I believe this is what happens to us because we lost Mattie. Our lives appear to be that of an empty nester, except in our case we haven't had the ups, downs, and joy of child rearing, and we will never see Mattie again.
 

Saturday, February 2, 2013

Saturday, February 2, 2013

Tonight's picture was taken in January of 2003. This is one of my FAVORITE photos!!! Our commons area was the perfect flat surface for Mattie to run around with his "tot wheels" as well as where he learned to ride a bicycle. In addition, at the end of Mattie's life, he spent some time outside riding "speedy red," (his ride on vehicle). Mattie loved all wheeled vehicles and we had the short pleasure of watching him grow and evolve in our big outdoor area.


Quote of the day: A man who thinks he can live without other people is wrong, and a man who thinks others cannot live without him is even more wrong.

 

It was a grey, frigid, and depressing weather  day. Peter took this wonderful photo of some of our plants today. Some how this looks very tropical to me. MANY of our outdoor plants are inside with us over the winter. All this greenery takes up a lot of our living space, but on a grey day, it can lift our spirits.

 

When it is extremely cold, our resident sparrows come to visit. The feeder was FILLED today!

 

Peter captured the snow tonight falling against our outdoor lights. These lights are a tribute to Mattie and they shine brightly over the winter months.

 

I love Canadian Geese. I appreciate their teamwork, how they stick together regardless of the circumstances, and I admire how even on the coldest of days they are out there in groups finding food. As we were driving home today, I snapped a picture of this wonderful sight on the Washington Mall.  

Friday, February 1, 2013

Friday, February 1, 2013

Tonight's picture was taken in February of 2003. As you can see Mattie was in his good old reliable..... Tot Wheels. What I tried to capture was Mattie on a tear through the first floor of our home! He couldn't walk independently yet but WOW could those legs propel him on wheels!!!



Quote of the day: The true measure of a man is how he treats someone who can do him absolutely no good. ~ Samuel Johnson


I debated for days whether to see a neurologist or an orthopedist for the numbness in my leg. I selected my orthopedist and I made the right decision. I had several xrays taken, a neurological test performed, and naturally an examination. We determined that I twisted my vertebrae in a funny way while setting up for a party two weeks ago. This sharp twist impacted a nerve that runs from my knee down to my foot. I can handle the pain much better knowing that there is a logical explanation for it. I was given medication to manage nerve pain and four weeks of physical therapy 3 times a week! That should be a pip to fit into my schedule especially since I am headed to California soon. I will have to begin this when I return. Going to Virginia Hospital Center however is like returning to the scene of the crime. It was at this Hospital that Mattie was born, diagnosed with Osteosarcoma, and last year where my ct scan revealed questionable masses. It is funny how one place can bring life's greatest joy and life's greatest pain!

After seeing the doctor, I then ventured to Georgetown University Hospital. Believe it or not, I had four more bags of candy people recently donated to the Foundation that I wanted to drop off for the snack cart. Once my drop off was done, I was sitting in my car returning messages when out of the corner of my eye, someone approached my driver's side window. When I looked up, it was Jey. Jey was Mattie's x-ray technician. Jey considered Mattie his "little brother." Jey worked beautifully with Mattie and came to visit him practically daily when Mattie was living in the hospital. Which was OFTEN! When Mattie died, Jey came to Mattie's hospital room and insisted that he had to personally take Mattie's body to the hospital morgue. He reminded everyone that day that "this was my little brother." Jey and I hugged today and we got a chance to catch up. However, Mattie's death impacted Jey too, for Jey is no longer an x-ray tech. He now works hospital security. We shall never forget Jey or the way he looked out for Mattie and us at the hospital. Some people are irreplaceable and unforgettable.

Later this afternoon, I picked up my friend's son from school for her. Out of instinct, I always arrive early. I never like keeping a child waiting. So as I got there I was able to park and watch the kindergarten students outside playing. As school was coming to a close for the day, the teacher led the class back inside for dismissal. However, every student had to pass my car to get back into the building. As they passed my car, I smiled at them. Not only did I get smiles back, but many of them waved at me. A couple even came up to the car because they were intrigued by a flower Mattie made for me that hangs on my rear view mirror. Any case, it was a very precious moment and it reminded me of the days Mattie was in kindergarten. It is hard to believe at that innocent age, Mattie was diagnosed with cancer.

Thursday, January 31, 2013

Thursday, January 31, 2013                     Tonight's picture was taken in February of 2003. Mattie was 10 months old and one of the things that could calm him down instantly and stop him from moving about was a bottle. A glazed look would come over him when having a bottle. It was a feeling of ecstasy I will never forget.

 

Quote of the day: Friendship is a plant which must be often watered. ~ Anonymous

My friend Charlie sent me today's quote. As I told her this sentiment is VERY true. Any quality relationship must be "watered." Not unlike a plant..... bonds between people do not grow, get enriched, and become stronger without nurturing. It is unfortunate in our busy world that sometimes TIME is used as an excuse for the lack of "watering" and investment we make in each other. Once a plant loses its water, it dies. It can't be resurrected, and in a way so it is true about the connections between people. May we all find the "water" necessary in our lives to keep those we care about nurtured and connected to us not only physically but emotionally.

I started my day off by going to zumba. This somehow always brightens my day. Though my heart and left leg weren't into it today, it did perk up my spirits. Since Mattie has died, I feel like I am one big physical ailment. I wish I could say some of my pains are psychosomatic, but my issues are always legitimate.

For the past two weeks I have been dealing with numbness in both arms and my left leg. I have had the arm numbness before in my life. That occurred when I gave birth to Mattie, I was diagnosed with carpal tunnel syndrome. It wasn't from my over use of my arm, it was because of all the fluids I retained which put pressure on my nerves. Most women look somewhat normal after child birth, or at least within a month or two. For me, my swelling lasted for six months. In fact, the running joke was most people thought I was still pregnant when Mattie was six months old. Of course that wasn't too funny to me at the time! But with all of that, I have never had leg numbness. I figured my current pains were a muscle or nerve issue and it would go away, but it hasn't. So tomorrow I am seeing my orthopedist. Post-Mattie's cancer, I literally have a doctor for each day of the week. This is the magnitude of the after math of such a traumatic death.

I had the pleasure of meeting my friend Margaret today. Margaret was Mattie's preschool teacher and in 2005, became an integral part of all our lives. As I told Margaret today, the littlest physical issues now cause my mind to leap to cancer. It takes a great deal of rationalization to understand that every pain I have does mean I have cancer or am dying. I view this disturbed view of the world as a direct result of Mattie's cancer battle and death. I do not live a normal life like other people, for me the fuzz is off the peach. I have been hesitant to go to the doctor because frankly I am just tired of having SO many of them in my life. But not knowing what this is, is also stress producing. So tomorrow morning I head to Virginia Hospital Center to find out what is going on.

Wednesday, January 30, 2013

yWednesday, January 30, 2013

Tonight's picture was taken in February of 2003. Mattie was all dressed up to go to a birthday party. The little girl in question was having a tea party and the kids could get dressed up for the event if they wanted to. I can't quite say that Mattie loved the tea party, but he got into the spirit of it all and certainly looked like a little gentleman.









Quote of the day: We are never so defenseless against suffering as when we love. ~ Sigmund Freud


I had the wonderful opportunity to meet with my friend Carolyn today. Carolyn coordinates our Foundation's Raffle during our annual Walks. This year will be her fourth year with us. What I admire about Carolyn is she works full-time, raises her children, and yet despite being pulled in many directions, she feels compelled to volunteer with us. This is her choice and I am honored by her dedication and commitment to our mission and to Mattie's memory. We had a very productive brainstorming lunch and what Carolyn doesn't know is that prior to meeting her I had an ocular migraine. An ocular migraine is actually quite frightening, because it affects your vision for a good 20 minutes. Thankfully it passed and talking with Carolyn helped. I have a core group of amazing women who help me with the annual walk. I am not sure these women know how much I value them, because in so many ways they share the stress with me. Sharing someone's stress is a great gift of friendship. With this core group of women, I can email them a walk question, and I get immediate and insightful responses. I not only appreciate their friendship, but what it also tells me is that they want to actively keep Mattie's memory and legacy alive. This matters to them.  

I am happy to report that Peter is feeling much better! This evening, when he got home from work, he was greeted by Patches. Patches desperately wanted to go outside onto our deck. We are having 60 degree weather in January, which of course is very unusual. But Patches loved it and hopped right onto our patio table! As you can see our Christmas lights are still up. Peter puts these lights up the day after Thanksgiving, a tradition he used to do with Mattie. We keep these lights up until the spring time. These lights remind us of Mattie and brightens up a very depressing and gray time of year. Our deck looks like such a mess now and barren in the winter months, and in some respects it is amazing how we transform it in the spring. I end tonight's posting with a message from my mom about "nurse Patches!"

A Cat for All Seasons by Virginia R. Sardi

I'm in awe of the devotion that "Nurse Patches" shows to both of you when you are not feeling well. The pictures of her by Peter's side as he recovers from the norovirus are precious and reveal that she has an almost human like attachment to her family and that her presence there is meant to give him all the feline comfort she can from her little but generous heart! She has proven herself to be a cat "for all seasons!"