Saturday, February 9, 2013

Saturday, February 9, 2013

Tonight's picture was taken in February of 2009. Mattie was participating in a physical therapy session. Mattie's therapist, Anna, held Mattie upright and helped him raise his hand so that he could use a water gun to squirt Linda (Mattie's childlife specialist). Linda played up her role and got dressed up in a gown, mask, and put a basin on her head to prepare for a soaking. She had all of us laughing hysterically and this inspired Mattie to work through his pain and fears to use his arms and legs. Keep in mind that Mattie wasn't walking independently nor did he get to the hallway by walking. Mattie was wheelchair bound and therefore getting up, out of his chair, standing, taking a few steps, and raising his arms were all big achievements especially in the midst of undergoing chemotherapy.



Quote of the day: There comes a time in life, when you walk away from all the drama and people who create it. Surround yourself with people who make you laugh, forget the bad, and focus on the good. Love the people who treat you right. Pray for the ones who don't. Life is too short to be anything but happy. Falling down is part of life, getting back up is living. ~ Unknown


I received this meaningful quote today and I decided to share it with you because I think its message can resonate with all of us. May all of you find and continue to surround yourselves with those "people who treat you right." This sounds SO simple, but in actuality is quite complex.

I have two photos of Patches to share with you tonight. Patches has some favorite places to stay now. It is either this ottoman, our couch, a living room chair, Mattie's bed, or our bed. Patches is still a beautiful cat despite the fact that her tumor is growing and her right eye is reduced in size.

This is  a picture of our "Sleeping Patches" on her other favorite location to rest, our living room chair.

For several weeks Peter and I have been working on designing a retractable banner to take with us to the conference in Los Angeles. Naturally we do not have access to graphic design programs, so we created the template for the banner in PowerPoint. What I learned however is you can't use a PowerPoint to then create an 8' by 3' retractable banner. The resolution of pictures and text would look terrible. This is where abcimaging (www.abcimaging.com) came in to help me. When Mattie was in kindergarten, I attended his school's weekly chapel. During chapel each Tuesday, I sat between two women, Junko and Luda. My faithful readers know who Junko is..... my friend and our sons were also good friends. Luda and I became friends through chapel and when Mattie was diagnosed with cancer Luda began helping us with all of our signage and banner needs. Her help has never dissipated, in fact, it has only grown. It is thanks to Luda and her company that we have this finished product. Luda's staff worked with me throughout the week, because they couldn't use the PowerPoint we created. Instead, they had to recreate and transform our template into a design program that could produce this fine finished product. So though this banner may look easy to put together, it was not. It took great thought, we tried to make it substantive, and yet visually appealing. When we opened up the box to see the banner I was thoroughly impressed! It is simply beautiful and I am very happy with the way it captures Mattie's spirit and through photos illustrates some of our Foundation accomplishments.

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.