Saturday, April 23, 2011

Saturday, April 23, 2011

Tonight's picture was taken in May of 2006. Mattie was out on our deck, playing in his frog sandbox. As you can see he took off the lid of the sandbox, and piled every toy he kept in the box into the lid and then jumped inside the lid to sit with all the toys. It seemed like quite a sight to me, so I took a picture of him!


Quote of the day: Grief is a tidal wave that over takes you, smashes down upon you with unimaginable force, sweeps you up into its darkness,where you tumble and crash against unidentifiable surfaces, only to be thrown out on an unknown beach, bruised, reshaped...Grief will make a new person out of you, if it doesn't kill you in the making. ~  Stephanie Ericsson


I couldn't agree more with this quote. Grief changes you. It would be impossible to go through a 15 month ordeal of watching Mattie battle with cancer and then die a horrific death and come out of this experience untouched. I understand the author's sentiments that at times it feels like grief could kill you. I suppose this feeling was heightened today or maybe just this weekend in general. If I hear or see one more Easter related advertisement or the talk of Easter egg hunts and baskets, I may lose it. It is interesting how a season of renewal and rebirth, doesn't feel that way to me at all. In fact, if someone did not tell me that Friday was Good Friday and tomorrow was Easter, I really wouldn't know. It is my hope that God understands my feelings. Actually I do believe God understands my feelings, and instead it is earthly beings who represent and espouse his teachings who would have me believe otherwise.

As I write tonight's blog, Peter is 9300 miles away, safely in Bangladesh. Though it is 9:30pm on Saturday in Washington, DC, it is 8:30am on Sunday in Bangladesh. Literally Peter got off the airplane, checked into his hotel, showered, and reported to work. No rest in between. Apparently his client meetings begin on Sunday, on Easter. At 11:30am, I received a surprise email from Peter. He was emailing me from the Doha Airport in Qatar. His flight from Washington, DC to Qatar was 12 hours long. At the Doha Airport, they offered free wifi services, and so we chatted back and forth with each other for at least an hour. He then signed off and boarded his next flight to Bangladesh, which was another 6 hours of flying time.

The first message I received today from Peter stated, "I am here. The flight was long, but I was dozing through several hours of it. It was weird flying as I took off at night, and then it got light out, and then we landed just as the sun was setting. Doha looks very sandy and very built up in the main city. The airport is right on the sea. One story for you, a few hours into the flight I opened the shade and looked out, and saw a light, a fixed light. I first thought it was the wing, but then I noticed after a few minutes it was getting a little higher. That's right, it was the moon. It stayed with me for hours and of course reminded me that I was not alone...."

I found Peter's message very touching, as Mattie Moon was following him and keeping him company along his journey. Tomorrow is Easter, and yet without Mattie integrated within our day, it seems like just another day. Today was one of those days, where I really did not want to get up and do anything. But thanks to Patches, my cat, staying in bed was not an option. Nonetheless, it was a very quiet day that served as a constant reminder of the magnitude of what we have lost. For those of you who read this blog and who have children, please remember how lucky you are. Nothing in life is a given, so when your children have their health, you actually have the greatest gift life has to offer.

Friday, April 22, 2011

Friday, April 22, 2011

Tonight's picture was taken in May of 2006.  As you can see Peter and Mattie were wearing matching preschool t-shirts. It seems ironic in a way that the sun was the symbol for Mattie's preschool and the sun has now become the symbol of Mattie's Foundation. I somehow do not believe this was by coincidence. Mattie was a ray of sunshine and a force, which not unlike the sun, it is hard to live and grow without. This is one of my favorite pictures of Mattie and Peter because to me it just shows happiness. 


Quote of the day: It is the will of God and Nature that these mortal bodies be laid aside, when the soul is to enter into real life; 'tis rather an embrio state, a preparation for living; a man is not completely born until he be dead:  Why then should we grieve that a new child is born among the immortals?  ~Benjamin Franklin


I found this quote tonight and though I have great respect for Benjamin Franklin, I frankly disagree with his sentiments. I also have to imagine that his reflection on death did NOT apply to that of a child! For I take NO comfort in thinking that Mattie is born among the immortals!

Though I have not reported this on the blog, Peter had to pack today for another two week business trip. This time he is spending a week in Bangladesh and the second week in Kenya. The amount of flying he is doing in this two week time period is sickening to someone like myself. Just to get to Bangladesh, he must fly through Qatar. Needless to say it will take him 29 hours of flying to get to his final destination, and once he is there, there will be a ten hour time difference between us! I am not sure why I haven't mentioned his trip sooner on the blog like his Africa trip, but I sometimes I find there are topics I do not care to talk about.

I received an email from my lifetime friend, Karen today and she asked me about the timing of these trips. The Africa trip occurred over Mattie's 9th birthday and this current trip occurs over Easter. Naturally in the business world such dates of importance are not factored into the equation. Most likely at one time, I wouldn't have thought twice about it either, but our life circumstances are different now. It was hard not having Peter here for Mattie's birthday and as Easter comes and goes, it will be challenging without Peter again. Why? Because no one else truly gets how upsetting these holidays are to me. Peter of course does, because he is living the nightmare with me. So I reflect on Karen's comment, and I too wonder, what other travels dates are in store for us. Peter returns the day before Mother's day. Another horrible day in the year for me, and perhaps the day will just pass by, since when Peter returns he will be all screwed up from time zone changes.

Needless to say, I will be giving you Peter updates from around the world! Peter and I spent the day at home trying to get him packed and working on Foundation items together. We were quite productive. While on the Internet, I found the following two links about The Mattie Miracle Cancer Foundation Walk. The first link takes you to the Washington, DC Metropolitan Area LEGO Train Club site (WAMALTC). WAMALTC will be hosting a wonderful Lego model train display at the Walk, and the trains will we working and moving through Lego city displays. The second link features our Walk advertised on the community services site of a local school, The Lab School. The School is encouraging its students to participate in our Walk. I wasn't sure how the School found out about our event, so I wrote the Head of the School today. She wrote back immediately and put me in touch with her community services coordinator. It turns out that one of Mattie's former babysitters, Alyx, is now a speech therapist at the Lab School. So we thank Alyx for promoting our event at the School!

Washington, DC Metropolitan Area LEGO Train Club (WAMALTC)
http://wamaltc.org/


The Lab School
http://www.labschool.org/content/communityservice-0

Thursday, April 21, 2011

Thursday, April 21, 2011

Tonight's picture was taken in May of 2006. The look of excitement on Mattie's face was the fact that we transitioned him from his crib/toddler bed to a twin size bed. The head and foot boards of the bed in this picture were constructed by Peter's maternal grandfather. Peter's grandfather built two bed frames, one for Peter's mom and one for Peter's aunt. We have both frames, and Mattie was actually very excited to be sleeping in a bed that had the bed frames his dad and grandmother both used growing up! I was very hesitant to transition Mattie into a "big boy bed." It took so long for him to master how to sleep, that I was afraid to mess with what was working. But just like everything else, Mattie let me know when he was ready, and I was usually pretty good at following his lead.


Quote of the day: One life. Live it.  ~ seen on a bumper sticker of a car

As I was driving around town today, I passed a car with the bumper sticker, "One life. Live it." At first I did not pay much attention to it, but then these four words seemed to be spinning around in my head. Somehow I couldn't help but think of Mattie and how he was forced to live his one life in 7 short years. Perhaps life shouldn't be measured in years, but instead in how it is lived. If that is the case, Mattie lived a full, bold, loving, and happy life. Well that is of course until cancer took over. However, even battling cancer, Mattie showed a remarkable ability to energize others, to suck you into his world, and to genuinely care about other people despite his own issues.

I spent most of the day at home trying to put thoughts together for a script I am writing for May 20 (TWO DAYS BEFORE THE WALK). As a member of the Georgetown University Hospital Pediatric Parent Advisory Board, I have been asked to testify at the Hospital's annual medical grand rounds. My understanding is that 500 or more physicians and medical professionals attend this event. There will be two other people speaking in addition to me, and we are each given 12 minutes to convey our feelings about family centered pediatric care. Or in other words, from my perspective (and the mission of the Mattie Miracle Cancer Foundation) the importance of understanding the psychosocial needs and support of children and their families with cancer. At first I was going to sit down and start writing about Mattie and our hospital experience. However, I decided to step back and reread portions of the blog. In fact, I plan on combing through a year's worth of blog writing to see what important insights I shared throughout Mattie's treatment process that I can integrate and highlight in my script. Needless to say, though I have lived Mattie's ordeal, it is trapped somewhere inside my brain. Reading the blog postings from 2008 was VERY overwhelming. In many ways it was like reliving a trauma and being placed right back into the scene of the crime.

Though I write each and every night, I did find writing Mattie's eulogy very intimidating. I struggled with it for weeks and then one morning as Ann flew to Boston to attend her father's funeral, I sat at her kitchen table and simple wrote for hours. This script is also a labor of love. Most likely because I put a great deal of pressure on myself to write the PERFECT script. The script that will capture Mattie's life and honor his memory. In many ways, this is why planning the Foundation Walk becomes an all consuming process for me as well. I do it for Mattie, and for those of you who did not know how Mattie and I related to each other, then you will just have to take my word for it when I say that Mattie and I together were intense! We fed off of each other, we had the same temperament and disposition. The walk, scripts, advocating on Capitol Hill, and so many other things are symbolic ways in which I keep Mattie's memory alive. So to me that memory is sacred and as such, it becomes hard to know how to capture it in writing!

I spent a good portion of the day crying and thinking about what we survived and lost. In addition to the script, I am lucky enough to have the assistance of Mattie's technology teacher, Mary, help me with a short video I will end my testimony with. The video will show pictures of Mattie from birth until death. The pictures will move to the music I selected. I chose a song called, "I'll remember you." Shortly after Mattie died, Mattie's preschool director's daughter sent me this song. A friend of her's wrote it, and as soon as I heard it, it brought me to tears. As I was designing this video for the doctors, I originally was going to show the pictures moving to ABBA's song, Dancing Queen. This was Mattie's favorite song at the Hospital, because literally he was learning how to walk again with this music in the background. There were days we even migrated around the fifth floor of the hospital singing it. Needless to say, we caused a commotion and got a lot of attention! However, Dancing Queen is an uplifting song, and it did not quite capture the sentiment I was looking for. I want physicians to understand that they don't only scientifically treat patients, but they are treating a person. Mattie was a bold person, and a little boy full of life. His cancer had ramifications on him and on Peter and I, and I am hoping the song tied to the pictures pulls on their heart strings and frankly makes them uncomfortable. Uncomfortable to me is good from an educational standpoint, because with discomfort, brings change and the willingness to perhaps do something differently.

Later this afternoon, I visited with Mary, Ann's mom. She was happy to see me. I told her she saw me three days this week, and that she is going to get tired of me. At which point one of her caregivers walked into the room and we all started talking together. The next thing I knew Mary blurted out "NEVER." At first I had no idea what she was saying to me, since this wasn't in line with what we were currently talking about. But what I realized was she was responding to my initial statement. She was telling me she is never going to get tired of seeing me. Mary appreciates my friendship and what I admire about her is she is able to verbally communicate that and shows concern about my wellbeing. Do I think Mary and I would be close friends if we both did not lose our son's to cancer? Perhaps, but I do think this commonality serves as a strong foundation of our relationship. 

Wednesday, April 20, 2011

Wednesday, April 20, 2011

Tonight's picture was taken in May of 2006, around Mother's Day. Mattie was in preschool and one of the mother's day gifts he made for me in Margaret's class was a popsicle stick picture frame. This frame and gift remains on my refrigerator from 2006. Five years later.... the frame remains, but the child does not. As you can see by this frame, Mattie always liked bold and happy colors.

Quote of the day: Life is eternal, and love is immortal, and death is only a horizon; and a horizon is nothing save the limit of our sight. ~ Rossiter Worthington Raymond


For those of you registering for the Walk and giving us positive feedback about the Walk logo, I THANK YOU! As I mentioned in my emails today to our supporters living afar, we value your participation in our Walk and we designed a pledge form this year so our extended community could virtually participate. The pledge form gives you the opportunity to talk with your friends and family members about pediatric cancer, the Mattie Miracle Cancer Foundation, and our goal to raise funds for the Childlife department at Georgetown University Hospital. If you want more information about pledging, I attached a helpful link: https://www.mattiemiracle.com/Pledge_to_Walk.html

I had the opportunity to have lunch today with a former student and now my friend, Susan. Susan is a high school counselor, and we had the opportunity to talk about her school, children and our society, the complexities of counseling today's youth, and naturally living life after losing a child. Many of my students ask me if I miss teaching or when I plan to return to the University. For me the answer is, I DON'T KNOW! There is a great deal about academia I do not miss! However, the number one aspect of teaching I miss is my students. I learned a great deal from them over the years, they made me a better educator, and they stimulated me to want to learn more and stay current. However, after experiencing cancer your life, world view, and interests change. So though I may look the same from the exterior, on the interior I am very different. My tolerance for certain aspects about life now are MUCH lower.

During the day, I received some wonderful pictures from my friend, Colleen, in Boston. Colleen and I met each other in our Master's in biology program at Boston College. Colleen's daughter, Ashley, grew her hair out and got it cut yesterday for Locks of Love. I find it fascinating how children observe their parents reading the blog, and in a way kids are intrigued by the blog, its pictures, and Mattie. Though Ashley never met Mattie, in a way his life has impacted her decisions.

Colleen wrote, "Just wanted to share a few pictures with you of Ashley. She decided, with some encouragement from me, to grow out her hair and donate it to Locks of Love. It all started with a friend who was doing the same and she asked me why someone would need someone else's hair. She would always see me reading your blog in the mornings and I reminded her how there are children like Mattie who get cancer and lose their hair due to the treatment that they have to undergo to try and get rid of the cancer. She took that all in for a bit and brought it up again a bit later. Mattie had passed away by this time, but it also coincided with a little girl in Jack's class who was diagnosed with Burkitt's Lymphoma. So, I asked her if she would like to grow out her hair and donate it (she had a good 4 or 5 inches about that time) and she said yes. While she was growing out her hair and getting very close we would mention Mattie and this little girl and how someone like them would be thrilled to receive Ashley's hair. When people remarked how long and pretty her hair was, she would always say "I am donating it for Locks of Love." So, yesterday was the big day of getting her hair cut and I wanted to share the pictures with you. Even though Ashley never met Mattie, here is another instance of Mattie touching the lives of others!"

Later this afternoon, I visited Mary, Ann's mom. As I tried to open Mary's door into her assisted living room, I was met with resistance. There was something behind the door. So instead of forcing it open, I tried to squeeze my head in to see what was blocking the door. To my dismay, it was Mary's roommate sprawled out on the floor. She had fallen and was lying behind the door. Mary heard the fall, but due to her own condition was unable to do anything about it. So I wasn't sure who to address first upon entering the room, the lady on the floor or Mary who seemed to want to know what was going on. Either case, I went out into the hallway and found a nurse and together we assessed Mary's roommate and then we each grabbed an arm, and slowly lifted her back into her wheelchair. The roommate is a feisty and obviously strong individual, because she was physically fine. But the whole situation was unsettling and the staff were just as concerned and perplexed by what I saw. There are people in an out of Mary's room all day long, so I know her roommate wasn't on the floor for long. Though I visit Mary often, her roommate has dementia and each time she meets me it is like meeting me for the first time. Which is fine and I always tell her who I am and why I am there. Mary's roommate for the most part doesn't like to be touched, and most definitely can give her caregivers a hard time. She will yell at them and talk down to them, which of course doesn't inspire others to care for her. Any case, I have found that when I interact with Mary's roommate, I always ask for permission to help her, and when I lifted her off the floor, she did yell at us that she did not want to be touched. But I reasoned with her that it wasn't good or safe for her to be on the floor, and therefore that is why we were assisting her. That explanation made sense to her, and she complied. I think Mary's roommate is the perfect illustration of what we all want in life. The chance to be in control of our own lives and to be able to make certain choices for ourselves. All I can say, is there are great life lessons to be learned by visiting Mary and her roommates.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. As I told Nancy today, I really needed her message. It helped to perk me up! Nancy wrote, "Peter and you brought Spring into my life this morning. It is cloudy with a prediction of thunder storm and overall non sun day and then I clicked on the blog. The first vision to brighten my day was Kristen's 'Faces of Hope' logo. It is spectacular!!!!!!!!!!!!! It definitely captures your message and love for Mattie, first, and children and families afflicted by this disease, next. We all need a little hope to keep going. Then I read about the thank you note that Donna and you received from her student's Mom. To me , as a former teacher, these are the precious memories that are saved. Notes from the children I've taught and their parents acknowledgment kept me going on the day's when I felt that I was just another face. I think my greatest thank you has been from a former student, now a mother of three + her teenage stepson, who has included me in her life till this day. Mom's essay said so much about you and what you did in this kindergarten class. I loved it when she said that you should be cloned because in some ways you already have been. The first piece of you was transformed in Mattie. You gave him roots to grow, a body that withstood many assaults, too many for such a small body, and a head which housed his storehouse of ideas, creations, desires, and many feelings. Next you have inspired many a student wanting to facilitate and support people on their life's journey. With your deep loss, you have found another way to be cloned in writing your blog which allows you to see just how far reaching your words and experiences have traveled. Finally, for now, a piece of you has been transformed in a little kindergarten boy who understood, appreciated, and shared the knowledge and joy of art from your sessions on Matisse and Picasso. ( In fact, this weekend, my daughter, Cindy, was showing me some of the artwork that Jordana (our little artist) has been doing in her pre- school. One of her pieces was inspired by Matisse too and I told her of your beautiful lessons). I love how you have turned your city deck into a collage of color. I await seeing a picture of the fountain once Peter has fixed it. The Gerber daisies are a beauty and what a view from your kitchen window. You have sight, sound, color all at your beck and call. That is inspiring too as we enter the birth season of Spring when the earth comes alive. In honor of Earth day, April 22nd, you gave signs of our magnificence! All this while Peter and you are handling the many challenges of this year's walk. Team Mattie is an ongoing process as well. You bring hope to families as they witness your drive, love, and determination to make Pediatric Cancer a memory."

Tuesday, April 19, 2011

Tuesday, April 19, 2011 -- Mattie died 84 weeks ago today.

Tonight's picture was taken in March of 2006. I snapped the picture because this was a RARE sight in our house! Mattie NEVER napped, even as a baby, napping wasn't Mattie's forte. I loved when Mattie's pediatrician would tell me that ALL babies nap. During those doctor visits, I always felt the urge to invite this doctor back home with us to observe how well napping went. Despite my greatest  efforts, I learned Mattie wasn't going to nap if he did not want to. Mattie would nap only as a precursor to getting sick.

Quote of the day: The sorrow which has no vent in tears may make other organs weep. ~ Henry Maudsley


This quote caught my attention tonight because it captures how I am physically feeling. I am feeling very tired, worn out, and congested. I do think grief and sorrow manifest symptoms in one's organs. Throughout one's whole body and mind actually. I may have brushed that notion aside at one time, but having a bird's eye view of grief, it enables me to speak with great confidence about the subject matter.

Despite feeling run down, I accomplished a lot today. I drove to Rockville, MD, and visited the WMZQ radio station. WMZQ donated two Kenny Chesney tickets to our Walk's raffle this year, and in addition to their support in May, they wrote me an email saying that they look forward to participating in future Mattie Miracle events!

Plans for the Foundation Walk are moving right along, and we have begun posting press releases about the event. You can see one of them below:
http://www.prlog.org/11444265-young-survivors-of-childhood-cancer-lead-annual-walk-to-raise-awareness-about-pediatric-cancer.html

Peter and I are very grateful to Kristen Johnson. Kristen is a graphic designer and is the creative professional who designed our Foundation's logo. I instantly loved Kristen when I met her. She was introduced to us by our friend, Liz. Kristen immediately understood our desire to capture Mattie's memory and she also understood our mission, goals, and passion to help other children and their families with cancer. Kristen's logo for our Foundation captures Mattie's sun (which he painted with his art teacher), and the Foundation sun logo also has 7 rays, one for each year Mattie was alive. Because we feel Kristen is in tune with our Foundation and our vision, we turned to her for help with the design of this year's Walk t-shirt. We literally spoke to Kristen on the phone for 15 minutes, and within that short period of time, she got exactly what we were looking for in a t-shirt. So I am happy to report that t-shirt design and production are well on their way. Once again we are grateful to Kristen, who did this t-shirt design pro-bono! An amazing lady! Last year at the Walk, to my surprise, Kristen was in attendance. She wanted to come to show her support, and she was truly moved to see the logo she created posted everywhere. In a way it is like an artist seeing one's creation in a museum. Kristen will be at the Walk again this year, and I told her she will be blown away between the Foundation logo and the Faces of Hope t-shirt design. To see the Faces of Hope Logo visit: https://www.mattiemiracle.com/Home.php

In the midst of how I am feeling today, I received a surprise Easter care package from our friend, Tamra. She gave me angel wing wind chime, which naturally reminds me of my favorite angel and a beautiful butterfly glass dish. Both meaningful gifts, especially on a Tuesday. A Tuesday, where we acknowledge that Mattie has been gone 84 weeks from our lives.

The second surprise I received was from a parent of a child in Donna's class. This parent, Liz, wrote to Donna and she wanted Donna to pass along the message to me. Liz wanted me to know how much her son appreciated my art lessons. Liz wrote, "I just wanted to let you and Vicki know how much my son LOVED the Picasso/Matisse presentations over the last several weeks. He wants to go to Spain and France. He quizzed us on “sad colors” (blue) and “happy colors” (red—although he also said yellow, but maybe that’s HIS happy color!--and his sister has decided after talking with him that green is HER happy color) and told us that Matisse was a lawyer “just like the two of you!” Unfortunately, I had to break it to him that Ted and I were not planning to change our careers and become artists at this point. :) We are going to be taking the kids to the National Gallery of Art this weekend to show them their paintings and I am quite positive that my son will be able to tell us more about Matisse and Picasso! So, if you could pass on this message to Vicki, I would really appreciate it. I wanted her (and you) to know how much he loved the lessons and how he’s brought them home to us."

Liz's message brought a smile to my face, because the true test of learning, is integrating the content into one's everyday life. I also feel as if I inspired this little boy to talk about these artists with his parents, sister, and friends. It is no longer a class assignment, but it has become a part of his thinking and processing of the world! It doesn't get better than that! I shared this news with my parents, and my mom wrote me her comments below. My mother is a born teacher, and could teach math to practically anyone or anything. So it is always wonderful to get high praise from another outstanding professional.

A Kindergartner Discovers Picasso and Matisse - by Virginia R. Sardi

You definitely inspired this little boy and no doubt many other children in Donna's kindergarten class by introducing them to the artistic creations of Picasso and Matisse in a way that captivated their interest well beyond what one would expect from children of that age. By exposing them to the highlights, personalities and passions of these two masterful geniuses, you have planted the seed of creativity within their hearts and minds forever and given them an appreciation for art at a tender age. By cleverly designing Picasso/Matisse hands on projects for the students to work on, you opened their eyes to the possibilities of using their own imaginative skills in interpreting the beauty in the world around them. You turned them on to color in a way they had not been aware of before so that they were able to acknowledge the effect different colors had on mood and feelings. You made them think about what effect specific colors had on their emotions. Some colors make them happy and others make them sad but in some cases there was no consensus as they learned that their friends "see" the world differently including the way colors make them feel. You also gave them an appreciation for Spain and France, the countries that produced these two great artists and it is no wonder that this little fellow would like his parents to take him on a trip to both countries. Actually, I have been to both countries many times but unfortunately I was much older. How much better to start early to appreciate the art, natural beauty and the richness of the cultures of these two wonderful countries. Since you have been the motivator of this little boy's desires and have shown what exposure to a great teaching experience can accomplish, you are to be complimented. I wish you could be cloned. You should be!! For this little boy, it may just be a learning experience that he will remember for the rest of his life, where the possibilities for future benefits to him are without bounds!

Monday, April 18, 2011

Monday, April 18, 2011

Tonight's picture was taken in March of 2006. As you can see Mattie was sitting next to a flower pot. Peter and I purchased this flower pot at Mattie's preschool auction. The pot was painted by Mattie's class and each child's fingerprint was stamped onto the rim of the flower pot. When I purchased this flower pot, I had no idea that it would be with me longer than Mattie. I have traces of Mattie all around me, but yet no Mattie.

Quote of the day: There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go. ~ Author Unknown



I had the opportunity to meet up with my friend Tina for lunch. As my readers know, Tina is the person who hosted a successful art show last week, of which a portion of the proceeds went to the Mattie Miracle Cancer Foundation. Tina and I met today to celebrate her birthday. Which was in February. But between Tina and myself, one of us was sick throughout this two month stretch making it impossible to get together. We rectified that today and had a delightful time talking about the art show and exchanging stories. When Tina handed me the proceeds check from Jill Steenhuis, the wonderful impressionist artist I shared with you last week, I was absolutely delighted! Delighted because it puts us closer to our financial goal of raising money to give to the Childlife department at Georgetown University Hospital. Specifically to hire a childlife specialist dedicated to helping children and families on scan and procedure days. 

Along the way today, I stopped by the jewelry store where I buy most of my Pandora bracelet charms. While talking with the owner's daughter, she handed Tina and I mother's day charm books. She encouraged us to share these with our husbands and children, as a hint for a gift. Naturally that was an innocent enough statement, because honestly how many women are like me? Yes there are certainly other women who have lost a child to cancer, but we are definitely in the minority. Yet despite the innocent comment, I had to face again the fact that Mother's day is approaching and what this will mean for me. I was a mother, but I don't get mother's day cards and gifts anymore. Almost as if my role never existed!

Later today, I went to visit Ann's mom, Mary. Mary and I spent several hours together. While I was there, Ann sent me this picture. Her children and friends hosted a
lemonade stand outside their house. The proceeds of which will come to the Foundation!


I would like to end tonight's posting with a message I received from Donna (the wonderful kindergarten teacher I worked with for the past three weeks). Donna wrote, "At choice time, I put out paper for children to make a “spring” cut out collage. They readily use the term “cut outs.” The children were very comfortable with the idea that it could be whatever shape or color they wanted, thanks to you. Two of the children sidled up to each other and the two of them just started collaborating. I took the picture (I did not include it for privacy reasons) to show you how your teaching has transferred into other parts of their day. I told them that I wanted to take the picture for you because they were combining, collaboration and free expression in their art. Their conversations were precious."

Sunday, April 17, 2011

Sunday, April 17, 2011

Tonight's picture was taken in March of 2006. As you can see Mattie was playing with his car carrier and cars. There was a train (believe his name was Gordon) involved in this scene as well. However, play close attention to the reddish stuff Mattie had on the cars and was stuffing into the car carrier! That was playdoh! Though I was NOT a playdoh fan, Mattie loved it. He loved making a mess with it and I learned early on that playdoh loved rugs and furniture. It loved our things so much it was impossible to get it off. So when playdoh came out, I tried to quarantine the play area. Looking back, I am happy I allowed all the messes, the opportunity for Mattie to be creative, and to have fun.

Quote of the day: We must embrace pain and burn it as fuel for our journey. ~ Kenji Miyazawa

Peter and I had a quiet day at home. Since the sun was out today, after major down pours yesterday, we decided to spend the day on our deck and planted all of our flower boxes. As you can see in this picture, we placed many of our indoor plants and lemon tree on top of our shed. I received this lemon tree as a birthday gift from my sister-in-law at least six years ago. The tree was shipped to us from Florida in a tiny tube. It is hard to believe how it has flourished over the years, and it is quite a producer of meyer lemons!

One of our hummingbird feeders is up and awaiting a visitor. We planted all sorts of flowers and herbs today!

What you can't see here is Mattie's fountain. It sits in the center of the flowers. Peter is fixing it, but when it is up and operational, it makes the deck a very special place to be. You can probably see in the lower right hand corner of this picture, the tip of Speedy Red. Speedy is still with us, and though Peter has tried to talk with me about donating it, I am not ready for that yet. So for now, Speedy is enjoying the deck. For those of you just joining our story, Speedy Red is a ride-on car that Mattie requested weeks before he died.

I snapped this picture so you could see Mattie's chimes that I can hear from inside. The blue fish chime, we bought together near Key West. The other chime, which looks orange and red with silver butterflies was a gift Mattie gave me for my birthday.

The last picture I would like to share with you is that of my kitchen windowsill. I planted gerber daisies in all my ceramic pots. I LOVE gerber daisies. They scream out happiness to me. Maybe because I view their flower as a happy and smiling face. Either case, I plant them on my windowsill, so that they will be one of the first things I see each morning.

Saturday, April 16, 2011

Saturday, April 16, 2011

Tonight's picture was taken in March of 2006. As you can see, Mattie built a structure (which only got higher in height by the way!) in the middle of our living room. He was having fun with structure and color, and loved climbing through the different parts of the creation. It is funny how our living room was once lively and was transformed into all sorts of things. Things that only a child could think up and create. Now our living room is just that, a room.

Quote of day: Courage is being afraid but going on anyhow. ~Dan Rather


I think it takes great courage after the loss of a child to find the fortitude, energy, and will to go on. When I say "go on," I most certainly do not mean MOVE ON. Going on, means continuing to live, living with the loss, and with the grief. In so many ways, life as we knew it stopped on September 8, 2009, and instead we are left to pick up the shattered pieces and decide what to do next. But like any broken object, we go through life far more fragile, very more sensitive, and far more damaged.

I woke up feeling ill today. So I spent a good portion of the day in bed. As the afternoon wore on, I did get up and worked on Foundation items. In the midst of working, I received a lovely email from Donna. She wanted me to know that Mattie's school celebrated teacher appreciation day this past Thursday. Naturally all her students acknowledged her, however, to my surprise, one of her students also acknowledged me! He created this beautiful and colorful drawing for me. This little boy considered me his teacher in a way, and wanted to let me know he appreciated me too! I was very touched by this, as was his mother. When I asked Donna what the content of the drawing meant, she wasn't exactly sure. But here is my interpretation, he is say..... this is from my heart to yours. He is thanking me for sharing colors and feelings with him and to me this picture illustrates the rainbow of colors that lies within ALL our hearts!

This picture actually brightened my day. For many reasons! I no longer get colorful pictures from Mattie, and I miss those gifts of creativity. I remember at one time when Mattie was in preschool and kindergarten the stacks of creativity he would bring home. As a mom you get used to that, and when it stops you notice your world isn't as colorful anymore. But I also appreciate this gift, because what this child is telling me in his own sweet way is "THANK YOU, I learned a lot." I look forward to receiving this piece of art in person, and it will help me to always remember my time visiting Donna's class.

Many of Donna's students actually touched my heart. On the last session we had together this Wednesday, I served them a snack of fresh fruits. This seemed appropriate since they just created a still life! I served the fruit buffet style, and thanks to Donna's polling the class before hand, I brought in their three top fruit choices: apples, pineapple, and mango. In addition to the fruits, I brought in three sauces for them to dip the fruit into such as caramel, fudge, and melted marshmallow. The kids absolutely loved this snack and the whole process! I honestly should have taken pictures of this because in so many ways it was priceless. After clean up, Donna encouraged all the kids to say good-bye to me and shake my hand. Which they all did the prior two weeks. However, this last week, one little girl came up to me with a big smile, had me bend down to stare into my eyes. She put her forehead up against mine, stared into my eyes, and kept on smiling. The children do NOT know I was a mom, and they most certainly do not know I was Mattie's mom. Yet this little girl stopped me in my tracks, because this behavior of pulling me down, being forehead to forehead and staring into one another's eyes was exactly what Mattie would always do to me. For just that moment in time, I was confused. Was this little girl doing this, or was Mattie working his magic through this little girl to let me know he was there with me. Either case, after this interchange was over, she gave me a big hug. This all happened on Wednesday, and today is Saturday, but I can recall this moment as if it just happened to me. As if Mattie was sending me a signal through this sweet little girl. I won't forget that feeling or that little girl! I can see her facial expression and eyes, as if the picture of this was burnt into my memory.

I would like to end tonight's posting with a message I received from my friend and colleague, Denise. Denise's daughter, Marisa was one of Mattie's caregivers when Mattie was home from the hospital between cancer treatments. Marisa is also in charge of our Walk bake, for three years in a row! Denise wrote, "I talked to Marisa this morning and she is participating in "Relay for Life" with her sorority at NYU. She told me she is going to walk tonight in remembrance of Mattie. She shared how much she missed him and how often she thinks of him. We both are holding all of you in our hearts today."

Friday, April 15, 2011

Friday, April 15, 2011

Tonight's picture was taken in February of 2006. As you can see, Mattie and I were on the floor creating homemade Valentine's day cards for his preschool friends and teachers. We took this creative process seriously, and fortunately Mattie enjoyed doing this with me. I miss his face, voice, and incredible spirit.


Quote of the day: There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go. ~ Author Unknown



I spent a good portion of the day running around doing chores. As the day wore on and my headache continued to persist and get worse, I decided to stop for lunch and read my book. This forced break was very important, because I can get very absorbed and focused on a task, and forget about eating and taking care of myself.

I picked up my 11 year old friend, Katharina, from school, and for one moment in time, watching her response to seeing my car reminded me of Mattie. Katharina saw me, and started running to the car with a big smile. That is literally how Mattie would greet me everyday when I picked him up from kindergarten. I have missed seeing a child happy to see me, and I guess I did not realize that until I saw Katharina. Since Katharina lost her pet bird this week, I felt the need to let her know I too felt sad for her loss. I have learned personally that one of the greatest gifts you can give someone who is grieving is your time, patience, and a listening ear. So that was my intention today. We went out for ice cream together and then we bought a couple of marigolds to plant in her bird's honor. We had a good time chatting with each other and Katharina also showed me some of her homework. Needless to say I have learned about percentages today and the Navajo Walk. I enjoy the opportunity to learn new things and I also loved looking at Katharina's upcoming science fair project on bacteria. You would be amazed what surfaces you will find bacteria living on!

This evening, I went with Katharina and her parents to her choir concert. This concert featured students from grades fifth to twelfth. Before the event began I had the opportunity to chat with Joan Holden, the head of Mattie's school, and Bob Weiman, the head of Mattie's lower school. I very much appreciate their continued support, because they in essence make our Foundation Walk possible each year by providing us access to their wonderful campus. Both Joan and Bob mentioned how much they liked our Foundation e-newsletter that was distributed today, and I very much appreciated their feedback. Bob and I also chatted about my kindergarten art visit. Bob wrote me a lovely e-mail about a week ago about my wonderful teaching style, and he reiterated his feelings tonight. Naturally that made me happy.

The concert tonight was filled with meaningful and fun pieces, and what was VERY evident is that these music directors have their work cut out for them. Particularly when trying to focus and motivate the middle school aged student. You could see how much the elementary school students responded to the music and seemed to get into the spirit of performing. For the middle school student, it was apparent that looking "cool" and not standing out or deviating from the norm was evident. However, performing usually means having to express one's self, which seems to go against the whole middle school developmental mindset. However, the high school aged students, like the elementary school students, were wonderful to watch because by this point these students clearly chose to participate in choir because of their love for music and the arts. Watching people perform who love what they are doing makes you as an audience member simply feel good.

Somewhere during the concert, I absorbed the children on the stage and realized Mattie will never be one of them. That wasn't an easy realization, and with that I got tears in my eyes. Overall, I enjoyed hearing the music and seeing young people appreciating the arts. I commend the lower school music director for confiscating all electronic devices from her students tonight. She wanted them to focus upon the concert and show respect and decorum for the venue they were participating in. In my book this teacher gets a GOLD star. It is important to teach our children to focus, to absorb the world around them, not to multitask at every moment of the day, and more importantly to learn that entertainment can come from art and not only a computer or video game. Brava to this teacher!

Thursday, April 14, 2011

Thursday, April 14, 2011

Tonight's picture was taken in March of 2006. As you can see Mattie had a lot going on around him. He and Peter built their own version of a train roundhouse. Mattie had train tracks set up, trucks every where, and naturally Duplos (a younger form of Legos) scattered around. At one point in our home we most likely had enough Lego bricks to construct a large Lego couch for our living room!

Quote of the day: Man, when he does not grieve, hardly exists.  ~Antonio Porchia


I had the wonderful opportunity today to return to the art show and to see Jill's glorious works by daylight. It was a rare occasion in DC, the SUN was actually out, and it was warm. This provided the optimal conditions to see Jill's paintings. The rooms in which the paintings were displayed were bright, airy, and open. In fact, the paintings and the surroundings seem to speak to one another, as they visually called  visitors in further to study the art.

Though this was an art show, a portion of the proceeds from sales will be going to the Mattie Miracle Cancer Foundation. So to me, it was important that other board members were present and showed support and our appreciation. I was happy that Ann, not only my friend but a fellow board member, was there and had an opportunity to interact with Jill. I gave Jill a few gifts on behalf of the Foundation today because I knew she would appreciate having Mattie's Mr. Sun cards, Mattie postage stamps, and several forget me not butterfly seed packets. To learn more about Jill and to see some of her amazing works, please visit her website: www.jillsteenhuis.com


I would like to share some of the pictures I captured with you!

Here is a picture of part of the room displaying the 61 pieces of art. Our friend, Tina worked diligently with Jill to set up this room. As I told Tina, she was very successful. It was a positive sensory, emotional, and mental health experience for those of us in attendance. I am not sure how you could look at these paintings and not feel peaceful and serene. Better yet in touch with nature!

Every painting was simply vibrant and breathtaking. I would be happy to own any of these paintings. I can't say that about every artist's works I see! 

These are wonderful still life paintings and I have a feeling if Donna's kindergarten class were here today, they would be having a field day with commentary!

Since Mattie and I both LOVE red, I felt the need to capture this still life with a photo.

Jill is a Sweet Briar College graduate, and these scenes were painted and inspired by the campus.

If this is not a tribute to Matisse, I am not sure what is! Matisse would have LOVED this composition. The colors and patterns are wonderful, rich, and bold. It just makes you want to enter this painting and sit down and have a cup of tea.















For some reason, this painting was my favorite. I think what intrigues me is it is a painting within a painting of a still life. The sunflowers capture my attention, along with the fascinating patterned pink and red table, and the fabulous paint palette holding many of the beautiful colors we see depicted on the canvas.

To Jill and Tina, we want to say a BIG THANK YOU! What a great show, and as I told Jill today, the gift she gave me was being surrounded by her art!


During the lunch hour, I had the opportunity to dine with my friend, Diane. Diane and I became friends through cancer. Her son and Mattie attend the same school, and her son is a brain cancer survivor. Diane came to the art event last night and today, and we had a delightful lunch together talking about a topic near and dear to our hearts, childhood cancer. It is hard sometimes to have this conversation with others, but for us this defines our life, our world, and our relationships. While eating, I had the opportunity to look out the beautiful window near us and to see green grass, flowering trees, and birds. It was a very peaceful setting and the ability to talk about our cancer experiences and to share our perspectives with each other was very positive for me.


I would like to end tonight's posting with a meaningful message from Karen's mom. Naomi wrote, "Honestly, Vicki, you are an amazing art teacher. I have been painting for a few years and have taken painting courses with experienced art teachers, but none of them offered such insights and enthusiasm for the creative process. You were able to open up their minds, dispel self-consciousness and help them relish colors and shapes and express what they see/felt, Your approach gave them both freedom and knowledge with results that were astonishing. Brava!"