MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

April 27, 2013

Saturday, April 27, 2013

Saturday, April 27, 2013

Tonight's picture was taken in April of 2007. As you can see, Mattie was in one of his boxed structures that he was creating. The white plates represented wheels and I know this was a work in progress because Mattie hadn't decorated it yet with paint, crayons, or markers. That was always a telltale sign that a box was completed. Mattie also liked to have snacks near him while creating. I almost forgot about Mattie's apple butter phase until I saw this plate near him. We took Mattie to Amish country in Pennsylvania in May of 2007, and it was there that he fell in love with apple butter. We brought apple butter home with us, but Mattie liked it so much, that thankfully I was able to buy more of it at our local grocery store.


Quote of the day: One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity. ~ Albert Schweitzer

I woke up today with a horrific headache. The kind where I wasn't sure I could function at all. I have had a headache all week, but it is very frustrating to go to bed with a headache and to wake up feeling the exact same way. Almost as if I did not get any rest at all.

Later this afternoon, Peter and I went for a walk and we passed these glorious orange tulips along the way. We stopped to take a photo of them because they are Mattie's color!

Peter was invited out with a friend tonight, which I was happy about. Few people truly connect with Peter, so when they do, I am always thrilled to give him this opportunity and experience. While Peter was out, I went to visit my friend Mary, who lives in an assisted living facility. Mary is now completely mute. It makes it very, very hard to connect with her and to know what is going on in her mind. I would say that most likely the natural inclination when visiting Mary now would be to retreat and not talk. But I fight that inclination and talk, read papers to her, and try to engage her even though the engagement is one way.

After I fed her dinner, she was trying to convey to me that her legs were bothering her. Certainly I can't do much to relieve her pains, but it is in moments like this that I try to imagine myself in her position. So I took out one of the lotions I brought her and massaged her legs, arms, and neck. Though she couldn't give me feedback, her eyes were wide open and at times I could tell she was smiling. I think going back to basics when devastatingly sick is key, and the basics always involve the senses!!!! Giving touch (through massage) and smell (through fragrances, that are different from those of an institution) when sick are gifts and despite how I was feeling today, it made me happy that I could do a little something to brighten my friend's day and make her feel cared about and special.

April 26, 2013

Friday, April 26, 2013

Friday, April 26, 2013

Tonight's picture was taken in April of 2007. This photo had me cracking up for two reasons, the first is that Mattie was wearing a Christmas sweater in April and the second was Mattie's smile. This particular Mattie smile was one of annoyance. He wasn't happy with my desire to take a photo, so he gave me one of his "false" smiles. I remember that smile well. Mattie loved decorating our living room window, and in fact if you could see our window now, you would see some of Mattie's decorations still remain where he left them.


Quote of the day: My bones are tired from all the tragedy in me. ~ Peter Krause


Peter and I headed today to Baltimore to attend a palliative care conference. We were invited to present on a parent panel and the moderator was a social worker who we have worked with before. In fact, Kristen was one of the moderators of the very first panel we served on in November of 2011 at the DC Palliative Care Conference. Since that time, we have worked with Kristen when she served as one of our moderators at the Mattie Miracle Psychosocial Symposium we held on Capitol Hill in March of 2012. Kristen is also a blog reader, so we remain connected even when we do not see each other.

I think panels can be tricky things because from my perspective a panel is only as good as its members. Sometimes the members just click, relate to each other, and can build upon each other's stories. When this happens, it is like magic in which a painful topic comes alive and better yet as a parent who lost a child to cancer, it helps me feel empowered, understood, and not alone. 

We served on a panel today with three other families. As is typical, Peter and I were the only pair who lost an only child. Frankly, I am ready to write a book on the experiences of parents who lose an only child, because there are major differences in the grieving process. I usually know we stand out on most panels since we had an only child, but today the feeling was even more pronounced. When Peter and I lost Mattie, we instantly lost the role and title of parent. This is a loss that only a parent who has ONE child can truly understand. But I think what surprised me the most today, was a question one of the other moms on the panel posed to me. She asked me privately, not in front of an audience, yet nonetheless it clouded the rest of my day. She asked me if I thought about having other children. Not that this is a bad question per se, but I do think it is an inappropriate question considering we do not know each other. I sometimes also hope that bereaved parents have the sensitivity and/or insight to understand that a child who dies can't be replaced.

After this dialogue, it affected my mood. Then I heard a presentation given by two Child Life specialists. As my faithful readers know, I have great respect and admiration for Child Life. But this presentation rubbed me the wrong way, in fact, Peter got up and left the room.  However, I remained to listen. As I say to health care professionals all the time, there is one thing to clinically understand an issue and to work in that arena and yet quite another to have the LIVED experience. When you present as if you are going through the motions and talk in a check list format, not only do I think you lose your audience, but as a parent of a child who had cancer, I find the content meaningless. Within their presentation they also used my least favorite term of all times.............. NEW NORMAL!!!! As soon as I heard this offensive terminology, I began shaking my head. I almost want to go around the Country and lecture each and every person who uses this insensitive term, a term that makes sense in theory, but DEFINITELY doesn't work when LIVING through childhood cancer! There is NOTHING NEW or NORMAL to having your child diagnosed with cancer.

Thankfully Peter was on today and where I couldn't connect and step in, he did throughout the presentation. I could also tell the audience was tired (after all they had been in the room since 8am and our presentation was the last thing of the day) and I am sensitive to the energy of those around me. As the panel discussion was concluding, Kristen asked if we had any final thoughts. I shared two. First, I said that social workers, nurses, and child life specialists should feel empowered to guide their families to switch oncologists when the match isn't right for the family. I truly believe if I received that guidance and support, I would have replaced our oncologist much earlier in Mattie's care. Mattie's first oncologist caused great disagreement and at times arguments between Peter and I. We truly did not need this strife or additional stress. The second point relates to the first. On the day that Mattie died in the hospital, a spontaneous wake formed in Mattie's room. The group in attendance was composed of my parents, Brandon (Mattie's big buddy), and all of Mattie's Georgetown family. This was a miraculous experience in a way, until Mattie's first oncologist entered the room. My dad turned to this doctor and asked him what he learned from Mattie's case. After all, Mattie had a very rare form of osteosarcoma. Do you want to know how this doctor answered my father?! The doctor said he learned NOTHING from Mattie's case! So my message to the audience today was WORDS ARE POWERFUL. They remain with us always, even when the treatment is long gone. The devastation of words and how these words make us feel can either make us feel like we have been cut by a knife or supported and swaddled in a blanket. It is sad, but not surprising, that this doctor was true to form...... which was self focused and self serving even during such a solemn and heartbreaking moment in time.

Peter and I also attended a session at the conference today about legacy building. Quite frankly I did not even know what legacy building was or entailed. Kristen conducted this presentation and I learned how she has helped many children and their families build memories and a legacy for the child. In essence with legacy building, input and guidance are sought from the child. The child may have wishes on how to be memorialized and remembered. For example, one child helped to design her memorial cards and another created a list of friends who would get her stuffed animals. As I was listening to this, I realized I have absolutely NO idea what Mattie would have wanted for us, his friends, nor do I have the foggiest notion what he wanted us to do with his toys. I can only guess now and make the best decisions that work for Peter and I. When I reflect on why there was no legacy building with Mattie, the only conclusion I can come up with is the simple fact that ALL of us were fighting for Mattie's life. NONE of us accepted the fact that he was dying until it was abundantly evident. Talking about Mattie's death after his 14 month intense battle was just too painful and shocking. Not only for us but also for Mattie's care team. Sometimes people can't understand why Mattie elected to die at Georgetown. He elected this because he understood that these women cared greatly about him. They were our family who fought the battle with us each and every minute of the day. We fought for Mattie to the end, and somehow his death hit us suddenly. Though I suspect Mattie knew before any of us that he was dying.

Tonight after I was in a funk throughout the drive home, Peter reflected with me that Mattie did indeed leave us a legacy. It may not have been a written statement, but Mattie's legacy is both in tangible and intangible formats. Mattie's legacy is in his art work and Legos, which surrounds us at home, as well as in the friendships through Team Mattie that he helped to create and build for us. I do not have messages from Mattie about how he wanted to be remembered, nor messages about how he felt about me, but I have to come to peace with this. I write each and every night because this is the connection Mattie and I had with one another..... the blog is our legacy that we have built together and my words give his life meaning, purpose, and keep his memory alive.
 

April 25, 2013

Thursday, April 25, 2013

Thursday, April 25, 2013

Tonight's picture was taken in April of 2007. Mattie was five years old and he and Peter were outside admiring the painting job that we did on our balcony. Mattie was actually a great painter. He wasn't messy and his attention to detail was excellent. In fact, Peter and I just finished painting our deck two weekends ago, and while I was painting I couldn't help but reflect on who was missing from this family project.


Quote of the day: Lack of something to feel important about is almost the greatest tragedy a man may have. ~ Arthur E. Morgan

I learned from Peter that today was "Take your child to work day!" A great day in theory and how wonderful for a child to be able to learn about the work that a parent does and see the environment such work is performed. All of that is fantastic of course unless you happen to be a parent whose child has died. It is very hard and challenging at times to accept our reality. Naturally we do, we don't have a choice, but on days like this it takes an inordinate amount of energy not to become bitter, angry, and openly hostile at what others have and what we lost. I can't speak for Peter, though he is far more in control of his emotions than I am, but I know with so many things approaching us this spring, I just want to scream.

Tomorrow Peter and I are going to Baltimore to speak at a palliative care conference, while in comparison, Mattie's friends will be attending their school's spring festival. If that isn't enough, Mattie's friends will all be graduating from the lower school this May and then entering middle school in the Fall, and of course summer approaches when children are out of school and families are busy with one another. ALL things we no longer can participate in and experience. These are all feelings that "take your child to work day" can evoke and provoke!

Today I met our friend Tim, who is an administrator at Georgetown University Hospital. Tim connected me with the director of community service at The Georgetown Visitation School. I appreciated this connection because there maybe some wonderful opportunities to get these girls involved within our Foundation. I haven't been to this School since Mattie's celebration of life service in October of 2009. Our Team Mattie community helped us plan an amazing celebration of life event for Mattie and Visitation was an absolutely beautiful setting for this memorial and tribute. Though I was surrounded by vibrant students today and there was life all around me, as soon as I walked into the hallway of Founder's Hall, all I remembered was Mattie's death. As we walked the courtyard of the school, all I could hear was children singing a song they wrote for Mattie as red balloons were released into the air. Naturally none of these things were actually happening today but they will be forever in my mind. They play like a movie in the background.

It was a very positive meeting at the School, and I may always remember what Tim told the Director of Community Service today. He said given what Peter and I lived through and survived, it would be very justified if we "just walked away!!!" Meaning that we do not need to commit ourselves to helping other children and their families battling childhood cancer, that we went through enough, and when you lose a child to cancer it is easy for your heart and mind to become cold and closed off. But from his perspective this is not what happened. Needless to say, as Tim was elaborating on this both he and I were tearing up. It is hard to get me to tear up in public, I have built up a wall of protection, but that doesn't mean it isn't impenetrable.

Later when I got home and began working by my computer, my cell phone rang. I could see that my friend Evelyn was calling, so I picked up the phone. To my surprise when I answered it wasn't Evelyn, but her daughter Annie.  Annie is a sixth grader, and as my faithful readers know, Annie raised money in March for Mattie Miracle at her School's community service bazaar. Annie and her two friends made all sorts of crafts and in 45 minutes generated $200 for the Foundation! Today Annie had more good news to share with me. News I wasn't expecting!

Annie has been on a campaign to have her school raise money for Mattie Miracle. Today her school held a penny war. That meant nothing to me, until Annie explained the process. In today's penny war, there were two teams, the white and gold teams. In front of each team was a jar and a bunch of pennies. The team that tossed the most pennies in the jar in front of them would win. Also keep in mind that the White team could toss quarters into the Gold team's jar and vice versa. Quarters in essence subtract from the total score. Therefore the goal is to have more pennies and not many quarter in one's jar to win. But what were the White and Gold teams competing for? The competition was to determine which charity (Mattie Miracle vs. Another worthy cause) would be selected.

Annie's team won the penny war and therefore thanks to Annie's advocacy, persistence, and dedication, her school will be raising money for the Foundation during the week of May 15. Annie's school has one penny war per year, and I am absolutely thrilled that this year Mattie Miracle was chosen. But putting aside the financial support, I think what moves me the most is Annie. Our cause has impacted the thoughts, feelings, and ACTIONS of a 12 year old! As I told Annie tonight, she is one of our greatest ambassadors, and I mean that! Stay tuned for more details, since the school wants me to visit and do a presentation to the girls in May before the walk.

I end tonight's posting with a youtube video I received from our friend and Mattie's sedation nurse angel, Debbi. I typically do not take these ads seriously, but this Dove campaign is very, very revealing. I think it is a must see for every woman and teen. We are our own worst critic, and yet this illustrates that people do not see us the way we see ourselves. You may not get the video at first, but keep watching!

Dove Real Beauty Sketches
http://www.youtube.com/watch?v=litXW91UauE


 

April 24, 2013

Wednesday, April 24, 2013

Wednesday, April 24, 3013

Tonight's picture was taken in April of 2008. Mattie received this remote controlled car for his birthday. Which was a great gift for him, because he loved all mechanical things!  I snapped this photo of Mattie in action, because his interests always intrigued me. Instead of racing the car around, which he liked to do too, he was lying on his back examining the insides of the car. He built the car rack out of tinker toys because he was on a mission. From age 2, I quickly learned that Mattie was my "little engineer." He would disassemble things and also put them back together with a screwdriver! He was a sight to see!!! 


Quote of the day: I think I would cope like anyone copes with any tragedy. I'm sure I would be very upset for a while and then there would come a point where I would either have to stay in this place of darkness and anger, or I'd have to accept that it happened. ~ Jason Ritter

I worked most of the day from home today, but midday I went out and walked through the campus of the George Washington University. I do this often and typically I do not run into anyone I know. After all it is a huge campus! But today, I bumped into Thelma. Thelma was the Counseling Department's Administrative Manager. But Thelma was also one of my students and her birthday happens to fall on a day I will never forget. Thelma was born on April 4th, just like my Mattie. When Mattie was born I was both working at GW and finishing my dissertation. I recall that Thelma was so excited that Mattie came into this world on her birthday. Since Mattie's death, Thelma still emails and writes to me. Naturally on every April 4th, I hear from Thelma and her last card was so meaningful, I saved it. We haven't physically seen each other in years and I imagine to most people I look fine. Which is shocking to them. But as I always say, don't judge a book by its cover. The cover can be deceiving!

As we were talking, Thelma began tearing up about the loss of "our littlest angel." In so many ways it is hard to believe that a seven year old can die of cancer, much less my seven year old. It would be much easier to fall into an abyss of "darkness and anger" like tonight's quote refers to, than to find the courage to live a life without Mattie in it. But life doesn't give you choices, and the choices you have to live with aren't always pleasant. I try to rise above these feelings so that I can help others dealing with childhood cancer, but some days I do pause and say to myself..... this is not what I wanted and expected out of my life.

In the midst of everything else I am balancing this week, Peter and I are headed to Baltimore on Friday to attend a palliative care conference at Sinai Hospital. We have been invited to speak at the conference. That may sound easy considering I write each day, but speaking is different especially speaking as part of a panel. The nature of the panel is free flowing dialogue and perspective sharing, and keep in mind we do not know the exact questions being posed to us. This format does require clear thought and some preparation ahead of time, otherwise, when asked a question, the examples, points, and messages won't be meaningful or succinct. So hopefully I will wrap my head around this notion tomorrow in preparation for Friday. Certainly sharing our story with others is powerful, because during these presentations the content is real, honest, and not censored. Which can be hard to listen to because of its sensitivity and rawness. But of course after the presentation is over, attendees go back to living their lives, and we as parents have just re-exposed ourselves to the trauma of Mattie's diagnosis, battle, and death. Which is another balancing act.  

April 23, 2013

Tuesday, April 23, 2013

Tuesday, April 23, 2013 -- Mattie died 189 weeks ago today.

Tonight's picture was taken on April 4, 2008. Mattie's sixth birthday. Mattie's birthday may have been on the fourth, but truly the whole month of April was a Mattie celebration. I grew up having Carvel ice cream cake for my birthday, and I continued the tradition with Mattie. Mattie enjoyed a slice of ice cream cake each night for over a week! When I look closely at this photo, I notice in the background under my piece of furniture a Mattie creation! Mattie was very creative with found objects such as paper towel rolls, yogurt containers, boxes, and you name it. Under the piece of furniture sat a Mattie masterpiece. Our house used to be filled with them all over the place. Mattie had a way of filling up a room, a presence which will always be missed and a void which will always remain.

Quote of the day: The tragedy of it is that nobody sees the look of desperation on my face. Thousands and thousands of us, and we're passing one another without a look of recognition. ~ Henry Miller

About two weeks ago I received an email inquiry through the Foundation website. It was from a woman named Ansley who is a social worker at a local preschool in Alexandria, VA. Ansley said she wanted to contact me because she found Mattie Miracle's website on the Internet and was intrigued by our mission. Specifically because our mission focuses upon helping meet the psychosocial needs of children and families! She went on to say that her preschool moms held a raffle, raised money, and together they decided to donate all their proceeds to Mattie Miracle. It isn't every day that someone, who I don't know, contacts me and wants to give me money! So I already knew Ansley and these moms had to be special people. Just through the website, Mattie's story captured them. But I did not realize the full extent until I was invited to meet with them today!

This morning I drove to the Child and Family Network Center (CFNC) in Alexandria. I learned a great deal about the School as well as the importance of early interventions for at-risk youth. CFNC's tag line is, "It's simple: Children thrive when families succeed." CFNC is the only non-profit organization in Alexandria that provides quality bilingual preschool and family support services free of charge to the working poor. The program is designed to equip children with skills they need and deserve to succeed, providing opportunities for them and their families that many of us take for granted. The profile of a CFNC family is:

1) 85% speak little or no English
2) Half make less than $23,050 per year
3) All make less than $41,348 per year
4) Parent's average education level is 8th grade

The impacts of quality preschool are proven to dramatically transform children's futures, particularly those living in poverty. As a result of setting young children on the right path by preparing them to learn in kindergarten, quality preschool has positive ripple effects throughout their lives.

Without high-quality early education, at-risk children are:

1) 25% more likely to drop out of school
2) 40% more likely to become a teen parent
3) 50% more likely to be placed in special education
4) 60% more likely to never attend college
5) 70% more likely to be arrested for a violent crime

When I arrived at CFNC, I immediately met Ansley. It turns out that Ansley is also a George Washington University graduate. We both received a master's degree from GW in counseling. A rather small world, though our time on campus did not intersect. None the less, I am very proud of what she is doing and accomplishing as a counselor within the community. She is making a difference in the lives of each of the families she counsels.

Ansley invited me into her support group gathering to meet eight moms who worked very hard by creating jewelry and other hand made crafts to sell at the school's raffle. A raffle which generated $600 for Mattie Miracle!!!

I brought pictures of Mattie with me today as well as Foundation gifts for these ladies. I wanted to show them our thanks and appreciation. These eight moms listened to me intently and several had little ones with them, who were very well behaved and listening. But what you should know is I don't speak Spanish and these moms didn't speak English. So Ansley translated everything I said.

When I selected tonight's quote, it was purposeful. Miller's quote resonated with what I saw and felt in the eyes of my observers today. These are women who understand pain, the pain of living at the poverty level, the fear of not being able to provide for their children, of not having an education, an income, and several of them have children living in another country and are separated from them for years on end. Though they couldn't verbalize these pains to me, I could feel them and sense them! Which maybe why they empathized with my own pain. Pain transcends culture! It is universal and is one of the things that makes us human, the signs are the same whether you are from America or another country! Words are not needed sometimes. These moms and I are quite different from an educational and socioeconomic standpoint, and yet we are exactly the same. That was very humbling to see. 

These women struggle in their daily lives and yet they worked hard to have a successful raffle. Instead of keeping the money for themselves or their school, they donated it to me. I am not sure about you, but this spoke VOLUMES to me!!! They moved me and I don't get moved too often anymore. Their level of selflessness was awe inspiring, they have their own issues and problems, and yet they felt compelled to help children and families within their community. I told them today about Mattie, about his cancer battle, and specifically the things our Foundation is doing to directly help children with cancer.


After my presentation I had the good fortune of taking some photos with these wonderful CFNC moms! I also love the little girl right by our banner!!!






Ansley and I are like bookends in this photo! Ansley also gave me a tour of the facility and I had the opportunity to meet the CEO and executive director of the School. This evening Ansley wrote to me about the powerful effect I had on her School moms this morning and I must say the feeling was mutual. Mattie Miracle is very grateful to receive such support from CFNC and we look forward to these families coming to our Foundation Walk!
 

April 22, 2013

Monday, April 22, 2013

Monday, April 22, 2013

Tonight's picture was taken in April of 2008. Mattie loved being outside on our deck and playing either in his sand box or getting soaked with our hose. Mattie would always tell me he wanted to go outside and water our plants, but the reality was he just loved getting wet. Which was why on this particular occasion he put on his rain coat. In the summer of 2008, before Mattie was diagnosed with cancer, he insisted on making me a special birthday gift. He and Peter worked on these gifts for weeks! These gifts were handcrafted fountains. I had no idea these fountains would be the last birthday gift I received from Mattie. Needless to say these fountains are special to us and they are one of the many Mattie features on our deck!


Quote of the day: Tragedy is like strong acid - it dissolves away all but the very gold of truth. ~ David Herbert Lawrence 


I read this quote over and over again today. I suppose it could be up for interpretation but to me what Lawrence is telling us is that through tragedy we see the reality of perhaps our world and the people within it. A reality that we may not have noticed or experienced without the tragedy. A rather sad commentary nonetheless that we would need such devastation in order to see the truth.

The explosions in Boston may have occurred last week, but to me they seem very fresh on my mind. I can picture what limbs flying off looked like and I can also picture the recovery and the psychological ramifications now faced by these victims. Mattie may not have had his limbs blown off, but from my perspective limb salvaging surgeries were gruesome and relearning to walk (which Mattie never did) was no easy process.

Just like in Boston, where we witnessed incredible strength among the city's citizens, heroic acts performed by everyday people and law enforcement, and of course a city united so that ultimately good would conquer evil! I saw a similar
nugget of "gold" uncovered within my own family's tragedy. When Mattie was diagnosed with cancer, an incredibly devoted support team formed. This team wasn't composed of one or two people, but MANY! From all of our communities (work, schools, and neighborhood). As we dealt with Mattie's care, this team dealt with everything else such as our food, errands, and all sorts of gifts. Multiple acts of kindness, compassion, generosity, and beauty unfolded. Things I would say I have never personally experienced and witnessed within my own life. Now three years later, the gifts on behalf of Mattie still keep coming in.


As most of my faithful readers know, in October the Foundation runs a post-Halloween candy drive in which several hundred pounds of left over candy are donated to Georgetown University Hospital. It is very easy in many ways to get candy donated to us, but I really wasn't sure what it would be like to get toiletries donated to the Foundation in honor of Mattie's 11th birthday. After all, many of these items have to be bought with the Foundation drive in mind, they aren't left over products (like Halloween candy). I had several friends help me with this drive and literally among all of us we covered Virginia, Maryland, and DC! However, I still have two more friends to meet up with to collect supplies, so there is no telling what the grand tally will look like in the end. But I am beyond impressed and would never have imagined such a collection could be generated!

This afternoon, I spent some time sorting through what has been collected so far (toothpaste, mouthwash, toothbrushes, shampoo, conditioner, lotion, lip balm, soap, razors, shaving cream, laundry detergent, dryer sheets, nail files, and keurig cups for coffee and tea). As you can see Mattie's bed is filled with supplies for in-patient families caring for a child with a life threatening illness. This is our first year doing such a drive, but these items are SO needed because when your child is hospitalized it is hard to remember to pack all the things you need to survive. Your mind is just not on supplies! All of these items were donated to the Foundation in honor of Mattie's 11th birthday. I think that says something about the power of Mattie. He is no longer with us, but his memory inspires others to give, to remember, and to help other children and their families battling childhood cancer. I would say that I had a very special son. Though this is not the "gold of truth" revealed by this tragedy. That fact I already knew.

April 21, 2013

Sunday, April 21, 2013


Sunday, April 21, 2013

Tonight's picture was taken in April of 2008. That was Mattie's first and LAST spring festival at his school. Honestly if you told me that three months after this photo was taken Mattie would get diagnosed with cancer, I wouldn't have believed it. He seemed so healthy and happy at the time! Pictured with Mattie were his friends Campbell and Livi. I recall taking this photos as if it were yesterday. They were having such a good time together! Mattie and Campbell learned a lot from each other about friendship that year in kindergarten. Now Mattie's friends are in fifth grade and will be going to their 6th spring festival at their school this coming week. It is hard to know that this is happening and that these children are graduating from the lower school soon, and yet Mattie never made it passed kindergarten. He never saw a second spring festival, and in turn, neither have Peter and I.


Quote of the day: There's no tragedy in life like the death of a child. Things never get back to the way they were. ~ Dwight D. Eisenhower 

I suspect most parents with healthy children have a hard time understanding my world. After all why should you get it? I wouldn't want to get it or even reflect upon it if Mattie were living. A child dying has to be a parent's worst fear!!! It is life's greatest tragedy and like Eisenhower stated, "things NEVER get back to the way they were" once your child dies. This is simply stated, but very accurate. Of course Eisenhower would know since he lost his first child in 1921, at age 3, from scarlet fever.

When I think about Martin Richard, the eight year old boy who lost his life during the Boston Marathon explosions, I know all too well that this family will never be the same. In addition to this loss, Martin's sister lost a leg and his mom was severely injured in the blast. A family who had the best of intentions to celebrate Patriot's Day on the streets of Boston, after all this is a free society, but in a matter of minutes the beautiful life this family once knew was taken FOREVER. This tragedy gives me pause and causes me to further reflect on my own loss.

This morning as I was sitting at the breakfast table with Peter, it hit me again (as it does on occasion, when I allow myself to reflect upon it) that Mattie is missing from our lives. Even our weekend breakfasts are different now. When Mattie was alive he always wanted homemade waffles or pancakes on the weekend. Since Mattie's death I have never gotten out the flour and my other ingredients to make pancakes or waffles ever again. They died with Mattie.

The scary part of losing someone you love also hit me today! At times as strange as it sounds, my mind can play tricks on me, and I begin to wonder.... was I ever a mom? It seems like another life time ago? As if I were a different person. I desperately struggle to remember the days of being a mom and just the notion that I have to work so hard to remember details produces anger, guilt, and a host of emotions. These are feelings most moms never have to reconcile. But these are feelings I struggle with often and live with daily. When I hear other moms complaining about their harrowing days, I get it naturally (because I too lived that life), but now that I don't have a child, I can sit back and truly evaluate how lucky moms of healthy children are because they have a full and busy life and are given the gift of being able to watch their children grow and have a future.