The Mattie Miracle Walk and Family Festival was a $55,000 success!!!

The Mattie Miracle Walk and Family Festival was a $55,000 success!!!
Thanks to all who attended, contributed, volunteered, and helped to make this day possible! More psychosocial miracles are bound to come!!!

Mattie Miracle selected to be the Flame of Hope award recipient!!!

Mattie Miracle selected to be the Flame of Hope award recipient!!!
The Georgetown University Hospital board nominated and selected Mattie Miracle to be the recipient of the Hospital's highest honor, the Flame of Hope award. The Foundation will be bestowed this honor on March 29, 2014 at the Georgetown Pediatrics Gala.

Mattie Miracle's Interview on Fox 5 -- 3rd Annual Candy Drive is a 2000 pound success!

Mattie Miracle's Interview on Fox 5 -- 3rd Annual Candy Drive is a 2000 pound success!
Thank you for making our candy drive a major success!!!!

4th Annual Walk & Family Festival -- A HUGE Success!!!

Mattie Miracle on Fox 5 News -- Candy to Remember Mattie--November 15, 2012

Mattie Miracle on Fox 5 News - May 11, 2012

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 second anniversary!

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

We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: 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

Random Shots of Mattie, Family and Friends

Number of Visitors Since October 12th, 2008

September 30, 2014

Tuesday, September 30, 2014

Tuesday, September 30, 2014 -- Mattie died 264 weeks ago today. 

Tonight's picture was taken in October of 2007. That weekend we took Mattie to Glen Echo Park in Maryland. Mattie enjoyed going to that Park because he loved seeing the puppet show company there and riding on the Dentzel carousel. There was also an old fashioned street car on display that Mattie loved exploring. It was a Park that really had something for all ages! When Mattie was a toddler it was very hard to engage his mind and body at the same time. Yet the puppet company at the Park always caught his attention. Mattie was fascinated by the creativity of the puppets, the stories, and this kept us going back for each and every show they performed throughout the years! Peter and I haven't been back to this Park since Mattie died. Tonight I went back to the Park's website and noticed that ballroom dancing classes are offered in their Spanish Ballroom. This intrigues me because on Saturdays the Ballroom features dances with a live orchestra. 

Quote of the day: A butterfly is like the soul of a person, it dries out in captivity. ~ Marlene Van NiekerkAgaat

I finally was able to begin writing the book chapter that I have been struggling with. That may not sound like a big deal, but to me this is a momentous occasion. I have had a very serious writer's block. I have been having trouble concentrating, reading, sitting still, and certainly focusing on writing was impossible.  

This weekend, what first started to help release this block was Peter and I spent about an hour chatting through the book chapter and we talked through ideas and put thoughts into words. This began to help me think through some of my stuck feelings. 

Then today I received an email from my friend Linda and she said to me to basically try to write and let Mattie guide my insights. Somehow that is what I needed to hear as I sat to try to tackle the introduction of the chapter, which I am still working on tonight. But while I was writing, guess what I saw? YES a monarch butterfly! This butterfly flew by my window ALL afternoon. I took that as a direct message from Mattie as his inspiration and guidance to me as I began crafting this chapter. Unlike the chapter I wrote this summer, this chapter is a parent perspective. In essence...... to share insights on what Peter and I learned from Mattie's cancer experience that will help other mental health providers working with children who have cancer and their families and then explained what caused us to be advocates and start a Foundation and National Psychosocial Standard of Care project. 

The parent perspective of having a child with cancer is SO important and yet when you turn to the research literature there is a void of any data. As if our opinions don't matter in a way, or at least havent' been captured. Which maybe why I feel a great deal of pressure writing this chapter. I am being given the chance to have a voice, when there really aren't many voices out there in the peer reviewed literature. Naturally of course any time this voice expresses Mattie's story, well then that is cause enough for me to make sure that the writing is well done. So this all gets factored into the equation and has stymied my ability to write for quite some time. But I am holding onto the thought of being guided by Mattie and that beautiful butterfly that I saw today! 

September 29, 2014

Monday, September 29, 2014

Monday, September 29, 2014

Tonight's picture was taken in May of 2007. This photo actually is a follow up to the picture I posted on Saturday! It was taken in the same location, at one of Mattie's favorite restaurants in Maryland. As you can see it had a pond with turtles and fish right in front of the restaurant. We were posed for a photo while sitting on "Mattie's rock," as I call it. In fact we sat on this rock for many photos. Our Christmas photo of 2005 for example! Tonight's photo was from Mother's Day of 2007. Each time I go back to this restaurant and see this pond and this rock, I can't help but think of all our Mattie moments. But the mind has a way of playing funny tricks on you, because it seems like such a long time ago, in which I sometimes pause and wonder was I really Mattie's mom? I suppose writing about Mattie and talking about him each day on this blog keeps him very much alive for me, but what if there were no blog? It would be a problem, because there aren't daily reminders and conversations about Mattie happening otherwise. 

Quote of the day: To be of good quality, you have to excuse yourself from the presence of shallow and callow minded individuals.  Michael Bassey Johnson

I had quite the unexpected phone call today! My home phone rang and I could see on my caller ID the name of the caller. I somewhat recognized the caller because I thought it was Mattie's play therapy practice that worked with him years ago. Way before Mattie developed cancer! During the years when we were struggling from the aftermath of Mattie's first preschool dismissal and with his sensory integration issues. For those of you who missed my previous explanation on the blog for why Mattie was dismissed from his first preschool, it is a long story. But it was a poor fit between Mattie and the school, and the director of the school in my opinion was not only unstable but she brought the worst out in Mattie. Therefore he responded accordingly. Mattie, when provoked, could dish out as good as he felt he received. As a result he literally bit the director and another child at the school.

Any case, back to my current story. The phone rang and it was the receptionist from the play therapy practice. She greeted me as Mrs. Brown and said she was calling to make a follow up appointment for Matthew. I basically told her I did not know what she was talking about and that I was sure she contacted me in error. She then said good-bye. Not two minutes later, she called me right back and again insisted she needed to make an appointment for Matthew! At that point, I gave it to her. What obviously happened is the office has another patient named Matthew Brown and she has confused the phone numbers..... but that is a huge mistake in my opinion. Now I am not sure what is more upsetting the fact that she called me twice insisting on making an appointment for Mattie, or that she has reminded me of the times I had coming to her office and all that Mattie and I achieved together prior to cancer, or perhaps what set me off is that she did not even know that her former patient died???????????? But I think what TRULY troubled me is once I explained to her that Mattie died (and they worked with him for over 6 months) and that I found her calls upsetting, she did not have much to say to me in return. I clearly caught her off guard and she was silent and couldn't wait to get me off the phone. 

This phone call has remained with me all day. When Mattie died, I would like to think the whole world understood and felt this profound loss. That everyone who knew Mattie recognized that on September 8th he lost his life. But that isn't the case, there are still people in our lives who we come across who have no idea, and it is hard when you cross paths with these people. It reminds me of when I met someone recently who knew me from my university days. This person still thought I worked at the university. Where do you begin with these folks? How different my life is now from back then, and I wouldn't even know how to describe how I am or what I am doing now! I can't go back to my former days, and I wouldn't want to. I am a completely different person.
I just wonder, if the person on the other end of the phone today had been more human (and concerned about me), would I have felt different tonight? Naturally how she treated me, one way or the other, doesn't change my overall circumstances. That will be exactly the same! But I do think how we treat our fellow human beings make a huge difference to our quality of life. I also know that managing and coping with grief has a lot to do with the degree of support we receive from those around us. At least I would have felt heard and I would have known that she acknowledged this loss and was sorry to hear that a patient from their office died. Instead, I felt nothing! Which is not a good place to be in. Honestly, she should consider herself lucky that I am not feeling well and I have to conserve my mental energy to write this book chapter. Otherwise, the art of empathy and patient relations would be my next stop on my to do list with her supervisor. 

September 28, 2014

Sunday, September 28, 2014

Sunday, September 28, 2014

Tonight's picture was taken in August of 2007. I will never forget this moment. Mattie and I went over to his friend Zachary's house. Zachary's nanny, Sara, just had a baby. When Mattie was in preschool, Mattie and Zachary played practically everyday after school together. They were the best of friends. Because they spent so much time together, by circumstance so did Sara and I. Sara and I got to know each other quite well and I actually trusted Sara with Mattie. Which was saying a lot because I was very protective of Mattie. But I liked Sara's caregiving style and since we spent a lot of time together, I knew how she handled practically every situation and she also managed disagreements between Mattie and Zachary very fairly. As you can see in this photo, Mattie got to hold the baby. This was Mattie's first and last experience holding a baby. He seemed to really enjoy the whole process. On an aside, years later after Mattie died, I had the opportunity to meet Sara's baby, who grew up and by that time was Mattie's age. When I met him, he reminded me so much of Mattie, it was uncanny. Rather ironic how that all worked out. 

Quote of the day: You are what you do, not what you say you'll do. ~ Carl Jung

Peter and I have decided this Fall to visit Mattie's tree every weekend until we have our first frost. We feel the need to nurture the tree through the Fall and most likely will do the same thing once the Spring comes. The only way to truly know how this tree is doing is to observe it for ourselves. So every weekend we visit and water it ourselves. We placed enough mulch around this tree so that I do not need to see weeds growing around it, which truly upsets me. I don't like seeing weeds around any tree, but weeds around a memorial tree bothers me deeply. When we got to the school, there were children playing on the playground and running all over the place. That is always a sight to see and become adjusted to. We go on the weekends, because school is not in session. But naturally people from the neighborhood come onto the property and use the playground, which is understandable, since the campus is delightful. A part of me would much rather be bringing my child onto the playground to play rather than be coming to visit a tree which symbolizes the life of a child that once existed.   

This morning, Peter and I spent a part of the morning outside on our deck. We had breakfast out there and he had me laughing. He knew I would be cold, so literally he brought out a space heater. He used to do that for Mattie when he had cancer! Mattie wanted to play in his sandbox during the winter, between cancer treatments while he was home from the hospital. So Peter would bring out the heater with an extension cord. We would bundle Mattie up and out we would all go on the deck. Of course we had to make sure Mattie's central line (which was connected to his chest and was how Mattie received all his chemotherapy and medications) was fully covered and protected, so it wouldn't get full of sand. Any case, as the space heater came out today, I couldn't help but remember our times out on the deck with Mattie. 

I find it rather ironic that when I woke up this morning, I had a very vivid dream of Mattie. Which I shared with Peter. Typically I can't remember my dreams, but in this one Mattie and I were holding hands and he needed a diaper change. However, I had nothing with me to change him (totally not like me!). So literally I am walking with him from room to room, building to building, trying to find his diaper bag or cubbie of things. In my dream some of the rooms were familiar and at times others were completely new and unfamiliar, and yet we just kept walking through them exploring them looking for this things together. It was the most bizarre dream, and yet it seemed quite real and vivid. In a way, I felt as if I could hear his voice, hear his stories, and so forth as we were negotiating our way through the rooms!

September 27, 2014

Saturday, September 27, 2014

Saturday, September 27, 2014

Tonight's picture was taken in November of 2005. We brought Mattie to one of his favorite restaurants and dressed him in red with the hopes of posing him for our cover photo for our Christmas card that year! This was the actual photo that went to all our friends and family in 2005. The reason why Mattie loved this restaurant so much was the man made pond right behind him. In the pond are fish and turtles. When Mattie would get bored eating or when he had enough of sitting still inside the restaurant, he would ask to come outside to look at the fish and turtles. These outside diversion were a saving grace for all of us!

Quote of the day: The greatest degree of inner tranquility comes from the development of love and compassion. The more we care for the happiness of others, the greater is our own sense of well-bring. ~ Tenzin Gyatso

Yesterday I found out I have two more small kidney stones and that did not put me in the best of moods. I am not sure what bothers me more, the actual stones or the total insensitivity of the medical system in which I have to deal with! Frankly just migrating through the system could make you ill. It is one gatekeeper after the other. Forget about talking to a doctor, and I am quite sure that many doctors have to go right back to medical school, because so many of them do not know anything beyond their own specialty area. Simple questions about the kidney send them right out of their comfort zone. So naturally my basic questions need to be referred to a nephrologist! Seems to me since Mattie's death, I have developed a rapport with more specialists than I care to list here! I would say this is truly the aftermath of having a child die traumatically. While Mattie was battling cancer, I was in overdrive and pushed through things without sleep, with a total disregard to my health. Now, I am paying the price for that and also grief has a way of eating one from the inside out. 

In any case, last night I posted a list of 20 things about grief. For the most part the list resonated with me but there are bits and pieces of this list that UPSET me greatly. I was too tired to get into it last night. Of course as Peter read my blog from last night, he started to talk to me about it and I guess he was perplexed by the list and my lack of commentary on it! Since I did not comment on some of the items, I think he thought I agreed with all of them, which worried him! However, he knows me better than that, which is why he verbalized his concerns! I have more energy tonight, so here are my reflections on the list with regards to numbers 1, 9, and 20 (from last night's list). These items need an absolute overhaul! Not only an overhaul, they need to be tossed right off the list to be specific. 

Here are the items:
1. We don't actually get over losses. We absorb them, and they redirect us into a more grounded way of living.
9. Losing a loved one might make you question your purpose and your own goals. That can be a beautiful thing.
20. What feels like the end is often a new beginning.

My commentary about the items:
With regard to number 1, Mattie's loss did not redirect us into a better or more grounded way of living! I can assure you! It instead caused havoc on our lives and has torn us to pieces. We are left shattered and fragmented, and forced to invent ourselves and understand the world around us. So I am not quite sure I share this philosophy. Similarly, with item 9, I do think there are other things in life that we can go through that help us question our purpose and re-evaluate our goals in a less traumatic manner than grief. I agree that taking stock in one's self and purpose are beautiful things, but I greatly question the manner in which one has to experience this! The death of a child seems to be a harsh and extreme reality check, and to me there is no beauty that can come from this. Lastly (item 20), what feels like the end is the end! There is no beginning when your child dies. That is the end of my life as Mattie's parent. It is that plain and simple. We could sugar coat it, paint a pretty picture, but that doesn't help! There isn't a new beginning. I can assure you! I am reminded of this every Christmas, during every celebration, and so forth. Again, I am forced to create a new life for myself, one I did not ask for, but a "new beginning" are two words that don't sit well with me. I lump them in the same basket as "new normal." 

I think overall the list is very helpful, and when I read it most of it did resonate with me, but some words even five years later rub me the wrong way. They can upset me greatly. They can make me feel misunderstood, and worse they can make grief seem simple or make grief seem like a great part of life in which we need it in order to grow, develop, and become better people. Grief happens and we have to deal and cope with it, but I wouldn't wish any one reading this to lose their child. I think you can grow and become beautiful in other ways. 

My friend Ann sent me this photo today of her daughter Abbie and her friends taking part in the Whipping Cream Challenge for childhood cancer. 

There is a new challenge (different from the ALS Ice Bucket Challenge) that is circulating around Facebook. It is the Childhood Cancer Challenge, in recognition of September being Childhood Cancer Awareness month. The challenge is asking friends and family to take the "Whipping Childhood Cancer Challenge." 

Basically the challenge asks you to have someone throw a whipped cream pie in your face and make a video of it and post it on Facebook!!! Then challenge 7 people to do the Challenge and consider donating $7 to the childhood cancer charity of your choice. Your friends and family have 46 hours to complete the Challenge or they can donate $46 instead. The reason for the numbers 46 and 7 is because 46 children are diagnosed with cancer every day and 7 children lose their battle to cancer every single day. 

The Challenge was actually started by a mom whose child survived cancer and she wanted to raise awareness for the disease:

I was very touched to see this photo today! Though as Mattie Miracle's president, I shy away from promotional and viral events on Facebook such as this that promote childhood cancer in this light. Nonetheless, I do support the fundraising efforts and thoughtfulness of Mattie's friends.

This afternoon, Peter and I went to the fourth annual EVANfest sponsored by the EVAN Foundation. Evan lost his battle to Neuroblastoma in 2010, at the age of 7. His parents, Gavin and Wendy created their Foundation in Evan's memory. The Foundation is dedicated to supporting research that will foster new therapeutic options for kids currently in treatment. Thanks to their efforts they have supported several new clinical trials for Neuroblastoma, they have advocated for new drug development, and also volunteer at Children's Hospital in DC and supply a Treats and Treasures cart at the hospital. In fact this October, Mattie Miracle will be supplying some of our Post-Halloween candy to their Treats and Treasures cart at Children's Hospital.

After EVANfest, Peter and I visited one of Mattie's favorite restaurants. The one from the photo up above! As you can see I snapped a photo of one of the turtles out on the rocks. It was a glorious weather day!

Peter took this photo of me. This was the exact rock Mattie was sitting on above. I just took the photo of Mattie from a different angle, so you couldn't see the building! But in my mind this will always be "Mattie's rock!"

September 26, 2014

Friday, September 26, 2014

Friday, September 26, 2014

Tonight's picture was taken in September of 2007. Mattie had just come home that afternoon from kindergarten and his after school construction club. In this construction club, they would take everyday objects and build with them. As you can see Mattie's masterpiece used tape, paper towel tubes, boxes, plastic containers, and then he colored some of the items with markers. Literally each week Mattie would come home from school with different items from his club, and he did not like parting with any of them. Finally as things would begin to accumulate, we had an agreement with each that I would photograph his art before saying good-bye to any of the pieces. Mattie's time in construction club was actually crucial because when Mattie developed cancer, he took the skills he learned in construction club and transferred them into his hospital life. In the hospital he collected boxes and other found materials and literally built with all these great things! The possibilities were endless and in a confined space this was ideal.

Quote of the day: Ring the bells that still can ring. Forget your perfect offering. There is a crack. A crack in everything. That's how the light gets in. ~ Leonard Cohen

My friend Charlie sent me this list of "20 things I wish someone told me about grief." This is a list which I find quite meaningful and now that Mattie has been gone five years, I feel that this list makes a great deal of sense to me on an emotional level. Losing Mattie to cancer has been beyond tragic and has altered our lives forever. Feeling so absolutely lost, our compass has been the Foundation for the past five years. Instead of nurturing Mattie, we are nurturing his proxy. Something that embodies his name, his spirit, and his memory. But this investment is just that, it is grounded by love and it requires time and a great deal of energy. So in death, you land up seeing the profound role that someone played or could have played in your life. When that person is no longer there, it leaves an incredible void, and sometimes that void can never be filled. Such as in the loss of a child. 

When Mattie died, I learned a lot about my support networks, and those I could and couldn't count on. People I thought would always be there for me, surprisingly weren't! Even people I knew for decades. I can't quite explain how this happens, but it does. Such losses of social connections and friendships are quite painful to face, and frankly I would say that is one of the biggest eye openers about loss and grief. It is a continuous journey of multiple losses. The death of Mattie, produced a cascade of other losses in my life. Which when you sum them altogether, it becomes downright perplexing and overwhelming. 

Yet somehow even in the darkest moments of grief, there are those who give us strength. Those unexpected earthly angels who are there for us, give us a smile, an email, a text message, and let us know we are thought about, important, and not forgotten. To these angels...... they will never be forgotten. It is amazing how a kind word can transform even the darkest of days. 

20 Things I Wish Someone Told Me About Grief by Shannon Kaiser 

1.          We don't actually get over losses. We absorb them, and they redirect us into a more grounded way of living.
2.          You'll discover depths of your love you never knew existed.
3.          Never regret loving the way you did. Love is always worth it.
4.          People may say hurtful, stupid things. Don’t take it personally. They are often just trying to help.
5.          There isn’t always a spiritual aha moment or a reason. Sometimes, it just is what it is.
6.          Know you did the best you could with the time you had. Forgive yourself. There is nothing more you could have done or said.
7.          Anger is normal. Feel it. Embrace it. Allow it to work through you.
8.          Death brings out the best in families. It will also bring out the worst. Be prepared.
9.          Losing a loved one might make you question your purpose and your own goals. That can be a beautiful thing.
10.       You will find comfort in the most unexpected places.
11.       Sudden bursts of emotion are part of the process. Allow yourself to be fully present in them.
12.       There is no such thing as normal when it comes to grieving. Be patient and kind to yourself.
13.       People will show you who they truly are. When times are tough you will see others true colors.
14.       You will never go back to being your “old” self.
15.       There is no timeline for grieving.
16.       Losing a loved one reminds us of what matters most in life. Don’t lose perspective.
17.       Experiencing great loss is an opportunity to drop the ego and live more from your heart.
18.       Numbing the pain will make it worse. Don't procrastinate the process. Feel your feelings.
19.       Your life was richer and more wonderful because of the love you had.
20.       What feels like the end is often a new beginning.

September 25, 2014

Thursday, September 25, 2014

Thursday, September 25, 2014

Tonight's picture was taken on December 22, 2008. Mattie was sitting on the floor of his PICU room playing with a tub of water and toys. Instead of getting up, his favorite nurse, Tricia got down on the floor to flush his central line. By that point, Tricia understood Mattie very well and had gone through a great deal with us. Tricia was one of the first nurses I met on the floor and I will never forget the time during his first week of chemotherapy when Mattie had an outburst. He literally threw me against the door and started hitting me. Then he told me he hated me. It was not a pretty scene in our room. I was stunned and so stressed out and exhausted. Tricia could have easily walked out of the room and left us to battle this one out alone. But she did not! Instead, she told Mattie that he did not mean what he was saying and said we both needed rest. She walked each of us to Mattie's bed and tucked us in together. I of course was in tears because I was hurt, I did not know how to help Mattie, and I was absolutely worn out from living in a hospital room. It was that special moment that Tricia spent with us, that enabled me to see the stuff she was made of, not only as a nurse but as a compassionate person. Tricia understood not only Mattie, but my whole family and advocated for all of us throughout our entire time at the Hospital. This is a person I will always be indebted to. 

Quote of the day: If you could only sense how important you are to the lives of those you meet; how important you can be to the people you may never ever dream of. There is something of yourself that you leave at every meeting with another person. ~ Fred Rogers 

Mattie Miracle went to the Georgetown University Hospital today to make its annual contribution to the Mattie Miracle Child Life Program Fund. The Foundation chooses the month of September to make this large donation for two reasons. The first is September is National Childhood Cancer Awareness Month and second and most important to us.... Mattie died in September. We honor Mattie's memory and his battle with this contribution. Though Mattie died at Georgetown, we are very aware of the fact that his team worked hard to try to give Mattie a chance at survival. In the process, so many of Mattie's health care team members became a very important part of our lives. In the photo with Peter and I are two of our board members: Dr. Aziza Shad, the Chief of the Pediatric Oncology Division at Georgetown and Ann Henshaw (our friend and Former Team Mattie Coordinator).

This Spring, Peter and I met with Dr. Richard Goldberg, the President of Georgetown Hospital in his office to discuss our Foundation. Dr. Goldberg was kind enough to join us today at our check signing party. Dr. Goldberg thanked us for our contribution and all that we have done for the Hospital in Mattie's memory. 

Pictured from left to right: Dr. Goldberg, Ann, Vicki, Linda Kim (Mattie's Child Life Specialist), and Peter

As Peter joked with me..... No, he is not singing here! Dr. Goldberg surprised us by entering the room while we were talking. So I started to smile and literally Peter was caught mid-sentence.

We had the opportunity to thank everyone for coming this morning. I explained what our $30,000 donation would be used for this year. A NEW initiative!!! Weekends are very isolating in the hospital for children and families in the in-patient units. In so many ways, the hospital is like a ghost town on Saturdays and Sundays, and the child life playroom is locked up, families do not have access to the toys and items inside the playroom, and there are no child life specialists on hand during the weekends to help break up the the long and tedious hours. Therefore, we are committed to hiring a child life professional who will cover weekends at the hospital and provide support to families who are in-patient. This is a much needed resource and thanks to our supporters this is all possible!!! 

I entitle this photo, "Our Georgetown Family." From left to right are: Katrina (a wonderful PICU nurse, who helped Mattie numerous times), Mary (HEM/ONC social worker), Denise (Mattie's social worker, and Mattie Miracle supporter), Vicki, Peter, Debbi (Mattie's sedation nurse angel and our friend), Linda Kim (Mattie's Child Life Specialist and the person we raise funds for!), Tricia (Mattie's favorite HEM/ONC nurse and Mattie Miracle supporter), Jess (Child Life Specialist), Ann (Mattie Miracle Board Member and our friend), and Katie (Child Life Specialist).

When I brought these cupcakes through the hospital hallway and up the elevator, I had several people stop me and ask me where I sell these cupcakes. I had to laugh! They thought these cupcakes came from a bakery! I then told them I baked them myself and a nurse on the elevator said they then were "baked with love." She got that right and she did not even know me! As I told the group today, I bake these cupcakes because they were Mattie's favorites. Cupcakes were used as incentives to get Mattie to do his physical therapy (which wasn't easy when you have three prosthetics and for the most part were confined to a wheelchair). These cupcakes remind me of Mattie and because he loved them so much, I bake them each September when we donate a check to the Hospital, a place he loved so much that he chose to die there. To me there could be no other treat we could possibly serve that would be more appropriate. In addition to the cupcakes, I brought two of Mattie's plastic bugs, a butterfly, and a photo of Mattie when he was healthy. 

After I spoke, Peter shared some highlights and updates about our Standard of Care project. Then Tricia said a few words. I would actually say these were tender moments
being shared, because Tricia wanted us to know that not a day goes by when she doesn't remember Mattie and she also acknowledged Mattie Miracle and all that we do for the Hospital. Tricia has and continues to be on this journey with us and her understanding of our family brought many of us to tears. 

As we left the hospital today, we took two photos! This is the sign that greets people to the fifth floor of the Hospital. The fifth floor is where all the pediatric units are located. You will notice that in the upper right hand corner there is a red footprint. That footprint belongs to Mattie! I remember one day in the clinic, Jenny and Jessie (Mattie's art therapists) were designing this sign. They asked Mattie if he wanted to help with it and he wasn't interested in it at all. The only thing that interested him was getting messy and painting "George" (his left foot). I am not sure Jenny and Jessie originally wanted hand and footprints on their sign, but they went with it! The footprint belongs to Mattie and the hand print belongs to Baby Morgan, who is no longer a baby, she has to be five years old now!

This second photo was taken on the first floor of the hospital. I am thrilled that this poster is still in the Children's Art gallery. Now five years later! Mattie created this story, during a time period when children and parents were asked to design and create their ideal hospital room. We could write about it, draw it, create a model, or do with this project as we pleased. Mattie wrote a story and also created a Lego model of his ideal hospital! Mattie's ideal hospital had an outdoor component for kids to play in! Which is why one of my ideas for Georgetown has always been to create an outdoor play space. But I haven't gotten too far with selling this idea to the administration, but for Mattie and I escaping the inner confines of the Hospital and getting fresh air were vital for our physical and mental health and in a way this need for freedom was captured in his story and in his Lego model.

September 24, 2014

Wednesday, September 24, 2014

Wednesday, September 24, 2014

Tonight's picture was taken on September 3 of 2007. This was the first day of school for Mattie. Kindergarten to be exact. It was a big day for him and for me. It was all day school and the first day Mattie and I were going to be separated from each other for six hours. I wasn't sure how he was going to like school, his teachers, the other kids, and of course I wasn't sure if he was going to be able to advocate for himself. I was used to being Mattie's fieriest advocate, that in a way I was a bit lost when he went to kindergarten, and I was worried he wouldn't know how to stand up for himself without me. But we both managed in our own way. I remember an incident that occurred while Mattie was in kindergarten. It occurred in the middle of the school year. Mattie was pushed on the playground by one of his classmates and pinned down to the ground. Mattie in turn actually hit the boy with a shovel, right in the face, in order to break free. Mattie was a non-violent child by nature, but if provoked and cornered apparently he knew how to set things straight. Naturally I was upset to learn what had transpired, but the irony was Mattie's school seemed to know their players and they assessed Mattie as a non-trouble maker. Which was good because otherwise, I am sure we could have easily been sitting in the head of the school's office discussing the next steps on Mattie's behavior management. As I look at this photo, I always reflect on the fact that I never would have guessed at the time that this was going to be our first and last first day of school picture ever! 

Quote of the day: If you aren't willing to fight for what you believe, do not cry about what you will lose. ~ Unknown

Tomorrow Peter and I are going to Georgetown University Hospital to donate $30,000 to the Child Life Program. This year we are supporting a new position, the creation of a weekend specialist who will work with in-patient children and families. The weekends are very isolating times within the Hospital and having a child life specialist on hand will truly make the environment more tolerable for the pediatric units. When we present our check, we always bring with us Mattie's favorite cupcakes. It is our tradition, in honor of Mattie. Peter and I worked as a team today to make these tasty treats! I baked them and Peter frosted them!

When Mattie was battling cancer, I used cupcakes as incentives for him to comply and do his physical therapy. If he did what Anna asked him to do, he basically earned a cupcake. In many cases, we would give Mattie cupcakes for just about anything because we were desperate to get him to eat and to give him calories. Nutrition wasn't at the top of my list and if you saw Mattie, who was skin and bones, you would understand why a balanced diet wasn't the priority. Calories and anything he could tolerate were! Which is why the cupcake is a special symbol to me! 

On check presentation days, we could bring in a cake or have cupcakes from a bakery. But it wouldn't have the same meaning. When we present the check, we are in essence giving Georgetown a gift. A gift that ties to the incredible work they did trying to save Mattie's life, and we want to support their ability to meet the emotional needs of other children and families within their Hospital. But the cupcakes are my personal symbol of my love for Mattie. This is what I did in those last final months and weeks to try to give Mattie strength to help him along. 

I think about it this way..... 
we present the check in the Hospital Mattie was treated at, 
we present the check to Linda, his child life specialist, 
the check signing ceremony takes place in the child life playroom (a room Mattie played in often)..................................................................

therefore the sweetness of Mattie's cupcakes somehow completes this whole picture! These tasty treats keep us grounded and remind us of who brought us to Georgetown in the first place and what continues to keep us focused on our mission and the work we are doing.