Saturday, October 5, 2013

Saturday, October 5, 2013

Tonight's picture was taken in October of 2008. At that point Mattie just had his first limb salvaging surgery and was recovering. His arm was bandaged and in a sling, but the left arm was fully functional. Mainly because the left arm hadn't been operated on yet. This photo always gets me to laugh. The lady by the door was Anna, Mattie's physical therapist. Mattie, I believe, really pushed Anna to grow as a physical therapist. Anna became a trusted member of our team and she always looked out for Mattie's best interest and found creative ways to inspire Mattie to use his limbs and keep them active. As you can see, Anna wanted Mattie to lift his left arm and maintain its strength. Certainly he could have achieved this through exercises, but she knew he wouldn't do them. But he would play! Therefore, she brought in a water gun and animals in front of him that squirted out water. Anna was the target and Mattie had a great time that day trying to get her all wet.


Quote of the day: I think the best friendships are those that can stand the test of time, where the friendship is based more on who you are than on what you do or what you have. ~ Steve Pavlina


Though the Foundation had one activity after another this week, I had the good fortune to be able to connect with two friends who live out of state. The irony is I met both of these ladies through the same professional association, an association in which I was a board member.

On Thursday evening, I met with my friend Beth, who now lives in South Carolina. The last time we saw each other was at Mattie's funeral. So it was a very special reconnection and the hours we spent together just flew by. Beth and I have a mutual respect for each other and when Mattie was first diagnosed with cancer, I took him over to Beth's home in Alexandria, VA. Beth is a cancer survivor and the visit was to show Mattie that Beth survived and therefore with treatment, he could too. Mattie met Beth's cat, she gave him some meaningful gifts, and it was a special outing for us during a very stressful, anxiety provoking, and uncertain time. You don't forget these acts of kindness. They remain with me, so much so that Beth and I reflected on that visit, now five years later!!!!

Today, Peter and I went out to lunch with my friend Nancy and her husband. Nancy and I have known each other for years and she even drove down from NYC in May to attend the Foundation's Walk. Nancy and Marv drove from New York City today and it was our first time meeting as couples. We had a great time together and Nancy surprised me with this beautiful decorative orange butterfly. This butterfly is the first of my hopefully growing collection that will be decorating Mattie's new room. My goal is to transform Mattie's room into all things butterfly! Including the sun and the moon. 

I love tonight's quote, because my friendships with Nancy and Beth are definitely based on "who we are," and not what we do or have! Being appreciated for who one is, is vital, especially since I am a person who is defined by cancer and the loss of a son. There are so many slogans out there of what cancer can't do to a person. It can't do this and that to one's character, personality, etc! I get all of that in theory, but for most of us cancer does define us and most likely will to some extent all of our lives. I think what my friends appreciate about me is that I am straight shooter, I have opinions, you know where I stand, and I tend to be a person who stands by these convictions. Any case, in the midst of whirlwind of a week, that has left me exhausted, I find reconnecting with friends energizing. Friends have a way of reminding us who we are at the core, and frankly regardless of who you are, I believe..... we all need to feel a part of something and appreciated.
 

Friday, October 4, 2013

Friday, October 4, 2013

Tonight's picture was taken in November of 2008. Mattie was between Linda (on the left), who was his child life specialist, and Lesley (on the right), one of Mattie's fabulous child life interns. As you can see Mattie came back to his PICU room bearing a gift. He painted a lamp for me. A lamp I still have!!! All the pieces of art Mattie made that year in the hospital are all very precious to us. Peter and I will always be indebted to Linda for the amazing work she did with Mattie. Mattie truly loved her, considered her a friend, and knew she had his best interest at heart. Today, while visiting the Hospital, I swear I could hear Mattie in my head screaming out.... LINDA!!!!!!!!!!!!! Or as Mattie would do it, it sounded more like LIN---DAAAAAAAAAAAAAAAAAAA!!!!


Quote of the day: When you tend to another's dying embers, you find both warmth and an increase in the glow of your own fire. ~ Richelle E. Goodrich

This was a very BUSY week for Mattie Miracle. Monday was the Smoothie Fest, Wednesday was the Chocolate Therapy workshop and today, we presented the Hospital with our THIRD Mattie Miracle Check since 2011! As our donors know, all funds generated from our May walk go directly to helping children battle cancer as well as to promote our national agenda to create a psychosocial standard of care. We couldn't accomplish any of this without our faithful contributors!!!! For three years in a row, Mattie Miracle has funded a child life position at Georgetown University Hospital.

The position is filled by a wonderful young lady named Jess Abrams. Jess is no stranger to cancer, when she was a child her sister battled cancer and then died. Jess remembers how important a child life specialist was in her life and that of her sister's, which is most likely what inspired Jess to enter this profession. When Mattie battled cancer, scan and procedure days were very scary and traumatic for him (scans are done every couple of months to determine the effectiveness of cancer treatment). Thankfully early on Linda came along with us on EVERY single scan. Linda helped to distract Mattie, played with him, and together we would explain what was going to happen next during these long days. Keep in mind that some of Mattie's MRIs were TWO HOURS long!!! After Mattie died, Peter and I felt inspired to help support Linda's program and help pay for the salary of a specialist who could do exactly what Linda did for us..... assist children and their families on scan and procedure days. Jess now works closely with the sedation team and assists on over 300 procedures per year and also works directly in the pediatric units with about 3500 families per year!!! It is truly an amazing achievement what our Mattie Miracle community has accomplished.

It is a tradition, that when we have a check presentation day, I bake Mattie cupcakes. Mattie LOVED vanilla frosted cupcakes! As many of you know, Mattie HATED chocolate!!! When Mattie was between treatments and not sick (which was rare), we would be home for a couple of days before returning right back to the Hospital. During those days, I would bake cupcakes and pack them up to take them to the Hospital for our next admission. I used cupcakes as an incentive for Mattie to do his physical therapy. If he accomplished an exercise, he earned a cupcake. It was rather effective. Though in all reality, Mattie was skin and bones and giving him any sort of fat and sugar was a great thing! As you can see, I decorated the table in Mattie Miracle colors today and brought along 30 cupcakes and some Mattie plastic bugs. Mattie was notorious for having rubber bugs and other creepy things to scare his nurses with!!! 

In a way, we had a mini-reunion today. From left to right are Linda (Mattie's Child Life Specialist), Katie (a Child Life Specialist), Peter, Vicki, Jess (the Child Life Specialist position we fund), Debbi (Mattie's sedation nurse angel), Ann (our Team Mattie Coordinator and Foundation Board Member), and Tricia (Mattie's favorite Hem/Onc nurse).

During our gathering today, Linda said a few words about the generosity of our contribution. Linda admitted that Mattie pushed her to be a great Child Life Specialist. They were quite good for each other! After Linda spoke, Tricia and Debbi also said a few words. Tricia is a LOYAL Mattie Miracle supporter. Her whole family supports us and has attended every Walk we have ever hosted. Tricia told us today that as soon as she met us and began caring for Mattie, she realized we were a special family. Tricia is our BEST PR. She tells families about Mattie Miracle and when the snack cart comes by, she tells them just where these items came from. Needless to say, Peter and I will always be indebted to Tricia, Debbi, and Linda.

Vicki with Debbi and Tricia! Sandwiched between two extraordinary nurses! They may look cute, but both of these women are formidable, they can hold their own with medical doctors, and truly cared for our entire family, not just Mattie. 

Peter and I with the amazing Georgetown Child Life staff! Each of these women work diligently to make the life of a hospitalized child just a little more bearable! As we left the Hospital today, Linda walked Peter and I to the new memorial garden. We are looking into creating a 12x12 paver for this garden to acknowledge the life of Mattie. That way Mattie will always be visually remembered at Georgetown.

Thursday, October 3, 2013

Thursday, October 3, 2013

Tonight's picture was drawn by Mattie in October of 2007. Mattie used to leave all sorts of creations for us on his dry erase board. I get a kick out of this picture because apparently NONE of us had hands and arms, only legs. The irony was despite this condition we all had smiles on our faces. Check out Patches, our cat. Patches was drawn in pink and her body looked like a star!!! Back then I tried to introduce Mattie to a word a day. The word of the day was PUMPKIN. An object Mattie very much appreciated.  


Quote of the day: It's not enough to have lived. We should be determined to live for something. May I suggest that it be creating joy for others, sharing what we have for the betterment of personkind, bringing hope to the lost and love to the lonely. ~ Leo Buscaglia


"Bringing hope to the lost and love to the lonely," what a wonderfully stated notion for our purpose in life. Yet so often we do not live by this philosophy. In just two months time, Washington, DC has experienced mass hysteria. Between the Navy Yard shootings and now today gun fire at the US Capitol killing the suspect. If these facts are not horrible enough, the suspect in today's shooting had a baby in the backseat of the car she was driving. One has to ask what was going on with this woman to want to put a child in harms way and to also value her own life so little?

Clearly at the heart of the matter these individuals suffer from a mental health issue. Once we hear that, I am not sure how we are supposed to react.  Are we supposed to feel better or maybe say..... well that figures, or that explains the behavior?!!! Labeling something is only one fourth of the problem. Without addressing it, the problem only grows. It grows so much that we have people killing others and themselves. To me this is a sad commentary about our society, because what this says is so many people with mental illness have lost hope, have no direction, and are lonely.

As I look into the world I currently operate in, the cancer world, I am privy to many, many stories from families who are battling childhood cancer. Any one who has walked the cancer journey knows that mental health issues pop up all the time. How could they not when dealing with life and death issues, living in a hospital, and experiencing toxic treatments. There is no choice, it is a chance at living and putting up with the treatment or death. So most of us opt for the treatment. Yet what always amazes me is the lack of truly helpful psychosocial support for patients and their families. In fact in many cases the mental health support in place can at times be judgmental and make the patient feel inadequate and actually further set off a negative chain reaction of  depression and helplessness. I once believed that any mental health professional could help any particular person, as long as the professional was empathetic, a good listener, was insightful, had good skills and access to resources. I am not sure I share that same philosophy now. I do think that having the personal insight into the world of battling cancer gives me a perspective that those who work in the field sometimes lack.

Tomorrow the Foundation heads back to the Hospital for our yearly check presentation ceremony. In tow with me will be 30 Mattie cupcakes. Mattie lived on cupcakes when he was in the hospital, and we used them as incentives for him to meet physical therapy goals. Needless to say, it has been a Mattie Miracle tradition now three years in row to bring cupcakes to the check event. I love to leave cupcakes with both the PICU and HEM/ONC units of the hospital. Mattie experienced both PICU and HEM/ONC nurses and without either set, we couldn't have made it on a daily basis. So needless to say, it has been a VERY busy Mattie Miracle event week!!! 

Wednesday, October 2, 2013

Wednesday, October 2, 2013

Tonight's picture was taken in October of 2007. That weekend we took Mattie to Glen Echo Park in Maryland. This was one of his favorite places to go because within the park was a wonderful puppet company. Over the years we must have seen every one of their productions using real marionettes. It was a treat. In so many ways, raising Mattie was like reliving another childhood for us. I suppose that is the beauty of children, they keep us young in mind, body, and spirit.





Quote of the day: There is no exercise better for the heart than reaching down and lifting people up. ~ John Holmes


The Mattie Miracle Cancer Foundation hosted a very successful FIRST EVER Chocolate Therapy Workshop at Georgetown University Hospital today. Last month my friend Heidi introduced me to a friend of hers, her friend happens to be a chocolatier. Robbin studied chocolate making at a renowned school in Belgium, and over lunch in September I learned about Robbin's work and the fact that she is a cancer survivor who thrived on chocolate during her own treatment. Needless to say her personal story and expertise caught my attention. At lunch that day, she gave Heidi and I a box of the chocolates to take home. When we got home, we tasted them, and Heidi and I instantly emailed each other. Her handcrafted chocolates were that INCREDIBLE!

Robbin has conducted chocolate therapy workshops with adult cancer patients but has never worked with children. Today was a first, but she did just beautifully. She is organized and thought the whole event through, which is crucial for young people, and even more important when in a pediatric cancer clinic.

I have to tell you that returning to clinic and to the Hospital are not easy feats. In fact, I know many parents who refuse to go back to where their child was treated and died. It just holds painful memories. So being in clinic today was an interesting experience, especially when I could see Mattie's ceiling tiles which he painted above my head. I spent some time interacting with parents during the workshop (I brought Mattie Miracle bags, brochures, and pens -- most of which were gone by the end of the event). I could tell that many of the parents figured I was just there bringing a fun activity to the kids. They did not suspect that I was a mom who spent many hours in the clinic and who lost a child to cancer. I listened to several parents telling me their story and battle for a while and then through conversation it came out about Mattie. I could tell many of them were visibly moved. One dad had tears in his eyes, because he was amazed that I not only came back, but I was there to help others like his family.

As tonight's quote aptly expresses there is something wonderful about being able to lift people up! I can't think of a better way to do that than through chocolate. That was my hunch, but it was BEAUTIFUL to see this hunch become a reality. The chocolate was a HIT for ALL ages. Children, teens, and parents!!! Honestly there were smiles everywhere. In addition, when I told parents about what Mattie Miracle does for the Hospital they were speechless. Many of them told me they would be lost without Jess, the child life specialist Mattie Miracle has funded for three years in a row, and our free snack cart. Frankly I hear this indirectly from the staff all the time, but to get this direct feedback face to face from parents meant a great deal to me. This is why I do what I do. The beauty about today's event is it gave me the opportunity to do direct service and to interact with families. This is work that I actually love the best, but running a Foundation does not give me the opportunity to do much of this. Instead, I am researching, writing, networking, fundraising and the list goes on! After today's event, I felt somewhat energized, with the direct knowledge that what we do matters.

Here as some examples of the finished chocolate products the kids could make. Chocolate lollipops decorated in any way they wanted using nuts, cranberries, and candy corns.

There were different small tables set up around the clinic. Robbin met with all of the kids and instructed them briefly on the technique of working with real Belgium chocolate. This wasn't Hershey's in a block. This chocolate was melted, the kids had to stir it and mold it into a form. The chocolate then interacts with the air and hardens. In fact as Robbin explained creating with chocolate is an art and a science. There were definitely kids interested in the science of chocolate and were fascinated about the melting and hardening process.

This is a mother daughter team, Jo-Ann and Caroline. I had a wonderful time getting to know this family and in so many ways Caroline is a miracle child. When she came to Georgetown in March, she was given the prognosis of only weeks to live. Now she has no evidence of disease. Remarkable!!! Caroline helped Robbin set up for the event and learned the science of melting chocolate and checking its temperature before it is ready to be used.

I had the opportunity to work one on one with Stacy. I unfortunately did not catch her expression moments before I snapped this photo. What you are missing is Stacy had two thumbs up in the air expressing her love of the chocolate.

Peter was a live wire and was creating chocolate lollipops blending milk and dark chocolates together. In addition, the candy corns represented a volcano and in the middle of the volcano he placed more chocolate, indicative of lava!

After the children created the chocolate products they then got to go to the decorating zone, where they could put their chocolates in bags, with ribbons and other fun things. Robbin provided Halloween sticks, dinosaurs, aprons and hats. Some of the kids got a kick out of decorating their chef hats!

Linda, Mattie's child life specialist, captured this photo for me. So much was going on, that I did not have the opportunity to meet these two cuties. However, while I was working with the kids, I noticed a male teenager patient watching. I could tell he loved chocolate. I told him anyone could participate in the workshop, it wasn't just for children. With that, he left his mom, and joined us at the table with a big SMILE! 

Linda snapped this photo for me too. This cutie was in a treatment room, but still got to participate in the fun of making chocolate.

At the end of the event, I snapped this special threesome making chocolate. The two ladies in the front are Katie and Jess, Child Life Specialists, and the lady on the back right is Katie, an art therapist. I was thrilled to see them taking part in the event after spending two hours helping all the kids.

 

Another highlight of my day was seeing Bridget. Bridget is a young adult and has been battling cancer since she was 15 years old. In fact, while Mattie was in treatment, this is when I met Bridget and her special family. Though Mattie died, Kathy (Bridget's mom) and I remain connected through email. It was an absolute delight to see both of them face to face today. In fact, after the event was over, I went into Bridget's treatment room and chatted with them for an hour. During that time, I watched Bridget get an infusion of medication and also undergo an examination by her physician. I asked if she wanted me to leave either time and she said no. The cute part is when a visiting physician came in, she introduced herself to him, then she introduced her mom to him, and then she turned to me and introduced me as mom #2. Bridget knew Mattie and she knows about the work I do, but ultimately what she was saying is she considers me a mom first and foremost, and a mom who understands cancer. That was about the nicest compliment I have received in a long time. The trust from another child. I can't say enough about Bridget and from my perspective she is amazing and a role model to other childhood cancer patients and survivors. Bridget has basically grown up with cancer and it is hard to not let this disease define you, scare you into submission, and fear the future. I see how Mattie's cancer has impacted me and I can't even imagine how this disease plays with a developing mind.

Tuesday, October 1, 2013

Tuesday, October 1, 2013 -- Mattie died 211 weeks ago today.

Tonight's picture was taken in October of 2007. We took Mattie to Butler's Orchard that weekend to their fall festival. Mattie loved fall festivals and each fall we practically went to one every weekend! Mattie loved the rides, picking out pumpkins, and some even had farm animals to pet. I however was the only one of the three of us who got a kick out of the fall festival foods!


Quote of the day: The best antidote I know for worry is work. The best cure for weariness is the challenge of helping someone who is even more tired. One of the great ironies of life is this: He or she who serves almost always benefits more than he or she who is served. ~ Gordon B. Hinckley


I found tonight's quote and I thought it was absolutely beautiful! I think this maybe the motto for the bereaved..... those who serve always benefit!!! I had another night of no sleep and a raging headache. However, despite that I had a full day of conference calls in the morning followed by non-stop computer work. Not the best plan for a headache. Peter and I have been invited to present at a conference in Dallas, Texas next week. Thanks to technology, we are doing this remotely. I is hard for me to present without being in the same room as those I am presenting to, especially as it relates to sharing a personal story and dialoguing about the Foundation's vision for a psychosocial standard of care. However, I know people do it all the time, so I might as well start some place.

Tomorrow the Foundation hosts its first ever Chocolate Therapy workshop at the Georgetown University Hospital. In September, a friend of mine connected me to Robbin Warner(http://www.writingwithchocolate.com/category/recipes/). 
Robbin is a local chocolatier who studied chocolate making in Belgium. Last week, Robbin and I did a walk through of the Hospital's pediatric clinic for set up purposes, so we should be set to go tomorrow. Children and teens will have the opportunity to learn fun facts about chocolate, do a tasting, create their own tasty treats, and even decorate their bags, aprons, and hats. The children will be working with real chocolate that is melted and then hardens. Most of us do not have access to such chocolate! 

I certainly know Mattie would have disapproved of this workshop, since he HATED chocolate. Everything about it from its smell to its taste. Nonetheless, since childhood cancer is a family affair, and I thrived on chocolate, I decided to try this venue. It is a fact that the most popular item on our free snack cart at the Hospital is CHOCOLATE, so my hunch is this could be a popular workshop. I have a feeling Mattie is most likely laughing down at me tonight, and I can only imagine what he would be saying about tomorrow's workshop. I have no doubt Mattie would have given Robbin a run for her money!

Monday, September 30, 2013

Monday, September 30, 2013

Tonight's picture was taken in October of 2007. Mattie loved fall festivals, riding on hay wagons, and searching for the best pumpkin! As you can see, Mattie picked out three pumpkins he wanted to take home with him from the patch. Frankly I am not sure I ever rode on a hay wagon before, but there were a lot of firsts for me with Mattie. It is not at all surprising that Mattie gravitated to pumpkins. He loved bright colors like orange and red and he also loved all things made out of pumpkin. In fact, prior to having Mattie, I really wasn't a pumpkin fan. Like so many things, Mattie changed my opinion of pumpkin products and now like him, I love them! 


Quote of the day: The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well. ~ Ralph Waldo Emerson

Emerson's quote completely resonates with me! In fact, I really dislike the word HAPPY for the most part. It occasionally comes out of my mouth, but usually I catch myself. The term just doesn't have the same meaning for me now that Mattie is gone from our lives. Today, I spent about eight hours in Arlington, VA at the Red Mango yogurt store. Mattie Miracle worked with the Chris Lantos Foundation to host a successful Smoothie Fest to raise awareness of childhood cancer as well as to raise funds to purchase iPads for children with cancer.

In the summer of this year, I was introduced to a couple who lost their only child to cancer. Their son, Chris battled leukemia for only nine months and lost his battle in June. When their son died, they asked their oncologist to be connected to another family who lost their only child. There are not many of us around, so this is a tall order. But somehow this couple had the where with all to realize that grief could possibly look different for a couple with only one child. They are indeed correct and I am not sure I ever verbalized that until I met them. In any case, through our connection, I learned that before their 12 year old son died, he planned a fundraising event with his music teacher. Chris wanted to host a smoothie fest. Chris loved Red Mango frozen yogurt. This was like Mattie's equivalent of a vanilla shake from Mac Donald's. So Red Mango was a meaningful place to host such an event in Chris' honor.

At times during treatment Mattie could only drink a vanilla shake, and apparently Chris was similar in the sense that he would request a yogurt smoothie from Red Mango. Though Chris is no longer with us, his parents and his teacher made his dream become a reality today. Hundreds of people showed up to have yogurt or a smoothie, they learned more about childhood cancer, and were there to support a worthy cause. Of course for me there were many memorable moments from the event that will always remain with me.

Throughout the day, I met a handful of people who were directly impacted by childhood cancer. Several cried with us, some couldn't talk about their loved one because of the emotion associated with it, but overall, those whose lives were affected by childhood cancer all spoke the same language as us. I remember when Mattie Miracle hosted a 5% sales day at Whole Foods in January of 2012. I was amazed by the number of cancer stories people, complete strangers (store shoppers), shared with me. Cancer has a way of leveling the playing field, and bonds people together in a profound way. Today was no different.

I spent the majority of the day outside the Red Mango store by a table we set up. The table featured information about Chris and Mattie Miracle. At the table we distributed Mattie Miracle brochures, business cards, beads, and encouraged people to sign up for our e-newsletters. At the table, people also made contributions to the Foundation. During a lull in the afternoon, a man approach our table. I could clearly see he was homeless. He asked me what I was doing outside and I told him. He said that he had no money otherwise he would support our cause. Then he walked away after wishing me a good day. I have to admit, I felt badly because I did not handle this interaction well. But unlike most cases in life, I was given a second chance. He came back to our table and when he did, I asked him if he wanted frozen yogurt. I told him I would be happy to have him participate in the day, and he did not have to pay anything. He turned down my offer, but came up to shake my hand and told me how special my offer was to him. I have to say for just that moment in time, I forgot about my cause, and reflected on his situation. I think his face will remain with me for quite some time.

Later in the day, Chris' mom and I went to about 10 local stores and businesses to ask them to display a flyer about the Smoothie Fest. We figured since their stores were close to Red Mango, perhaps some of their customers would visit us after shopping. Many of the stores we spoke with couldn't be nicer and more accommodating. However, two refused to help us. One of which was Barnes and Noble. I honestly couldn't believe they wouldn't take our flyer and I told them I was disappointed in their decision and that I was fortunate that there were other places I could buy books! The other store was Apple. Those who know me, know I am not an Apple fan (yes I'm in the minority!), but when this store refused to even listen to us (two moms who lost a child to cancer), my simple response was..... and this is why I'm a Blackberry user. Of course since I know Blackberry is probably going to go out of business, I am sure this Apple person thought.... who cares! But stores like Barnes and Noble and Apple do catch my attention when they refuse to help even in the smallest way with childhood cancer.

I captured a few photos from the day! This was a poster that Chris' parents created that was displayed right outside the store! Part of me wonders what Chris would have thought about today's event. I have no doubt he would have been proud of his parents. But hosting such an event like this three months after losing your child is terribly difficult. In fact, I told Chris' parents that helping others, raising awareness, and creating a legacy for our children are all very important. But at the end of the day, no matter how hard we work, the people around us are all going home to their children and families and we are going home to an empty home. That may sound depressing or perhaps not helpful advice for me to share, but on the contrary I think sharing such real emotions is key. Because chances are they will feel this way tonight and if it isn't discussed they will think something is wrong with them. Of course nothing is wrong with them, everything is wrong with the situation!

I had the opportunity to interact with Chris' music teacher today, who helped Chris' parents plan and coordinate this event. She is a remarkable, dedicated, and energetic woman who really wants to make a difference and keep the memory of her student alive. This is one of the smoothie fest signs we had out on the street!

The Red Mango store looked very festive today with red balloons everywhere!

Before the store opened up, we took a photo with the owners Betsy and Monty. From left to right are: Betsy, Monty, Ilona (Chris' mom), Lisa (Chris' music teacher), and Vicki.

To many of our Mattie Miracle supporters, thank you for coming by to visit with me today. Your presence meant a lot to me! For an hour or so, Ann came by to lend support for the cause. As my faithful readers know, Ann was our Team Mattie coordinator and is also a Foundation board member.

Pictured here from left to right are Katie, Jess, Linda, and Tim. These are very special people to us at Georgetown University Hospital. Tim, as my faithful readers know, is the Georgetown administrator who is famous for his orange tie campaign the week after the anniversary of Mattie's death. Tim is a big Mattie Miracle supporter. The ladies in this photo are ALL Child Life Specialists. Linda, Mattie's Child Life Specialist, will always hold a special place in our hearts. Jess, the lady in purple, is the professional that Mattie Miracle has funded three years in a row!

I do not know everyone in this photo, but pictured from left to right are: a Chris Lantos Foundation friend, Miki (one of Mattie's outstanding HEM/ONC nurses), Katie (an art therapist), Ilona (Chris' mom), Julia (a HEM/ONC nurse), and a med student at Georgetown.  



Mattie Miracle was glad that we could help our new found friends in cancer. Today's event was the first of its kind that I hosted in which Mattie wasn't the main focus, he wasn't the direct reason we were raising money, and another child was pictured and featured. Mattie Miracle is named after my Mattie and therefore what we do and how we do it always reflects upon our special seven year old. But as Emerson's quote so aptly stated.... the purpose in life is to make a difference, and helping grieving parents honor their child's memory sounds like a pretty great purpose to me.
 

Sunday, September 29, 2013

Sunday, September 29, 2013

Tonight's picture was taken in October of 2007. In fact, it was snapped in the exact same spot as last night's photo. Right outside one of Mattie's favorite restaurants. This was a great spot, because right behind us was a lovely pond filled with koi and turtles.



Quote of the day: It always is harder to be left behind than to be the one to go... ~ Brock Thoene

Peter and I never left our home today. I have been suffering with a massive headache all week. Mind you I do not know what one solitary day looks like without a headache. I have had a daily headache since April 4, 2002, the day Mattie was born. Most of the time, I can work through the pain, or at least I have learned to given the fact that I have had a lot of practice! But this week's pain is intense and the pain can wear me out. It is hard to get motivated to do much when I have such a headache, but nonetheless, I spent a great deal of time in Mattie's room today, as I continued to clean it out. I honestly think the toll of cleaning out Mattie's room is just overwhelming on so many levels. I began by tackling Mattie's drawers. The ironic part about this is I remember picking out this chest of drawers with my parents before Mattie was born. It seems like it were only yesterday.

Though I am donating a large chunk of Mattie's clothes, I am keeping one of his first hats, mittens, and gloves. I remember him wearing these items often.

This is what Mattie's bed and area around it looks like now. However, as we keep cleaning out and changing things around, it won't be looking like this for much longer. Mattie loved hanging things on his walls and we are trying to take photos of his room so we can always remember how it looked when Mattie was with us.

Mattie had an unbelievable collection of clothes and that was thanks to my mom. She always went shopping for him and mailed us care packages from California. It was a saving grace to me because Mattie HATED shopping, and DESPISED the mall and clothing stores. Which is a problem since as a little person, his size was constantly changing and he needed clothes. As I pulled out Mattie's clothes today, I organized things by type (shirts, sweaters, shorts, pants, etc). Though Mattie wore all these clothes, he kept his clothes in excellent condition. So I have no doubt donating these items will be helping many children. In many of Mattie's clothes, I ironed in tags with his name on it. These tags were useful when Mattie was in school, because his teachers would always know what items belonged to him. Before donating these items, I pulled out every single ironed on name tag. It took longer to remove the tags than to iron them in years ago. Somehow taking out the tags seemed very symbolic, symbolic of a good-bye to Mattie. I am not sure why, clothes are clothes, but clothes with Mattie's name in it, seemed much more personal!

While going through Mattie's clothes several shirts just struck me as his favorites. Though this wasn't my initial goal, I decided to reach out to my friend today who designs t-shirt quilts. I would like her to take 20 shirts of Mattie's that meant something to us, and create a Mattie quilt. I have set those aside and have also set aside some other items of Mattie's that I feel must stay with us.

Going through the clothes was hard enough but then we decided to move furniture as well as disassemble our two filing cabinets. Today's workload was intense and now that it is 6pm, we are stopping for the week. There is much more to do but it is hard to believe all that we have accomplished in a few weekends so far. I could never had done this clean out process early on in our grief journey. Cleaning out clothes is just too raw and just too painful. As time moves forward, I have developed more clarity about what is important to have around me and what must be kept. When you lose a child, it is very easy for others to give you feedback and set upon you their own time lines. But that is just it, it wasn't my timeline. I am happy I followed my own instincts and my own feelings about this, because at the end of the day, I am the one who has to do the cleaning out and I am the one who has to live with this decision.