Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 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

Random Shots of Mattie, Family and Friends

June 29, 2013

Saturday, June 29, 2013

Saturday, June 29, 2013
 
Tonight's picture was taken two weeks before Mattie was diagnosed with cancer. It seems hard to believe. As you can see, we brought a bag of bread with us to feed the ducks on Roosevelt Island. This was one of Mattie's favorite things to do when visiting the Island. As July fast approaches it is hard not to feel a sense of sadness. Mattie was diagnosed with cancer on July 23 (2008), two days before my birthday. While other people are sharing with me their happy plans or positive things that are happening for them this coming month, we on the other hand will always have the remembrance of a cancer diagnosis.


Quote of the day: Grief does not change you. It reveals you. ~ John Green


It seems in just one short day since I last posted the blog, so much has happened. Peter and I went to see Anything Goes at the Kennedy Center last night. I know the musical won a 2011 Tony Award and The Washington Post wrote a rave review about the revival featuring Cole Porter music. However, sometimes you just need to see things for yourself to truly get what the hype is all about. Anything Goes is most definitely worth the price of admission, from hearing the orchestra play Cole Porter's music, the wonderful humor which is light, airy, timely, and fun, to the INCREDIBLE dancing. The Post said there were many Busby Berkeley (famous Hollywood movie director and choreographer) type dance scenes in the musical and the newspaper was correct! Just splendid! You leave the Kennedy Center, humming, happier, and feeling 'de-lovely' (sorry I couldn't help the Cole Porter play on words).

Peter and I have also gotten it in our heads that we want to paint our entire living space. That is definitely a large undertaking and I am not sure we will get it done. But this is our latest thought. We even went to pick out colors today, and we have samples taped all over the place. We are both tired of our antique white walls. Peter has encouraged me to think about actual colors, something I have never really done before. We did paint before Mattie was born, but that was 11 years ago. Our walls have seen a lot in a decade. I think this desire for a transformation started after last weekend's conversation about trying to address Mattie's room. Somehow seeing bolder and happier colors does affect my mood, so I am hoping we find the energy for this endeavor. Both Peter and I know how to paint rooms, and once I get it into my mind to do something, it usually does happen.

Later this afternoon, Peter and I met the couple I wrote about earlier this week on the blog. This couple lost their only child to cancer about two weeks ago. We were invited to their house and I never like going empty handed. So with us we brought a cake and a butterfly wind chime. As so many of faithful readers know, butterflies are very meaningful to me. They help me feel connected to Mattie and whenever I see one, I view it as a symbolic greeting from Mattie. It is my hope that when these parents hear the twinkling of this wind chime and see its butterfly twirling in the wind that it reminds them of their beautiful son. There is no gift that we could possibly bring to take their pain away, but to me gifts that help one remember, appreciate, and reflect upon the child lost are key.

Certainly Peter and I have interacted with many parents who are either helping their child battle cancer or whose child is a cancer survivor. We only have connected with a handful of parents who have lost a child to cancer. Each and every one of these individuals, of whom I can count on ONE hand, are special to me. They are special to me because we are all part of the same club, and I assure you this is not only a club NO ONE wants to join but the price of admission to this club is way too high! When you lose a child to cancer, this loss represent a parent's greatest fear and typically when we fear something, the natural human protective reaction is to walk/run away. I have seen many parents both with healthy children and those with children who have cancer, skirt around me. I can make them uncomfortable and uneasy. This is a reality, not just a Vicki reality, and today Peter and I talked openly with this wonderful couple about all of this.

Honestly I am thoroughly impressed with this couple. They had the wherewithal to ask one of the physicians for an introduction to parents who lost a child to cancer. NOT just lost a child, but lost an only child. I know I didn't think this through when Mattie died. Not only could I not reach out to other people initially, but I shut down and I wasn't allowing anyone in at all. No two cancer battles look or sound the same and therefore no two grief battles look or act the same either. Heck, Peter and I have been married for ages and we helped Mattie with cancer, and even how we manage and handle grief looks very different. So therefore it would be impossible to expect another couple who lost a child to cancer to have the same thoughts and feelings as us!!! Naturally we all deal with grief differently and need different things to cope with this horrible reality, but a couple of observations came shinning through to me today.

The first observation I would like to mention is I would guess you would expect when talking with parents who recently lost a child to cancer, that there would be a lot of crying, perhaps hysterics, and great sadness. In fact, I most likely would have thought this too, if I hadn't lost Mattie and had my own personal experiences. However, prior to today's meeting I suspected I wouldn't see crying and hysterics, and I was correct. Why? Because I remember these first few months after Mattie died and for the most part I was numb, going through the motions, and trying to survive. It takes great energy to try to get up in the morning, try to find a reason and purpose for living, and therefore expending energy on tears and hysterics just isn't possible. You have NOTHING else to give at that point. So from an OUTSIDER'S perspective the lack of tears may seem odd, but to me, it not only isn't but it is beyond understandable, natural, and is our body and mind's ultimate way of coping.

As grief unfolds, then the sadness, break downs, and crying occurs. Keep in mind that a parent who lost a child to cancer has most likely been performing under the most heroic of circumstances. Circumstances which lead to little to no sleep, living in a hospital 24 by 7, and assisting with pain management and the death process. Working under such toxic conditions, almost flips an adrenaline switch inside one's body. The body and mind under these circumstances are trained to constantly mobilize and be on hyper alert. Not unlike a soldier! This produces from my perspective a very cerebral kind of thinking and response to each issue and crisis. One learns to bottle up emotions and feelings because they serve NO practical function. However, once the crisis (or death) is over, slowly we begin to feel and process things. I assure you from my perspective this is the MOST horrific part of grief. It is like becoming flooded with the reality of the situation and there are no life preservers. As I joke privately all the time........................ I long for the numb days of grief!!!!!

The second observation is that no matter who you are, whenever you lose a loved one, rest assured you will be hearing platitudes!!! As my faithful readers know, I HATE PLATITUDES. Time doesn't heal all wounds and YES INDEED God can give you more than you can handle!!! So if compelled to comfort a bereaved parent please beware!!! Remove the platitudes and make a note..... never state that the child is in a better place. HONESTLY THINK TWICE! It is better you say NOTHING. Because there is no better place for a child to be than with his/her parents.
 
The third observation I have is when a parent loses a child to cancer, two things happen. One friends and family feel the need to give you books on grief and two they also tell you that you can always have more children or adopt children. I am not sure which issue I want to tackle first. Both are highly laden with judgment! I realize stepping back from these issues people recommend these two things because they are trying to give us hope and to connect us with the living world. But actually these two factors can accomplish quite the opposite. I have quite the library of grief books and I can say I related not even to one of them especially initially. In the beginning of grief it is hard enough to process your own loss much less read about someone else's or worse hear an academic or research timeline about what to expect. FORGET IT! There are no time lines, each person manages grief differently, and no academic exercise can live this pain for you. If you know this tip coming into grief, this will actually save you many steps of wondering what is wrong with you and questioning whether you are going crazy! As for the second issue, encouraging a bereaved parent to have another child or to adopt is a very personal matter. If a parent brings it up with you, then discuss it, but inserting one's own wishes and judgment into the situation can produce more harm than good. For the bereaved parent this almost seems sacrilegious that you are raising such a topic. It makes us feel guilty for having thoughts toward the future and it feels deeply disrespectful toward the memory of the child we lost.

I have many more observations from today's interaction, but the bottom line is that having this connection is mutually beneficial. We may not be dealing with grief exactly the same way, but we do have so many commonalities and having lost an only child enables us to acknowledge the profound loss of our parenting role and our hopes for the future.

This evening I headed to visit my friend Mary who lives in an assisted living facility. Mary's daughter is out of town this weekend and therefore when I am around, I make it a priority to visit Mary and assist her in the evening. Which are her more difficult hours. When I arrived, Mary was in a state, and clearly looking for me. As I was getting Mary situated and comfortable, I told her about the couple I had just met. After all, Mary also lost a son to cancer, and though she is mute and unable to respond, I know she was listening and knows all too well the pain of losing a child. This is a pain that you carry with you no matter your age or where you live.

June 28, 2013

Friday, June 28, 2013

Friday, June 28, 2013

Tonight's picture was taken in June of 2008, a month before Mattie was diagnosed with cancer. We took Mattie to Roosevelt Island to walk around and in usual Mattie fashion he acquired something along our journey. Mattie loved to collect sticks and branches and bring them home with us. For the longest time we had an amazing stick and branch collection in our common space. In fact it looked like a sculpture area composed of found wood.







Quote of the day: ...You can go your whole life collecting days, and none will outweigh the one you wish you had back. ~ Mitch Albom


Today I was headed to an appointment in Foggy Bottom, DC. While walking, a young teenager approached me. He was very polite and called me Ma'am. So I immediately deduced he wasn't from around here! I was correct, he is a tourist and wanted to know where the plaque commemorating the 1972 break in of the Democratic National Committee headquarters was located. He told me he is a history buff and asked me for specifics about where this bugging actually took place. I am not sure how old this fellow thought I was, but I HAVE NO IDEA where specifically this took place. I have lived in Foggy Bottom for almost two decades and I can tell you I did not know a plaque even existed and NO ONE has ever asked me about it!!! So naturally out of curiosity, when I got home today I had to Google this plaque to figure this out for myself! Why this young fellow did not do this himself, is beyond me!!! Any case if this kind of trivia interests you, the answer to his question is the plaque is located at 2600 Virginia Avenue on the 6th floor of the Watergate Office Building. Why the 6th floor? Because that is where the DNC headquarters were located in 1972. It takes a tourist for me to learn a piece of trivia about my neighborhood. Isn't that always the way!?

After my appointment, I had the opportunity to run into Peter's barber. A lovely man born and raised in Italy. This man feels sympatico (a mental connection) with me because he grew up in the same region of Italy that my father's family is from! Every time he sees me, he asks me about my dad! The irony is, Peter sees his barber on a regular basis, and Peter did not know his barber is a caregiver. This was something he shared with me today. I have no idea why he told me, all I can say is since I was in grade school people have told me their concerns and problems. Needless to say, you never really know what burdens people are carrying with them, unless you scratch the surface. Caregiving for an older adult is something I know a great deal about both from a professional and personal standpoint. So I understood his fears, concerns, and also what his day to day worries must be like. I remember when I was growing up my grandmother used to say, "when you have your health, you have everything." As a kid, I thought...... how odd, is she for real?! Clearly there have to be better gifts than just your health!!! The naivety of being a child. Now that I am an adult, I understand this wise sentiment all too well.

This evening, Peter and I are going to see the musical revival of Anything Goes. This will be our third Friday going to hear live music. It is something both of us enjoy and it does make us temporarily forget our troubles!
 

June 27, 2013

Thursday, June 27, 2013

Thursday, June 27, 2013


Tonight's picture was taken in June of 2003. I personally think this was a classic Mattie moment that I captured. As you can see, Peter was lying down next to Mattie. Still playing with him and engaging him, but trying to muster more energy and recharge. Mattie was literally like the Energizer Bunny. He was ALWAYS ON!!! He rarely napped and sleeping at night wasn't consistent. Mattie could be awake, play, and engage you 24 hours a day, if you lasted that long.





Quote of the day: It scares me how hard it is to remember life before you. I can't even make the comparisons anymore, because my memories of that time have all the depth of a photograph. It seems foolish to play games of better and worse. It's simply a matter of is and is no longer. ~  David Levithan


I ventured back and forth from Washington, DC, to Alexandria, VA, at least three times today. My biggest joke is that I feel the car goes to Alexandria on auto-pilot. I started this back and forth journey when Mattie entered preschool and now eight years later, I am still at it! I went to zumba class today and my friend Heidi surprised me with a gift of tea. There is something lovely about unexpected gifts. An unexpected gift to me is special, it is given just because. There is no event to trigger it, no obligation, just a friendly reminder that your presence means something to someone else.

After class I headed back to DC to pick Peter up at work. I then drove both of us back to Alexandria to have lunch with one of our newest Foundation supporters, the owner of Rock of Ages Music. Our friend Tina introduced us to JP in the spring. JP coordinated several of his student bands to perform at this year's Walk. This new addition to our Walk was well received, so Peter and I wanted to follow up with JP, get his feedback about the event, and find ways for us to continue to work together. I personally find every interaction I have with JP very inspiring, he has so much energy, enthusiasm, and creativity of ideas! JP did not know Mattie and he is beginning to understand what our Foundation does, yet he is very sensitive about not diluting the purpose of our Walks! This statement came from him, not from me, and after hearing it, I told JP that his comments were very sensitive and insightful. It is a very special feeling to be in the presence of someone who has a vision and the vision includes you!

I then drove Peter back to work, just to turn around for the third time and drive back to Alexandria from DC. This time I headed to see my friend Mary who lives in an assisted living facility. Mary was getting her hair done today and traditionally on these days I become part of the process. I met Mary's new hairdresser once before. Eight weeks ago to be exact. We started talking and I got to know about her life. So today when we met, we picked up right where we left off. One of the skills I happen to have is a great memory. I have a mind like a steel trap and it is like I have a mental file of people in my head. If you tell me a story, I usually remember it and can retrieve this information months later. Any case, Mary's hairdresser was happy to see me and thanked me for coming today. In fact, she ran to her car to share with us a loaf of cinnamon bread she baked this morning. Mary, like me, enjoys to eat. So this bread with a special treat for both of us. I then stayed and helped Mary with her dinner and got her ready for bed. With that in her mute state, Mary blurred out.... "you are too good to me." My response to Mary always is.... "you were a caregiver all your life, caring for so many people, so now it is your turn to get cared for." That always gets a Mary smile!
 

June 26, 2013

Thursday, June 26, 2013

Thursday, June 26, 2013


Tonight's picture was taken in June of 2003. We were at a park in Great Falls, VA. Mattie was one year old and as you can see he had his first encounter with a Canadian Goose. I am not sure who was more intrigued by the other, Mattie by the goose, or the goose by Mattie. Either case, Mattie loved animals of all kinds and thanks to our cat Patches, Mattie learned how to approach an animal, how to respect their space, and how to interact with them.






Quote of the day: No person was ever honored for what he received. Honor has been the reward for what he gave. ~ Calvin Coolidge


It was a warm day in Washington, DC today! I like warm, but it was even on the hot side for me with the humidity. Nonetheless, my friend Heidi and I sat outside together and had lunch. I personally love the heat and humidity, it makes me feel good, and I was happy to see Heidi shared this feeling. To me there is something special about eating outside. I love the fresh air, people watching, and dog watching as well. In fact, while having lunch, a woman and her dog passed us by and we were both introduced to Sadie (the dog). One of the reasons I like this particular restaurant that we met at is that it has a community feel and it sits on a tree lined street. Something that I really do not get much of when in DC.

Heidi and I talked about a whole bunch of things this afternoon and I even  reflected with her upon the week leading up to Mattie's death. I am reflecting on this time in our lives since I was just introduced to a mom this week who lost her only child to cancer two weeks ago. In order to understand where this mom is coming from, I really do need to think about what my first few weeks looked like after Mattie died. One thing though that stands out to me from reading this other mom's blog and from my own experience is that we were all fighting for our child's life up until the very end. I honestly think we both thought we had more time. So the question is why is that? As a mom you do not want to believe your child is dying, it is a reality too horrific to state much less accept, but I think it is even worse when the medical staff around you do not explain the reality of the picture in front of you.

I still remember one of Mattie's doctors talking to me about the drainage tube that was surgically inserted into Mattie's abdomen to drain fluid building up in his body. Somehow I thought this tube would solve all our imminent problems and we would proceed with the next course of treatment. It never dawned on me that Mattie was dying. It did not dawn on me because Mattie's doctors did not tell me what was going on, instead it was Mattie's nurses who confronted me and told me the truth. Mattie developed Ascites, which is an accumulation of fluid in the peritoneal cavity, this can happen with metastatic cancer and really when the end is near. But how would I know that!???

Medical doctors are healers first and foremost and therefore they DO whatever is medically possible to prolong life in many cases. It would be interesting to hear the internal dialogue of a medical doctor who helps a family with a dying  child. I have to believe doctors know, maybe not when but, if a child is dying! So what prevents this conversation with the family? Mind you I am NOT saying all medical doctors are ill equipped to have such a dialogue, but I would say a MAJORITY indeed are!!! Do they feel that a child dying is a poor reflection on the type of care they provided? Do they feel they failed the family and the child? Or are they simply HUMAN and therefore were as disgusted and perplexed that Mattie's young life was being consumed by cancer as I was? There are a lot of what ifs in my mind. 

After Mattie died, I remember reading that one of the roles of a oncologist is to provide HOPE. Yet this hope always has to be tempered with reality. In fact, the nature of the HOPE changes with time. In Mattie's case (and I am simplifying the example, since hope changed almost monthly in Mattie's care!!!), doctors in the beginning may have given us hope that the surgeries and chemotherapies would remove and shrink his tumors, however, once we learned that Mattie's illness was terminal, the hope no longer focused on a cure but it evolved to having hope that Mattie would die with dignity and without horrific pain (unfortunately that didn't happen for Mattie either!!!).   

Why am I on this diatribe tonight? I guess as a parent who lost my only child, I reflect back on the last few weeks of Mattie's life. At the time it did not dawn on me to have a dialogue with Mattie about his wishes and desires for his legacy. In fact I did not even know about legacy building, until I recently attended a legacy lecture. Some hospitals have social workers who work with the dying child to create a legacy that the child can leave behind (letters, a picture book, reflections from the child to the parent, in the child's own words). Yes I maybe creating a legacy for Mattie now, but I have NO idea what his wishes were, how he wanted to be remembered and so forth. Personally I never thought about any of this while in the throws of treatment and while Mattie was dying. I did not think about it until I attended this palliative care lecture series and at the end of the session I felt deeply saddened as if I did something wrong, since I did not help to give Mattie a voice in the end and into the future.

So what's the moral of the story? I honestly think that avoiding discussion about the pending death of a child is not beneficial in the long run. I am not saying that it is easy to confront a parent in the hospital, but perhaps it would have given Peter and me time to process Mattie's death with him, and to begin the grief process. Instead, after Mattie died, I was so traumatized from Mattie's death that it took me over a year to truly begin the lifetime grieving process. There are no right or wrong answers, dealing with the death of a child is different for every family. However yesterday while talking with the psycho-oncologists working on the psychosocial standards, the issues surrounding bereavement care were discussed. It was refreshing to hear that these professionals immediately got what I was saying. For so many parents once their child dies, that is it! That is the end of supportive services from the hospital. Sure you may get a card on anniversaries and be invited to a once a year remembrance ceremony in the hospital's chapel, but SO much more support is needed. This is passive support, when active support is truly necessary.  
 

June 25, 2013

Tuesday, June 25, 2013

Tuesday, June 25, 2013 -- Mattie died 198 weeks ago today.

Tonight's picture was taken in June of 2003. Mattie was one year old and as you can see here, was traveling around by his favorite method. In a backpack on Peter's back! That particular day we took Mattie to Great Falls to walk the trail and to see the water. Mattie loved it, he loved the freedom of being up high and to have his legs dangling in the air, but check out that smile!!!! Guess who he was smiling at?!!!


Quote of the day: When you're struggling with something, look at all the people around you and realize that every single person you see is struggling with something, and to them, it's just as hard as what you're going through. ~ Nicholas Sparks


The highlight of my day today was going to zumba class. To me this is a great way to start the day and to get the body and brain moving. I joke with Jenny, my teacher, all the time. She needs to make house calls. I like her class so much that I drive from DC to Alexandria to attend it. After class I returned home and worked the entire day on Foundation items.

I had a conference call today with one of our psychosocial standards working groups. As a reminder four working groups were created as a result of the think tank the Mattie Miracle Cancer foundation funded and hosted in Huntington Beach, CA, in February. I have to tell you these are very diligent psycho-oncology professionals. I serve on two different work groups and each group has MONTHLY calls. Mind you these professionals are not getting paid or compensated in any way for the research, time, or surveys of fellow practitioners they are performing. When you sit back and think about this, one has to say WOW! I do not know many people self motivated these days and compelled to help out of the goodness of their hearts, especially when they already have such full schedules and work loads. But this group of people truly is an eye opener to me and I feel quite certain their patients and families are lucky to have them on their cases. This group realizes that I am working along side them on this psychosocial standards process, but in addition to that, they also listen to my concerns and feelings about some of the things lacking in Mattie's care or especially in our bereavement care (or should I say LACK there of care!!!).

Some of these psychologists I have had the pleasure of meeting in Huntington Beach in February. Several of them left a lasting impression on me. Especially two of them which referred to Peter and I as "the real deal." Which is a compliment and refers to the fact that we aren't all talk, but we are a Foundation that talks and acts. In some cases actions do speak louder than words, and as co-founders of the Foundation, I have learned that my role is to remain focused and not get swayed by other organizations and their priorities. The priorities are very clear to me and when in doubt, I only need to reflect upon Mattie and our battle together for some perspective and clarity!!!

June 24, 2013

Monday, June 24, 2013

Monday, June 24, 2013

Tonight's picture was taken in June of 2004. Mattie was two years old and this photo reminded me of two things! The first thing was that I was sitting next to Mattie in the back seat. In fact, whenever Peter was driving, Mattie wanted me right next to him. It wasn't until Mattie turned four years old, that I was able to sit in the passenger seat next to Peter. But we had to really work on that and prepare Mattie months ahead of time for this front seat transition. Back then this whole notion seemed like a big deal, now in retrospect, where I sat in the car was one of the easier things we dealt with. The second thing this photo reminded me of was Mattie's sippy cup! Linus (from the Cartoon, Peanuts) had his blanket, Mattie had his sippy cup. Mattie was never without his cup, it came everywhere with us and the only liquid of choice was MILK. No water or juice!!! This wasn't my decision but Mattie's!!! One would have thought with the amount of milk Mattie consumed that he would have had the strongest bones around. Rather ironic when you think about it that Mattie developed bone cancer.

Quote of the day: You don't ask people with knives in their stomachs what would make them happy; happiness is no longer the point. It's all about survival; it's all about whether you pull the knife out and bleed to death or keep it in... ~  Nick Hornby

I think tonight's quote is actually very poignant and could really be describing someone who is dealing with the loss of a child. Though I do not have a knife literally in my stomach, figuratively the analogy is spot on. Each day, I have to decide, should I bleed out or keep it in (knife/grief) and try to move along with my day. I really believe this analogy applies to parents throughout their grief continuum. Certainly grief may change how it looks and feels over time, but it is always ever present and you would be amazed how it can be triggered out of the blue.

I received a call today from one of Mattie's oncologists. She wanted to know whether it would be okay if she had one of her patient's parents contact me. You see these parents just lost their only child in the past week to cancer. Something I know all too well about. In fact, Peter and I know of only one other couple who lost an only child to cancer. Unfortunately I am sure there are many only child parents who lose a child to cancer all over the world, but in my Foundation work so far, I haven't met them. Dealing with the loss of an only child, like dealing with the loss of any child is complex and heart wrenching. However, there are slightly different dynamics when you lose an only child. In one day, your role instantly changes from being a parent to NOT being a parent at all. Your future as you imagined it to be is forever altered and how you define and interact with the world are also irrevocably changed. Gone are school pick ups, play dates, meetings with teachers, school fundraisers, social events and gathering with other parents, and in essence when your child dies, so does your social network.

When Mattie's doctor told me about this couple, I naturally felt compelled to talk with them and try to be supportive. But given what I know now, I pondered today, WHAT CAN I OFFER THESE PEOPLE?!!! There is no magic fix, time doesn't heal the grief, people in our lives do not always understand, and yes our lives will never be the same! These are not happy things to report out. Yet I know there is great comfort in knowing that someone else understands me, shares my same thoughts and feelings, and allows me to see that I am not alone. So these are the gifts that grieving parents can give each other!!! There is no check list of "to dos," no book one can read, and no miraculous therapist who can make grief go away. It is a lifetime process, with many highs and lows!

I also think we are a society that talks a lot about HAPPINESS! This is not a word I personally would use with a parent who lost a child to cancer. Once you lose a child, feeling happy is laden with guilt. Certainly in the initial months and even the first year after a child dies, the focus should never be on happiness but on surviving. After surviving the first year, I hate to say it but other challenges arise. Mainly because our society feels that life should go back to normal after a year and that one's period of grief should be subsiding. Which is actually hysterical to me! As if grief is a light switch that can be turned off as easily as it was turned on. It DOESN'T work that way at all! Sure the first holidays without your child are hard, but guess what? ALL subsequent ones are hard too.
Each year after a child's death brings about different problems, different observations, and different realities. Realities that perhaps weren't as clear or understood the previous year. 

In many ways, I do think that parents of only children bond together. We understand each other and our decisions and choices. This was certainly true when Mattie was alive and healthy. I will never forget when Mattie was in preschool, a group of moms of only children naturally formed. There were four of us, a large number which was actually unusual, but our boys all liked playing with each other and therefore we gravitated to one another. So taking this observation one step further, I do think Peter and I have insights that may help this newly grieving family. But it took me several hours to process this because my first reaction was.................... What can I possibly say to these parents and how on earth can I give them hope, when I am still looking for it myself!!!!??????????
 

June 23, 2013

Sunday, June 23, 2013

Sunday, June 23, 2013


Tonight's picture was taken in June of 2004. Mattie was two years old and from my perspective, whimsical! Mattie was playing with Mr. Potato Head and instead of putting the glasses on the Potato, he decided to wear them himself. Upside down no less! Mattie was always full of surprises and kept us on our toes. He forced you to think outside the box, and when you didn't he helped you rise to the challenge.







Quote of the day: You can't be brave if you've only had wonderful things happen to you. ~ Mary Tyler Moore


MATTIE MOON WAS SHINING BRIGHT LAST NIGHT RIGHT OUTSIDE OUR DECK DOOR!

It is funny, when Mattie entered Resurrection Children's Center, his preschool, the symbol he was assigned was the moon. Each child was given a symbol in school, a symbol that started with the letter of your child's first name. So throughout preschool, Mattie was nicknamed "Mattie Moon." It seems rather ironic, now eight years later, we still refer to our Mattie Moon. Now this cute nickname has even greater significance. So many of our Mattie supporters also look up at the moon, as I do, and reflect upon Mattie. In preschool, Mattie Moon referred to our actual boy, now "Mattie Moon" refers to the brightly shining orb in the sky that figuratively represents the spirit of our dear Mattie. In so many ways the moon has been given a new name, it isn't just the "moon," it has been reclassified as "Mattie Moon."

The moon over the last two days has been extraordinary. In fact my friend Charlie sent me an email on Friday letting me know that a super moon would be in the night sky on Saturday/Sunday. Super moon refers to a full moon that is closest to the Earth in its monthly orbit. Although Super Moons happen every year, they are more dramatic because they are 14 percent larger and 30 percent brighter than when the moon is furthest from the Earth. My friend Tanja text messaged me last night too and asked if I saw the moon! She said it was glorious and made her think of Mattie. In fact, I would bet that many of my readers are now conditioned to look at the moon, and think.... oh yes there's a Mattie Moon!!!!

Peter went outside last night and snapped all sorts of Mattie Moon photos. Between our buildings were these incredible clouds floating by and they were illuminated about this very special moon.






In the midst of moon shots, Peter also captured our deck at night. All these plantings may not look out of the ordinary, but if you could see what surrounds us, you would quickly conclude that we most definitely have added a lot of greenery to our concrete world. Green which is appreciated by birds, butterflies, and of course people. It was quite special for me to see our deck illuminated through this photo/moon.

Today was one of those wonderfully grey and rainy DC days. After a glorious sunny day yesterday, I was contemplating going out again today. However, the rain changed my mind for me. Instead I decided to do more Foundation work and just stay home. That of course doesn't help my mood, but at least I can say I got a couple of important things done. Peter and I had a more serious conversation this weekend about what to do with Mattie's room. This is a hard conversation to have because at the moment everything is how Mattie left it. Even the notion of touching it and transforming it does bring about guilt, sadness, and a whole range of emotions. Yet a couple of nights ago, I had a dream or vision about how the room was transformed and I suppose this got me thinking. The room was transformed into something usable but also captured the essence of Mattie. So it gives me something to think and reflect upon.