The Mattie Miracle Cancer Foundation celebrates its second anniversary!
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: http://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!
November 14, 2009
Tonight's picture features Mattie with our cat, Patches. Mattie loved Patches. However, they had a rocky start together, but I have no doubt they learned a lot from each other. As a toddler, Mattie would chase and pull Patches tail. He had moments where he was down right mean to her. Patches however, was forever patient, never tried to scratch Mattie or even hiss at him, despite the treatment she received. She just put up with it. It took many, many months to teach Mattie how to care for a cat, the importance of being nurturing and gentle, and how to respect an animal friend. Not every cat would have dealt with such toddler behavior so well, which is why I have great patience for Patches now in her own time of need. She is quite sick, needs care, and a lot of medical attention. I have noticed that she is looking around the house for Mattie, smells his things, and I found her sitting in his room last night. If it is possible for a cat to look perplexed, then I would say Patches is perplexed by the lack of Mattie's presence. I can relate, so we are in good company with each other.
Poem of the day: I Loved You So by Diana Whitton
I think of you and start to cry,
It breaks my heart that you had to die.
Your final days were filled with pain,
But never once did you complain.
I miss you so with all my heart,
But I know we'll never be apart.
I'll always have memories of you and me,
With lots of pictures of you to see.
Your Angel came down and took you away,
Even though our family wanted you to stay.
Your pain is gone...it is no more,
It's time to spread your wings to soar.
I know it was your time to go,
But, always remember...I loved you so.
Today was another tough day, in what seems like a whole line of other tough days we have had, and will continue to have. I think I associate weekends with family time. After all on Saturdays and Sundays, our main focus was usually Mattie. With his absence, the weekend becomes a daunting abyss to me. In addition to the lack of structure, I find that my energy level is just very low. It is hard to imagine that just months ago, I was up at all hours of the day and night. I slept for maybe three hours each day, and yet functioned, and functioned well as I cared for Mattie. There is a big difference from where I was then to where I am now. Currently I tire easily, I can't really do many activities without physically and emotionally being exhausted. I realize these are all the by-products of months of intense stress and of course grief. But despite understanding the reasoning for the symptoms, it is still a feeling that seems not only uncomfortable to me, but also a feeling and fear that I will never pull out of this state.
Peter and I went to Michael's (Ann's son) Lego League competition today. I had never heard of such a competition until Ann introduced me to it this week. It was fascinating today to be in a room filled with a bunch of children who were equally excited about Legos as Mattie was. This event would have been right up Mattie's alley. In fact, I could picture him there today. There wasn't anything in particular about today's competition that upset me per se. Nonetheless, as I was there I could feel myself feeling more and more uneasy and shutting down. As I always try to find reasons for my feelings, there wasn't anything I could easily pinpoint. Other than I felt simply and utterly depressed. Mainly because I can't relate to the real world anymore, I can't appreciate the fun and activities others participate in anymore, and I miss what my life used to look like. I guess I also know that I will never be able to go back, and I so miss my former ignorance and innocence which existed prior to the devastation left by cancer. My head was spinning with emotions today, and Peter sensed that we had to leave early before the Lego competition was over, because I wasn't talking. Never a good sign for me, because typically I have something to say about most things. In fact, I did not say anything through the entire ride home. It would be easy to say that I should just avoid these kinds of events. But in all reality, it doesn't take an event for me to feel this way. This feeling can arise anywhere, at any time, at any place.
I spent the rest of the afternoon in bed today. Between my mood and fighting off a cold, this seemed like the best place for me. This evening, Peter and I met up with Alison (our team Mattie fund coordinator and our director of communications), her husband Kyle, Ann, and Dr. Bob. Alison treated Peter to a very lovely and generous dinner for his birthday. I think Peter felt very special tonight, and truly enjoyed the opportunity to spend this time with friends who have been with us intensely for the past year. Peter and I consider ourselves very fortunate to have such good friends who continue to support us and look out for us emotionally. I assure you, they have their work cut out for them.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I think what you said in your blog is so important; when you believe that a doctor has an incorrect diagnosis or you have additional information it is critical that you speak up. If the doctor is secure in themselves and their abilities, they will welcome your input as a partner in discovering the cause of the problem and the correct treatment. If not, it is time to find a new physician. I am so glad the doctor you saw yesterday was someone who like Dr Snyder seems to understand that medicine is an art of caring for the whole person. I am grateful that you and Peter are bridging the "pain divide"caused by Mattie's death; it is difficult to talk about grief with a spouse especially if you grieve differently or are in different "places" in the process but it is so critical to one's marriage to keep those lines of communication open and used! For today remember you are stronger together than apart."
November 13, 2009
Tonight's picture was taken on November 13, 2008. Mattie, with the help of Jenny, Jessie, and Linda, created a wonderful birthday surprise for Peter in the PICU. The surprise was filled with amazing cupcakes from the Georgetown Cupcake Company, balloons, hand crafted cards, and the special gift to Peter was that Mattie created a model magic birthday cake for him. The cake included model magic candles and Mattie painted the entire cake in festive colors. Peter has this artistic cake still sitting on his bureau, and I couldn't help but admire it this morning, and pause. I paused because it is hard to believe that Mattie was with us two months ago. As Denise, Mattie's social worker stated, this year is filled with many "firsts" for us. She is 100% correct. Every aspect in our lives now is challenging, because we are doing it as a "first," or in essence the first time without Mattie.
Poem of the day: When Life Gets So Hard by M. Garren
I wanted to find some words on a card
That would help to get through it when life gets so hard.
It seems you can't bear it-perhaps can't go on.
When deep in the heart there's no trace of a song.
Some words that would comfort-when late in the night
The trials return and you're too tired to fight.
Or the tears flow so often it seems you'll run dry.
And life gets so tough that you just want to die.
Or at least go and hide-where you're safe from all pain.
Someplace you can rest until you find joy again.
What are the words you so need to hear-
That will help and will heal and will remove all the fear-
That builds up inside until you think you'll explode-
What are the words that will lighten the load?
If only I knew the right words to say
To encourage and Bless you or comfort some way.
I know not the words but this I can do
I shall offer up Prayers to the Father for you.
Today was an absolute whirlwind. I had a doctor's appointment at one of the larger hospitals in Washington, DC. Mind you I am used to smaller hospitals, and get directionally challenged in larger spaces. In any case, I was happy I got to the doctor's office on time without getting lost. However, when I got there, I learned that the doctor wasn't in that office location today, she was in a different tower in the complex. I understand these things happen, but when I asked the office staff person for directions on how to get to this different location, she just looked at me. I knew I spoke clearly, I knew what I asked her made sense, but I was very confused by the dumb founded and annoyed look I received in return. So I proceeded to tell her that I was not familiar with her hospital, and would like her to just give me some basic directions. By this point I thoroughly annoyed her and she started to shake her head back and forth and talk in an attitudinal tone. I was in no mood for this behavior today, so I gave her a piece of my mind, and the people sitting in the waiting room were smiling at me because it became clear that they had their own issues with this woman. I got the information I needed from her, but I told her that it was a shame that answering a patient question, and helping someone was too taxing for her today and most likely in general.
When I got to the next office location, it was like a night a day difference. Everyone in this office was simply delightful, patient, and couldn't do enough for you. It was health care extremes at its finest! The doctor spent an hour with me. Almost unheard of in the medical industry. She spoke to me about Mattie and a whole host of other things. One thing that we concluded today after talking and her examination was that I was misdiagnosed and labelled with a physical condition years ago that I most likely don't have. What upsets me greatly though is the medical treatments I received in the past to supposedly correct my condition. These treatments were highly, highly painful, and as I told the doctor today really barbaric. She actually agreed! I suspected the initial specialist I saw was incompetent, which is why I left his practice years ago. Why am I telling you this story? Because I guess I feel as if it is important to accept that medical doctors MUST be challenged when you assess something about your health or treatment is not right. It isn't easy to always do this, but no one can advocate for you better than you. Good doctors respect being challenged and actually look at your ability to do this as a favor to them. Because in essence by speaking up you are reporting concerns, giving feedback, and helping with the assessment process. I could see that my verbal nature was not a problem for the doctor I met today. We started even talking about the grief books I was reading, along with the necklace Mattie made for me around my neck. She noticed it and commented on it, I did not bring it up. She did say that Mattie's death makes no sense, but that if his death lands up inspiring me to do something about Osteosarcoma and helping others, then she thought that was a very touching tribute to Mattie's life.
This afternoon, I went to our vet and picked up Patches, our calico cat. Patches has been boarded there for about a year now. Patches is a very sick cat and has a thyroid problem, that was not correctable through the radio isotope procedure she received. It was my hope that this procedure would help her, but not unlike the rest of our life, Patches fell in the minority (2%), where the treatment has no effect. Peter is very close to Patches, and I thought this would be a nice birthday present for them to have this reunion with each other. Naturally I love Patches too, but I am simply the caregiver in the relationship and she treats me as such, Peter is her buddy. When Peter walked in the door tonight, Patches gave him a big welcome home. She is currently sitting with him on the couch, while I am writing tonight's posting!
Peter and I went out to dinner tonight, and talked about a lot of different things. We have always been the best of friends, and fortunately Peter is used to my highs and lows throughout the years. But losing Mattie is so devastating to both of us, that at times, the loss can feel overwhelming. We are working through these feelings together, which though hard is vital.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "None of us really "know" what happens when we die but most of certainly hope there is some opportunity to be with our loved ones after this life. Even were there some guarantee, I don't think it would lessen your grief, you are a mom, Mattie's Mom and you want him here where you can love him, see him, hold him and watch him grow. That's what we all wanted for you, but none of us had the ability to make that happen. All we can do is support you through your grief while you and Peter try to find the new pattern in your lives and reconstruct the other pieces that bind you together in love. For today, I hope you and Peter are able to find at least one of those links that binds you together in love."
The second message is from Mattie's social worker at Georgetown. Denise writes to us periodically, and I find her words and insights extremely helpful and comforting. Denise wrote, "Dear Peter and Vicki, I have just been catching up with the blog as I have been on medical leave and did not have the opportunity to read it for a few weeks. I first want to say that I thought Mattie's Memorial Service was beautiful and a true testament of who Mattie was as a person and what he meant to so many people. Each speaker's presentation created a continuous thread of the fabric of Mattie's life. I found it particularly poignant because the speakers represented different parts of Mattie's life and many did not even know one another, yet there was commonality in their sentiments. It is my hope that you received some comfort in knowing how much Mattie was loved and how special he was to so many people. Grief is a very individualized process, each of us must go through it in our own way and in our own time and on our own terms. We may be surrounded by supportive, caring, loving people, yet we can often feel alone and as if no one can understand how we really feel. On some level that is true, because "our experience" is "our experience". I say that to say, everything you are feeling right now is normal. Please be patient with yourselves and allow yourselves to feel what you feel, anger, resentment, heartache, pain, suffering….all the hard emotions that no one wants to talk about because it makes us uncomfortable. Right now your experience may seem senseless and and it may never make any sense, but in time you will figure out how it fits into your life… into your reality. You will define what role you want this experience to play. You will not go back to life before Mattie's illness that part of your life has come and gone. You have been transformed by your experience of the past 13 months and you will create a new life on the other side of grief that incorporates that experience. Grief has a beginning but it's end is questionable. It is something that can be triggered years later, by a smell, a date, a place or someone who reminds you of your loved one. It can take you back to that place of pain and sorrow, but it will not be necessarily as strong and powerful as what you are experiencing at this moment in time, because prayerfully, healing will have taken place. Healing does comes. Second by second, minute by minute, hour by hour. It may not feel like it, but it does happen in small increments that we are not even aware of. Mattie is part of who you are, he will be with you forever. You will figure out how you want to incorporate his memory in your ongoing life and for each of you that may be different. I am thinking about you as the holidays approach and what the beginning of life's "first" without Mattie's physical presence may mean to you. You might want to think beforehand how you want to incorporate Mattie's memory into your traditions or whether you want to create new ones before the holidays arrive so that you aren't even more overwhelmed by your grief as you begin to approach the"first." Even though you are going through tremendously hard times, I can see that you are living with meaning and purpose, as you assist and support Ann and her family and as you create the foundation to honor Mattie and find a cure for osteosarcoma. HOPE has been your mantra during these past 13 months and it is my hope that you will continue to allow it to be your mantra as you move through your grief process. HOPE for a life reflective of the beautiful spirit and meaningful life that you gave to Mattie. The two of you were so much a part of Mattie and now you will reflect back to the world what Mattie has infused in you. As in your tradition on the blog, I will leave you tonight with this quote."
"Death leaves a heartache no one can heal, love leaves a memory no one can steal." ---From a headstone in Ireland---
November 12, 2009
A year ago today, Mattie underwent a marathon 10+ hour surgery at Georgetown University Hospital to remove three bone tumors. Dr. Bob performed two major limb salvaging surgeries (one of Mattie's right leg and the other of Mattie's left arm), and a bone graft in Mattie's left wrist. Tonight's picture was taken on November 12, 2008, at 6am in the pre-op area. It was a morning I will never forget. I was so anxious, but thankfully Bob has such a calming demeanor, otherwise, they would of had to sedate both Mattie and I for the duration of the surgery. Despite the surgeries and chemotherapy being so life altering for Mattie and us, they did enable us to have one more year with Mattie. What I would give now for ONE MORE YEAR!
Poem of the day: THE BROKEN CHAIN
We little knew that morning,
that God was going to call your name.
In life we loved you dearly,
In death we do the same.
It broke our hearts to lose you,
you did not go alone;
for part of us went with you,
the day God called you home.
You left us peaceful memories
your love is still our guide
and though we cannot see you
you are always at our side.
Our family chain is broken,
and nothing seems the same;
but as God calls us one by one,
the chain will link again.
Tonight's poem evokes several feelings in me. The first is that I wholeheartedly agree that I do feel as if Mattie is and will always be at my side. There are times I feel his presence, and when I hear his wind chimes blowing in the wind, I do feel as if he is sending me a message of guidance. However, Mattie was a crucial link in our family, and without him, Peter and I as a couple, and our extended family, are trying to redefine ourselves, and understand what links us to one another. This beautiful and precious link, called Mattie, is forever gone, and yet I sometimes wonder how do I repair the connections with those in my family who are remaining? The poem ends by implying that when we die, at some point, we will be reunited with Mattie, and our family links will be rejoined again. Though I realize this is very symbolic and written to provide hope and peace, it does absolutely nothing for me. What if such a reunion is only possible in theory and there is no life after death? A death of such grand proportion makes you challenge every belief system and conviction you may have held in the past. What it comes down to is I don't want the opportunity for a chance relinking in the future, I want Mattie back now. A chance to relink brings me NO comfort, NO peace, and certainly NO hope for today.
Friday is Peter's birthday. As I went to buy a greeting card for him today, and was searching for a card, I realized how do you give a birthday card to a man who just lost his son? What should the card say? Hallmark hasn't come up with the perfect card for that scenario, I guarantee you of that! As I was struggling to find a card, I came across cards that said, "Dad" or "Mom" on them, and I began to feel extremely unhappy. Yes Thanksgiving and Christmas will be hard, but what about Mother's day and Father's day? The endless opportunities for pain seem to be popping up all over the place!
I had the opportunity to see Ellen (Charlotte's mom) and Christine (Campbell's mom) today for lunch. We are making an effort to see each other weekly, and I want to impress upon my readers that prior to Mattie's illness the three of us did not get together weekly. But somehow through Mattie's death, we realized some things have to change. We can't put off the opportunity to connect with friends, the chance to get to know one another deeper, and that it is okay to share our inner thoughts and feelings with one another. It is ironic, prior to Mattie's cancer, I would never have slowed down to appreciate these moments, I instead jumped from one task to another. In the process of doing this, who knows what I potentially missed. Mattie's death has forced or jolted me to face certain realities about life and I continue to be perplexed about how much I have learned about life through understanding death.
This afternoon, I had the opportunity to pick Ann's older daughter, Katie, up at school. As I was waiting in the carpool line, I could see Katie in the distance, and what immediately struck me was there was the 11 year old version of Ann. Katie, to me, looks a lot like her mother, and for some reason this resemblance made me smile. It made me imagine what Ann must have been like at Katie's age, but it also made me see that our children are our legacy. But what happens when your legacy dies? Somehow today was a day of questions for me, many of which have no simple answers.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "There was a time in the not very distant past when one who was grieving wore black for a year. Although the world did not stop, everyone who saw that person knew they were grieving and would express their condolences; people went to see the family in a sympathy call as the family tended to remain outside of "society" for a year giving themselves some time to grieve. Perhaps we have given those customs up too quickly. It's hard to know. I do know that it is hard to be in grief and walk around in public and realize that no one sees it, even though the loss is written in capital letters on your heart and mind. I appreciate what Jenny and Jesse did with the children in the clinic; it is wonderful that they are helping them process their grief for Mattie. They, like you, are intensely aware of the fragility of life and yet if they are to be successful in their battles to survive their illnesses they have to be very strong and sometimes even that is not enough. It is a hard road to walk as you well know. I am grateful to Ann for being there, being a strong support and keeping you from isolating yourself as you grieve. I read in your blog how much Mattie loved Christmas and I too am having difficulty facing all the decorations in the stores. I am not a Christian but my intent this year is to try to appreciate the deeper meaning of the holiday season in general; and to try to be the candle that casts light into someone's darkness. Today, for a while, may you find some of that light in your own life."
The second message is from my friend and colleague, Nancy. Nancy wrote, "Dearest Vicki, I read the last two days blogs and am very glad that you are okay. Another wake up call that you are grieving and have much left to accomplish. I was taken by your statement regarding the world going on as if nothing has changed. For the general population, those not knowing of Mattie and all of you, you're right nothing has changed, but, for all of us, who love and support your family, our world has certainly changed. I, too, thought of Mattie when we were at Disney World. Our family met for dinner at Downtown Disney and what was there but a LegoLand Exhibit and store. I went looking through the store and had many sensations of Mattie as I glanced at the kits and pieces. I'm sure that he would have had a ball just picking out what he was going to tackle next. Your rawness and grief is still so new and the world does go on as do we, in spite of what we feel. I remember how often I speak of my parents, individually and collectively, when something triggers a memory. Sometimes, they are full of joy and others produce tears, occasionally, anger abounds too. I think the boxes created at Lombardi speak volumes of the impact that Mattie and your family has had on many. They are living memorials to your special Angel. I am so happy that you can think about the clinic, Georgetown, and all of the staff in a positive way, as an extension of your family, because, you are so right, when you say many never want to be around these painful memories again. For you and Peter, especially you, they will serve as a healing spot and a place where you may share your talents in the future. Vicki, may you draw just a bit of comfort from all these pictures and objects that speak of and for Mattie during these days, weeks, months right now. That is what you have, moments, and there are so many beautiful ones. With much love and a big MattieBear hug!"
November 11, 2009
This picture was taken days after Mattie was diagnosed with Osteosarcoma in July 2008. By this point we knew theoretically what Osteosarcoma was, but we had no idea of the living hell that was in store for us. Mattie wanted to celebrate Christmas in July, so we pulled out all his outdoor lights. After we set it all up, he jumped into my lap, because he was happy for that moment in time. I remember how scared I was back then. Now I only have memories of Mattie's hugs, kisses, and voice. I can't think of a greater pain for a parent. Peter and Mattie always did a holiday light display in our complex. It grew with each year that Mattie was with us, and it really was remarkable. In fact, we had neighbors photograph it from year to year. This year, I have no idea what Peter will do, or if he will even want to do a light display. However, for us, the spirit of Christmas seems to have died on September 8, 2009.
A million times we've cried.
If love alone could've saved you,
The day God took you home.
Jenny and Jessie (Mattie's art therapists) sent me some very special pictures that I would like to share with you tonight. As my regular readers know, Jenny and Jessie were two of our lifesavers throughout Mattie's illness. They stimulated him, entertained him, and got him to process some very difficult feelings through play and art. I will never forget these talented and loving women. I consider them one of the gifts I received throughout this ordeal and torture. After Mattie died, they ran a bereavement art therapy project in the clinic to help the other children process Mattie's death. The pictures they sent to me illustrate the art project that was generated from multiple sessions. Mattie's clinic buddy, Maya, was instrumental in this project's creation. I haven't seen Maya since Mattie's death, and a part of me wonders how she is doing with her buddy's loss. Mattie did not connect with other kids his age in the clinic, but he did instantly connect with Maya. She and Mattie had many similar qualities, they were both.... bright, creative, well spoken, and full of energy and life. As Mattie's mom, I am deeply touched that Jenny and Jessie gave the children an outlet to express their grief and memories of Mattie, and that they took pictures of the project and shared it with me. It does my heart good to know that Mattie hasn't been forgotten at the Lombardi Clinic, a place where Mattie intensely spent his last year of his life. Thank you Jenny and Jessie!
Jenny sent me this e-mail, and I thought you would like to read it. Jenny wrote, "Hi Vicki, Jessie and I just wanted to say hi and let you know that Maya was in clinic today and she continued to work on the group project that began in a bereavement art therapy group. It's a cardboard box project (to honor Mattie, of course), and inside is a miniature version of the art therapy area of clinic, complete with mini model magic versions of Mattie (and wheelchair), Maya, Brandon, Linda, us, Jocelyn, and Bridget. The art table is there as well. Today, Maya made mini versions of some of Mattie's magic trick supplies (boxes with swords and rings, the hat with the American flag...) she remembered a REMARKABLE amount of Mattie's tricks, and talked a lot about him. Maya's vision is that the group is WATCHING Mattie perform magic tricks in the scene. We have a new art therapy intern, and Maya told her ALL about Mattie and how sad we all were when he died. Just wanted you and Peter to know that Mattie is still very much alive and well (and fiesty!) in our minds and hearts, and in those of his friends at clinic."
Left: The Art Therapy box remembering Mattie in clinic. Notice the replica of Dr. Crazyhair in the back left hand corner of the box. Mattie would have been thrilled for many reasons! As you know, he loved cardboard boxes at the Hospital!
Today, I went to the shopping mall with Ann. Ann is planning a mall scavenger hunt party for her older daughter's birthday. Though Ann hasn't actually admitted this to me, I think her psychology of including me during the planning stages of this party is that it motivates me to get out of my home, around other people, walking, talking, and focused on something else for a few hours. Of course, as we are walking and figuring out party stops for the scavenger hunt we are also talking about Mattie or feelings I have around this loss. I always joke with Ann, that there are times I am surprised she just doesn't need a break from me, my moods, my confusion, and the list goes on. But some how, she never wavers and can at times get me animated or laughing about certain things. What I wasn't expecting during the mall visit was the simple fact that stores are beginning to decorate for Christmas. This for some reason brought me great sadness. One store was actually playing Christmas music as well. I think what bothered me the most about seeing Christmas displays was that in my heart, the holidays are non-existent. Things are dead for me, and yet, my frustration is I see the world around me moving along as if nothing happened to upset the natural order of things. The only one who seems impacted by this is me, and this leads me to question then what is the meaning of our time here on earth? If a seven year old can die, and this doesn't cause the world to stop and take notice, then really what is the meaning of any of our lives? I certainly know that Mattie has caused us all to learn a great deal about our lives and our priorities this year, but is that enough? It is a humbling thing to think that we could die tomorrow, and certainly our family and friends may be devastated, but the world continues to revolve, holidays continue to come and go, and really nothing is perceived to be changed.
November 10, 2009
Tonight's picture was taken in January 2009 and features Mattie sitting in his wheelchair in the PICU. Mattie assembled a very complex 3-D pirate ship puzzle, and was proudly displaying his accomplishment. Notice the Christmas bell he put around the sail of the ship. Got to love Mattie's sense of humor. Mattie became an expert builder while in the Hospital. He could put together anything, and what I admired about him is he had a logical mind, that understood how things worked and how things could be put together.
Poem of the day: Don't Cry I'm in God's Keeping by Rhonda Braswell
God saw that he was getting tired
And the cure was not to be,
So He put His arms around him
And whispered, "Come with Me.
"With tearful eyes we watched him suffer
And saw him fade away.
Although we loved him dearly,
We could not make him stay.
A golden heart stopped beating,
Busy little hands to rest.
God broke our hearts to prove to us,
He only takes the best.
It's lonesome here without you
We miss you so each day,
Our lives aren't the same
Since you went away.
When days are sad and lonely,
And everything goes wrong,
We seem to hear you whisper,
"Cheer up and carry on.
"Each time we see your picture,
You seem to smile and say,
"Don't cry, I'm in God's keeping,
We'll meet again someday."
I had the opportunity to spend a good portion of my day today with Ann and her children. Her children had a half a day of school today, and when they got home, Ann's son and his friends prepared for a Lego League competition that they are participating in this weekend. As I sat there watching this today, I couldn't help but think that my Lego master was missing from this equation. I really believe, and I realize I may be biased, that Mattie had very advanced Lego skills for his age. He could follow Lego kit instructions, but then he also had the patience, fortitude, and skill to also create his own complex designs. While at Ann's house, her daughter Abigail was cleaning her room. The next thing I knew, she came to show me her school yearbook, when she was in Kindergarten. This was self-initiated on her part. Why did she want to show me the yearbook? Because Mattie had signed it and she wanted me to see this. When she showed it to me, I was stunned, and yet at the same time, was deeply moved that she remembered he signed her book, and that she wanted to show it to me. Ann's other daughter, Katie, also showed me a Scooby Doo DVD that she came across while looking for something else. She said that she was saddened that she found this now, meaning that she knew Mattie loved Scooby Doo and most likely would have liked to see this movie. Clearly Ann's girls know that I am Mattie's mom, but I find it particularly touching that in their own way they want to keep Mattie's memory alive by acknowledging things in their everyday world. I am also fascinated by the fact that they are not afraid or awkward to acknowledge Mattie's presence in their lives.
This afternoon, on my way home, as I was only about a block from our complex, I got into a car accident. A taxi hit my car, but fortunately I was moving very slowly through an intersection, and I wasn't hurt, nor was there much damage to either of our cars. Nonetheless, the whole thing upset me and all I could reflect upon was the simple fact that I have been driving since I was 15 and a half years old, and never once got into an accident. But today, only a block from my home, I had to face another reality, which is you can be the safest driver possible, and yet there are things simply out of your control. Seems to be my theme this year. Living life out of one's control. When perceived control of your world is stripped from your life, it is a highly unsettling and hopeless feeling. After I was hit, I really wasn't sure what to do. I was stuck in the middle of the intersection, so I called Peter and then called Ann. I really felt ill equip to make an intelligent decision, which is unlike me. So I chalked this up to being stunned that I was hit by a car.
Tonight, Peter and I had the opportunity to meet up with Dr. Kristen Snyder for dinner. Kristen was Mattie's oncologist. Kristen is a special person and doctor to us, and it means a great deal to us that she wants to remain a part of our lives. We spoke with Kristen for three hours tonight on a host of different topics, but one thing was for certain, three hours went by very quickly. Our relationship has been built with a solid foundation, respect. I was very touched to hear that Kristen reads Mattie's blog each day, as does her mother, and a close colleague of hers. I asked Kristen if she read the blog while she was Mattie's doctor and her response was, no. When I asked her why, her response to me was very meaningful. She basically said she wanted to allow me the freedom to express whatever I wanted to on the blog, without having me worry she was reading it. In addition, she also felt that our important interactions in which information was exchanged should happen face to face and if I wanted her to know something, she knew I would tell her, and likewise, if she had a question, she would just ask me (rather than reading about a thought or feeling I had on the blog), so in essence she really helped to establish a very authentic and open relationship between us, and this sincerity and honesty means a great deal to me. In my perspective the medical profession would be a lot better off if it had more physicians with Kristen's level of integrity and commitment to patients. I am very aware that other families who lost their child to cancer may not want to meet up with their child's doctor or even return back to the hospital where treatment was sought. I feel the complete opposite. Visiting Georgetown on Sunday and seeing Kristen tonight are very much part of the healing process. In fact, I think having this void in my life for the passed two months has been quite difficult for me, and in a way having this reconnection again has been only beneficial for me.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I read Monday's blog this morning. I am so sorry you and Mary ended up with that social worker- Haven's training staff teaches us never to say, "you'll get over it" or "it will get better with time." We as counselors don't know how you will feel one or two or ten years from now. And there is no "right way to grieve" the death of a loved one. When you decide to clear out some of his or her things is up to you; what you do with them is also up to you. The only people who seem to think they know the right way to do things are those who have not walked the path of grief for someone very close or who have forgotten how very difficult it is. I've read a half dozen books now by parents who have had a child die and what I read so often is this: there is shock and disbelief regardless of how the child died. There is a wish to go back to how it was before the death even if that was not a positive time (the child was ill but he or she was here!); there is often a moment before fully wakening when you are still half asleep that is often peaceful and then then the realization that your child is gone "crashes" on you. I've read this feeling as being "steamrolled" or so heavy as to make it hard to breathe. Anyone who thinks it is easy to face the day starting out like that is living in a fantasy world. However, I can also share that most of them said "you survive and go on, you make a life and you find meaning in doing something." Missing the person never stops, you may cry at anniversaries, holidays and days that have no special meaning but just because you saw or heard something that brought back memories. However, even to get to that point takes time, takes years, not days, not months so be patient with yourself. I hold you gently in my thoughts today and everyday."
The second message is from my friend and colleague, Nancy. Nancy wrote, "I just finished reading yesterday's blog. How did you ever stand that social worker's behavior? Of course, you didn't! You are so right that 'clinicians' like this need to know where they belong and not delve into areas where they are more of a hindrance than a help. I just remembered that she was there because she was a grief counselor from Hospice. I think she missed the training sessions for a person facing a recent loss.This gave me pause because I still struggle with the loss of my Dad and now have been so busy handling my Mom's estate that I seem to be on automatic pilot often. I have been noticing that I don't cry very much and that is disturbing to me as I used to cry at the drop of a hat when sad. Your visit with Olivia and Ann was what you needed yesterday. It gave you a few moments to just be you and that is the most healing. I don't like being busy and doing what others think I should do so I understand that you need to do this on your own terms and in your own way. Your Mom's story was so beautiful as is the orchid. Another example of our loved one still speaking to us even when they aren't in front of us. I so believe that this is another example of faith. It isn't holding on to the pain. It is holding on to the love and desire to connect with those we have loved and lost.I have a friend, Janet, whose daughter died over 25 years ago from a car accident. Renee was 18. It still hurts when we talk about her and we do, to this day. You are Mattie's Mom and always will be. I know that this isn't a new concept, others have said it, yet, I think that you can't hear it often enough. He is with you and these poems that everyone has sent are a gentle reminder of the love, warmth, and pain of your loss.I send hugs and admiration to you today and wish you a simple, relaxing day."
November 9, 2009
Tonight's picture was taken in April of 2009. Spring time was always a special time of year for Mattie and I. We both loved to see the trees unfold their new leaves, and we especially loved the Cherry Blossoms on the Mall. In fact, we would often visit them during the week, when the tourists hadn't arrived yet by the bus loads. Peter took a picture of us on one of these special walks, and as we headed to the Washington Mall, we always passed this amazing fountain. This was one of Mattie's favorite fountains because of the tremendous amount of water shooting up into the air. The fountain also attracted ducks, and you can see a few floating about in the background.
Poem of the day (Thank you Julia!): I Wonder by Jackie Riesland
Was there pain?
Did you feel pain?
Or were you here one minute
And with God the next?
Was there a tunnel of light?
Or just darkness?
I choose to believe there was someone there for you.
I was not,
Maybe even an angel or two,
To ease your fear
When you walked toward
The Light of God.
Were you afraid?
Did you hear my cries for you?
Did you feel the loss,
The loss of a life briefly lived,
Or were you glad to go?
To go home to your place in Heaven.
I wonder these things.
I wonder where you are.
I wonder how you are.
Do you think of us?
Without you, a piece of our heart has been taken away.
Are you in pain, Or does the Light of Heaven erase the pain?
When will I see you again?
I wonder when your soul left behind what I knew as my son?
I am your Mother,
And I don't know how it can be that you are okay without me.
Each day I push down the pain in my chest,
The pain that is always there.
The pain of wondering~What happened to my SON?
Most of all I wonder?
This morning, I went to visit Ann's mom, Mary. Mary and I were having a nice conversation together and I shared with her two photos that I wanted her to have. One was a photo from her 50th anniversary party and the other photo was more recent, a Halloween photo. While Mary and I were chatting, a woman walked into the room. I had recognized her from previous weeks, but she reintroduced herself to me. It turns out she happens to be a grief counselor through Hospice. She was coming to talk with Mary, as apparently she periodically does. This is my second time meeting this social worker, and she and I did not get off on the right foot during our first meeting weeks ago. Mainly because she was visiting Mary during a time when Mary was sleeping and not feeling well, so I wouldn't give her access to talk with Mary.
I wanted to give Mary her privacy to talk with this social worker today, but Mary told the social worker she wanted me to stay. Mary told her that I too had suffered a major loss recently. As soon as the social worker heard I lost my son, I became the immediate focus of attention. Despite my best efforts to redirect the woman to the person (Mary) she came to see and help, she continued to focus upon me. So I did talk with her, and pulled Mary into our conversation as well. At one point the social worker turns to both of us and says that our grief will get easier with time, and it won't be as painful or hurtful as it is now. I said nothing (NEVER a good sign!). However, Mary did not allow her to get away with this insensitive and down right ridiculous statement. Mary told her in her own words that she disagreed, and gave the example of her son who she lost two years ago. She told the social worker that she still reflects on the loss of her son daily, and it still pains her. Since Mary began the conversation, I felt the need to step in and concur with her, because Mary is exactly right. I then asked the social worker if she ever lost a child. Of course she said, NO! With that, I basically told her that she then had no right or idea to tell us how or what we will be feeling in time. Again she and I do not see eye to eye, and within only a few minutes time she felt the need to refer me to a support group to share my thoughts and feelings with others who lost a child. Despite my telling her I wasn't ready to do this, she kept after me, and even called me later in the day with support group information. This insistence by this social worker not only irritated me the entire day, but what I found particularly disturbing is she was judgmental, thought she knew my grief better than I do, and most importantly she wasn't truly listening to me or respecting what I was saying. So my day started out on a shaky note, and what I regretted was I had to leave Mary with this woman, because I had a lunch appointment. But I felt like this social worker was the perfect example of why the mental health profession sometimes gets a bad reputation, especially when it comes to handling grief and loss issues. She handled sensitive issues poorly and did not listen well, which is the cornerstone in my perspective of a good counselor.
I had the opportunity to meet Olivia today for lunch. Olivia is a SSSAS parent and was instrumental in hosting and planning Mattie's Celebration of Life reception at Georgetown Visitation Preparatory School. Olivia and I haven't seen each other since October 10, so I am happy we had this time to connect today. Olivia and I spoke about so many different things. I know she is a faithful blog reader, as I know many of you still are, and I asked Olivia today why she continues to read the blog. We explored a whole host of reasons, but one of the things I concluded was that many of our readers are invested in our family's story, and there is something about this story that pulls on your heart and also makes you reflect upon your own lives. Losing a child is one of the worst things that could happen to a family, and yet this could happen to anyone, any one of you for that matter. I know many of you are looking for some possible reason or explanation for our suffering and perhaps by continuing to read the blog you will find at the end of this long struggle a ray of hope, some sort of positive outcome to bring us all peace. Watching Peter and I undergo this intense grief, is at the core a study in human resiliency, because in all reality how do we get up each day? What motivates us to keep living? I honestly don't know. Olivia and I had a very existential conversation today, which I found both stimulating and supportive. She told me it was easy to know how to support me while Mattie was still alive. After all, there were tasks to be performed such as meals, bringing toys, visiting Mattie, etc. But now it is harder to know what to do to help or support me, because perhaps grieving is a process that must happen independently and in isolation. Indeed, some people like myself do accomplish the more intense grieving in isolation, however, I explained to Olivia that I still needed support. I don't mean professional support, I mean the support of those in our Mattie community, who are willing to listen and understand that I am not looking for answers. I am not looking for someone to fix my problems, but simply to be heard, to be able to share ideas, and not be judged for having them. I think the biggest mistake people make when dealing with people who are grieving is to feel that they can't help because they haven't lost a child. I agree, it helps to have this commonality definitely, but I also think that if someone has the desire to help, that many times the desire can be a powerful and very healing force in and of itself. Needless to say, I found my lunch today with Olivia very moving and healing, because we connected on an emotional level in which we shared feelings about Mattie's loss and about the challenges of being a mom.
I had the opportunity to see Ann today as well, and in the midst of my visits with Olivia and Ann, I purchased a book entitled the "Grief Garden." It is a book that covers the case stories of 22 parents who have lost a child. I began reading this book today and quickly realized that I wasn't ready to continue reading it, or at least I had to put it down today. In one of the case stories, a mom explains that her life is forever changed, and even 10 years after the death of her son, she continues to feel this way. This is my biggest fear, and you can say whatever you like about this mom (she did not seek counseling, did not have an effective support system, etc...), but in the end, I can see how this feeling is quite plausible. Which led me to question what if this is my life? What if, like this mom, I always feel this way? Any case, I feel as if I must follow my inner feelings right now, which tell me I am not ready yet to explore certain issues. It would be nice if I could, but again, I have to respect the fact that at the end of the day, I am the only one living this life, living this loss. If I don't think reading and seeking support is what I need right now, then I have to be at peace with this.
I would like to share a story my mom wrote today and sent along to me. I found it very moving, and anyone who has tried to grow an orchid plant, knows that they are temperamental and not easy to maintain.
Mattie and The Miracle of The White Orchids
By Virginia R. Sardi
A few days after Mattie passed away, Mauro and I returned home to Los Angeles where we continued to grieve for Mattie and prepare for a quick return to Washington to attend the Celebration of Life to honor him. Our hearts were heavy but our minds were keenly focused on the message we wanted to create and present at the ceremony to accurately reflect his accomplishments in the seven years of his life as seen through our eyes and the prism of our experiences with him. Nothing else mattered much to either of us!
Shortly after our return, good friends sent us a beautiful white orchid plant in his memory. The plant came with a decorative copper filigree support and though long stemmed and elegant, it appeared to be both fragile and in need of a professional touch for it to have any chance of survival. Not having cared for an orchid plant before, I didn’t have much hope of success. I also knew I could not give it the attention it deserved, so I placed it in my kitchen hoping that if it received filtered light and water on a fairly regular basis, it might last a few weeks at most and as time went on, being preoccupied with weightier matters, I must confess I forgot about the plant altogether. Not a good way for a plant to thrive in a new environment. To make matters worse, when we left for Washington, DC to attend Mattie’s celebration of life, our dear friend, John, who usually takes care of our house, and waters our flowers and plants when we are away, was bitten by a spider and landed in the hospital. Mattie’s white orchids received no water or attention that week and when we returned from Washington, there were so many things to attend to, that I overlooked it in attempting to settle down, unpack and try to cope with the loss of Mattie. When I finally got around to checking out the plant, I was astonished to see the beautiful white flowers as fresh and amazingly beautiful as the day the plant arrived at our house. It was shortly after October 15th and I noted that the plant had been sitting in the kitchen for about a month. What a remarkable plant, I thought! It’s appears to have Mattie’s stamina and staying power otherwise it could not have made it through a month of neglect!
I must say from that day on I began to observe the flowers every day and check for any evidence that the blooms were fading or past their peak. As I sit and write tonight, November 7th, the flowers look as glorious as on the day I first saw them. The plant has now been where we left it in the kitchen for almost two months and I am astounded at the delicate beauty of its flowers and their invincibility in spite of the odds against them.
My curiosity got the best of me so I googled the internet to find out more about this incredible plant. I learned that:
A white Phalaenopsis orchid bestows wishes of purity, love and adoration. What other indoor flowering plant will bloom and stay in bloom for two to three months? Only a Phalaenopsis orchid especially a white Phalaenopsis orchid. With proper care they can last for weeks, even months!
So it is possible for a white orchid plant to stay in bloom for two or three months but note the caveat that it would require proper care for this to happen, not near neglect. Could it be, was it possible that Mattie’s love of nature transcended his heavenly abode to influence our earthly lives by performing another “Mattie Miracle?” Did he nurture his white orchids with manna from heaven to keep them alive and in bloom to compensate for our lack of earthly attention to their needs and make them stay fresh for such a long time as a reminder to us that he is not gone but ever present if we but only remain sensitive to his new power and potential to interact with us on another plane?
I leave you to judge for yourself. Today, I took a picture of these beautiful orchids and thought you might ponder for yourself how these white orchid blooms could look so fresh and alive after two months of living without much human intervention. Like the white orchids, Mattie, with his purity, innocence and love, proves to me beyond the shadow of a doubt that he is still an irresistible force in our lives who makes “miracles” happen to signal that he resides forever in our hearts and reminds us in a subtle but tangible way that although we cannot see him, he can still see us!
Are these white orchids not glorious? You must take into consideration that they have been like this since the day we received them shortly after we returned home on October 12th! Is it another “Mattie Miracle?” I’ll let you be the judge!
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Your blog was so detailed I could "see" you yesterday at the memorial service at Georgetown, at the ceremony and then trying to get down that hallway. I am glad that you feel safe enough at Georgetown to start to get in touch with your feelings; that speaks volumes about the staff of the hospital because as you wrote, many families do not feel comfortable in that setting once their loved one has died. Many thanks to Ann for being a soft place to land and a firm support all at the same time even though she is also grieving her father right now. People grieve differently, even married couples who have the closest relationship usually have difficulty giving each other support at this time which is why they are each encouraged to have a grief counselor help out. Groups are not for everyone; and even if you want to join a group, some people wait a couple of months while others may wait more than a year or two. It depends on the person who is grieving and where he/she is in the process. I am glad you found the ceremony meaningful and moving; I know you were afraid you might not. Just don't be afraid to cry, tears are the outward expression of deep and abiding love and are always an appropriate statement. I hope you found some healing yesterday, today do something for yourself, however small. You remain as always in my thoughts."
November 8, 2009
Tonight's picture was taken by my mom a week before Mattie died. She sent it to me yesterday, and we both commented how good Mattie looked despite his need for oxygen and a pain pump at home. It is hard to believe that this smiling face is no longer with us, and on nights like tonight, I just sit back and ask myself how could this be possible? What cruel trick of nature could allow this to happen?
Poem of the day: I Loved You So by Diana Whitton
I think of you and start to cry,
It breaks my heart that you had to die.
Your final days were filled with pain,
But never once did you complain.
I miss you so with all my heart,
But I know we'll never be apart.
I'll always have memories of you and me,
With lots of pictures of you to see.
Your Angel came down and took you away,
Even though our family wanted you to stay.
Your pain is gone...it is no more,
It's time to spread your wings to soar.
I know it was your time to go,
But, always remember...I loved you so.
This afternoon Peter and I headed to Georgetown University Hospital to attend their annual remembrance memorial for all the children who died at the Hospital. On some level I knew this was going to be a hard visit, since this was our first visit back there since Mattie's death. I will acknowledge that I may be different from most parents. Why? Because I have a strong affection and admiration for the doctors, nurses, and support staff at Georgetown, and because of this, visiting the Hospital is almost like visiting something very familiar, something very secure and comforting. I assure you this is an odd statement for me to write as it is for me to admit, since prior to Mattie's illness, I despised hospitals. They made me nervous and edgy.
When we walked into the Hospital chapel we were greeted by Linda (Mattie's childlife specialist), Jenny and Jessie (Mattie's art therapists), Denise (Mattie's social worker), Sharon (the chaplain), and Gail (our patient advocate, who heard my share of complaints!). It was at that moment, the feelings of the past 13 months started to hit me, but I was still okay at that point. However, as the ceremony got underway in the chapel, all sorts of feelings came over me. My heart began to race and I had trouble catching my breath, which is the first sign for me, that crying is about to happen. Sharon, the chaplain, did a beautiful job with the ceremony, and said many meaningful things. Such as, no one can understand the true depths and grief of losing a child, not even your spouse. She went on to say that spouses deal with grief differently, and therefore can't support each other most times through this crisis because both individuals are too absorbed in the hurt and pain. I have been saying this for 13+ months now, so it was nice to hear that actually verbalized by someone in public today. The death of a child is a crisis in a marriage unlike no other. In fact, I picked up a book today that I believe Karen K. gave me, entitled, "When the bough breaks." I have been opposed to reading grief books for various reasons. But something about this book caught my attention today, maybe because I was feeling vulnerable about going to the service this afternoon. The book devotes a whole chapter to the impact of a child's death on a marriage, and the first line in the chapter is that 70% of couples divorce after a child dies. The author goes on to dispel this statistic, but none the less this myth has been promulgated in our society.
At the service, Peter and I got to light a candle for Mattie and we also had the opportunity to say a few words. During the ceremony, I could see that we were surrounded by several of our nurses, doctors, and support team. So it was a combination of feelings, that came over me today. I was far more emotional than I was at Mattie's funeral, and several things I think explain this. First, as time is passing, I am allowing my defenses to slowly wear away so that I can actually deal with Mattie's loss on some level. Second, being at Georgetown brought back some very raw memories of Mattie which flashed before me, and third, I felt surrounded by people who understood me and knew the true depths of what we suffered this year. Therefore, I cried throughout the service and felt like the experience was very meaningful to me today. Ann, came to support us through the service and sat with us, and passed us tissues at several points.
Once the service was over, Jane, Norma, and Tricia came up to us and visited with us. These were all nurses of Mattie's. Jane was a PICU nurse who provided excellent care to Mattie after his limb salvaging surgeries, Norma is a sedation nurse who played a crucial role in sedating Mattie for all his cyberknife procedures (and she and her daughter supplied me with wonderful chocolate treats during some hard PICU days), and Tricia, who is one of Mattie's favorite HEM/ONC nurses. Tricia was one of the first nurses I connected with in the PICU. Tricia and I just understood each other, and respected each other right from the beginning. Tricia helped me through times that seemed inhumane, and also fiercely advocated for Mattie and us when we needed a helping hand. I will always remember the first week Mattie received chemotherapy. He was mad, upset, and lashed out at me. He was screaming at me and told me he hated me. Tricia was in the room with us while this was happening, and she tried to calm Mattie down, but I was very upset and was crying as well. She literally took both of us by the hand, helped us into Mattie's bed, and tucked us in together. It was that tender gesture that won my heart from that point on, because she understood how devastating it was for a mother to have to watch her child receive chemotherapy and then to also hear how much her son hated her for doing this to him.
I realized something very powerful today, that I hadn't been able to verbalize before. It is that I truly understand the power of loving people, especially people who I am not even related to. This may not seem like a revelation to some of my readers (that it is possible to love someone deeply who you are not related to), but to me it is. I like a lot of people and respect them, but I have always reserved love to just my family members. This year, my heart has been opened up in ways that is simply unimaginable. It is ironic in losing Mattie, one of the greatest and most powerful forces in my life, that through this deep pain and suffering, I am able to experience love on a much deeper level. I attribute this gift to Mattie, since he connected me to several precious people in my life. In fact, on some level I feel as if he wouldn't leave me, until he felt confident to know that I was surrounded by this type of love in my life.
After the chapel ceremony, there was a reception outside the Lombardi Clinic for family members. Peter was walking with Tricia and Jane, and I was following behind him with Ann. As I was walking with Ann, I realized just where I was. I was walking down the main hallway of the hospital, the hallway which Mattie and I traversed during each hospital admission or visit to the Lombardi Clinic. In addition, in the hallway there is a magnet shape painted on the wall just over the hallway's threshold. I must admit my ignorance, because during the first several visits, I couldn't figure out what this painting was supposed to be until Mattie told me it was a magnet. In any case, as I walking with Ann today, I felt as if I was part of an Alfred Hitchcock movie. The hallway seemed to be getting longer and longer, and in the midst of this transformation, I was carried back in time to pushing Mattie in a wheelchair through this hallway, with him talking to me, about a host of things, and then of course stopping me periodically to make sure I recognized the magnet painting. It became almost impossible to walk this hallway today, and if Ann did not have her arm around me, walking beside me and talking to me, I would have most likely not made it. Ann remained calm, told me I could turn around if I wanted to, that I did not have to walk the hallway, and then she recalled and retoll a story about Mattie in the hallway that distracted me for a brief moment, so that I could focus upon it. None the less, I was crying and everything about Mattie, his illness, and his death seemed to flood me in that hallway. It was in this moment, that time seemed to stop. That I couldn't believe Mattie was no longer with me, and yet at the same time I felt his presence in the hallway. As if he were walking besides me.
When we finally got to the atrium where the reception was, I went to sit down, and Tricia and Ann brought me things to eat and drink. Tricia sat with me for quite some time, and I cried and laughed, as if I was visiting with a friend I have known for years. Thank you Tricia for being there today, as I told you, it wouldn't have been the same without you there or at the funeral.
There were only three families present today who lost a child to cancer. The other families lost a child either within the transplant unit or through intensive care. I had the opportunity to connect with Cody's parents today. Many of you may recall that Cody (who had neuroblastoma), age 7, died in March of 2009. While I was talking to Cody's mom, I could immediately sense that she and I were on the same plane as it related to grief. Similar to how I felt when I e-mailed Chris (Sammie's mom) this week. I began to make the connection that we are all turning away from other people, shutting out the world, and trying to find meaning in our lives, now that the one true meaning for a mom has been taken away from us. I have been hesitant to join a support group, and Cody's mom expressed the same concern. I am not saying I will never do this, I just don't want to do it now. Grief is a very personal thing, and there is no right or wrong way to process it or handle it. Sharing grief with a group of strangers right now is not top on my list. I have talked with Georgetown's social workers about establishing a group for some of us at the Hospital, but the problem is most parents do not want to return to the Hospital for such support. I personally would welcome it, because this is where my daily support network has been for the last year. So I left today with the feeling that I am not alone, other moms who lost a child to cancer feel the same way as I do, and trying to seek support, when I don't feel like attending such an outlet or deem it necessary at the moment is okay.
Later on today, I went to visit Tanja and her daughter, Katharina. Katharina wanted me to stop by because she made something for Peter and I. Katharina made us a batch of delicious brownies which was a treat in and of itself, but in addition to this gift, she handed me a handcrafted card. The card had some beautiful flowers, fire works, and balloons on it that she drew, and on the inside, she wrote that she will never forget Mattie and wanted to do something to acknowledge him and his Foundation. She has been saving her allowance to give us a generous donation. At first I did not know what to say to Katharina. This was a gesture that was deeply meaningful, and for a child to save her allowance for such a cause, made me pause and smile. Mattie obviously touched her life, and in her own way her gesture to save up her money was telling me she wants to help others like Mattie. I told Katharina she is my youngest donor yet, and that this meant a great deal to me. Mattie's legacy ultimately lives on in his friends' memories and lives. Katharina's donation enabled me to see this tonight. We also want to thank Tanja for sending me home with dinner so that I did not have to cook!
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I can tell you from my training and the people I worked with at a grief workshop yesterday that what you are feeling is completely normal. That feeling that there is nothing to look forward to; that life is unfulfilling now is something I heard over and over again. I heard about sadness, anger, guilt, loneliness and isolation. I wish I could tell you that there is a clear, well marked path out of this but there is not. You are two months into grieving now and it is interminable from your side of it; these feelings are awful and all consuming. For right now try to focus on small things and on "today" as much as you can. While meeting a friend for lunch may not qualify as a date on the calendar to look forward to, it is important and helpful to have those plans and not lock yourself away all the time. There is also a difference between public memorial ceremonies and sharing your story with a grief volunteer or counselor; I encourage you to do the latter, I've heard again and again the difference it makes in the long run (a place you cannot see right now). I do hope you find some comfort in the memorial service you are attending today and know I am thinking of you as you do so."
The second message is from one our favorite HEM/ONC nurses, Tricia. Tricia wrote, "I just got home from work and it is after 10 pm. I am off for the next two days and the kids have off of school tomorrow. By the way, I don't know if you saw it or not, but Monday night there was a full moon. I went outside to take Peanut (Tricia's dog) out before bedtime and despite how dark it was, the moon was brightly shining and in that moment I felt happiness because immediately upon seeing it I said to myself "Mattie Moon" and I know he was listening. The following morning at 0630 as I was driving down Maine Avenue into work, again there was the moon as bright as ever in broad daylight beaming down from the sky, I whispered softly to MATTIE that I miss him and love him. As usual he was listening and I felt happy. These spiritual connections are how I find peace and happiness, and are the times I choose to remind myself that Mattie is truly at peace himself now, then I find myself saying a prayer again for you to help you find some form of peace. Anyway, just wanted to share that with you, you know I am thinking of you always."