Saturday, March 15, 2014

Saturday, March 15, 2014

Tonight's picture was taken in March of 2009. Mattie was given several silk screens and got to design whatever he wanted on them. This screen illustrates three of Mattie's tell tale signs.... 1) the sun, 2) grass, and 3) blue sky. These three things always made their way into all of his drawings, with only the main subject matter changing. In this particular silk screen, Mattie drew a picture of his "girlfriend" Charlotte who came to visit him that day in the hospital. Mattie's silk screens became part of our room decorations. Literally I would hang them from the ceilings with each hospital admission. Our admissions and discharges were hilarious because we looked like a traveling circus show with bins on wheels! However in addition to the silk screen, you can also see one of the many surgical scars on Mattie's body (the one on his right leg) in this photo. 


Quote of the day: You’ll get over it…” It’s the clichés that cause the trouble. To lose someone you love is to alter your life for ever. You don’t get over it because ‘it” is the person you loved. The pain stops, there are new people, but the gap never closes. How could it? The particularness of someone who mattered enough to grieve over is not made anodyne by death. This hole in my heart is in the shape of you and no-one else can fit it. Why would I want them to? ~ Jeanette Winterson

Peter and I are safely home in Washington, DC tonight. However, despite going to Mary's funeral, there is something wonderful about Boston. I am not sure what about it I love so much, but it just seems REAL to me. I love DC, it has been my home for the longest part of my life, yet I suppose my heart relates to the north east. Boston has spunk, people are down to earth, and you just got to love the ACCENTS! As soon as I stepped off the plane, I was cracking up with announcements on the PA system at the airport. But if all of this doesn't get you, then the sheer love these folks have for Dunkin Donuts will! They even have a Dunkin Donuts store in the AIRPORT. Yes I admit to photographing it, but look it was at 10pm at night and it was still BUSY!!!! Two things are for certain in Boston, it is like programmed at birth.... you have got to love the Red Sox and Dunkin Donuts.

This is the rock that greets visitors into Hough's Neck. Hough's Neck is part of the South Shore of Boston and my friend Mary lived and raised her children there for many years. Frankly, until I got to know Mary, I never knew Hough's Neck existed. Mary talked about it with me so often that I felt compelled to see it! Finally this July, Peter and his parents took me to visit it. I was thoroughly excited to see Mary's church, neighborhood, her daughter's schools, and the places Mary had described to me over the years. I remember as we were driving through Hough's Neck my mother in law commented to me that I knew it so well! Funny how a place can come alive and seem so real just by hearing it through someone else's eyes! In July, it never dawned on me that eight months later I would be coming back to this same location for Mary's funeral. This is the photo I took today from the car since in my opinion Boston was frigid and grey!

The last funeral I attended was Mattie's in 2009. Now five years later, I can't say that I found comfort in attending this one either. I should explain my reasoning here. Nothing was wrong with today's funeral. It was quite beautiful, well planned, with a beautiful and meaningful eulogy, and deeply moving music. The issue is where I am at. I remember when my maternal grandmother died in 1994, keep in mind this was a woman I was deeply close to. Losing her was traumatic in a way, and yet for me her funeral was actually quite therapeutic. I took comfort in knowing that my grandmother was no longer suffering from her debilitating stroke and would be united with her husband, son, brother, etc. Some how, as a "good" Catholic, the teachings I grew up learning about, believing and practicing, made sense and helped me cope and find some sort of healing with my grandmother's death. Moving forward to 2009..... then I lost Mattie. Mattie's death has caused a massive spiritual overhaul and questioning for me. Am I still Catholic? Do I still believe? The answer is probably yes, but now on a much different level. A level that I believe God can handle, but not a level that most earthly spiritual advisers can tolerate. 

After Mattie endured his cancer battle for 14 months and he died in our arms in the most grueling of ways, do you think I found much comfort in turning to God? In knowing that Mattie was now joined with my deceased family members? This line of reasoning doesn't work with me and still doesn't! So when I hear these Catholic platitudes being spouted off today as it relates to Mary, I have trouble separating out Mary from Mattie. Am I happy Mary is out of her pain and suffering and possibly being reunited with loved one? Definitely. But if my child can get cancer and die, and this happens to FOUR children every day in the US, how do I know that there is a better place after we die? How do I know what I was taught to believe in all these years really exists? Perhaps if you wonder how I can question my faith, then I would have to say that your faith hasn't been tested enough! For me Mattie's death has caused a spiritual quandary or cross roads and proselytizing to me while in this state only further compounds my confusion. 

Toward the end of the funeral today, there was the mention of the importance of raising your own children to love God. I went to a wedding a year ago and heard the same intention. The message in the Catholic Church is sacrament independent! I understand the reasoning, I understand why it is stated, but wow, for a parent who lost an only child this message gets me every time. 

After the funeral today, we went to the cemetery to attend the burial service. While in the car line, I saw these two lone geese. I love Canadian geese and felt this was a true symbolic sight. Geese tend to mate for life and they also are loyal and travel in packs, never leaving an injured one behind. As Mary was laid to rest today beside her husband, I felt this was a visual of the pair reuniting. 



After the burial, Peter and I attended the reception Ann (Mary's daughter) held for family and friends. Over the years, I have gotten to know many of Ann's family and friends. In fact, Ann's Aunt Helen and I email all the time and today I got to meet several of her good friends at the reception. Here is another case in point where I felt like I knew these three women just from how Helen has described them over the course of the past several months. I would have to say attending social events of any kind for me can be real hits or misses for me. This wasn't the case prior to Mattie getting cancer. But now it most certainly is. It takes much more energy for me to engage, feel connected with others, and want to absorb what is going on around me.  

Though today wasn't about photos, Ann's cousin, JP, has become a friend of ours over the years. The joke is he has so many girl friends none of us can keep track. He enjoys socializing with all of Ann's friends and therefore we wanted to take a photo with him. Though JP, in some circles would be considered an adult with special needs, in my book, he really is a very sharp, sensitive, and caring individual. We appreciate each other and as he tells me, he always remembers Mattie. He gets a gold star in my book! 

The reception gave us all a wonderful time to chat casually with each other about Mary and our connections with each other. Toward the end of the event, the little ones in attendance started to perform little skits and songs. As little ones are so good at doing. This is naturally, healthy, and a great thing! I do not think funerals and such events should necessarily be solemn, and certainly for children, they do not and can not stay in that state for very long. Therefore it was wonderful to see them running around, playing with each other, the older ones helping the younger ones, and so forth. But naturally you know what the next comment is going to be for me, don't you???? Seeing this is very, very bittersweet. Why are all these kids running around and mine was cremated and sitting in my living room? Here is the thing, many people in the room can relate to what it is like to lose a parent, a grand parent, a sibling, or a spouse but how many can say they know what it is like to a lose a child? This is one of many things that bonded me with my friend Mary. A friendship that will never be forgotten. 

Friday, March 14, 2014

Friday, March 14, 2014 

Tonight's picture was taken in March of 2009. Sitting next to Mattie was his best friend from preschool, Zachary. Mattie and Zachary were inseparable in school and in fact if you believe in friendship at first sight, then I would say this described their relationship. Zachary was a loyal friend to Mattie until the very end, he would visit Mattie at home and in the hospital and he did not seem bothered by the tubes, IV bumps, and other daunting pieces of equipment that surrounded Mattie at the hospital. A true friend, because I assure you they did scare the average child! Mattie and Zachary had a very active friendship when Mattie was healthy, yet with cancer, Mattie could no longer move around and run. Zachary accommodated and met Mattie on his terms. As you can see they built and constructed a Lego item together that day in the hospital. Legos served multiple roles for us from toys, tools of therapy, a form of escape, and a way to bond and communicate!

Quote of the day: Have you ever lost someone you love and wanted one more conversation, one more chance to make up for the time when you thought they would be here forever? If so, then you know you can go your whole life collecting days, and none will outweigh the one you wish you had back. ~ Mitch Albom



I began my day with a licensure board meeting. I can not even recall how long I have served on the DC counselor licensure board, but it has been over 14 years. It is something that I still love to do and I find it very stimulating and energizing. The board not only creates law, but it enforces it, and regulates the profession in the District of Columbia. As usual, today's meeting did not disappoint!

After the meeting, I had the opportunity to meet with two of my friends for lunch. I really appreciated meeting with both of them, because it caused me to stop moving and to eat. If I stop moving and food is put in front of me, I will eat. But if I am on my own, chances are, I will just lose interest in eating and continue working. Which doesn't do wonders for my headaches. While at lunch today, something that was said, made me reflect on funerals and what they now mean to me. 

I remember going to my first funeral when I was about 11 years old. Coming from a Catholic, Italian background, wakes were popular. Meaning, open casket, and viewing of a dead body. I would have to say the image of my paternal grandmother at the wake still remains with me today. But having an early and direct experience with death, did not cloud my feelings about funerals. That however changed when Mattie died. I remember in my early married life, I would hear my father in law say that flowers are for the living. I made note of it, but did not pay much more attention to it than that. Now, after some reflection, my father in law's casual statement makes much more sense to me. The time to connect, bond, and acknowledge someone's life is not at their funeral. It is when they are living. I get the richer meaning of what he is saying now. 

I searched the internet today, because I am simply curious as to whether parents who lost a child to cancer are transformed by this loss so much so that they no longer wish to attend funerals. Any funerals. I found nothing out there that even touches upon my theory. That isn't to say there isn't merit to what I am saying, it just isn't written about. But I can't be the only one who feels like this, maybe I am the only one who is verbalizing it. Now that wouldn't surprise me! After all, how politically correct is it to say..... I don't want to go to a funeral? I don't want to see a coffin, hear church music, watch people mourn, and the list goes on!!! But unfortunately this list is very real for parents who lost a child. Actually I feel like I carry plenty of my own grief around with me, that I just don't want to see it at a funeral. So I would have to say that venturing tonight to Boston to attend a funeral tomorrow has major ramifications for Peter and I. I am signing off for today. The next time I write to you will be tomorrow night, when I will have returned from Boston. 

Thursday, March 13, 2014

Thursday, March 13, 2014

Tonight's picture was taken in March of 2009. You maybe asking yourself what was going on in this photo? Clearly Mattie was in his wheelchair waiting outside of a door. Next to him was Linda, Mattie's Child Life Specialist. It was a special day on the pediatric floor, because it was the ribbon cutting ceremony for the child life playroom. Though the playroom had been open and operational for months, the official party for the room was in March. Needless to say, Linda understood Mattie perfectly. She knew Mattie needed responsibility and to feel important. So that day, Mattie took photos with many hospital administrators, Geoffrey the Toys R Us giraffe, and also got to the cut the ribbon on the playroom door! It was the highlight of Mattie's day! A day we will never forget. Just one of many special days that Linda gave and planned for us. Which is why even today when I see Linda, a special feeling comes over me. A feeling that I am in the company and presence of someone I trust, someone who is safe, and someone who looks out for my family's best interests.

Quote of the day: The pleasure of remembering had been taken from me, because there was no longer anyone to remember with. It felt like losing your co-rememberer meant losing the memory itself, as if the things we'd done were less real and important than they had been hours before. ~  John Green


This week I went back to my zumba class. I haven't exercised in weeks. Who knows it could be months. I would have to say that the cold weather, grayness, being sick, and massive headaches have produced a rather toxic combination for me. Of course add to that non-stop work. Going to exercise isn't easy, especially when you haven't moved for a while. Yet once I do it, I do feel better. Well maybe not physically for a while, but definitely mentally. It gives me more energy to tackle the day ahead. In the midst of feeling overwhelmed and trying to get my energy back, I feel so grateful to have my friends helping me with this year's Foundation Walk plans. Today my friend Tina mobilized forces to help me with ideas to bring Legos alive at the Walk and my friend Dave helped us connect with a possible honorary walk official. That would be a first for Mattie Miracle. All very exciting, but based on how I am feeling I could not do it without my friends.

Peter is now not feeling well. The problem with all of this is I sprung on him that I want to go to Boston tomorrow night to attend my friend Mary's funeral. Probably not in Peter's best interest. For the most part, I really do not like attending funerals. Unless I know that a friend or family member really requires my presence. In my opinion funerals are NOT for the deceased, they are for who remains. There is nothing I can do for my friend Mary now. There is nothing I need to make amens for, and I do not have to say my farewells, final wishes, or last good-byes. I realize this may not be a popular stance and we all have different view points about such ceremonies and endings. Yet for me, my time with Mary was when she was living and fortunately when Mary could speak I knew how she felt about me and she wasn't afraid to express her feelings. I do think regardless of our age, we all need to hear once in a while that we are valuable, important, and needed by those in our lives and I am grateful Mary seemed to share that philosophy. Even until the end, I would share with Mary how I felt about her and how I viewed her, and don't you know when I did that, it ALWAYS caught her attention. An expression which I will never forget! 

Wednesday, March 12, 2014

Wednesday, March 12, 2014

Tonight's picture was taken in March of 2009. Mattie was in the Child Life Playroom at the Hospital with Peter. He was hooked up to a Wii, and doing yoga of all things. Katie, his nurse, was also in on the action. In a way there was a mini contest going on to see who could do the better yoga pose...... Mattie, Katie, or Peter! Here was the irony in all of this.... Mattie, with all his operated limbs was able to do a great job. He was precise and delicate! Katie snapped this photo of Mattie and sent it to me because I wasn't in the room to observe Mattie in action! Everyone knew I was obsessed with photos, and thankfully I was!


Quote of the day: Funerals, I had decided, are for the living. ~  John Green

Last night, on a Tuesday, the day of the week which Mattie died, I received this special photo. Our friend and hospital administrator at Georgetown Hospital had this very special gift of a Mattie brick in the Hospital memorial garden made for us. I can't wait to see the brick in person next week, but I am deeply honored and touched to see that this brick was created. A piece of Mattie will always be at Georgetown.


I had a busy working day. This is the first day where I have been able to somewhat concentrate, focus, and work. For the past several weeks, given how I was feeling, I was wondering if that would ever be possible again. Frankly I never thought about going back on headache medication again until I went out to dinner last weekend with Mattie's sedation nurse and our friend Debbi. Debbi's motto, while Mattie was undergoing treatment was.... "better living through chemistry." Typically I avoid medications, but when Debbi reminded me of this, I decided to talk this over with my doctor this week. I am really hoping that this new medication, which is designed for epilepsy, gives me some relief.  

I started my day being interviewed for an hour by an undergraduate student at the University of North Carolina at Chapel Hill. She is enrolled in a seminar which is looking at the role of patients and families in medicine. A rather fascinating course if you ask me. But what is even more intriguing is this young lady was asked to write a paper about a disease of her choosing. She was asked to explore its causes, treatment, and the role of family in its care. To my surprise, she selected osteosarcoma. I asked her today why she chose osteo, and her response was she read about it in John Green's book, The fault is in our stars. One of the main characters in this book had osteosarcoma. Fortunately I had the opportunity to read (at least half way through) this book thanks to my 16 year old friend, Isabel, who lent it to me. 

The college student had already perused the Foundation webpage and the blog and we had chatted back and forth by email previously. She came prepared with about 10 questions for our call. The questions themselves were diverse, in that they ranged from..... did Mattie experience any side effects like hearing loss or heart issues from chemotherapy, to what role did art therapy play in his treatment? Naturally while talking about art therapy, which was KEY, I also had to mention child life! Since I write daily for five years and talk often at conferences about Mattie, I am used to answering just about every question possible. However, one of the questions posed to me today had to do with the blog. The question was did I ever have second thoughts about publishing candid material on the blog? In essence did I regret sharing private information about Mattie and myself? 

My answer to her today was NO. It was no for many reasons. First we needed a forum to share Mattie's story with his schools, friends, and family. We did not have the where with all to share the story multiple times in one day. Especially since it changed minute by minute! In addition, I think it is much harder for the story to be kept private when it is a child battling cancer. Mainly because it is so unnatural and people want information and want to help. In addition, I was very cognizant of the fact that Mattie was socially isolated and therefore, keeping people posted about his daily struggle was crucial to muster support. I admit that my blog is different than the average caring bridge page, mainly because I share very personal information and am quite up front about my feelings and thoughts. But I think that is what helped capture people's imagination and attention, and perhaps still does even until today. Writing the blog is a labor of love and it takes some level of courage to share and be candid. But our story is our story and if it helps someone else, then it is worth writing. It is most definitely worth capturing in my opinion, because it chronicles Mattie's journey as well as our own. 

Another question she asked me today was whether Mattie acknowledged being different or transformed by cancer. The answer to that is most definitely YES! But Mattie was six. He couldn't logically verbalize and chat about the subject like an adult. But yet it came out in subtle ways. Such as when he said he was ugly and no one wanted to be his friend. Or when he said he couldn't do things like his friends anymore (like run, play, go to school), but the tell tale sign that Mattie recognized he was different was that he socially isolated himself. Mattie internalized his trauma and became depressed and anxious and as such did not want to see friends and even family. He did not want to hear the phone ring, he did not want to hear Peter and I talk to each other, and basically he wanted to be safely protected and alone within his two by four of a PICU room some days. If I heard someone tell me this kind of information over the phone, I think I would have had some sort of verbal reaction..... the student provided me with none. There could be two explanations for this. One she was overwhelmed by the content she heard or two she just couldn't appreciate how devastating it was to see a six year old shut down on life. Either case, when I do not get a reaction, I stop talking. I stop because I can not invest my emotions into explaining and reliving such horrors. 

Toward the end of our conversation today, we talked about art therapy and child life. All I know is that Mattie and I couldn't have made it without these psychosocial services. Cancer treatment is much more than just the medicine, because in all reality, it is the day to day living that seems insurmountable. What happens when Mattie barricaded himself inside his hospital room and didn't want to see or hear anyone? This had ramifications on him but also on me. For 14 months, I lived on about two or three hours of sleep a NIGHT!!! I am not exaggerating. It wasn't the doctors who were helping me by day, it was the amazing women who checked on me, gave me periodic breaks, engaged Mattie physically and emotionally, and brought me glimmers of hope into what seemed like hell on earth. It is no wonder why Mattie's team of amazing women will never be forgotten by me!

Tuesday, March 11, 2014

Tuesday, March 11, 2014 -- Mattie died 235 weeks ago today.

Tonight's picture was taken in May of 2009. I happen to LOVE this photo that I captured one afternoon while Mattie was outside doing physical therapy with Anna. What you may not be able to tell here was the complex negotiations  taking place between Mattie and Anna. Mattie wasn't in the best of moods and really did not feel up to doing therapy. Anna understood that and was listening to Mattie and yet trying to inspire him by blowing bubbles and encouraging him to want to join along. Anna was one of the special women in our lives at Georgetown. Though she is no longer there, she will never be forgotten. Some people like taking photos of people smiling, and of course I like that too, but I also like capturing candids of emotions and relationships. There was a real rapport between Mattie and Anna and to me this photo captures the care, concern, and understanding between the two of them. 


Poem about friendship.... In honor of my 85 year old friend Mary: 

When we first talked to each other
I knew we would always be friends.
Our friendship has kept on growing
And I'll be here for you to the end.

You listen when I have a problem
And help dry the tears from my face.
You take away my sorrow
And put happiness in its place.

We can't forget the fun we've had
Laughing 'til our faces turn blue.
Talking of things only we find funny
People think we're insane-If they only knew!

I guess this is my way of saying thanks
For catching me when I fall.
Thanks once again for being such a good friend
And being here with me through it all.

~ Rachel Ellis

It seems somewhat ironic that I lost Mattie on a Tuesday, and today, I also lost my friend Mary. I simply do not like Tuesdays! Do you think it is possible to feel deeply connected to someone you have only known for five years? Someone who was a completely different generation from you? Well I don't know what your answer would be, but mine is a resounding YES! I met Mary on her birthday in December of 2008, when she turned 80 years old. Mary and I instantly connected because while her son died from cancer, Mattie was battling it. Of course less than a year later Mattie died, and two weeks later Mary's husband became gravely ill. In reality Mary and I connected over loss. Loss of our sons and loss of her husband. At one point in time, Mary and I spent practically every day together and in some ways, I really do think we helped each other through a very difficult time. In our short but intense five years together we experienced quite a lot and laughed and cried about a lot in between. When I met Mary, she was very social and loved to talk, and that is how we got to know each other quite well. As her neurological disease took over, I slowly lost more and more of my friend with passing each year. That too was also a loss, but at the core, what bonded us together was always there. Therefore, at some point words were no longer needed. That is the beauty of a meaningful connection, a connection that I will sorely miss in my life now.

Mary was the first friend I made who truly understood what it was like to lose a child to cancer, and was open with me about how this impacted her husband, her, and her family's dynamics. In a way, when someone allows you into her life in such an intimate way, it is hard not to feel attached to them. As if they are one of your family members, and yet we are not related in the least. I will always remember our teas together, enjoying cookies and cake (we were fellow sweet tooths), learning about her life in Massachusetts, about her family, rearranging furniture and things in her rooms many many times, and of course laughing over how out of touch her husband's hospice social worker was. When this social worker would visit Mary after her husband died, the social worker was truly perplexed by both of us. She wasn't sure who to help first, me.... who just lost a son, or Mary who just lost a husband. The funny part is neither one of us wanted any part of this woman's help, not to mention condescending attitude.  

This photo was taken at Mary's 50th Wedding Anniversary Party in May of 2009. I remember this day as if it were yesterday. Mary received some beautiful roses from our friend with the same name, Mary. This photo means so much to me, that I framed it a long time ago and it sits on my dining room break front. From Mary's perspective, she referred to me as "her angel." She may not have spoken to me at the end of her life, but she always opened her eyes for me and tracked my voice. To me that was a gift, the gift of knowing that my presence mattered. Something I shall always cherish! I treasured and valued our friendship for five years and with Mary's passing a void is definitely left in my mind and heart. 

Monday, March 10, 2014

Monday, March 10, 2014

Tonight's picture was taken in October of 2006. Mattie was four years old and a character as you can see! I asked Mattie to get dressed for the day, and since I did not specify that he had to take off his pajamas first, this was the resulting product! Quite the look no? 



Quote of the day: Your body is away from me but there is a window open from my heart to yours. From this window, like the moon I keep sending news secretly. ~ Rumi

While working at my desk this morning, I had a visit from our resident falcon. There is something about this fellow that intrigues me. He is checking out my sparrows who come to my feeders, but so far I haven't seen him chase and catch one. Thankfully!

I went to visit my doctor today and we talked about my headaches. She has followed my case for years and I was happy she had some medications to recommend. I am hoping it helps but am also happy that she wants to see me in a month to find out and talk about next steps. All I know is the pain is not tolerable and makes every aspect of living very challenging. Obviously as many know, when your head hurts, you also can't eat, concentrate, and have no energy to move around.  

This evening, Peter and I hosted our Foundation Walk Planning committee meeting at our friend Tina's home. Since the majority of our volunteers live in Alexandria, it is important that our meeting be in a central location. I was very grateful Tina allowed me the opportunity to use her home, she helped me host the meeting, and I really think it was our best planning meeting yet. Thirteen volunteers came, we sat down and had dinner together, and brainstormed this year's fifth anniversary Walk! The ideas generated were fabulous and there was great rapport and camaraderie at the table! 







Peter and I know we can not run the annual Walk without the amazing volunteers that we have! Of course no meal would be complete without desserts! It was a wonderful way to spend the evening and I feel like I have some great directions for tweaking this year's event!!!

Sunday, March 9, 2014

Sunday, March 9, 2014

Tonight's picture was taken in August of 2008. This was Mattie's first month in the hospital getting chemotherapy. With each hospital admission, I worked hard on decorating Mattie's room with the various gifts that his care team gave him. As you can see Mattie was surrounded on that admission by stuffed animals. Two of which were Scooby Doo animals sitting on his bed. Mattie loved Scooby Doo, and when a real life Scooby Doo walked into his room that day, he was simply besides himself with joy. 


Quote of the day: It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body. ~ Marcel Proust

I do think illness is a "creature of a different kingdom." Some illness are understood more than others, but those illnesses that seem chronic and debilitating are less appreciated. Especially when NO physical symptoms are seen. When I had the flu or sinus infection, people could relate to those issues. They are more common. But when I talk about debilitating headaches DAILY for 12 years, that is not only hard to wrap one's head around, but it seems impossible. Perhaps I am exaggerating. All I know is that the flu I had in February, has triggered some incredible headaches. Headaches that make functioning almost impossible. 

Tonight's posting is short because my eyes and head need a break from the computer. Thankfully I head to the doctor tomorrow and hope to find some temporary relief. Without it, I just don't know how I can get anything done, which provides even more stress to my head and daily life.