Saturday, September 26, 2009

Saturday, September 26, 2009

Tonight's picture features my favorite superhero, Super Mattie! Mattie went to a superhero birthday party for his friend Alex, and Mattie truly got into the spirit of things.

Poem of the day (Thanks Charlie!): Anger by Joanetta Hendel

Don't tell me that you understand

Don't tell me that you know

Don't tell me that I will survive

How I will surely grow

Don't tell me this is just a test

That I am truly blessed

That I am chosen for this task

Apart from all the rest

Don't come at me with answers

That can only come from me

Don't tell me how my grief will pass

That I will soon be free

Don't stand in pious judgement

Of the bonds I must untie

Don't tell me how to suffer

And don't tell me how to cry

My life is filled with selfishness

My pain is all I see

But I need you and I need your love...Unconditionally

Accept me in my ups and downs

I need someone to share

Just hold my hand and let me cryAnd say, "my friend, I care."

Last night, I received a lovely e-mail from Karen’s, my lifetime friend, mom. Mrs. Fischer wanted to write to me to assure me that Mattie will never be forgotten and from her perspective, I have already created a wonderful document that celebrates, honors, and memorializes Mattie’s life. What is it? The blog! I am not sure why I hadn’t thought of the blog this way before, but upon reflection, she is 100% correct. Certainly the blog covers only a year of Mattie’s life, but it is within the blog that I reflect on his history, our dynamics as a family, and of course, Mattie’s amazing personality, courageousness, and strength as he fought Osteosarcoma. There were some nights that writing the blog was harrowing, especially after a long day in the hospital, not to mention long nights. But I always felt it was important to write. To get Mattie’s story out to his family and friends, but to also capture the essence of Mattie. In all respects, Mattie was an amazing child, who suffered in ways that even the written word doesn’t do justice to. Of course, in turn Peter and I suffered as well, and this feeling of helplessness and inability to save your child will be forever etched in our minds.

Last night, Tanja sat with Ann’s dad at the assisted living facility, while Ann and I went back to her house and had a family dinner with Peter and her children. I have been very hesitant to be around children since Mattie’s death, but this is something Ann wanted to do last night and I was compelled to join her. Ann’s children did not make me feel awkward in the least, and I suppose the beauty of children is they live in the moment, and appreciate it for what it is, and not what it isn’t. The sharp contrast between my home and Ann’s house is the noise. Without Mattie, our home is now eerily quiet, toys surround us, but there is no one to play with them, we have kid cups, plates, stuffed animals, and children videos everywhere, and yet there they all sit. Quiet, untouched, and forgotten. Meanwhile at Ann’s house, there is life, laughter, conversation, children dancing, and singing, and I find I sit there and absorb it all in and am not sure whether it is something I can handle and love, or whether this pains me because it reminds me of my childless life.

Today, Mattie’s school, SSSAS, had their annual Fall Festival. Peter went with Ann, while I stayed with Ann’s parents. I give Peter a lot of credit for being able to go to back to Mattie’s school, and not only that, but to be surrounded by children. In many ways though being with Ann is helping both Peter and I to engage back into the world, on our own terms. I do think Peter is doing better on that front than I am, most likely because Peter is much better in tune with his feelings than I am on the issue of Mattie’s death. As our week with Ann comes to a close, I land up being thrilled that we were able to help her and Bob in some small way, but on the other hand I am cognizant of my fears that I have about leaving her home and moving back into mine. I worry about what the future looks like for Peter and I without Mattie, and being away from our home enabled me to retreat from the dark inner world that we are left to live in.

Ann and I spent a good chunk of the day together in her parent’s room. Her dad continues to decline and we can see him slowly starting to slip away. Hospice came over to visit with him today, and assess his status. I have experienced Mattie’s death recently, but Sully’s death process is looking quite different. Mattie started to decline, and the decline progressed rapidly from one day to the next. But Sully has good and bad days still, which makes you uncertain how long he will be with us. Nonetheless, unlike with Mattie, Sully can talk about his fears and he can also begin to start saying good-bye to the two priceless women in his life, Mary, his wife, and Ann. Being able to say good-bye was something I had wished I had with Mattie. Mattie lost ground so quickly, there was never this time to talk and say I love you. Sure Peter and I told Mattie, but the conversation was one way. I have to believe he heard us, which is one of the main reasons he refused to give up toward the end without serious medications on board to relieve his pain and suffering.

In the midst of great sadness though, we had times of laughter today. Mary knows I am working on a slide show for Mattie, and she was eager to see the pictures I have put together so far. So I showed her about 100 pictures, and we talked about each one. Mary and Ann also shared an album of theirs with me, and I find the sharing of thoughts, memories, and fun times enable me to pause and appreciate the friendships and support that are around me. In a way, being surrounded by their friendship makes me feel safe and gives me the courage to wake up each day and accept whatever feelings or lack of feeling that arises.

I would like to end tonight's blog with three messages I received today. The first message is from Karen's mom, my lifetime friend, wrote the following to me, "I am sending you my love and condolences – and wish that I could say or do more to help you heal. One thing comes to mind-- perhaps I might allay your fears that Mattie will be forgotten. Rest assured, he will not be. Your blog has already memorialized Mattie. No one who has faithfully read it can ever forget him or you. Through the blog you have engaged us in your daily struggles and feelings. And through the slideshow we have seen the Mattie with his little boy grin, glowing with happiness and love. You have memorialized the whole Mattie-- that creative, warm and tender little boy in his brave battle against a frightful disease and the spirited, active little boy before osteosarcoma shattered your hopes and dreams for him. I never met Mattie, but I will always remember him."

The second message is from my friend and colleague. Nancy wrote, "I, like many, continue to read your blog each day. It is my way to stay connected to you and let you know that I share your pain. It is impossible to feel what you are feeling, yet, grief experienced has a way of uniting new members. I am taken with how many are reading your words and want you to know that even if you decide to end the blog, Mattie will have touched so many lives and given so much in his years on earth, that a part of him will go on in all of us. I know that you didn't sleep well last evening yet I am glad that Peter and you are able to be with Ann and her family for a while. It doesn't change the circumstances, it just makes the reality a bit different. You don't have to be bombarded with all the visuals, especially the medical stuff, as your body needs to be able to rest. I know that your mind never rests and that is to be expected. Charlie hit the nail on the head with her statement about this being a PTSD reaction. It takes a long time for someone to heal from any trauma, but, the death of a child has to be the worse. I know that you understand, logically, that the two of you, along with the wonderful medical support, did all that you could do to make Mattie as comfortable each day. The three of you had to cram so much into so little time and did it admirably. I am glad that so many are still surrounding you and you are having a chance to share these wonderful memories and happier times. They, hopefully, will support you during the hard times. Have a cup of tea, rest, and remember to take care of yourself, just a little , as you take care of others!"

The third message is from my friend, Charlie. Charlie wrote, "Reading Friday's blog I am struck by your comment that it was hard to move. I expect you are thinking, I am not on 24 hour duty now; I can sleep and eat, why am I so tired? Grief is exhausting. It uses an enormous amount of emotional energy and drains you physically. Do what you can to care for yourself and Peter; try to find your way to a routine of some sort that will help your body cope. Shock depresses the central nervous system and makes it hard to move, to do the normal life sustaining things (eating, thinking, working) that we are used to do. Take it slowly, give yourself time. I know you are afraid Mattie will be forgotten, but I can tell you he will not. I don't pass a toy store without thinking of his lego projects; a book at the library about spiders brings thoughts of Mattie's bugs, etc.I am sure your family and other friends are the same way. For today I wish you a small space of peace."

Friday, September 25, 2009

Friday, September 25, 2009

Today's picture features Mattie in his 2006 Halloween costume. Mattie wanted to dress up like Patches, his cat. Patches is a calico cat, and Mattie and I went to the craft store to pick out the materials to make the ears and the patches. It was one of my favorite costumes, mostly because Mattie and I designed it together.

Poem of the day (Thanks Charlie!): Who Am I? by Carol Sharp

Who am I know that you're gone?
I've asked this question so many times it seems
But the answer is not available - Not even in my dreams
Who am I since you went away
The days go by; time won't stand still.
I wish it would
But it's against my will.
I feel as if I am fighting
To keep my head above water
It is horrible to go on without you....
Never to hear you call me "Mother"
Who am I without you in my life?
Reminders of you everywhere I turn
Are supposed to comfort me,
But it's you for whom I yearn
My body feels so empty
And the void's so hard to bear,
I plead to have my son back;
I have so much to share.
Who am I when I can't care for you anymore?
I miss you at noon when we'd have lunch together.
That was our time to visit
And nothing else seemed to matter.
My heart aches, because
I can't fix you those special dishes
You always bragged on my cooking
And rewarded me with kisses.
This rocky road of grief
Has many ups and downs
I'm trying to travel it, falling
But still keeping above ground
The road is long and treacherous
I know it has to be
Because deep love, joy and laughter
Are the legacies you gave to me
With a future of despair who am I?
I know who I am.
I am still your mother,
Your comrade and your friend.
You may be gone from me
But our love continues on.
No one can take that from me,
It's there from dawn to setting sun.
I'll miss you and I'll want you
All the rest of my life.
I am the lucky one, God gave me a son.

It was a rainy day in Washington, DC today, and the gloominess seemed to match how I was feeling internally. It was harder to get up this morning, harder to focus, and harder to accomplish things that needed to get done. I met up with Ann today at her parent’s assisted living facility. Her dad had a very rough night, and she spent most of the night there. I remember that feeling of being up all night, of being emotionally and physically wiped out, and in dire straits. In those times, Ann would somehow come into Mattie’s room and try to breathe some life into me. So this afternoon, Ann and I left Sunrise and had lunch together. Sometimes a change of scenery does help tremendously, even though you know what lies ahead of you later in the day.

Ann and I talked about so many different things, which can be challenging for anyone listening to me, because I can cover multiple topics at one time. But Ann never skips a beat and is able to keep up with me. While chatting with her, we seemed to be surrounded by children at the restaurant, particularly cute little boys running around all over the place. Of course my mind couldn’t help but drift to my cute little boy, who at that age was doing the exact same thing. It is funny how a sight, sound, or fragrance can bring you back to a point in time instantly.

While having lunch, we happened to bump into Margaret as well. She came over to join us and then Margaret took me back to the assisted living facility, and we both sat and chatted with Mary and Sully. Thank you Margaret for all the visits this week, for the goodies, and of course the support.

Later in the afternoon, Mattie’s technology teacher from SSSAS came by to visit with me. As many of my readers may recall, Mary was devoted to Mattie this year. She would visit him routinely in the hospital, work with him on his technology skills, would play and inspire his creativity on all sorts of projects. I was thrilled to hear that Mary wanted to help me put together a slide show of Mattie’s life for the celebration of life ceremony. Somehow picking out photos for this slide show has been an impossible task for me. Mary and I talked about this, and she got my mixed emotions regarding this RIGHT AWAY! She figured it was impossible for me because I wanted it to be perfect. I wanted the video to capture the life, energy, and spirit of Mattie, and if I did not do it right in my eyes, that this would make me feel like I failed Mattie somehow. That sums up my problem perfectly. Mary and I brainstormed the video, what would make it meaningful and powerful, and I am happy to say that I feel like I have a good direction now. Thank you Mary for meeting today, for your willingness to take on this project, and being so instrumental to Mattie’s life. I think your connections with Mattie will be vital as we try to capture his courageous and contagious spirit. Mary is passionate about this project, and I so enjoyed hearing her insights. As Mary kept on talking, I began to cry, and I truly believe a part of me was so deeply moved by her generosity of time, appreciation of Mattie, and her willingness to bring to life my vision of this incredible boy.

I would like to end tonight's posting with a message from my friend, Charlie followed by a song. Charlie wrote, "Vicki, I've been reading about loss and grief and what I have gleaned is that the initial response to death is shock and and disbelief that one's child is no longer here. The feeling that one is in a horrible dream but cannot awaken is something described by many. The loss of a child means not only the deprivation of being without one's beloved child but also the loss of aspects of themselves much as you've been saying in the blog. Where is my identity as Mattie's mom? Am I still a mom? Will I still have a relationship with friends who I've come to know because they are parents? Inability to cry, to plan a service, to make decisions are all normal reactions faced by virtually every grieving parent. All I can say is to be patient with yourself and Peter, give yourselves time to recover from the shock and then to grieve for the multiple losses Mattie's death has created in your lives. What you are doing now, reaching out to Ann and her parents, is a wonderful thing and a way to repay her help to you through Mattie's illness. Find those who will listen, who will just sit and really listen and I think that in time, when you are ready, you will find your way to express your grief. I continue to hold you in my thoughts and prayers."

One of Mattie's fantastic HEM/ONC nurses, Tricia, sent me this song today. It is "Who'd you be today" by Kenny Chesney. She says it reminds her of those she has lost in her life as well as Mattie. Thank you Tricia for continuing to walk this path with us!

http://www.youtube.com/watch?v=WaN2o_uOF_I

Thursday, September 24, 2009

Thursday, September 24, 2009

This is a picture Peter snapped of Mattie and I in Florida. Mattie found this big palm frond and wanted to take it home with us to Washington, DC. Naturally I did not take the whole thing, but we did take a piece of it home and Mattie actually shared this piece of palm with his kindergarten class.

Poem of the day by David Harkins (Thanks Charlie!)

You can shed tears that he is gone

or you can smile because he has lived.

You can close your eyes and pray that he'll come back

or you can open your eyes and see all he's left.

Your heart can be empty because you can't see him

or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday

or you can be happy for tomorrow because of yesterday.

You can remember him and only that he's gone

or you can cherish his memory and let it live on.

You can cry and close your mind, be empty and turn your back

Or you can do what he'd want: smile,

open your eyes, love and go on.

Despite being away from our home, I had trouble falling asleep last night. I went to bed at 3am, and was up by 8am. I heard Ann’s children this morning, as they were getting ready for school. The sound of excited and energetic voices, quick movements, and simply put “life” fills Ann’s house. As I sat in bed listening to all of this, a wave of sadness hit me. My home is no longer like this, and won’t be like this ever again. Children have a way of breathing life and perspective into the darkest of circumstances. If you doubt this statement, then I invite you to spend some time at the Lombardi Pediatric Cancer Clinic. There you will see children daily who are fighting cancer, are exposed to toxic chemicals, and yet despite all of this, play, and engage with each other. It is almost as if the disease can’t hold back their inner joys and happiness.

Peter and I had a chance to work on some details for Mattie’s celebration of life ceremony and reception. It is very hard for Peter and I to even think this through, and I find I am putting a great deal of pressure on myself regarding this event. I feel as if this reception and ceremony are honoring Mattie and his incredible life, and therefore, they need to be something special. Is it possible to do Mattie justice during such an event? I don’t know, but when I am in a quandary over something, I sometimes become paralyzed and unable to move forward and plan appropriately. I worry that Mattie’s memory will be forgotten in the hearts and minds of those around him, once the funeral is over. In part, this could be why I am procrastinating with these plans, I don’t want him to be forgotten, and I most certainly am not ready to come to any sort of closure or acceptance of Mattie’s death.

I had lunch with Ann today in her parent’s room, as we were awaiting the arrival of a new bed for her dad. Exchanging medical equipment is NO easy task. In fact, we are still having a hard time getting the company in question to pick up Mattie’s oxygen tank and other supplies from our home. It is ironic the skills and insights I have picked up this year by caring for Mattie. Peter and I have been forever changed, and we just know how certain things operate, things, which require an inordinate amount of patience, patience that you DON’T have when you are tired, worn out physically and emotionally from caring for a loved one. When I was caring for Mattie, I was too absorbed in the daily grind to even be aware of the insensitivities of the health care system (though I did report MANY), but as I try to help Ann, I can see just how ludicrous all of this is.

Tanja, Ann, and myself were quite a team today as we helped to switch Sully’s beds and reorganize the room a bit to accommodate this new addition. Tanja commented to me that my PICU training has come in handy. I think she is right. I have learned to organize things in VERY small spaces, and I can do it quickly. After all, Peter and I would move in and out of PICU rooms weekly. There was NO time to dilly dally around, and yet we wanted Mattie’s room to always look fun and alive. I am sure the PICU staff got a kick out of Peter and I with our movable boxes and bins of decorations. But it was what we needed to do to survive 13 months of torture. Nonetheless, when I sit back and evaluate things, I am left with the conclusion that Mattie taught Peter and I a great deal about medicine, nursing, health care, and advocacy. These are painful gifts, but gifts that enable us to work effectively with almost any health care worker and provider.

This afternoon, Mary and I had the opportunity to sit together and look at the wonderful 40th anniversary photo album that Ann created for her parents. When you can learn about someone’s past, and someone wants to share this with you, it is a very special and almost sacred time. Mary and I looked at her wedding pictures, as well, and she relived what that day was like for her. Mary’s 40th anniversary album was truly touching, and one thing I clearly saw jumping off the page was that these two people are very loved and have spent their life caring for others rather selflessly. In the album were messages from friends and family. One of the messages happened to be from Ann’s brother, who passed away. Mary had me read this message multiple times, and was deeply moved and happy to have his words on paper. Of course, based on my circumstances, I couldn’t help but imagine how powerful hearing your deceased son’s words are, and I wish Mattie had been old enough to actually write, so I could reflect on his writings.
This evening, Margaret (my friend and Mattie’s first preschool teacher) came by to say hello, and dropped off more goodies for us. Mary was hoping to see Margaret today as well, and I am happy Margaret could visit with Mary while she was having dinner. Eating alone is never a good feeling. As I sat with Sully today, I naturally can’t help but think about Mattie. I remember someone at Georgetown telling me that death is natural, but that there is nothing natural about watching the process of death. So true, and it seems to me, as you sit and watch someone die, you can’t help but be flooded with memories of that person’s vibrant life and wonder about your own life and its meaning.

Charlie wrote, "It sounds like you are in psychic shock. When people survive a bad accident they often react outwardly in a very calm way; often they say they feel nothing inside. Then you see days or even weeks later that they shake and they cry. The grief, the pain and the loss are there; it may be that it is too soon for you to process it and your subconscious is protecting you from feeling too much at one time as it can be completely overwhelming. This is not an unusual reaction to intense trauma.I would compare what you went through this year to life in a war zone and you living with your own version of medically induced PTSD. I think that is also the reason for you hearing Mattie call out to you in a way that signals he needs your help; that happened so much that your own internal filter tells you even in dreams that if Mattie is calling out to you, he must be in pain or afraid. I hope that Mattie can come through to you somehow and that when you receive it, you do feel he is now past the pain and able to send you a picture of himself at peace."

Mattie's "big brother" and favorite Georgetown CT tech wrote, "Hopefully your night was a well deserved restful night. I am sure that it wasn't but I do hope that someday you will be able to. I am writing this morning because I wanted to give you a different outlook on Mattie. I do realize that it is just my thoughts but I believe this will put a much needed smile on your faces as well in your hearts. Yesterday after I read the blog, first let me say that I think that you and Peter are doing a awesome job helping Ann with her parents and she couldn't have found more responsible and caring people if she had designed them herself or for that matter had asked Mattie to design them you guys are so amazing and I am truly grateful for having been as important to you as you are to me but after reading the blog I was looking at the pictures as they danced across the screen and I realized that just about every picture of Mattie is outside and as I started to really ponder on this I was reminded that everything that GOD created first was outside starting with the sky trees water birds miles of green pastures the of all that is pure and even the gentle breeze that wraps its loving arms around us and with that thought in mind I realized that GOD uses Angels to talk to babies and although Mattie was very smart for his age he was just a baby so in my mind and from the depth of my soul I felt as if this is why my little brother enjoyed being outside as much as he did because he could hear the Angels talking to him and could feel GODS presence which made me a little better about Mattie being called home to continue his work in heaven. I would like to believe that he is showing all that are looking his many skills even down to him being as loving as he is. Although I know that the issue of death is not mine to worry about it is still very hard to embrace this truth. I pray that someday your souls can rest with Mattie's untimely death but when only time will tell but I do hope that the pictures of Mattie being outside and in the presence of GOD and his ANGELS help."

Dr. Kristen Snyder, Mattie's wonderful oncologist, wrote, "14 days...twenty thousand one hundred sixty minutes...I know you are missing Mattie in everyone of those minutes. Lately, as I sit at work, or get dressed in the morning, a song or a thought or a line from a poem will crawl into my head. I think, perhaps, it's Mattie. He used enjoy grossing me out with his toe cheese. Do you remember that Vicki?? He loved it. He would get the biggest kick out of sticking his toes in my white coat or on my black pants. It makes me smile to think of this (still gross, mind you). Now, he is sticking these thoughts in my ear (probably again with his toes). Today, he stuck this song in my ear...and maybe he is asking me to "tell my Mother, it's okay, because you measure it in love!"

http://www.youtube.com/watch?v=_tCd7SKBDYg

Wednesday, September 23, 2009

Wednesday, September 23, 2009

Tonight’s picture captures Mattie’s first day of Kindergarten. Before he left our home to head to SSSAS on September 5, 2007, I snapped a picture of him. I thought he looked so cute and grown up in his school’s dress code. We were happy, excited, and scared on that day, because I wasn’t sure how Mattie would adjust to a full day of school. Turns out he adjusted just fine and loved SSSAS.

Tuesday night, I ended up going to sleep before 3am. That was a significant change for me, but of course too soon for me to say that I am breaking my toxic PICU sleeping pattern. I am finding helping Ann keeps my mind quite busy, which for me is a good thing. It is quite nice to be staying in her house, and to be getting a temporary break from the memories that are stuffed inside our home. In a way, I feel like I am on a retreat. Not that I don’t carry Mattie’s death with me every second of the day, I most certainly do. I live and breathe this loss, but being able to assist such a special family helps me feel connected to this world, and to some extent gives me a purpose. If I wasn’t helping Ann with Mary and Sully right now, I think my situation would be much more complex and grave.

I miss Mattie greatly, but I also am very aware of my lack of emotions over his death. I range in how I feel and how I interpret my true inability to cry and process things. On one hand I feel confused by this reaction, but then on the other hand, as a mental health professional, I know this is very normal. Grief doesn’t look the same for everyone, especially immediately after a traumatic loss. So my shock and numbness is understandable, and I must come to peace with where I am. I can’t push myself to feel something I am just not ready to feel or face.

This afternoon, while I was with Mary and Sully, we were visited by Margaret (my friend and Mattie’s first preschool teacher). Margaret spoiled us with chocolate cake and brought me a few other goodies. We all had a nice conversation together, and I was telling Mary and Margaret, that I just feel nothing now. I don’t feel pain, I don’t feel sadness, I don’t feel anger, I just don’t FEEL! For those of you who know me well, know that I can always be counted on for one thing….. and that is to be able to put a description to how I am feeling, with emphasis on feeling. I usually feel everything, but now I am so grief stricken, my mind and body are unable to feel. Which would explain how I operate on a major lack of sleep and with very little food. Food no longer tastes good or is of interest to me, nor do I digest it well. Thirteen months of intense stress are catching up with me and are being expressed in all sorts of ways. So I have come to appreciate where I am now with Mattie’s loss. I am trying not to question it, but instead accept it and allow myself to feel or not feel whatever I need to, in order to survive one day into the next.

While I am spending time with Mary and Sully, Peter is helping Ann with her children and other chores she needs to get done during any given day in addition to working on the foundation. I know that for Peter too, feeling useful and helping Ann is therapeutic. Peter is somehow able to interact with Ann’s children, and children in general, without breaking down, and I admire him for his ability to do this. I am not saying it is easy for him, but I on the other hand, know I am NOT ready to see Mattie’s school or be around a group of children.

Today, I sat down with Ann, as we are trying to organize things for Mattie’s funeral. She started to help us with ‘to do’ lists, and as Ann knows seeing what I need to do on paper for the funeral is not easy for me, yet must be done in order to accomplish the things I want for the service and reception. I guess a part of me is not only in denial, but I feel that if the funeral doesn’t happen (which of course is illogical) then perhaps I don’t need to really say good-bye to Mattie. It is funny how the mind works and desperately tries to rationalize away such great hurt and pain.

Ann’s mother is 80 years old, and despite not being in good health, she has enough where with all, to know how I am feeling, or not feeling, and today while I was talking to Margaret, Mary was actively listening, smiling, and reassuring my feelings. In a way, Mary and Sully just know where I am at, and words are not necessarily needed for them, because they too feel the great pain of losing a son. In a way, being understood, is a powerful force, which I clearly appreciate and accept as a gift.

I would like to end tonight’s posting with a message my mom sent to me today. My mom wrote, “I was profoundly affected by my awareness that today marked two weeks that Mattie passed from our world. I could not help but reflect on how much life has changed since he is no longer with us. Simply put, life was beautiful when Mattie was with us, alive and healthy, inspiring us to see familiar things anew through the eyes of his creative, sensitive, and limitless imagination. Everyday seemed perfect, nothing seemed too challenging, and his joy, laughter, and zest for life made optimists of all of us. It was a vision of life through rose-colored glasses that focused on Mattie’s magical ability to creative exciting moments for us to treasure as we watched him grow up and develop into a loving, caring, and insightful child. In our hearts we always believed that his future would be bright and that his happy childhood was a precursor to a life ahead filled with many milestones for us to celebrate as his future unfolded. When cancer took Mattie from our midst, we suddenly confronted the loss of his physical presence in our daily lives, and it felt as if “our sun,” the center of our “universe” had been taken away from us. Life as we knew it would be forever be bitter-sweet! Sweet because we still feel blessed to have had Mattie in our lives for seven memorable years. Bitter because Mattie was taken from us forever, by a vicious, unforgiving and deadly disease for his time. The sadness that resides eternally in our hearts is a testament to our pessimistic understanding that life now without him could never be the same!”

Tuesday, September 22, 2009

Tuesday, September 22, 2009

Tonight’s picture is another favorite of mine. You can see Mattie and I smiling at each other on the couch, but it is the sweet and loving way he was looking at me, that remains forever in my heart. I always look at these pictures and I am struck by just how much we looked alike.


Two weeks ago today, Mattie died. This vision of his death is still very vivid to me. In fact, I will never forget the fact that he did not want to let go and leave us. It took Propofol, a strong intravenous form of sedation, to help him slip away from us. The process of his death clearly illustrated to me his great love for us as well as our devotion to him. It continues to be hard to accept that we are living a life without our son and in turn all the aspects of life that come with raising a child.

This week, Peter and I are visiting with Ann and are staying in her house. Dr. Bob is out of town at a professional conference, and we decided to try to support Ann as she is balancing three children and the full time care of her parents. Peter and I are both committed to helping Ann and value her friendship, and in fact, removing ourselves from our home right now is actually very therapeutic. It is almost impossible to be surrounded by Mattie’s things and his ever presence in our home engulfs us. At times I am okay with this, and at other times, it becomes so overwhelming and brings about intense sadness. Mattie’s things remind Peter and I of what and WHO we are missing, how are lives have changed, and how lonely we are. Our family dynamics have changed, and our main purpose and focus in life have been striped away from us. So how do you recover from this? I don’t know!

When I woke up today, I glanced over at my desk, which is in our bedroom. On the desk sits a lovely 3-D elephant puzzle (therefore it stands up like a statue) that Mattie received as a gift from a colleague of Peter’s. I love this elephant puzzle because it features a mother elephant with her child. Mattie always loved playing with this puzzle and talking about it, because it reminded him of us. When I looked at the puzzle this morning, something was wrong. The mother elephant was missing a piece of herself, but the baby was intact. I guess I look at the world around me now and desperately search for signs and signals about how Mattie is doing, or how this loss is affecting me. I thought today’s picture in front of me was so accurate. Mattie may be at peace and found his wings perhaps, but like this mother elephant, I am not intact, a large piece of myself has been severed off. So this is how I started off my day.

I packed the things I needed to stay at Ann’s house this week, and then headed over to her parent’s assisted living facility. Ann has been having a very difficult time with Hospice, and I am truly amazed by the insensitivity, incompetence, and sheer lack of concern this particular Hospice group has for its patients and more importantly for the family members of these patients. Ann has made formal complaints, Dr. Bob (her husband, and Mattie’s surgeon) wrote a formal letter, and today, I called the executive vice president of clinical services. Needless to say, I continue to be thoroughly disgusted by the lack of response or timelines to address some major issues and oversights. I know that caring for someone who is ill and dying is HARD enough, but add on top of it the challenges of managing people responsible for the care, and it is a recipe for disaster.

While visiting with Mary and Sully (Ann’s parents), Margaret came by to visit. Margaret is a friend and also Mattie’s first preschool teacher from Resurrection Children’s Center. Margaret brought Mary a beautiful rose plant and some lovely pastries. We all had a good time chatting, and told stories about Mattie, and reflected on the kind of child he was, what he loved to do in the classroom, and what a solid and loyal friend he was. Mary talked about her son as well, and Sully was listening and very engaged to all three of us women chatting. He chimed in a couple of times to the conversation. But here is the thing, watching this dynamic today only proves to me the importance of human interaction. I saw Mary and Sully come to life as we were talking and making a human connection. I have no doubt we need all the drugs and technology of modern science, but we also can NEVER discount the vital nature of the human spirit and what influence that can have on one’s physical condition.

While Margaret was visiting, Tanja (a fellow SSSAS mom and friend) also stopped by. Thank you Tanja for the wonderful ice cream and my favorite tea. Tanja has been supporting me all year, and her support just continues even after Mattie’s death. So it was a day for me in which I was surrounded by caring people, who didn’t push me to express things I am not ready to feel or elicit yet. Thank you!

Monday, September 21, 2009

This picture was taken of Mattie when he was four years old. It was a hot summer day, and he insisted he wanted to take a bath in the kitchen sink. I tried to reason with him, but in true Mattie fashion, I knew I wasn’t going to win this battle. He thoroughly enjoyed being in the kitchen sink. After that bath though, neither of us looked at the kitchen sink the same way.


Today was another glorious weather day in Washington, DC, full of sunshine. As I opened up our front door, there was enough of a breeze to cause the wind chimes that Mattie gave me for my birthday to be blowing. In fact, since he gave them to me back in July, I had yet to hear them make a sound. But today, they were singing away. At first I did not recognize what was making that sound, and then I had Peter go out on our deck and investigate. Sure enough the sound was coming from Mattie’s chimes. This gave me great pause, because I took this as a sign that Mattie was trying to communicate with me. He loved those chimes, and would always check in with me to see if I thought they were special too. As I always told him, because they came from him, they will always be special to me. The sound they made today was soft, delicate, and yet so melodic. I will always remember the line that Jimmy Stewart delivered in the movie, A Wonderful Life. In essence Jimmy Stewart’s character, Mr. George Bailey said, “every time you hear a bell ring, an angel gets his wings.” Well today, in my mind, my angel got his wings. I have no idea if Mattie created them himself or fought over the exact size he wanted, but nonetheless, I needed to hear those bells today.

I had a very difficult night that somehow ran into the morning. Last night I started to look at pictures of Mattie, and that triggered a flood to tears. In fact, Mattie’s preschool director, Kim, has a daughter who sent me a beautiful song that reminded her of Mattie. As I played it last night, I concurred whole-heartedly with Caitlin. Between the song and the pictures, I ended up in tears, and I picked up right where I left off last night this morning.

Peter was on a wild goose chase today with Montgomery County, MD. Back in March we received an erroneous parking ticket. Mind you, I never parked my car in a public lot in Montgomery County because I was in the Lombardi Clinic with Mattie getting an infusion of MTP on the day in question. Nonetheless, it was the principle of the matter, we paid the ticket and late fee (since we never knew about the ticket until we received the late fee notice of an upaid parking ticket, a ticket we never received) back in April and of course requested a court date to contest the ticket. So after some delay we contested the ticket today, and of course won. Thankfully the Lombardi Clinic wrote a letter on our behalf verifying that I was in the clinic on that day. But what a reality check only 13 days after Mattie’s death.

In fact, the judge and others in the courtroom today were listening to Peter's not guilty plea and the case he was making, and after the judge dismissed the case, he asked Peter how Mattie was doing (mind you the 200 plus people in the traffic courtroom could hear all of this). When he said that Mattie had died 13 days ago, Peter said every one in the courtroom got very upset. This does not surprise me, as seven year olds are NOT supposed to die.

Peter and I took another walk outside today and had lunch together by the water. We are enjoying just sitting still, watching the ripples in the water, and sometimes talking, but other times just being in peace and reflection and in silence. We stare at the water, at Roosevelt Island, and anything and everything that happens reminds us of Mattie and worse, reminds us of both memories gone by as well as the things both present and future that we have lost.

This afternoon, I had the opportunity to visit my dear friend Junko who was in the hospital. Junko and her husband, Tad, have been so incredibly supportive of me this year. To refresh your memory, Junko is the SSSAS mom and friend who would come to the hospital and give me a back massage during her visits. When a dear person like this isn’t feeling well, I do stop whatever I am doing in order to see how she is doing. I find through all this tragedy that I have found the true beauty of friendship. It just saddens me what I had to experience and live through in order to clearly see the love of people around me.

We would like to thank the McCleary family for a wonderful home cooked dinner. Also thank you for the lovely card, we truly appreciate your support. We want to thank you all for the beautiful e-mails and cards, and know that we truly value your care and concern for us during indescribable and horrific time. I still can’t believe that two weeks ago tonight Mattie was in the process of dying. Just how can this be? It is still so hard to accept.

Sunday, September 20, 2009

Sunday, September 20, 2009

This is a picture of Mattie at age 3 in the bathtub. The first two years of Mattie's life, he despised taking a bath and was very afraid of the water. By age 3, this all changed, and in fact, he loved the water so much, he would spend over a hour taking a bath and playing with his bath toys. In true Mattie style though, his bath games were always innovative and creative.


Poem of the day (Thank you Kristi!!!)

Death of a Child by Sandy Eakle

Sorry I didn't get to stay.
To laugh and run and play.
To be there by your side.
I'm sorry that I had to die.
God sent me down to be with you,
to make your loving heart anew.
To help you look up and see Both God and little me.
Mommy, I wish I could stay.
Just like I heard you pray.
But, all the angels did cry when they told little me goodbye.
God didn't take me cause
He's mad.
He didn't send me to make you sad.
But to give us both a chance to be a love so precious .. don't you see?
Up here no trouble do I see and the pretty angels sing to me.
The streets of gold is where I play you'll come here too, mommy, someday.
Until the day you join me here,
I'll love you mommy, dear.
Each breeze you feel and see,
brings love and a kiss from me.

Last night, I went to bed at 3am, but by 8am, I woke up in a panic. Why? Because in my deep sleep I heard Mattie calling out for Peter. I distinctly heard Mattie saying, "Dad Help!" It sounded just like Mattie and I bolted up. However, I had to remind myself that there was NO Mattie around to help. This call for help bothered me all day. Why would I dream or think I am hearing Mattie calling out for help? I tried to go back to sleep, but all I kept thinking about was Mattie. Where is he? Is he happy? Is someone taking care of him? The list of questions just continued on. This was the first time since Mattie's death that I actually imagined hearing his voice, and I find it interesting that even in my dreams I can't find peace. Debbi (our sedation nurse angel) told me yesterday that she has had three Mattie dreams already, each one is peaceful and he appears happy. I would long for such a dream, but I imagine there is NOTHING peaceful in my head, and this would explain why my dreams match my reality.

Peter and I walked by the Potomac River again today and had lunch outside. Part of me feels a sense of guilt for feeling happy to eat in peace, not to be jumping up every five seconds, and being able to have a conversation. The guilt of course stems from the fact that admitting this makes me feel as if on some level I am enjoying my independence and time without Mattie. However, of course this isn't the case, I would give up every ounce of freedom to have Mattie back. But in all reality, I am enjoying the independence from living in a hospital, quarantined to a room the size of a closet, and sharing bathrooms with strangers. The list goes on. But the kind of love Mattie and I had with each other was so deep and meaningful. Losing such a great love is not only hard to rationalize, but the void can't be filled. In a way Peter and I feel as if we are mortally wounded, yet each day we pick up the pieces and try to carry on.

At lunch, Peter and I did talk about Mattie, however, we both know we can only handle such raw material in bits and pieces, and we are okay with this. It was a beautiful sunny day in Washington, DC today, and in part as we sat by the Potomac, we could see across the way, Roosevelt Island. Roosevelt Island was one of Mattie's favorite places to walk, explore, and race his remote control boats on the water. It was hard to see Roosevelt Island because it reminded me of Mattie, in fact even the Potomac reminds me of Mattie. Peter would take Mattie on the River to go fishing, and I distinctly remember a couple of times they took me out on a row boat. Mattie was just so engaged on the water, and wanted to point out everything to me. Mattie was full of energy, almost electric, and he had a way of lighting up our lives. However, to some extent without him in our lives, our internal spark or flame has been blown out.

Later in the day, I went to visit Ann's parents, and Ann's dad appears to be holding his own thankfully. However, each day his needs and symptoms are so different, and there is a total lack of consistency. I think in many ways not knowing what you are going to contend with makes this caregiving role highly stressful. None the less, in the midst of great sadness and not sure how we will go on, helping Ann and her parents is giving me a purpose right now. Of which I am grateful. Mattie was actually very concerned about Ann's dad before he died. Mattie knew Sully, Ann's dad, was sick. One evening in August, when Ann was away on her family's vacation, Mattie turned to me and asked me how Sully was, and who was looking after him while Ann was gone. When I told Mattie that I wanted to visit Sully to see how he was doing, Mattie's response was, "somebody's got to take care of him while Ann's away, so you better get going." I will never forget that dialogue to this day, because to me this illustrated Mattie's empathy and deep understanding for how awful and lonely it feels to be sick and isolated.

I would like to thank the Manogue family for dinner last night. Sorry for last night's oversight, we appreciate your thoughtfulness and support. We also want to thank the Doane family for a wonderful home cooked dinner. Thanks Mary for your kindness and constant support! It means a great deal.

I would like to end tonight's posting with three messages. The first message is from my friend Charlie. Charlie wrote, "Your struggle to make some sense of Mattie's death comes ever more clearly through the blog. None of us can truly know the depths of your pain or what the end result will be. I've done a lot of reading on illness and pain and loss this year and what stays with me is that everyone's pain is different and every path out is unique. However, over and over again those who've walked the path of grief say what helps is to have friends and family close; to have those who love you stay connected. I know that you and Peter have that and so I have faith that eventually you will find your way. It is not a straight path, nor can it be rushed. All those who know of your struggle to save Mattie, continue to pray for you and to hold you in their thoughts as do I. I leave you with this for now...from Milosz's On Angels: " Day draws near, another one, do what you can." And the rest of us will do what we can to support you."

The second message is from a former student of mine. Betsy wrote, "I just wanted to drop a quick line to tell you that I think you are doing a great job of caring for yourself. You are newly energized in creating Mattie's Foundation (I can't think of a better way to memorialize and honor your beloved son.) You are getting out and about, even when so many things remind you of Mattie. And you are doing an amazing job of staying tuned to your emotions. You are letting yourself cry, you understand that you feel shocked and numb and depressed. And you are acknowledging the empty void that Mattie's death has left. AND, you are putting all of these actions and feelings into words on the blog!! I know that through your education you already know this, but I just wanted to remind you that you are moving through the grieving process and you are doing a wonderful job. Continue to let yourself feel, sleep, eat, whatever you need. I can only imagine how proud Mattie is of you right now. You honor him greatly."

The final message is from one of Mattie's favorite babysitters. Emily W. wrote, "Every morning when I get to work I go on my iPhone and read the blog. I had been traveling back to NY from visiting Adam in Pennsylvania that Tuesday and had not had the opportunity to read the blog on Monday which made Tuesday morning's blog an absolute heart-stopping shock. I was in my office at work when I waited for my iPhone to load the blog and I know the whole office heard my scream when the title Mattie Died! appeared on the screen. A co-worker walked into my office upon hearing my cry and said that she had never seen a face so white in her life. I cannot fully express the devastation I felt that day or the continuous devastation I continue to feel. I cannot stop thinking of memories Mattie and I shared....I know I wrote some in the card I sent you....but I recently remembered sitting on the floor with Mattie last October as he sorted through his Halloween candy. I was "shopping" at Mattie's store when he said, "You know, you lovvvveeee chocolate, and I looooovvvvve vanilla....so, we're a perfect match!" I will never forget the sound of his voice as he said such a sweet, insightful and adorable statement. I have found myself continuously recalling such memories and writing them down because I think I fear that I will forget them. The truth is, though, I can NEVER forget them. I have been so deeply touched by the relationship Mattie and I shared that I will always remember the times we spent together. I was at the gym today and listening to my iPod and the song, "You're The Inspiration" by Chicago was playing. Although the lyrics in the song may be referring to a romantic love, I immediately thought that this is a song about Mattie. I began to tear as I thought that this is a song that the two of you are singing to Mattie, that I am singing to Mattie because he was and always will be an inspiration. Vicki and Peter, the two of you were always a HUGE support to me during my time in D.C. You always provided me with love, guidance, encouragement and support and I continue to admire you. You created a miracle, Mattie, and allowed for me to be touched by his beauty and magic. I think about the two of you and my Mighty Mattie so much during the day. The wallpaper of my cell phone is Mattie and I look at it constantly. Do not worry that Mattie will be forgotten- he has been engraved in my heart, soul, and mind and is forever a part of my life as are the two of you. "

Saturday, September 19, 2009

Saturday, September 19, 2009

I am sharing one of my favorite pictures of Mattie with you tonight. Mattie loved his walker, particularly because it gave him independence to move around. I also loved him in his puppy hat and jacket. I miss this cutie.

Poem of the day (Thank you Grant! Grant is Peter's boss at Voxiva.) by Canon Henry Scott-Holland

Death is nothing at all
I have only slipped away into the next room
I am I and you are you
Whatever we were to each other
That we are still
Call me by my old familiar name
Speak to me in the easy way you always used
Put no difference into your tone
Wear no forced air of solemnity or sorrow
Laugh as we always laughed
At the little jokes we always enjoyed together
Play, smile, think of me, pray for me
Let my name be ever the household word that it always was
Let it be spoken without effort
Without the ghost of a shadow in it
Life means all that it ever meant
It is the same as it ever was
There is absolute unbroken continuity
What is death but a negligible accident?
Why should I be out of mind
Because I am out of sight?
I am waiting for you for an interval
Somewhere very near
Just around the corner
All is well.
Nothing is past; nothing is lost
One brief moment and all will be as it was before
How we shall laugh at the trouble of parting when we meet again!

Today was a day of great reflection. Peter and I went out to lunch together, and sat by the Potomac River. We love the water and looking at boats, and I just get a kick out of watching people. Mattie was a lot like me in this regard, and we both enjoyed observing and assessing those around us. Mattie also loved boats, as many of you know, his one wish this year was to be a captain of a boat. But naturally toward the end of his fight with cancer, even this one wish and dream faded away. He no longer was interested in boats, in all reality nothing worldly interested him anymore.

It is times where the reality of Mattie's death just hits me. When Peter and I walked along the Potomac River today, I saw many children out with their parents. Seeing children, especially little boys, is very hard for me. I will never have the pleasure of seeing Mattie grow up and to enjoy the many ups and downs associated with parenting. In all reality, I find that I have been robbed and short changed of a very vital and enriching part of life. This provides me with an internal pain that is not only immeasurable, but it is so pervasive at times that it makes me feel emotionally empty and disconnected with the world.

Peter and I had a nice lunch together, where we talked about all sorts of things, but naturally we talked about Mattie and his experiences at Georgetown. I will forever be grateful to the nurses, doctors, Linda, Jenny, Jessie, and Jey at Georgetown Hospital. Mattie's HEM/ONC nurses became our family, and in a way by losing Mattie, we also lost the support network, and the beautiful people that surrounded us each day. They loved Mattie and they loved us, and I am forever changed by my interactions with this fine people.

One of the issues I am working through is seeing Mattie die. This five hour ordeal until death is very vivid to me, and the "death rattle" sound that came from Mattie's lungs remains a part of me. I am trying to come to peace with everything I observed and lived through, but it is hard to accept 13 months of this torture. In the midst of these horrible visions of death, I also am surrounded by the beauty of Mattie's face, the sound of his voice, his huge capacity to love others and make us laugh. I know as time passes this is supposed to become easier, that I am supposed to come to peace with what has happened, and be able to accept Mattie's death. My reaction to all of this is NO. I will never be able to come to peace with Mattie's death, I certainly accept it, I have no choice, but being able to move on peacefully seems down right impossible. On September 8, I lost Mattie and it feels as if a vital part of myself also died. There are times during the day that I physically know I am in motion and doing things, but my heart and soul are not going along for the ride. They have been parked somewhere else, and haven't caught up with my body.

Peter and I went to visit Ann and her parents today. I had some questions and concerns about Sully, Ann's dad, as it related to his medication management and the trajectory of his decline. I wanted to support Ann in some way, and therefore e-mailed one of my angels. I e-mailed Debbi, Mattie's sedation nurse angel. Though Debbi specializes in pediatric sedation, I highly value her input and assessment of situations. She advocated and guided me correctly 100% of the time with Mattie. In fact, Debbi and Tricia (one of Mattie's outstanding HEM/ONC nurses) are the ones who broke it to me that Mattie did not have long to live. I felt it was vital to get the perspective of someone I trust and respect to share her thoughts on Sully's care and medication management. Debbi came tonight to visit with us as a friend. Debbi sat with us, watched Sully, interacted with Ann's mom, and helped advocate with us as we were talking with one of the Hospice nurses. One thing I have quickly concluded after watching Hospice in action, is that for Mattie's situation, I am SO thrilled we elected to go through palliative care at Georgetown Hospital. I could never have dealt with Hospice, and after seeing what Ann is contending with, I would have been devastated and upset if we made this transition. Debbi had dinner with us and was a true friend tonight. Thank you Debbi for supporting me and Ann. I will not forget this, nor will I forget what you did for Mattie ever. I also want to thank Tanja (a fellow SSSAS parent and friend) for watching Sully tonight, while we all had dinner together and chatted outside Sully's room. Eating, talking, and reflecting are very therapeutic and healing for me. These are all things in a way I need to relearn to do. I have not eaten peacefully in over a year, and at times am still turned off to food and eating. In addition, we have been denied the opportunity to talk with others for months, so being able to talk, laugh, and express one's self is very needed to process our feelings about Mattie.

In the midst of helping Sully, we also talked and reflected on the life and spirit of Mattie. Debbi told me that Mattie is greatly missed at Georgetown, and I was truly touched to hear this. A part of me was concerned about how I was going to react to being reunited with Debbi today. At first seeing her brought tears to my eyes, but in essence these were good tears. Because my emotions were about our love for Debbi, and the incredible support and care she gave Mattie.

We want to thank the Cavanaugh family for dinner tonight. We truly value your continued support! I am signing off for the night, since it is almost 3am, and somehow need to shut down for the day. Thank you for reading Mattie's blog and your willingness to walk this very difficult journey with us!