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