Monday, January 4, 2010

Monday, January 4, 2010

Tonight's picture was taken in April 2007 at Calvert Cliffs State Park in Maryland. This is an amazing park, with a mile long picturesque boardwalk that eventually ends at the Chesapeake Bay, with a large beachy area. On the beach, if you dig a while, you can find many sharks' teeth. Mattie loved this adventure, and had no problem walking one mile back and forth in a given day. He was a born explorer and had an outstanding sense of direction!

Poem of the day: No Fear In Heaven by Ferna Lary Mills

There are so many things in life that we can't understand,
like why a tragedy like this can happen in this land.
One moment life is perfect and the next it falls apart,
leaving us with nothing but an eternally aching heart.
Our souls cry out in agony amidst the suffering and despair.
We feel the pain and tear our clothes and scream "It isn't fair!".
Spirits are now shattered. Hearts will never be the same.
We grasp at straws and seek to find the one who is to blame.
Horrific as our life now seems, one thing remains quite true.
Our little ones have now been freed to do things angels do.
They can't recall the horrors of those last days they were here.
They remember not the terror, the hurt, nor the fear.
There is no fear in Heaven. No more sorrow. Only Joy.
It's filled with joyous laughter from each little girl and boy.
We can only try to imagine, in spite of all earthly wrongs,
our little angels are learning the words to the Angel's songs.
Amidst the children's laughter and their Heavenly play,
there's also more important work going on there today.
Jesus is building mansions, never taking time to sleep,
for Reunions are being planned, yes, even as we weep.
The children gather around Him and listen to Him speak,
for He has all the answers that they curiously seek.
He tells them for a time, in Heaven, they must wait,
and then they can meet us at Heaven's pearly gate.

I had a follow up meeting with my neurologist today. I know many of you have followed this saga with me regarding this particular neurologist, I thought you would like to know he was lovely again today. We talked about the progress I am making with my headaches and various other things. I found it interesting when he asked me if my headaches got worse over the holidays. He said this typically happens to people. It was at that point that I reminded him that for me everyday is stressful, not just on Christmas and New Year's. I think that was a sobering reality check for him, and when he connected the dots back to Mattie he realized that what he said was probably not very sensitive. The problem is I have been spoiled for a year. I was surrounded by oncologists, who for the most part are highly sensitive and very caring physicians. I imagine you have to be this way as an oncologist based on the life threatening issues you discuss with families on any given day. However, our Georgetown oncologists, unfortunately ARE NOT representative of the entire medical profession. The whole profession needs to be seriously re-evaluated. Doctors are unable to make medical decisions for themselves, and any time you disempower a professional, no good can come of that. Doctors are held to a tight time schedule, are regulated by insurance companies who know nothing about medicine, and I truly believe because doctors are regulated in this manner, they miss a good 85% of  patients' issues.

I ran some chores today, and during one of my stops I ran into Joan Holden, the Head of the St. Stephen's and St. Agnes School (SSSAS, where Mattie went to Kindergarten). As most of our readers know, SSSAS was extremely supportive of Mattie and my family throughout his battle with cancer. This type of school community is not to be forgotten, and yet, when Mattie died, we lost our daily ties to the school. We have these ties in spirit always, but it isn't the same. When we lost Mattie we lost everything. It is almost like trying to rebuild your life after being ravaged from a natural disaster.

I had a lovely chat with Joan and she keeps encouraging me to write a book. I told her that perhaps that should be one of my goals for 2010. I spent a good portion of the afternoon with Ann's oldest daughter, Katie. Katie is 12, and I wasn't sure how she would feel with me being around when her mom and siblings weren't. After all, Katie is now babysitting for other families, and in many cases, she functions quite independently. Katie could have migrated to another area of the house while I was around, but she stayed with me. We both did our own things, but we did it next to each other, and she was eager to let me know the progress she was making on the game she was playing. I attempted to read a book today, but Mattie's death has greatly affected my ability to concentrate. In fact, I find I can only read in five minute increments, because my mind wanders. In order to read and concentrate now I need complete silence. This is definitely a new experience for me, because prior to Mattie I could multitask with anyone. I could read and concentrate with all sorts of things going on in the background. I truly believe this is the aftermath of living 24 hours a day, 7 days a week in the stressful environment of a PICU. Needless to say, this is a very unsettling feeling, and I am hoping with time, this agitation diminishes.

When I got home tonight, Ann called me. I think she wanted me to know that she admires the mom that I was and am. In essence, she was saying that she could see the kind of mom I must have been, as she witnesses my interactions with her children. I am not sure why her honest feedback caught me off guard. Maybe because I don't reflect on what I was able to accomplish in Mattie's last 15 months of his life. Needless to say, Ann's comments got me thinking, and I can say that these were things I most likely needed to hear. Going back to my blog posting last night, never underestimate the power of needing others in your life. One simple and beautiful comment can make a huge difference to its recipient.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "You have, unfortunately gained a wealth of wisdom about difficult situations, dealing with hospitals, doctors, fighting for patients’ rights, grief, etc. These are all subjects and situations that all of us wish to avoid as much as possible and I commend you and Peter for your willingness to continue to engage and help others who are in similar situations. This takes a special sort of courage. It is quite impossible to survive the sort of loss you suffered in isolation; that’s why so many people who don’t have good support systems are often left searching for help from hospice and other organizations; they have no family, friends or religious support to turn to. The world has changed and there are more people out there like George Clooney’s character with each passing year and I think this is very sad. Those of us who have been touched by Mattie, know better and hopefully, we will be able to bring our newfound wisdom to assist those we find in similar situations. I don’t know what the meaning of life is; I do know that what makes it worthwhile for me are the connections to family, friends and those I care about. I am sure this whole reassessment of what is meaningful now for you is painful but, I hope you can find something you feel is worthwhile and because you are such a wonderful instructor, I hope teaching of some sort is a part of it. Be gentle and patient with yourself as we go into this new year. You are always in my thoughts."