Insurmountable
The more time we spend fighting this disease the more heartbreak I am exposed to. I use Internet Explorer and when you go to "Favorites" on your menu you see your bookmarked websites and then you see "Folders" that contain items. I have about six different kinds of folders storing different things relating to work and then I have one folder titled "NB". It is here that I keep my web links to clinical trials, information about hospitals, my GMAIL account that I use for the NB mailing list, as well as more depressing information about hospice care and end of life decisions, as well as fundraising and everything else about NB.
This folder has gotten very large, too large, with too many bookmarks. I've reached the point where I need to separate it into multiple subfolders. That fact is one that I if I dwelled on could in fact be depressing.
I keep links to all of the kids whose stories I follow on their parent’s websites. Some parents share these links on their websites so that you can follow other kid’s battles and pray for them, some of those parents even link to Will's site.
I have not done this yet because that list of kids I have is pretty big, and every week one of those kids dies. I now have a bunch of websites and a terrifying number of those kids are no longer here. Yet, it is impossible for me to EVER delete those names from my folder. I don’t ever want to forget their struggle.
It is, at times, unbearable to read of the seemingly constant pain, suffering, and loss. I don't always feel comfortable reading it and have decided that I have in fact inflicted enough pain, suffering, and heartache on the people I love by sharing my heartache about Will and I don't want to expose these people to any more pain.
However, I sometimes feel that I need to share these things since it will further illuminate the world in which we live, the impending horror that we fear, and the things that loom over every decision we make so that perhaps you can get a glimpse of why we may not see you as much as we hope. Why we may sometimes skip a birthday party, or a baptism, or a trip to the park during cold and flu season.
If you want to enjoy your weekend, then please do not read any more until Monday. Below is a post I have taken it upon myself to copy and paste without permission. However, I have felt so strongly attached to Penelope and her fight that I feel not sharing this would dishonor the struggle all of these kids are forced to contend with. Eventually, it ends for all of us. Sometimes it is more difficult than others, sometimes you are spared the pain and suffering, sometimes you are given a reprieve from a lifetime of horrific memories, and sometimes you are not given that peace.
This is NB. This is what we all live in fear of. This is why we want a cure. This is why funds that are given for kids should be spent on kids. This is why I don't sleep. This is why I have nightmares. This is why I meditate. This is why I'll never be the same. This is why I have to believe there is a cure for Will. This is why I love people that I have never met, have never spoken to, and will never meet. This is why my heart breaks. This is why I created this website to keep from going insane. This is why I can never give up on Will.
Journal
Friday, May 18, 2007 1:49 PM CDT
Things We need to remember:
Penelope hasn't opened her eyes more all day
Penelope must be blind in her left eye as it is purple and shut
Penelope hasn't moved an inch on her own in four days
Penelope has not eaten or had anything to drink in five days
Penelope has lost the ability to use her left hand and her right hand is starting to fail too
Penelope has a lesion coming out of her skull and keeps complaining of dizziness
Penelope's legs have been hurting all the time
Penelope's left leg is believed to be fractured and she is believed to have internal bleeding in her leg
Penelope's abdomen is very distended and making her very uncomfortable
Penelope can no longer suck her thumb or hold her "Bear Bear"
Penelope can barely find the strength to utter a word and we desperately try to decipher the sounds coming out of her mouth
Penelope is on more methadone than can be believed
Penelope still nods when asked if she want to be told stories
Penelope has told everyone she wants them to be happy
Penelope told Daddy "I am not crying, so you don't cry" (I am trying but it is so hard)
Penelope is told "We love you" by her mommy and daddy about 1,000 times a day
Penelope has not complained ONCE about what is happening to her
Penelope, when told that there is a place called heaven that waits for her, told me "I know. I will go when I am ready"
PENELOPE, WE LOVE YOU MORE THAN WORDS CAN DESCRIBE, YOU ARE OUR BEST FRIEND, OUR PRINCESS, OUR HERO! OUR HEARTS WILL ALWAYS BE CONNECTED!
6 comments:
I read Penelope's journal today when I came home from a long afternoon at the clinic with Nathan. It is horrifying, but at the some time it is actually a little bit comforting to me (the last few) because she truly has no complaints. I was told today we can expect Nathan's pain to start becoming intense by a month from now. I know he will be where Penelope is soon, so, since I can't change that - I am praying he will have th spirit and the will that Penelpe has - it is amazing.
you are an amazing writer yourself...... and John and Catherine London have more stregth then I could probably ever have if I was in their shoes. Thank you for posting that. And I was so sad to hear this morning that Penelope is gone, but glad she is finally pain free.
We hold on to the hope that a cure will be found.
This is why you are also loved and admired by people that have never met you, but read you every day, as if your own story was a little bit theirs too. This is why your deep feelings and thoughts fly around the world and mix with other personal feelings and thoughts, making them all ONE. Hughes from Spain, Susana.
I am a big fan of your blog and the way you get to the heart of the matter in your writing. The stories and photos of Will are very endearing. I have included a link to your blog for Will in a recent entry of the journal which I still keep up for Laura. I am sorry that we are another family that would be categorized in that folder you mention. As an older child with nb though, I'm not sure Laura's experience is something that can or should be looked at in relation to a young child with nb.
It's great to read how Will enjoyed Disney. Great fireworks photos.
sincerely
Mara Stiles
mother of angel Laura (10/27/1994 to 12/22/2006
http://www.caringbridge.org/visit/laurastiles
You are amazing. My daughter was diagnosed in March of this year with NB at 7 months also. She just completed her 4th chemo treatment, and will have an MRI in a week or so to see where to go from here.
I hope you do not mind, but I am going to quote some of your post on our blog...you write beautifully...you say what all of us feel, what all of us are often too scared to say. Thank you for being our voice.
God Bless you.
Brenda
www.brenda-chad.blogspot.com
Patrick,
I have checked in often over the past months to see how Will is doing and always anxious to read of your adventures. My young nephew Max and his family are also fighting the NB battle. I linked here from Max's blog. I appreciate so much reading your experiences as well as those of John and Catherine and their precious little Penelope. There is a certain strength you all possess, I've seen it in Melis and Andy and read about it in Sid Berrill's book "Ya can't Let Cancer Ruin Your Day", there is a certain fight and optimism and attitude that says keep going or get out of the way. Your children--siblings included--have a wisdom in their innocence that compels us to appreciate every breath and live each minute and finally understand that all that "stuff" doesn't really matter--at all.
I actually just want to say thank you to all the NB parents who take the time to share your lives; your vulnerability; the good counts and the bad ones so the rest of us on sidelines have a little better understanding of what you are living.
You are on my prayer list--may God's understanding, wisdom and knowledge guide your decision and give you strength.
God Bless!
Randee (Annee Ranee)
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