Yesterday was Moe's one year birthday. He got a few new toys and his evening walk with Caesar. Along the way, we met Tobey, a 2 year old Shitzu that had just been rescued from his abusive owners who kept him in a crate for most of his 2 years. It makes you wonder how there are people in this world who do awful things like that and are fine, and then there's Adrienne, who never hurt anyone or anything, and only wanted to live her life.
On Wednesday, I went to a Compassionate Friends meeting, which is a group of parents who have lost a child. I've heard mixed reviews of these meetings but thought I'd give it a try. The local group is run by two wonderful women who lost older teens, one a year ago and one 3 years ago. I wasn't really able to talk, crying all the way there, at the meeting, and all the way home, but I'm still glad I went and I'll continue to go the second Wednesday of each month. Their focus is to honor your child and not to totally lose yourself in grief, to work through your grief, so that in time, the pain is less sharp and you can learn to live with it. I've heard of parents who lose themselves to booze or just never get beyond it and I don't want to be that type of person. It's hard to see any light at the end of the tunnel right now, but I know it's there. Hopefully Curt can go to the next meeting with me.
Several parents remarked that they'd lost friends through this experience, that once the funeral was over, people disappeared. I've found just the opposite and feel so blessed that so many of you continue to check in on me, to call and write. The phone calls are particularly hard for me and usually end in me sobbing uncontrollably for a few hours. So please understand that I may not return phone calls but I truly appreciate them and know that you won't disappear, that you're all there for me. It's just going to take time until I'm ready to reach out.
There's a comment from a school mate of Adrienne's on the previous posting. I hope you'll take some time to read it as it really gives you a picture of the girl she was. I was often so sad that this disease took away so much of Adrienne's childhood and teenage years. That post showed me that she was the same young woman through it all. For those of you without Blogger accounts who leave comments, please sign your name so I know who you are.
Through the cards and emails I've received, I realized that most of you have better words than I do. I'm going to post portions of notes over the next few weeks that I think really captured her and her spirit. Here's an excerpt from her pediatric oncologist who took care of her for the first 10 years.
"I heard the terrible news about Adrienne over the weekend. I suppose that in my heart of hearts I knew this was coming but I admit that I was shocked that it happened so suddenly, and, of course, I was terribly saddened... I think you know that Adrienne was a very special patient for me: smart, spunky, full of life, and so unwilling to let her disease interfere with her life dreams. It was impossible for me to believe that she would not somehow beat her lymphoma in the end... Adrienne was one of those special young women who might really have done something to change our world. It is indeed unfortunate for all of us that she never able to realize her dreams completely. I suspect that there is some rhyme or reason for these things, but I have been unable to reassure myself... I know that the weeks ahead will be very difficult ones for you. Know that we are all thinking of you and that we are still around if there is anything we can do to help."
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21 comments:
Two very fitting tributes to a very special young woman. Hoping this group allows you a safe haven to eventually, when you're ready, discuss your feelings with people who know first hand what you're going through, as so many of us can barely begin to imagine. My thoughts are still constantly with you. It's amazing how many things can remind you of someone whom, in all reality, you barely knew. No one can deny Adrienne was one of a kind. Thank you for continuing to post when you feel up to it.
May you find the strength . . .
Bonnie
what a beautiful post and note from adrienne's doctor. i'm at a loss for words. but know that adrienne, you, and family have been on my mind and in my heart a lot. not personally knowing adrienne, even i could see what a bright, shining star she was! thank you, alison, for sharing adrienne with all of us. and i hope that you will continue blogging for as long as you feel like doing so. you have been a great friend and help to me, i'd love to be able to do the same for you.
The doctor's comments reflect Adrienne so well....she was and remains still, an inspirational young woman with an equally inspirational mother.
I have a close friend who lost her 2 year old son to a freak virus earlier this year. I am seeing, first hand, the almost impossible grief process that a mother faces at the loss of her child, but like my friend, you will find a way to wade through it. I'm glad you've found a group - talking and allowing yourself to grieve, painfully and thoroughly now, will help you in the future, of that I am certain.
Know how very much you are loved, Alison..........you and Adrienne helped, motivated and supported so many people, now is the time to reap the benefits of friends who will never shy away from you or Adrienne's very special memory......love and hugs to you always..............<3
The written words from two people that have known Adrienne for many years give us all another in sight to the person she was throughout her long illness. Thank you for sharing them with us. I'm so glad to read that you realize the benefits of attending a parent's support group. I hope that you find the added support to help both you and Curt get through the days and months to come. I could never picture you as one to take to your bed with the covers over your head. Crying is good medicine...you'd explode if you kept all those emotions and tears inside ; )
Thinking of you often my friend. We are doing our LTN walk tomorrow night...Adrienne will be foremost on our minds as we do our walk with a group of friends who are coming to support Lauren and "her HL friends".
As always - sending loving ((HUGS))
Susan and Rich
xooxx
Alison: what a lovely note from Adrienne's doctor. Thank you for posting that . . . I think this other side of treatment is very difficult for medical professionals (of course) and they don't always express themselves as beautifully as that.
There is an on-line listserv for parents who have lost children to cancer. I'm going to email you the link--it's a closed group and you have to be invited by the moderator to join. I don't post much, but I've found it comforting to read about others' grief experiences.
Karen, Clare's mom
Hi Alison, thank you for keeping us updated on how you are doing.
You know I am always here if you need me.
Love, Deb (Blake)
xoxoxoxo
Adrienne is still on my mind every day.. she is a hero to so many. Love you bunches and thinking of you all alot..
Allison. Even though I've been in the hospital I've found out about Adrienna and have shed many tears for your loss. Can't imagine losing a child like that. It's too hard to explain since they're trying to find a cure for these cancers. I know my husband used these support groups with others who lost parents and he liked them. May every days' peace give you the courage to move on.
Thinking of you Alison. It must have been devastating when Adrienne was diagnosed. The long years of treatment must have been so difficult. The last month has been so so hard and now the grief and pain of loss... Hang in there and hold tight to whatever you can to help. Love and hugs P & A
Dear Alison,
Thank you for sharing the doctor's kind words about Adrienne. They paint a picture of the brilliant young lady Adrienne was.
I am so happy that you have found a group who understands losing a child. What a wonderful support they will be in helping you navigate these scary new waters.
I have also heard that friends and supporters often disappear over time. I do not think that will be the case for you though Alison. I certainly hope not and I know I will continue to come here to check in on you.
Happy Birthday to Moe.
Hugs,
A Mom
I may not say it enough, and I may not act on enough and I may not visit enough, but you are always in my thoughts. I think the hardest thing is, for those of us who have survived somehow through the miracle of medicine, accident of birth or what have you, that Adrienne was so strong and determined and we all believed that she would beat this thing. If Adrienne could not what does that say for the rest of us...we have lost many of our dear friends from our board. We rejoiced in many who have survived against the odds. Adrienne, and Alison and all the Lymphoma board members are the family of my heart, because I choose them to be, not because of the accident of birth or because of that one common thing we all had together, the fight against Lymphoma, again, it's because I choose them to be. This disease takes soem choices away from us, but in the end we have new choices...the choice to love and the choice to fight on, the choice to go to the school and look to the future even if that future looks bleak. Adrienne was mine, because I chose her to be. Alison and the rest of Adrienne's family are mine, because I choose them to be. If I could help you bear the burden of Adrienne's passing from this earth, I would choose to. We belong to each other and as long as we all live and remember Adrienne, she will never be gone. We carry her in our hearts. She is still a member of my family. She is just not able to sit at our family gatherings anymore, but if we all listen closely we can hear her voice, look in our mind's eye and we can see her smile, and when next the spring breeze blows and wraps around us, with the hint of the warmth to come in summer, we can feel her hugging us.
All my love.
Karen T. (New York "Keltik")
Alison,
Just wanted to let you know that I'm thinking of you and your family.
Cathy
Happy Birthday Moe! I love animals, and we celebrate their birthdays too. They are like family! And that's such a nice note from her doctor. How sweet of him to write that.
Just wanted you to know that I think of you often.
It's good to "see" you here and on the forum too.
Sending strength and peace...
Alison, I was trying not to call and bother your, but I always want you to know that we love you, I love you, I'm broken-hearted and I wish I could give you a hug, do something for you, or anything! You are so string. Love and hugs, as awlays,
Marsha
I urge everyone who is a friend of Adrienne or her mom to continue to check in and lend her support. Years after losing a child, support is needed as much as it was the day she lost her child. Don't feel like you are bothering her, the thoughts and prayers of friends are a powerful thing!
Dearest Alison,
I think of you every single day. I am glad to hear you checked out the support group, and hope it serves as an outlet for your grief and is a source of support. None of us who haven't lost a child can comprehend what you're going through. Nonetheless, we still grieve with you and mourn. And, of course, our hearts break for you. Beautiful, wonderful, and shining Adrienne was taken too soon. To say it's an injustice is an understatement. It's sickening.
Please give sweet Moesy some belated-birthday loving on my behalf. And, Caesar, too. Bless their hearts.
Much love,
Lisa
((((Alison))))
I so think of you, unimaginable what you must be going through. So many wise words have been written to you, I dont think I am capable of this, Im just sending big warm hugs (((your))) way!
Gitte
one thing that has gotten me through the days in the early stages of grief, is remembering that the person you watched suffer to the degree that they did isn't alive any longer to remember the suffering. i know it might seem like grasping to take comfort in this but it is true. you, unfortunately, are the repository for those memories. but at least, there simply is NO MORE SUFFERING for Adrienne, and no more memory of it. she was clearly a remarkable young woman whose candle burned so brightly. you can regret forever her loss but you can also (and simultaneously!) live with the knowledge that you helped her accomplish as much as any one woman could under the circumstances. and you helped her be as content as any human being could possibly be, again under the circumstances. just as she (and you) chose life (if that makes sense), you will choose life again, at the very least to honor her. she would hate to see you suffering like this. not to say that you aren't entitled to unspeakable sorrow and anger. one other thing that helped me through the early days was to give myself a time of the day (half an hour, an hour) to grieve and experience the horror of the loss, to even honor that in yourself, and the chasm left, but also to compartmentalize the intolerable sorrow to any degree possible. giving myself that time allowed me to feel in other moments that i could fall apart later, that i had a time for that. because sometimes, like when you are driving or in certain public places, you have to find something to stave off the stream of tears for safety's sake. just some thoughts. sorry to project if this isn't at all for you. one last thing, aside from being the one who made all of the heinous decisions at the end of my dad's life, i lost my best friend to colon cancer when we were both 31. she wrote an opera that she finished a day before she died and everyone thought that was remarkable, to the extent that she was featured on the Today show and in the New York Times posthumously. i was called to schedule interviews on the today show and for NYT and i wouldn't. the reason: she wouldn't have wanted to be defined by her disease and because the story hinged on her finishing just before dying but she only finished at that point because her illness precluded her from finishing a year earlier. so as much as we all rant about how accomplished Adrienne was and how remarkable you were for helping her do what she wanted (ALL TRUE!!!), i do want to let you know that i completely understand being FURIOUS that so much promise and so much exquisiteness was stolen from this world by cancer. that a body can betray you that way when your spirit is so strong is BEYOND WRONG. i am so sorry for what you are going through.
Alison, you are indeed so blessed to be surrounded with special people (what a great onc you have :))... on the flip side I believe that it is not a coincedence. You are the jewel, the magnet that attracts so much goodness, who raised and shared Adrienne with all of us and the world. And it seems that the higher destine is ordrained for you, the more tests you'll have to endure. Sending you and your family lots of big hugs! And Happy Birthday to Moe :)
Dear Alison, I did not have an opportunity to be at the memorial service as I was out of town. I was very dissapointed to have missed it. I have kept up with the blog for many months now and so appreciative of your time in keeping us all informed. I have a sister who lost her only child/daughter 2 years ago and she has not been in any grief groups. I applaud you for taking a step to be there even though you may not speak. Being present with others will be healing to you. That is one thing about TNT that I think of - how much we are able to accomplish together. Your words continue to inspire me as Adrienne always inspired us on the walking trail. She embraced the true meaning of living a life full of passion and desire. You will continue to be in my thoughts and prayers. Fondly, Nancy M.
I'm so very sorry for your loss. You are a wonderful mother for doing this blog.
Vesna
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