You may wonder why I post so often and so openly. I think it's cathartic to some extent, helping me sort out my thoughts and feelings. I have Adrienne's iPhone and it's much easier posting on this than my Blackberry.
I can't stop replaying Robin's visit in my head. I know she meant well and believes every word she said. I also know that there are several people who read this blog who've been in our position. It's an awesome responsibility, more than anyone should bear. Robin looked me straight in the eye and said that Adrienne won't recover from this. While I know the odds are slim, I couldn't live with myself if we don't exhaust every possibility. Who am I to make any decision about another person's life? I'm sure that Robin didn't make that decision for her son until she was sure that every possibility had been exhausted. There has been talk here about keeping Adrienne on a ventilator indefinitely. Believe me, that won't happen. But I won't end the life of one of the most important people in my life, someone I'd switch places with in a second if I could, unless I feel that there is no real choice.
Thanks for all the sleeping suggestions. I have my own little system from benadryl to Tylenol pm to Xanax. It would be nice to have something for those awful days when we get bad news or I just can't stop crying, something to help me get through the day while still helping Adrienne. Sometimes, only my voice comforts her and I need to be here for her.
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21 comments:
And we all thank you for finding it good therapy to update as often as you do in the midst of this storm. Writing is such a good way to sort things out and organize them in your mind.
I'm wondering if Robin was authorized to say what she did yesterday. We know you have Adrienne's best interest at heart with each decision that is made for her.
Wishing and praying that each day is better than the one before it. Hope you get some peaceful and well-earned rest tonight my friend.
((HUGS))
Susan
My heart aches more and more with every post at the thought of how painful this all must be for you; while at the same time knowing full well that I can't even begin to imagine the true reality of it. I wish there were words to ease the pain/stress/anxiety.
Still here wishing and hoping for the best for Adrienne and you.
Bonnie
alison,
i am checking your blog a million times a day. yes, emotions go up and down, but still...there is hope! adriennes life is in the best hands...YOURS! do not let go unless you are 100% sure that letting go is what she'd want and is neccessary if she can't recover. for now, keep up your strength for her (you need to sleep!!) and keep fighting those docs and nurses who are trying to make your life harder than it is already. you are doing an unbelievable job an i am sending you two all my love, hoping that adrienne has a lot of reading to do on this blog sometime soon!
get some rest.
hugs, annie
Hi Alison, I do appreciate the updates. I check it quite often.
I am sorry that you are having to deal with other peoples comments on top of everything else you and your family are going through.
love, deb
Nobody has been in your exact position, Alison, nobody else is Adrienne and nobody else is you - everybody will have a viewpoint on this, but yours is the only one that counts here. I'm just so sad that you're facing this........if each and every one of us could take a fraction of the enormity of this off your shoulders, you know we would, in a second.........please feel the love and support being sent your way.......<3
Dear Alison,
I am thankful that you post a lot! As for me having gone through 2 transplants myself, I really can say, about the worst thing anyone at anytime could have said to me in words or action, was "I dont believe in you", and the one thing that has fuelled me the most is - this is going to be ok, dont worry everything will be fine, and we will do everything possible for you! Knowing this, someone fighting and believing in me, you included :-) gave me strength and no one should be allowed to take away hope from anyone.
Hope is the power of life, when we have hope and faith we´re ok. Therefore I am so glad to read that you have the strenght to stay with what you think is right, this is what has helped Adrienne so much!
I look forward to seeing Adriennes counts have come up today!
(((Hugs)))
Gitte
There is still life and there is still hope. You haven't exhausted all the available options and I know that Adrienne is resilient. This nurse shouldn't have told you that even though she meant well. The timing was not right.
I'm praying for Adrienne.
I can certainly understand why writing is cathartic for you, Alison. It does, indeed, help us to channel our thoughts and emotions in a linear fashion. Thoughts can be all jumbled up in our minds, but when laid out on "paper" make more sense and have a calming effect. That said, we really appreciate the updates, as they keep us abreast of Adrienne and you, and your family. I can't help but feel part of that, given the concern we have for you all.
Your emotions about the interaction with Robin are absolutely understandable; While her heart may have been in the "right" place, it seems to me that what she said to you was probably colored by her experience - Not only with her son, but also as a nurse she's most likely seen people who WOULD be content to let their loved ones live permanently on a vent, just to have them "alive." Point is, she can't assess the situation as you do. She doesn't know Adrienne. She doesn't know Dr. O. She just doesn't know so many elements that make up Adrienne's fabric of life. You do. You are her mother. And I can't imagine not choosing to exhaust every option for a beloved daughter who wants so much to live, who has so much to live for.
Just know we're here, and we love and support you.
Love,
Lisa
P.S. - Try the Valium.
You are exactly right about exhuasting every possibility. You are doing all the right things. I am following your most painful journey each day and my heart aches for you.
-another mom
I'm glad that posting helps you Alison, it for sure is nice for all of us who check often to see how Adrienne is doing.
My heart is broken for the two of you, for your entire family.
You are doing what any mother would do, exhaust every possible option. If Adrienne keeps fighting, then you keep fighting too.
In my thoughts and prayers always,
Cathy
My heart and prayers go out to you as I know how you feel, we had to make that same decision for our 29 year old son this past July. You will know when it is time and not before don't let anyone push you. A reader from New Hampshire.
Alison - I hope I never have to go through what you and your daughter have gone through...but I hope as the years with my daughter pass that I can be a mother like you. You are so amazingly strong. It's unfair that you are going through this and this is so much weight on your shoulders. I don't "know" you personally - but I truly think you are one of the strongest people I know.
Thinking of you today (As everyday). Checking the blog regularly...And I'm praying like crazy for Adrienne (also such an AMAZING young woman).
LOVE AND HUGS,
stacy xo
Alison,
As far as medication goes, you might want to ask about Trazadone - it's an anti-depressant but I think it's used quite often as a sleep aid. It has worked really well for me in similar situations offering some anxiety relief and letting me get some sleep. BUT, I can wake up and function when I need to.
Hugs to you and Adrienne. I truly believe that you know the best decision for Adrienne - Moms have that tight connection that only we seem to understand. Robin knew what was right for her son too.
Love K
We all want to know what is going on, thank you for updating. I'm with Susan, also wondering about Robin's authority. She isn't an oncologist, and even THEY can't predict whether someone will pull through something or not.
You have to be able to live with this after this, and it will be easier if you can feel that you were true to yourself and what you know about your child's wishes. Your adult child, who as an adult, authorized you to make her medical decisions. She didn't authorize Robin.
I'm thinking of you.
Kimberly
Alison-
My gosh, I feel for you. I felt the exact same way with Pat. Who was I to dictate his life or death. Even though we were married, I still felt like it wasn't my decision to make. I kept turning to his parents for help. They kept telling me it was my decision. I hate being in that spot and I hate that your in this spot now.
As for the sleep, I understand there too. I went 4 days without sleep at the end. Pat would wake up every 3 hours and look so scared. He didn't know where he was and I was the only one who could comfort him. There are many things to try other than xanax. Ativan and klonapin work pretty well too. You just gotta find what workes for you.
Josh and I are praying for you guys all the time.
Carrie1979
th strengtth yuo ar sumoning up is imesurabl. i, too, am gratefl of yuor updats. we all care so vry mcch. allowing us to at leest walk frm a distns wth yuo on ths jorny is so genrus of yuo.
th prayr i lift up is fr strength to do wht yuo need. to keep yuorslf well. to be abl to deel wth well-meening but entirly inaproprat opins. for curage to continu to look at adrienne's hart and soul and jst love hrr as mcch as yuo alrdy do.
and we ar silently behind yuo. loving too.
Alison,
Although sad, so much love and sweetness shines through this latest post. We have maternal instinct for a reason, and it's usually more perceptive than a room full of -ologists, MDs, and PhDs, combined. You're doing what you know is right; please don't let anyone take away your hope. Love, Janet
i am glad that keeping us updated is also helpful for you.
robin was frank with you and she likely was trying to help in her own way.
but...if adrienne were able to speak up i have no doubt that she would want to continue to fight for her life. and that is what is most important.
we've seen some really hard times as a group and we've seen a couple miracles too.
gotta just keep on keepin' on.
love you,
heather
Kathy and Kimberly reflected my thoughts precisely. You are acting as Adrienne's surrogate; Robin isn't. and she made the right decision too when she was her son's proxy, but that doesn't mean it is right for Adrienne. if the time comes, you will know when that is. i've been almost precisely where you are, except with my dad (and even as i can't imagine anything harder, i know that this is). having to make these decisions in my early thirties and with a much shorter illness, i wasn't as level-headed or as informed as you have been (even through your crying; that unstoppable sheding of tears, which can almost feel like speaking in tongues; a whole language of despair pouring out; it is very hard to contain; a benzo as needed helps). my heart goes out to you and please keep sharing if it helps. we are here for you.
Such thoughtful and encouraging "stalkers" following the A-Team through this journey. Just reading your posts to A and A brings tears to my eyes. Friendship, caring, love and prayers carry strong powers. I KNOW they are surrounding Adrienne and Alison giving them the strength to continue to Fight 2 Win!
((HUGS)) to my fellow "stalkers"
Susan
Dear Alison,
I'm so sorry you are having to make these decisions. Ultimately, it seems that it is a decision between you, your family, and God. I pray that he gives you the enlightenment and wisdom when/if the time comes. As her mother, you have a special connection and intuition about her and I believe you will know what is right.
Praying each day for you.
Isabelle
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