Dealing with Chronic iIlness

I'm sorry for your health issues, but I have a couple of friends living with Fibromyalgia, and they are not in danger of passing away at any minute. I don't know the specifics of your personal health condition, but if you've been in danger of passing away any minute for 23 years, it sounds like you were not in such terrible danger. Your oldest is an adult. I think you've been a little too focused on your own impending death and that should not be a sword hanging over your children. You may think I'm nervy and don't know what I'm talking about, but my kids were 7 and 3 when I was diagnosed with cancer. They knew I was sick, the oldest knew I had cancer and what that was, but we were busy living our lives. My possibility for death was not constantly hanging over their heads. Since my kids were born, I have written them a letter every year on their birthdays, having nothing to do with cancer. Once I was diagnosed, I have made them some things - cross stitch and crochet items, for their adult life and possibly their children, but I'd have done that even if I didn't have cancer. Really my illness just made me sure to be there for the important events in their lives. Focus on their lives, not on your own death or health issues. If you are receiving hospice care, they can discuss with you how to best handle the issues of your illness with both your child and your adult child.

My father had Chronic Leukemia, diagnosed when I was 6 months old, so it truly was my whole lifetime. I have seen him go through countless surgeries, chemo, radiation, 2 bone marrow transplants, face disfigurement, painful treatments, feeding tubes, skin grafts... his life totally altered, .... we have been shuffled to friends homes for extended periods of time while my parents traveled for treatment... we've seen it all and have gone home on 12 separate occasions and told to plan my dad's funeral.

I have witnessed miracles, both of the physically healing and spiritually healing kind.

My father died when I was 23 years old. I met my husband 6 months later. I mourn that my husband never met him, that he was never a grandpa to my children... however, I loved my childhood. In fact, my father's illness made me a much stronger, mature, responsible and compassionate woman, with a stronger sense of family importance and faith in God. Spending half my life in a hospital room taught me how to do puzzles, and crafts (we brought activities to keep us busy), and write poetry and spend time laughing and loving in times of distress.

I truly think you have been a wonderful mother and that your children will be okay. I spoke at my father's funeral and it was a healing moment for me and many in the congregation.

One thing that I treasure, is my father's journal, and the photos and videos of him we took. He even made a video of himself singing some of his favorite hymns, and doing comedy routines. While it's tough watching the videos at the end of his life and seeing him hide his pain and weakness through his smile... I still cherish them.

Would you like to read a little father's day tribute to my father I wrote a few years ago? I'm sure your children feel the same way about you!

http://littlelovables.blogspot.com/2008/06/fathers-day.html

*hugs and strength and much love to you*

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I read your update, what a miracle you have been through. I will definitely be checking out your website. I would love to get involved somehow with patients rights, I have seen atrocities at our hospitals, including the va.

I have Fibro and 16 other autoimmune disorders/conditions.
I cannot think of anything else besides what you are doing right offhand.
If i do I will come back and post it.
there is a post at www.butyoudontlook.com that deals with this very thing. I cannot remember which forum but you can use the search feature.
My thoughts with you.

One thing you have to know is that children love their parents for their good and bad points. They don't know any different. I can bet your children have never thought of you being their mom as a "burden". This has been life as they know it. And, I'm sure they could be honest and say it hasn't always been easy, but would they trade it? I bet they'd say NO.
It's not exactly the same thing, but I knew someone who was the only hearing person in his family. Both of his parents and all of his siblings and cousins etc, were deaf. I remember thinking what an amazing person he was. He truly loved and adored his family and never once felt put out when he needed to help and translate. He adored his family and never once even tried to imagine his life being any different.
I know that when my father got cancer, it actually brought us so much closer. We lost him, but we have the letters he wrote and his journals and his favorite books that he sent with inscriptions inside for my kids.
We miss him, but we have such happy things to hold on to as well.
Try to enjoy every last minute that you have doing things you love with the people you love the most. You are right, none of us really know when it's our time to go.
The most comforting thing my dad said to me was that other than us living so far apart, he had no regrets in his life, that his life had really been a gift.
It made it easier on me knowing that if he had to go, he wasn't going with a heavy heart. I really needed to know he was at peace.

I promise you, your children will not ever think, "Hmmm. Did mom do enough?" You gave them life. You clearly love them with all of your heart.
You've been a wonderful mother....you know you have.
Journal things if you can.
I know I really treasure my dad's.

Best wishes to you. I'll keep you in my thoughts.

Absolutely letters, a journal, a video or even a blog! My father literally dropped dead of a heart attack when he was 49 (I was 20) days after a flawless annual exam. The shock of the quite unexpected was traumatic and left no time for goodbyes for any of us. Years later my mom went on to meet a man from a bereavement group whose wife passed away after months of brain cancer treatments. She wrote letters to her 4 children everyday. They cherish those letters the good sweet ones of memories of their younger days and the ones where she honestly expressed her pain and fear and the everyday mundane facts of life. People hold on to what they can after the loss of a loved one.

A friend's mother, 4 years later, has yet to change the outgoing answer machine message and calls home just to listen to her husband's voice (yes, there is also some security in a male voice recording). How I wish to hear my father's voice or see him "talking to me" by video.

You are a great mom and doing so much for them right now. If you can, in this day and age there are so many ways to easily record our memories for our loved ones to be left with, I encourage you to find one that you can manage. Wishing you peace and comfort.

I think what you are already doing is heroic. Just loving on them and caring so much for their well-being in the midst of your own pain is commendable.

You say that you have started to obsess on the effect you illness is having on your kids. Concern is good but obsessing will drain your energy. Do you have access to a counselor through Hospice? They may have some suggestions on how to communicate with your children about your condition in a way that will give you all peace.

your doing great how wondeerful you are peace

I agree with Kelly G. write something to them as often as you feel like it maybe record a video (or a voice recording) for them telling them how much you love them too, I have a video of my Grandma rocking my kids when they were little and I can't tell you how much it means to me to see and hear her voice and seeing the love and joy she always spread. You are right anyone of us could die without notice so we should always tell people how much they mean to us and that we love them every chance we get and live life today the best we can because we just never know. I am sorry that you even have to worry about this I wish you the best and am sending prayers and hugs to you.

Fate, your doing awesome. You have given them a gift that they will always cherish, "you" and the knowledge that living for today and not worrying about if tomorrow will be there or not. My dad had terminal brain cancer diagnosed when I was 2 and he was 30. He was given only sixth months, my amazing dad survived and lived the best he could for 16 more years. I cherish those moments and memories with him that I had. I was 18 when he died and I still miss him and will always miss him. Just be there for them and love them and continue being the mom you are. :-) Enjoy your family!!!! And enjoy life and be as healthy as you can. Best wishes for you and your family.

PLEASE, PLEASE start a journel to each of them with a short letter to them every couple of days. Not saying that you will pass in the near future but, whenever it does happen they will cherish it & deal with the death better. I so wish my dad would have left me just one letter when he passed of cancer. Now, after writing this message to you I am going to start one for each of my children and I am in good health. Just like you said any of us can go at anytime for any reason. I sure hope you are able to have some pain relief.