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Hi guys,
Like during all of the other traumas in my life, I turn to you, my virtual family for love and comfort...I just found out that my mom died on Saturday morning from heart failure.
I am way out of town, in the Far East, and have no way of going there or getting back...I am told that there will be no funeral or service at all so I am setting up prayers here.
It is hard to know how to feel about a woman who was a loving and devoted nurse and nursed me through 20 years of my illness and disease while hating and resenting me for 'doing this' to her and destroying her life. I was not the daughter that she deserved. She deserved a strong and healty child who went out to play and went to prom in a beautiful dress instead of popping in and out of hospitals and surgery like a rabbit. She deserved fun and joy and shopping sprees with lunch at chic little restaurants and not fecal matter all over the floor and a child twisted in pain and cramps.
She was a woman who would have loved me dearly if I had lived up to her expectations and standards and gotten better to make her happy...it was beyond me.
So, I would like to say Good Bye and I am so sorry for having made you and your life so miserable and maybe in another life I will be able to come back healty.
For now I will search for the happy memories of a life past...those blessed momemts between surgeries and flares when we did actually share a moment of happiness and joy.
Sharon
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Sharon,

Sorry to hear of the loss of your mother. Do try to remember the good times you shared with her. She cared for you, because you were her daughter and she loved you. I don't think it is easy to raise any child whether they are sick or healthy, but a mother does it because it is her child. You were probably more of a joy to her than you know.
Sharon,
I am so sorry for your loss. I hope you have been able to come to terms with your relationship on some level and can find some good to remember her by. She could have not cared for you or given you up. I know it's not much but it does happen more than I would ever have thought. I hope she was able to express her pride in all of your achievement despite years of illness. I'm sure she must have been proud of you.
You and your mother are in my prayers.
So sorry Sharon. I hope you can find some solace in your prayers. For what it's worth, I think your mom had an amazingly strong and resilient daughter, one capable of great compassion and love. My hope for you as you grieve is that you find a way to give yourself some of that compassion and love and know that your mom did of course love you. Perhaps she didn't know how to show you in the way you needed, but I have no doubt she did.

Prayers for you as you mourn your loss.
Sharon

So sorry for your loss.

I guess it's one we must all suffer whether or not our relationships are what we wish they were or not.

I have always had a somewhat difficult relationship with my mother (perhaps it is because we are too much alike) but in any event I know I will miss her greatly when her time comes.

Lew
Thank you all for your kind wishes and words and prayers.
I do not know if she loved me but I do know that she hated my disease and illness although I do not believe that she could ever truely understand it (which one of us had a mother who could unless she herself suffered from it).
Our last conversation took place when I flew out to see her just over a month ago and she refused to allow me to come over or even take my calls until it was too late to drive the 2 hrs to see her. I was blasted with an hour's worth of anger against me and my disease and how it spoiled her very existance, her life, her fun and her joy. I was told what a horrible child I was and had been and how I was not enjoyable. I refrained from answering that I was usually somewhere between ER and OR most of those years and that it was no piece of cake for me either.
I allowed her to rant and rave and 'get it all out' and never answered back (at least out loud) but kept thinking to myself how this disease and its treatments cause more damage than most people think or know. She was as hurt (or more so) than I was by it, my relationship with her, my dad and my brother were irrevocally changed by it and other than my dad who had live through the horrors of concentration camps and being orphaned at age 13 the others never forgave me for it.
Like my dad I am a survivor and refuse to go down with the ship or blame others for my plight. I am as God made me, Imperfect but I keep trying to improve, accept and help others. For all I know, maybe there was a reason for my being ill, to help those who need it and to support those who need loving kindness and understanding.
Maybe not but I will stick around, if you allow me to, and pay loving tribute to her by helping those who do not have a loving, understnding family either and who I can help to heal with kind words and guidance.
Thank you all for bing my support system. I do not know what I would do without you
Sharon
she probably felt very guilty watching you suffer and be sick as mothers by nature do. she may not have handled it in the best manner and probably could have vented to someone else besides you, but she maybe could not hold back. it became her way to cope with it and to cope with her anger. she sounds like she was not angry at you, but angry at the disease and what it had done to ALL your lives. she was mad at the disease and what it robbed you both of and how she wanted things to be different for you, to be better for you. But she could not do anything to make it go away.

i think I understand a little because my mom sometimes doesn't know what to say, how to say it, express it, or even help. she is looking at me, helplessly. and sometimes she says things that hurt, like how it will be difficult to find a partner. but i realize she is thinking out loud, her greatest fears for me, and just wants the best for her children, and is in shock, denial, despair. Mothers want to see us thriving, succeeding, living life to the fullest. when there are times the stupid disease will not let us or will take us in other directions. It is extremely hard for people to accept. especially a mother seeing her child go through it.

you are an amazing lady (I am sure she was too). i know it from your posts. you are a great writer and the power of your words is truly remarkable. may you be blessed always for being a fighter, and encouraging others to fight as well.

we are here for you too!!!!! <3
Sharon,
Very sorry for your loss.
Obviously it is complicated due to your mother's difficulty in coping with your illness and multiples surgeries etc.
Please do NOT think less of YOU because she could not cope.
You are a very strong, wonderful, giving, insightful woman.
Your mother probably could not deal with all of your health issues and with her own issues of being unsupportive.
It's too bad she felt she needed to lash out at you in anger for being you and for being ill...not YOUR fault.
I hope at some point you can come to terms with your relationship and try to understand why she behaved as she did....her own guilt? Her shame at being so non supportive...whatever caused her to behave in those ways, were HER problems.
Yes, they became your problems
But, remember through it all, you grew, you matured, you became strong despite it all.
Hoping you can get through this and continue to maintain your strength and dignity
Sharon,
My deepest condolences to you for the loss of your mother. I, too, did not have a very good relationship with my mother & had mixed feelings about her when she died. How awful for you that she didn't even want to see you & lashed out at you the last time you talked.

My grandfather wrote a verse in 1913 which has gotten me through some difficult times. I have it framed & sitting in my living room & read it often. Part of it is as follows:

"It has been said often, that we bring nothing into this world and we take nothing with us when we depart, but that was said of material possessions.

All of us bring with us the need to love and be loved, and take with us in the spirit the knowledge of having loved and having been loved.

So we wish for the ability to remember the good things and forget the rest, and to be sustained by trust, and hope, and courage, to always try to understand."

Take care - Dixie
Dear Sharon,

My deepest condolences to you and your family for the loss of your mother. I am very sorry for your loss, but also for the mixed emotions you must be now feeling.

Some people fall short of the hopes we have in them. Either from fear, anger or their own demons they lash out at the innocents. That burden does not rest on your shoulders.

What emerged from your mother is one of the kindest, most supportive and loving people I know. You never cease to lend your help and compassion to all of us on these boards. You keep your heart open for our sadness and hurt. You somehow absorb that and in return produce joy and hope to us that lifts us up off the bathroom floor. You have a gift that knows no bounds.

Grieve your mother in the way you see fit, but realize whatever love you didn't feel from her miraculously fills you with the utmost expressions of love. Her emotions towards you are no reflection of you whatsoever.

I hope you find peace. We are always here for you.

~Tammy
Sharon,

So sorry for both of your losses - the loss of your mother and the losses of a positive mother/daugther relationship.

Despite all you have been through, you are never short of a kind word to share. You have the one of the warmest hearts I have ever met - in person or virtually.

In the back of my mind, I alway think, next time I get to Paris, I am going to meet Sharon!
Sharon,
So sorry to hear about your mother. I can't imagine the loss you are feeling not only with her passing but with your relationship with her. I do know that you have always been a great help and inspiration to me when I have posted my concerns and questions. Take peace in knowing that you have been much appreciated by those of us who know the sorrow this disease can wreak on all aspects of us....physically, emotionally and socially. Thank you for being such a kind and generous person.
Sharon, sorry to hear about the loss of your mom, especially since you weren't able to reconcile before her death. I guess she must have done something right, because you emerged full of caring and love, despite her short comings.

I also had a dysfunctional relationship with my step-mom, but we mended fences before her death, so I will be able to bury the past along with her. Personality disorders can really leave a path of destruction, and the person who has one really has little control, or even awareness....so sad. Not an excuse for her, but understanding that helped me accept without agreeing, and set boundaries.

Take care,

Jan Smiler
Sharon-so sorry for your loss. My thoughts are with you at this time. I hope you can focus on good times you may have had together. Although the disease is beyond our control, it can take a toll on our loved ones and unfortunately it may have been too much for your mom. As many have mentioned you are a caring loving person, always offering help and support to others. I do hope your mom recognized that. Stay strong at this difficult time.
Thank you all for your kind words and support,
Dixie, thanks so much for sharing your grandfather's writings, they are so very ture.
I lit a candel for her last night and will keep the flame burning for 7 days as is our custom and have set up prayers for her and in her memory (even if she did not believe in them, the fact that her name is being said in prayer somehow conforts me).
I remember when I was a kid my mom had our house repainted by a bafoon...he moved her precious curio cabinet without first emptying it and the top shelf came crashing down onto the second that then collapsed on the third etc...I found her sitting in the livingroom, on the floor, surrounded by shattered crystal vases, bowels and glassware, tears dripping down her face, incapable of moving or reacting...she had saved 1 plate and a liquor glass from the carnage and held tightly to them. She told me to throw out even the slightly chipped or fractured pieces...she no longer wanted them.
I swept up and threw out the remains of a lifetime of collecting, scrimping and saving and the dream of surrounding herself with beautiful things. She never wanted another piece of crystal again. She hated anything chipped or flawed or broken. She loved beauty.
I failed her on both counts.
When I finally gave in and decided to have my pouch done she was shocked and opposed to it. I had not asked her opinion...I had gone ahead and made the appt, booked the surgery and informed her afterwards.
It was the begining of the end of our relationship.
I became flawed and broken and needed to be swept up and out.
She never really accepted my pouch, the finality of it or the ramifications. As long as I kept having treatments and surgeries to repair me then she could hide behind the hope of my one day being cured and no one ever knowing that I had been sick. A pouch was another story altogether. It was final, permanent and very visible with a stoma dead center of my right abdomen.
She loved perfection and beauty...that was who she was. Some people just cannot stand the flaws in us, cannot get past them to see the real person behind them, cannot understand the pain and horror of having to decide for yourself to have your colon yanked out and the rerouting of your digestive system.
I will pray that other parents, who may read this, will learn to understand and support their children in their quest for good health and an end to this horrible disease.
Goodbye mom.
Sharon
Sharon I read this thread and quite honestly as a mother of a daughter who just went through 3 years of absolute hell, it broke my heart that you did not have a mother who could help you with what you went through. It's clear from what you wrote about her that she had issues that ultimately had nothing to do with you and everything to do with her...you were merely the victim of her issues. I'm so sorry that you went through that. As a mother I can say it's the hardest thing I have ever been through - to see my little girl (okay she's 20) go through the hell she has been through, to lose the life she once had, to lose so many friends who just didn't get it and have no way to help her but to be there. It sucks that I could not fix what was broken. She just got her j-pouch a week ago and it seems like she is doing ok. I'm just grateful she is healthier than she has been in more than 3 years. I'm grateful for every day she feels ok. I will admit her older sister is resentful of her illness and that just makes me sad. I hope someday she sees that it wasn't a choice to be this sick. Please accept my heartfelt sympathy on the loss of you mother...from what I have read you have done remarkably well and have helped others dealing with this nightmare.

Sharon - you were not the imperfect one. You were a girl with an illness. That's it. It does't make you imperfect. It made you the person you are. Quite honestly it you were a much better daughter than a lot of us could have been. I hope you feel the hugs that throughout this thread are being sent your way. Bethie
Thank you so much Bethie,
I sincerly hope that your daughter does well and can finally go on with her life and live as she deserves and not as this horrible illness dictates...the loss of our freedom, of both body and mind is not fair and we often succum to frustation, depression and hopelessness...having a loving and supportive mother can make all of the difference. You sound like a wonderful mother and she is so fortunate to have you.
My mother was forced into the role of nurse to me when she was already one to everyone else...she did not want to have to take her work home with her...it was hard and unfortunate for her but very lucky for me. She helped me through a lot when I was young.
As I got older she worried about the disease, the constant illness and the scars that it left on me and how it would effect me as a grown woman...she could not stand (especially at the time)how limiting it was...people did not talk about pouches or ostomies and UC...it was considered dirty and forbidden.
Now, thankfully this forum and so many others exisit to help those who truely need it and I am grateful.
May your daughter and you have long and healthy, fulfilled lives and may her sister come to understand that being sick is not a choice but a burden that we carry. I hope that in the long run she will not hold it against you and her sister as my sibling did.
Hugs and encouragement of good health
Sharon

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