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tgal
03-20-2011, 10:17 PM
I have been back home for about 45 min and I looked at the new posts since I was here last. I sat stared at the list wondering how I could even answer them and have any positive things to say. I don't have it tonight.

I spent what should have been a wonderful day with my daughter but all it did was make me sad. Sad for me and sad for her as well. Sad because today I saw our roles reversed. I remember doing it with my mom as she died from cancer that spread to her brain and Ash did it for me all day today.

I really don't cry over my health very often and I know it could be worse but she deserves better at almost 16 years old. I saw her as she reminded me that I liked that purse when we passed by it earlier. She reminded me when, after 45 minutes going round and round the displays of purses when I started asking "did I like this when we saw it earlier? I was reminded when she finally said "OK, how about we pick up this one and you can compare it to the others. That way you will know you liked it".

Ash wanted to go play bingo with her left over from spring break money. I saw it when I came back from the restroom and she had put all my cards in order for me. I saw it again when I messed the cards up because I couldn't get understand and I got confused. I saw it even more when we were playing the game and I was .. I don't know what I was doing but I saw it when she picked up my dauber and filled in my cards. It was at this moment I had to see what I have become and what I have become is so unfair to her.

I shake so bad that someone asked me if I had parkinsons. I hate that but that is nothing compared to watching my daughter be a mother to me. How did I get to this place? A couple of years ago I one of the best at what I did. I dealt with Attorneys and Lenders all day long and now I can't keep up with a freaking bingo card?

I know that everyone here has it bad and usually I am pretty positive about everything but today... today I saw me clearly through my daughters eyes and that hurt more than anything.

Nonna
03-21-2011, 12:21 AM
I wish I could make it better for you and Ashley. There is nothing we can say to make things more positive.

But you and Ashley have been dealt a special hand; that hand may just be keeping Ashley on the straight and narrow. It has made her study hard and get good grades. Turned her into a wonderful loving daughter instead of a self driven teenager. My daughter was really rough until she was 16 then she turned a cornor and wonderful things happened. God dealt her this hand for a reason. You've got to trust in his wisdom, Mari.

You and Ashley will grow together. Make new lives, my mother is upset that my father is coming to the end of his life. I did what Ashley did for you. Told her she would not be alone that she could take care of me. My mothers not all there anymore. It's just a thing daughters do for their Mothers-no matter what age they are...

I'm sitting here it tears crying for all of us. Knowing that I will be a burden later also. Julie tells me live healthier now so it will be easier on her later........ We just have to trust that things work out.

Hugs my sweet friend for you and Ashley
Toni

Toradoradi
03-21-2011, 04:00 AM
Mari,
I have no words of wisdom for you. I have no experiences that compare to what you are going through. Your daughter loves you though. And she would not be who she was today if anything else was different. You may want a different life for her, but don't we all want a different life for ourselves with this disease? This is something we learn to deal with and something we have to make the best of. It's hard on us, it's hard on out families and it's hard on the people around us but it makes it so much easier to have people to lean on and people to be there. I know it's not what you want for her or yourself, but it is the life that you and her have to live and making the best of it is is the only thing that you can do to make it better. Stay strong, love your daughter, let her help you, and enjoy life any way you can.
I am sorry for what you're going through, I know it must be hard, but life in general for us is hard. You just have to smile and get through. I know this probably doesn't make you feel better and you just wanted to vent but know we are all here and listening and hopefully helping in some way.

Much love.

steve.b
03-21-2011, 04:14 AM
thank you for sharing.

it is not easy realising what the future holds.

it is even harder accepting it.

today was a bad day physically,
but a GREAT day mentally.

thank you again for sharing it with us.

kim,l
03-21-2011, 05:33 AM
my dear friend mari i am sorry that you are going through this iwish i could hug you right now this disease affects us and our families amd it is sad what it does to our children but i also know that you are strong and kind my friend and this you have given to your daughter we have so much in common my friend both our daughters do these things for us out of love and as mothers we find this hard to accept but we have raised wonderful daughters you have been there for me and i will be here for you anytime you need me i have the greatest respect for you luv and hugs kim l

rob
03-21-2011, 05:58 AM
Mari,

You are one of the most intelligent people I know. You are super-smart, but sometimes the smarts don't always make it through all the interference our central nervous systems put up. I know it's no fun, but it's not permanent. Things won't always be this frustrating.

In your daughter's eye's, you are still her Mom, and she loves you-nothing will change that. Although the situation is different, I recently had my first experience with the changing of roles from son, to more of a fatherly protector of my Dad for a short time, and it only made me love him more. The way he soldiered through his recent surgery inspires me, and I would be willing to bet that you inspire Ash in the very same way.

Hang in there, and don't worry about things here for now. You had my back when I really needed it, now I've got yours for a little bit.

Rob

Bonita
03-21-2011, 07:17 AM
Dear Tgal you have a very special daughter and she loves you no matter what and any time you spend together is important even if she is the one to take charge. This is one of my biggest fears and i told the doctor this i was always a care giver and do not want to be on the other end but only God knows if this will come and if it does i hope my kids will take care of me as your daughter is you should be so proud of her. Hang in ther and i pray that things will get better. Love Bonita

SandyR
03-21-2011, 07:28 AM
Mari,

I know it's hard to rely on Ashley for so much right now and I know it's hard for her to have to step up out of childhood so quickly and I know most of all it's your experience with your mom that enables you to recognize your daughter's role in your life right now. Just breathe. Bad days come and bad days go but good people who love us stay with us through out. Your daughter could have very easily given up and walked away or rebelled and picked a fight or been stubborn about not understanding your condition. She could have refused to go to the mall or bingo or anywhere that is not at home with you but she doesn't do any of that and that's because not only does she love you but she was raised by someone who taught her how to be a good person and how to care for others and be compassionate. I know this doesn't make it easier to be the person on the other end of the care giving relationship but since you are looking through her eyes with your past experience look through her heart as well. You know more than anyone else that as hard as it was to have to do so much for your mom at so young an age there is no one else you would have wanted to do it for her in your place because there is no one who loved her more than you did or in the same way. (((HUGS)))

lovehubby
03-21-2011, 07:29 AM
Mari you have the right to be upset. You are the strong one here at WHL aleast that is how I look at you. Even the strong break once in a while. I know that your daughter loves you no matter what is happening to you.So have your moment to be sad it is ok we all need these sad days because they make us stronger. I know you will be ok and one day all this will go into a remission. And you will be so much wiser for all you have gone through. LOTS AND LOTS OF HUGS YOUR FRIEND MICHELE

rob
03-21-2011, 10:45 AM
Bad days come and bad days go but good people who love us stay with us through out.

You know Sandy, you come up with some real gems sometimes, and this quote of yours is one of them. Well said.

Rob

SandyR
03-21-2011, 11:06 AM
Ever since I read this thread title I've had the Martina McBride song with the same title stuck in my head. I thought it was really appropriate for this moment, Mari so here is a thread to the song (http://www.youtube.com/watch?v=eLS0Y40WwlA) and the lyrics are posted as well.

Martina McBride: In My Daughter's Eyes
In my daughter's eyes
I am a hero I am strong and wise
And I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I want to be
In my daughter's eyes

In my daughter's eyes
Everyone is equal
Darkness turns to light
And the world is at peace
This miracle God gave to me
Gives me strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand
around my finger
Oh, It puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about
It's hanging on when your heart

Has had enough
It's giving more when you feel
Like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes
I can see the future
A reflection of who I am
And what will be
And though she'll grow
And someday leave
Maybe raise a family
When I'm gone I hope you see
How happy she made me
For I'll be there
In my daughter's eyes

tgal
03-21-2011, 11:12 AM
You know Sandy, you come up with some real gems sometimes, and this quote of yours is one of them. Well said.

Rob

Yes she does.

lupiegirl
03-21-2011, 11:23 AM
Mari,

I will not have your experience. God did not bless me with children. However, I recognized myself. When I have my good days, which fortunately are many, I "mother" my Mom. I fuss and take care of her. However, when that dark cloud arrives and the lupus rears its ugly head, Mom is my Mom. She fusses over me, tends to my needs and takes care of the "stuff" of life. How blessed I am!!!!!

Makes me worry... who will take care of the stuff of life when Mom is gone?

tgal
03-21-2011, 11:34 AM
I have to tell you that my crying had stopped until I read these wonderful posts. I had thought about apologizing in this post but I can't do that. I am a firm believer that one should never say they are sorry for what they feel. Feelings may not always be logical but they must be allowed to exit the body in words and be acknowledged or they will continue to eat you up inside.

Since I am not going to say I am sorry I am going to thank everyone here for allowing me a place to break down. It is only my trust in all of you that made me feel safe enough to spew forth the words and the pain. Each and every one of you means something special to me.

I am better today. Except for the tears when reading the posts today (and they were tears of understanding and thankfulness to each of you) my breakdown is over. I may not be able to control my body or my mind against this horrible disease but I will NOT allow it to take over my emotions. I will not allow it to steal my joy, my love, my kindness or my happiness. I have the best daughter in the ENTIRE world. She has been my joy since before she was born and she knows that. I will not let this disease turn me into someone that is hardened by whatever illness I have today.

I went to the doctor today and I have to go on Nitro for Angina. It appears that the inflammation that I have all over the rest of my body is causing spasms to the blood flow to my heart. I asked about the lacy rash on my arms and legs and he did verify that it is vasculitis, he verified the Raynaud's i(due to what..spasms caused by inflammation in my body) and also believes that at least part of the problems with my brain and seizures is due to this same inflammation. There is actually a comment on the last MRI that there seemed to a lower amount of blood flow into my brain.

So here I am. Back to me and so thankful for all of you. I don't know what I would do if I didn't have this place and each of you in my life

GoodDog
03-21-2011, 06:40 PM
You're an amazing woman, Mari! When I have a bad day or hour I keep remembering what you tell everyone. "It won't always be this bad." It helps me hang on because I now know you are right. We are so blessed to have you.

tgal
03-21-2011, 06:46 PM
OMG that is so sweet! I am just like everyone else here. Each of us give something needed here. This place would not be the same if any person was gone. I feel so lucky to have found this place!

mountaindreamer
03-21-2011, 08:23 PM
hi mari,

wow, you really had a tough day...i am so sorry that you had to go through that experience watching your daughter try to protect you from possible embarrassment. i have seen my daughter do the same thing, she will secretly do little things that make my life easier. whereas i truly appreciate her help, it hurts me to see her have to help me.

but, like other said, and like you have said to others, it will get better. you will have days when you don't need for her to put your cards in order, and there will also be bad days when you will need her again. I try really hard to do things with my daughter when i am feeling ok, so that she can see that i can still take care of myself most of the time....my heart was aching when i read your post....i hate this disease, and i hate how it is making you feel.

so glad that you did not apologize....that just would have made us all mad at you. lol...not really.


sandy, i agree with rob and mari, you use simple words to say the most thought provoking comments...thanks, i agree....we should be thankful for the good people that love us and will always be here for us.....

mari, your daughter will always be here for you, and i can tell that she does not want it any other way.

hope you are having a good night's sleep.

magistramarla
03-21-2011, 08:36 PM
Hi Mari,
I'm just now reading this thread, and I was so moved by what you and others said. Someone mentioned that this is probably why Ashley is such a good girl and good student. I'm sure that is true. I had to grow up fast and take care of my mother, too. However, she wasn't appreciative as you are, but was mean and abusive. That experience did make me into the strong person that I am today. It's great that you and Ashley have such a great relationship and that you can let her know how much you appreciate her. She will be fine, and she will always remember this.
I'm worried about all the things that the doc found wrong with you. Is he going to be able to do anything to bring down the inflammation and give you some relief?
I'm so glad that you are finally getting decent medical care!
Hugs,
Marla

Saysusie
03-21-2011, 09:03 PM
Mari; To have such a wonderful and loving relationship with your daughter can only be seen as a gift. Please do not shed any more tears when she shows you the most pure, tender, and unconditional love that can be shared between mother and daughter. Cherish each moment that she reminds you that you liked a purse, that she blots your bingo card, that she simply looks at you with love in her eyes. These are moments that few of us get to experience with our daughters or mothers. Try not to dwell too much on your illness or what you have lost. Instead, cling to her love and what you have gained; a gentle, devoted, loving, daughter who would do anything for her mother.
Conversely, she has a mother whose heart fills with nothing but love for her and whose only wish is for her daughter to know happiness, love, and to know that she is cherished. What the two of you have is so absolutely beautiful and so rare that it is to be seen as a blessing. I wish you and Ashley continued moments of pure love like these that you've shared with us!

Peace and Blessings
Namaste
Saysusie

craftkeeper
03-22-2011, 03:16 AM
Tgal, i just read your post and it touched my heart so.. sounds like you have a wonderful daughter and you are a wonderful mother to her. I cared for my mom for the last seven years of her life, for my Dad for the last few months and for my brother for the last few days he had here. Not once have i ever regreted the time i invested in them.. That's what love does. Now my 9 year old carrys my purse,finds my sunglasses and helps me out of the chair. Her little face beams when she gets to help.
I dont know about everyone else here,but i feel sometimes very sad or guilty that i cant' do the things i want to with her,like i did with her older sister but i know that we can make the best of it and i'm sure you and your sweet child will to. I am new to posting on this board, but have been reading alot of the back posts and you are such a blessing and help to everyone on here. I hope you have a very blessed and happy day today.

kim,l
03-22-2011, 03:38 PM
my dear friend hope you are doing better today you and i are blessed you with ashley and me with mikaela and we are all blessed here to have you in our lives be well my friend hugs kim l

steve.b
03-22-2011, 06:52 PM
i have read this thread several times.

I LOVE THIS FAMILY

I LOVE THIS FAMILY

I LOVE THIS FAMILY

tgal
03-22-2011, 07:35 PM
i have read this thread several times.

I LOVE THIS FAMILY

I LOVE THIS FAMILY

I LOVE THIS FAMILY

I second that! I love this family too! A special thanks to Carlotta (Susie) for creating such a place.

Nonna
03-22-2011, 07:47 PM
I second that! I love this family too! A special thanks to Carlotta (Susie) for creating such a place.

I'll third that
thank you Carlotta

Mari you ok?

tgal
03-22-2011, 09:38 PM
Hi Toni. Yes I am fine. Thank you for asking! My breakdown is over thanks to all of you!

steve.b
03-23-2011, 02:15 AM
thanks for the link.

it is good to see someone is getting positive results.
this appears to be only the first step. many more steps will be needed.

it is a start.