[wisewoman]

Five years ago this weekend my foster daughter of 12 years died suddenly. She had C.P. and a seizure disorder. I have been doing EMDR around my guilt, feeling like if I took better care of her she would still be alive. Illogical but my whole pattern is if I could do something well enough I could stop bad things from happening. I think the EMDR is helping. So from a grief prospective I will say that I feel that due to her disability she was marginalized as a person. People barely noticed or reached out to us when she died. In addition her birth family is catholic, I am so not catholic that when the preist said something about how she wasn't suffering and was at peace I almost jumped out of the pew to choke him. Sorry to all catholics here. I mean no offense but he didn't know her and just because she had a disability he thinks she was suffering? No words about who she really was. I craved stories about her. Sought them out. Made people write them on cards and made up two memorial books with pictures and words, one for us, one for her birth family. I wanted to hear her story and so few people even kinew she existed they couldn't tell it. People who were our friends avoided us because they didn't know how to deal with it. What do you say to someone when their severely disabled foster daughter dies ?How about I am so sorry. My girls were 11 when she died. I carried my baby in my belly as I carried my foster daughter in my arms. I fed her breakfast and sent her off to school and had my baby 5 minutes later. We adopted one of the girls at 3 1/2, our son was not yet three when she came to be with us so all of the kids have no memories of life before our loved one died. There is still alot of pain attached to the memories of how she passed and not being there. Not getting to bury her my way. Feeling like I should have been there, I could have saved her. The EMDR is helping. It is a long story indeed but think of me, and the rest of my tribe as the 10th approaches. I took good care of her. I loved her. She loved us. She was happy with us.

[LadyDragus]

<marquee> <font color=purple> (((((((((((((((((( hugs and hugs )))))))))))))))))))))))))))))) </marquee>

I will do more than just think of you.. I will say a special peom to you on that day..
I will keep you in my heart and in my soul..
I do understand how hard it is to lose a loved on as gifetd as your child.. They are not disabled, they are a gift from our gods above..
She was giving to you, for a reason a pourpose, God took her back cause it was her time to go, we should not question him beause that is his way..
I know it hurts, and I am sorry you are in pain on this day, and the days around it..
I truly am..
For I would love to be there beside you, so you could be held and have a shoulder to cry on..
</a>
Always remember this Dragon looks over all of the forums not just CC, so I will be watching over you this day, in sprit, and in soul, too ok..
Look to the heavens and see me flying above, and I will be there in your heart.. I know you will see me..



<font color=purple>
take time to heal thyself before trying to help others, or you will never get better

[wisewoman]

Dear Lady, you just made me cry, thanks for your generous kindness and abundance of love.

[hamstergirl]

I don't know what to say to you, so forgive me if I give offense.

I understand why you wanted me to read this.

The priest was only trying to offer what comfort he could. For many people, not just Catholics, a life of disability means a life of suffering, intolerable suffering. This isn't always the case. I'm sure your daughter was a happy person and that she was your pride and joy.

I can say this with assurance because I remember the times in my life when I was happy. They were few, you had to look for them, but they were there and the joy seemed to be more powerful and more plentiful than the darkness.

If I died, I would want to know people who I truly am in the eyes of God. Well, who am I? A list of medical conditions and psychiatric diagnoses? A plaything for the doctors? To many people, this is all I am, all I ever will be.

You're right. Disability marganalizes us and makes us invisible. You have every right to be angry. I know how you feel, because since my pain hit, it's like I've died. I've become a leper of lepers, even more invisible, even more lonely. Friends have become silent. Strangers don't know I exist and my family...well, the less said about that, the better. And I want a place in history.

People look at me and they see one who knows no fear. They see a soldier, they see a machine. Well, this soldier fights, this soldier screams, this soldier bleeds.

This soldier can die.

I was drafted into a terrible war on the day I was born. It's called "Life". I and my family have made great sacrifices so I may serve in that battle, and what thanks do we receive?

We get spit on or ignored. I am in battle now. I am in terrible pain just to write this. I have cried. I am crying, though people cannot see the tears. I need to be held and cuddled like anyone else and people walk away. I need to be held more I think, than the average person, because of the terrors I go through.

Don't let my face or voice fool you. I am human. I am scared by this. I need a hug and I don't dare ask. I have to be brave for the people around me, because society demands it of me, even if they pay me a pittance to survive and spit in my eye.

There will be no homecoming for me or your daughter. No bands. No medals on our chests for what we tried to achieve in life. If I died tomorrow, I would want people to know that I fought hard, died well and took ten of the enemy with me.

That is how I would want to be remembered. And I've done a lousy job of it. Fighting is all I know how to do anyway.

There is a thing more crippling than cerebral palsy: the prison of your own mind.

so sorry for your pain.......

[wisewoman]

I know that you have a lot of pain in your life but my point I quess is just what you are saying, look beyond to the one within and see the person not the disability. Neither you or she have/had less value. And our stories should be told of our lives no matter who we are. Thanks Hampstergirl.

[heatherm]

((((((((((((wisewoman)))))))))))))))

I am so sorry for your pain. I hope it helps to know that your love is what made her who she was. It sounds like she was a wonderful little girl and she is always going to be with you.

Please know I am thinking of you and sending you caring and comforting thoughts.


Heather

[LadyDragus]

I am sorry I made you cry, that is not my inttetion, but I do know how you feel..

Dragon is srroy for making her lady for crying...
*hangs her head in sorrow* for she did not mean that to happen.....
I hope I can be forgiven, and you will still let me fly above you on yoru day of sorrow, so I can portect you from all sorrow in the future...


<font color=purple>
take time to heal thyself before trying to help others, or you will never get better

[wisewoman]

I am sorry, I meant in a good way by being so kind and supportive, it touched my heart. thanks

[wisewoman]

Thanks butterfly lady.

[wisewoman]

Tahnk you for your thoughts and kindness.

[gloria]

I have an idea: I am not sure it would help but here it goes:
Why don't you write a list of some of your special happy moments with her. Maybe a field trip that was exciting and fun, or a birthday celebration you two attended, or a fun holiday you remember sharing with her, etc. Use her aniversary to remember all the good times you had with her! Maybe it will bring a few laughts and good moments to your mind ...
Lots of love and a hug for you.

gab

[SeptemberMorn]

when the preist said something about how she wasn't suffering and was at peace

That is such an overused phrase! So cliche! Why couldn't he say that her life had been blessed by having you in her life?? That her suffering had been made easy to bare because of the love and care you gave her?? And I'm not stretching my imagination here, much less had an opportunity to talk to you about her so that I could celebrate her life rather than make her out a pitifully sick child.

My heart goes out to you, Dear Wise Lady. Do as someone suggested here and think of all the good and happy times you shared with her. As you suggested to me, write it all down and if you want, share it with us. We're here for you. You've given me so much help, I'd like to try and return the kindness.

{{{{{{{{{{{{{{{{Wisewoman}}}}}}}}}}}}}}}}}}}}




<font color=blue>"Our doubts are traitors and make us lose the good we oft might win by fearing to attempt" --Shakespeare</font color=blue>

[Rapunzel]

That is really rough! Thank-you for posting your story. I really feel for you. You are right - it is hard to know what to say. I am absolutely positive that she was/is an incredible person, and that she blessed your life and you blessed hers. I will be thinking of you.

Love,
Wendy

<font color=orange>"Success is the ability to go from failure to failure without losing your enthusiasm. - Winston Churchill "</font color=orange>

[wisewoman]

About two weeks before she died we went to this place where there are water falls and cliffs and carried her down the trail near the water. Not an easy task but we didn't shelter her. We took her everywhere. When she was younger we tried sledding. She had poor circulation so I dressed her all up warmly and put her in a sleeping bag and down the hill we went. She hated it. Live and learn. When my baby was a baby she used to sit on her wheel chair tray and feed her. She allowed it. It was the sweetest exchange. She had an odd taste in clothing. I would hold up two outfits and she wanted to mix and match so we did. She was a girly girl. I am not. She loved when people would do her nails and make her up. She loved eggnog. She used to like to watch the Smurfs on tv. My husband and I have some of the words memorized from the shows! She couldn't swing because it made her sick but we didn't know that till we tried it once. OOPS. She would always look to my husband to protect her if I were upset with her for anything. She really liked him. When I was a little pregnant and odors etc bothered me she pooped in the bath tub. Now imagine how long it took me to deal with that one. I would do a little bit and run to the door and breath and do it again. She had a special bath chair so I had to clean everything, drain the tub, take her out, clean some more and then bathe her all over. Thank goodness that only happened once. She ignored ignorant people and gave the ones she loved her magical blue gaze. Those incredible eyes. She hated to have to wear her orthodics but I was insistant. She hated to have her teeth brushed. She hated hats and mittens. She loved books on tape. LOved spaghetti the best. Liked sweets. Was interested in wildlife and habitat issues. Had a very special relationship with a woman who cared for her. It's like they had esp or something. We have a maple tree in the back yard in her memory with the Robert Frost poem Nothing Gold can Stay. She was a teacher. She was born to teach and came into our lives to teach. I hope we learned what we were supposed to. sniff sniff

[SeptemberMorn]

It sounds like a page out of a very loving mother's journal. I'm sure you learned all you needed to or she wouldn't have left you.

{{{{{{{{{{{{{{{{{{{{{Wisewoman}}}}}}}}}}}}}}}}}}}}}}}}}





<font color=blue>"Our doubts are traitors and make us lose the good we oft might win by fearing to attempt" --Shakespeare</font color=blue>

[LadyDragus]

ah, ok..
Then you have no reason to be sorry,
I understand then

<marquee> <font color=purple> (((((((((((((((((( hugs and hugs )))))))))))))))))))))))))))))) </marquee>

<font color=purple>
take time to heal thyself before trying to help others, or you will never get better

[wisewoman]

Well, today was the day. I am working on remembering her in a positive light instead of the trauma of her death. I am working on believing I did enough. I am working on she knew we loved her and she loved us. 5 years, unbelievable. Seems like this morning in some ways. So please share the memories I wrote of her life, to celebrate her gift to us who knew her. To celebrate her life. Sniff sniff