:) This is from the sister WITH the sister who has Downs and MM. Had to put in a smiley face, because we have been blessed. We know she is terminal,, but we have been fortunate so far. She hasn't had a major attacks. A lot of small ones, and a few bleeds. But, since there is nothing they will do for her, we haven't had to take her to the hospital. Except for when she fell and broke a bone in her foot. OUCHY! Anyway, we will only take her if there is any major discomfort or distress on her. SO far we have managed her well at home. She is getting spells more frequently, and I feel she may have only a few weeks left. But, as to date, there has been no physical signs of disabilitys from them. She is very fortanute!!!!! As am I. She is living in the past more and more. Having mood swings, which she NEVER had all her life. And since she is now 55 that is GREAT.(never having any before that is).  Hospitice will start tomorrow, a counselor. As she is getting scared alot. She understands Heaven and God, but for some reason she is terrified, poor thing. So this person works with children, they say she is great. We will see. She is starting to choke and cough more, and her eye rolls. They say that is the blood flow being interrupted. But, overall, she has done well. She still enjoys my grandkids, laughs with them sometimes. Loves watching the birds eat, small things like that. She has no desire to go out of the house any more. Though I do take her out anyway. She has lost joy in many things, but it doesn't seem to register with her either. Which is good. I have been sick myself. Fell and ripped a muscle and cartliage around my ribs. That was three wks ago. Still in alot of pain. So I have finally gotten help in here with her. She is adjusting to it. Seems I can't leave her site though. So I just stay put mostly.   Just wanted to put a little light into this terrible thing. It will take her. But she will go at home and happy. I love her with all my heart. I will survive also.  All take care and God Bless.       MJS

dear mjs...you have my prayers...all the hardship going on...and difficulty you have been through as we all go through different difficulties.  My sister had leukemia, battled the side effects of it for 13 years...she was 16 when she passed on and I was 18...but we made the best of it.....the experience of losing my sister gave me a strength as a mother to go through with what my daughter with MM has been through....makes you who you are in positive ways.  So I know how you feel, what you are going through.  I am totally deaf myself (been deaf since I was 3...so the handicap part I understand deeply....and wanted you to know you are in my thoughts as your sister goes through this stage of her life.

Warm hugs,  CarasMOM

Dear MJS!

Just want to tell you how much I and certainly everybody else admire what you´re doing for your sister. It all seems so calm and peaceful!
I work as a councelor in an "Advanced Healthcareteam" (probably didn´t translate it correctly but I hope you anderstand anyway) and I think what you´re doing for your sister is very beautiful and caring.
We´re all so concerned about how to be born and the situation around that but this "journey" I believe is just as important; how you die. And you are preparing the best death your sister could possibly have; so full of love. I pray you have the strength to stay by her side allthe way and hope you get all the support you need from friends, family and perhaps proffessionals . My thoughts will be with you ! :-*

Annica

MJS,
You are giving your sister a very beautiful gift. Your strength is wonderful.
Rena

Thank you for the words!!!!!!!!!!!!!!! :) to Carasmom,,,,,,,,I just love the words you used. Makes us who we are in a positive way. WOW!!!!!!!! I sure wish I could have thought to say that. SO many people say I am a "saint". This is not true. But your words put it just right! How amazed I am that words can mean so much. Thank you to the others also. Your words, I not only read thim, but I could FEEL them. I haven't felt that warmth inside for so long, that I didn't even miss it. Guess you gave me the best hug,, and just when I needed it the most. My sister is the one who is the saint. They said she should have passed on 6 months ago. She has such  conviction in her soul, it encourages me. She keeps me going. How strange and wonderful life is.  Again, thank you from the bottom of my heart!   MJS

In 1998, after two long hard years, I lost my wife; not to MM/Down, but to cancer.  During her final months, we accepted help from family, friends and hospice; but the moments we treasured then, and I treasure now, were those evening "walks" (she in her wheelchair, me pushing) around our small town.  We visited those special places, saw those special sites and listened to the birds.  We did this over and over again, even when she didn't feel like it.  

Two weeks before she passed, the words to a new song came to me ... it made me angry because it was a song meant to be written AFTER she was gone (so I thought).  I filed it away for "later".

(NOTE: I know all the words here don't exactly fit for a sister, but the deeper meaning may help someone here)

One Wednesday evening as we enjoyed the sunset, she said, "There is something you haven't told me".  I knew immediately that somehow she knew about the song.  I sat next to her, and through the tears, sang these words:

You're gone, but life goes on.
I never thought I'd be here without you by my side,
The day you left, I cried.

You're gone, my heart is empty.
I only have the mem'ries of years we spent together
Through dark and sunny weather.

The day we met was magical,
I gazed into your eyes.
I found someone who I could love
and much to my surprise ...
I caught you looking back at me,
Your feelings were the same.
I know my life became complete
The day you took my name .... but now,

You're gone.  My life goes on.
I'm learning how to live here without you by my side.
I speak your name with pride ...
although you're gone.

Except in my heart.

She said, "Now that you've sung it, I know you and the kids will be alright."  That was Wednesday evening ... she died in my arms on Sunday morning.

MJS ... please keep believing that your sister is getting ready for a very exciting trip!  Somehow, I just feel that she believes with all the understanding that God has allowed her ... and that we will all get to meet her later on.  Many prayers ... and may God bless!

Dear Steve,,,,,,,,,,, I sit here now with tears in my eyes. It is hard for me to allow my true feelings to come out. Seems there is either not enough time, or the wrong time. Plus, in my life I was taught that emotions were stupid. Everything was either "black or white, no in-between." I will never forget my father pounding that into my head. This is only the second time I have felt the emotion. But I know that is what will help me, and help me to help her.  Release sometimes is a hard thing, but very necessary,, as I have learned.  So<<<, I have to thank you for your words. You gave me a release, which in turn, lets me feel the love more. With all of you out there,, I now know that we (I) will survive. With hardship, but I will go on. Thank you from the bottom of my heart. You have also given me a thought to help her release also. AGAIN>>> Thank you         Sincerely MJS!!!!!!!!!!!!!

Hey MJS,
I read the post that you gave and the other posters.  It also brought tears to my eyes.  I had an aunt that took the place of my Grandmother.  She did not have MM, but cancer.  She battled for two years and at one point she wanted to go home.  Before her past we took care of her as much as we could in hopes that we could get her to stay. She was so distressed.  One day she looked at the end of her bed and started to speak with a smile to her sisters and mother who past many years before.  It was like they were there to welcome her back.  She, from that point on was content and said her goodbyes and left us.  She was the only person I had left beside my parents that I knew and loved.  But after hearing her speak to her mother and sisters that past before, I knew she was really going home with a smile.  

She never left me you know.  She will always look after me and someday I will see her again.  

When writing this post, it was the first time I could cry and release since her passing.  

Your sister will go only when she decides to like all of us will, but if she does go, I am sure she will join all of your family that will help guide you through life.

I wish all the best of love for you


Wayne