It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Down Syndrome Message Board

  • My angel marcia

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-10-2006, 07:27 AM   #31
    Karen W.
    Veteran
    (female)
     
    Join Date: Apr 2005
    Posts: 391
    Karen W. HB User
    Re: My angel marcia

    Hi,
    I'm sorry I haven't posted in a long time but my Down Syndrome son David had become very ill, we almost lost him, He ended up getting Endocarditis, He was in the hospital for 19 days and now we are at home and are doing 6 weeks of I.V. antibiotics, I must say I did think of you when he was in the hospital and so critical, it seems like DS kids and adults really go down hill fast, it takes your breath away. Davids weight was an issue, I was told by many doctors, so I'm going to have to focus on that . I read your post, don't feel gulty about anything, You are a good sister and the lose of your sister is devestating plus your dealing with allot of other stress because your father is so ill. Just take one day at a time, the Holidays are going to be hard for you this year, do something in your sister honor, donate something to Easter Seals or where ever she went or buy a Christmas ordiment that reminds you of her, we do that every year in honor of my Father, Every year we buy a Dad ordamint and we also feed the birds out side, that is something he always did. I still think of him everyday and it's hard. Time dose heal some what but it's always a sad pain that stays with you.
    Karen W.

     
    Sponsors Lightbulb
       
    Old 12-31-2006, 02:40 PM   #32
    shawm
    Guest
     
    Posts: n/a
    Re: My angel marcia

    Thank you for taking the time to share your good news about David's recovery. I'm sorry I took so long to reply but, it's a full time job taking care of Dad...I miss Marcia every day and now that her birthday is coming up I geuss we will celebrate the way she would have like...Her favorite food was mexican and she enjoyed shopping...So we will probably go to Macayo's and then to Fry's to shop and maybe have coffee at Tully's a coffee shop in the market...I can't seem to move past those last 2 months and how fast it seemed to go...I'm going to be seeing a counselor start Jan and I hope she will be helpful...Dad is still the same and sleeping at the moment...he has some minor confusion at times but still seems ok. Later Sharon

     
    Old 01-07-2007, 09:48 PM   #33
    shawm
    Guest
     
    Posts: n/a
    Re: My angel marcia

    Tommorow January 8th would have been Marcia's 35th birthday...I used to kid her because she would be planning her next birthday party while we were celebrating...I remember the day sh was born and that she had something called Down's Syndrome...when I actually saw her in the nursery so tiny and all by herself in the corner I knew I would do anything for her and protect her...when my mother sent her to the group home I wanted to take and raise her on my own...the whole month Marcia was gone my mother was physically ill...the woman at the group home cried when we came to get her and I don't blame her...Marcia was an angel and so cute and tiny...she was unusually quiet as a baby and actually had to be woken up to be fed because she didn't cry for her bottle...I used to sits with her for hours trying to get her to say mama...she was late to crawl but once she did she would use her arms and pull herself along...when she finally tried to sit up her legs were behind her laying down and she would just draw them aounrd to the front of her and push herself up till she was in as sitting position..she was the reason I became a Hospital Corpsman in the navy...I always tried to encourage mother and read a lot about Down's...Mom never treated her any differently...she made her ask for what she wanted so she would tells us what she wanted and not just point...I would get her ready for school and she was so eager and happy to be going to school...she was so small that she could hide in the strangest places and fall asleep... I always went to her school events and took cupcakes and juice to her class for her birthday...when was little she used to love to dance in her room and would dance by herself for hours...she liked Pop Music and was very selective about what cassettes she would buy...her room was packed with furniture and she would rearrange it almost everyday...she kept it immaculate and always asked us to see how clean it was...her favorite thing to do was take long baths...we used to say she was at the spa...she rode bikes and danced and laughed and told silly jokes...but she would ask me "why I born?" and loved to hear my story of how she came to be...One day a girl named Peggy and a boy named Kayo fell in love and got married...they had five babies but there was something missing and then Mom got pregnant again and Marcia was born...and then they were happy...she would say "arms to short" or "why I different?" I told her her arms were just right for her...I would ask her if we looked the same and she said no and I said does she look like her friend and she said no and I said everyone looks different...Mom made a little songe for her: Marcia the Marcian Gale, Marcia the Marcian Gale...Her name means from Mars...sometimes she would stare up as if she heard something we couldn't hear...most kids would probably lose there hearing aides or even want to wera them but she wore them as if everyone did and the only time she lost one was when the kid next door took one and threw it down the storm drain...in fact she was never a fighter and when he would tease her she would come in crying because she didn't know why he teased her...she had a little circle of friends but once she found her best friend she dropped all her other friends and would talk only about her best friend...when she moved to arizona she talked about this friend as if she were in the room with us...then she found another best friend...I would take her over to her friend and pick her up...the friend rarely came over to our house...we invited her to Marcia's graduation from High School...and then 3 weeks later her friends mother wouldn't let her talk to her friend...I called several time and they acted as if they didn't know who I was talking about...then the finally said stop Marcia from calling again and don't come over anymore...she never forgot that friend and always refered to her as if she was always with her...in her room or shopping...everywhere...in her room she ould talk and argue with her friends...she would stop when anyone wanted to get her for dinner or shopping...I took her shopping and to amusement parks and everywhere I could think of...she loved to go to the coffee houses and have her soda while I had a coffee...she loved to shop and buy stationery and purses and wallets and backpacks...When she workd for the golden arches she would bring hoem her check and we would give her ones so she would be able to keep track of her money...I always said she could live on her own if it weren't for bills...she washed her clothes and hung them up just so...kept her room clean...made sure she took bathes and kept her hair brushed...made toast and sandwiches and eggs in the microwave...in the last 2 years she stopped taking regualr baths and stopped cleaning her room...she stopped listening to her favorite music...I once took her to a concert and spent over 200 dollars for the tickets...she enjoyed going to concerts...she spent many hours "filling out those tear out cards in magazines and credit card applications...we started looking for them when we were at the doctors...my coworkers saved them up and we all kept her supplied...she was a homebody and never really like to travel, even to see her neice and nephew in CA...once she got in the car she was ok but getting her in the car was difficult...I would pack for her and she would unpack...she always enjoyed herseld but was glad to get back home...she was a great athelete and won trophies for bowling and Gold medals for track and field and swimming...she could float like a log...afte she left school she would say "I'm too old to go to Special Olympics"...she knew she couldn't drive and she would say "I'm too old to drive"...She always said she was 18 every birthday...I was always trying to get her in day programs and finally did but I would pick her up after I went to school and Dad would drop her off...she did small assembly and they said she didn't work fast enough...I got her into another program and they picked her up and ropped her off...she seemed to enjoy herself...when we moved to another city she was unable to go and stayed at home...eventually she was awake all night and asleep all day...I tried to turn her schedule around but without support from Dad it was a lost cause...He naps all day and she took her cues from him...I tried to be an example to her by cleaning my room and talking about my going to work...when she first got sick and then went to the skille nursing home I went over to see her and once she was laying in bed wet...after I got them to help me clean her up...my sister and I finally got her out of there...then she seemed to get better...she used her bedside commode and a walker to get around...I really thought she would beat the pneumonia and valley fever...but then her leg got sore and swollen and I called 911 and they didn't ask me why I had called them like they usually do as if nothing was wrong and why did I calll them? She had deep vein thrombosis in her right leg and was unable to take heparin due to and allergy...they put a filter in her and also a PICC line ...they said she would have to be on a ventilator for the procedures...when they did blood gasses on her I held her arm down...I know how they feel and they hurt alot...she never got off the vent and was always asking for a cola...she would gesture as if drinking...they kept her NPO and would allow her some tiny sips...the night before she passed away I left her and went to work...one of my coworkers and my suppervisor said go and be with her...I didn't think a heart could beat theat fast or blood pressure be that high or a person could breaht that fast...she coded that next morning...they had layed her flat for a bed bath and as I looked in her eyes they wer fully dialated...the got me out of the room and began workng on her...I calledmy sister and she came over with Dad...meanwhile they wanted to knwo if she was a full code and I said yes...then right before sis and Dad came in they asked if I wanted to see her while they were working on her...they were pounding her and pushing drugs and at that point I just lost it and screamed at them TO STOP IT YOUR HURTING HER...JUST STOP IT SHE CAN'T TAKE ANY MORE!! I later found out they had called security ot take me out if I hadn't been taken out by my family...they were almost in tears themselves when they asked us if we wanted to stop resuscitation...we all agreed and went in to see her just slip away...she had a little smile on her face and she looked peaceful...my sister and I made the arrangements...Dad couldn't bring himself to do it...she was cremated and I brought her ashes home were she still is today...my sister inlaw has her mother in an urn at her home...I had them play her favorite music at the viewing and arranged for flowers and a plain coffin for the viewing ohter wise she would be on a table...we also decdid not to have her embalmed...when we saw her she looked so peaceful...when wekissed her goodbye she felt soft and natural...not like my mother who felt hard as stone...I think about her every day and what if myself...what if I had stayed with her or what if she had been able to lose some weight etc...I don't know if she would have been able to lose any weight but I tried...I even licked the kitchen cabinets at one point to keep her from eating all night...I know she is with Mother now and the rest of the family but I hate if when people say she's in a better place now...what was worng with where she was???? I keep thinking I wish she was here and could come back but I know that's impossible...I thin of what her perfect day would be lunch at her favorite taco place...shopping for a purse or stationery...dinner at her favorite mexican restaurant and then coffee at her favorite coffee house...the trifecta!!!...I don't know what the morning will bring but I know she will be with us ...thank you for listening.

    Last edited by shawm; 01-07-2007 at 09:50 PM. Reason: added my good bye wave

     
    Old 01-08-2007, 11:00 AM   #34
    bigsis3
    Newbie
    (female)
     
    Join Date: Jan 2007
    Location: c, wa, usa
    Posts: 3
    bigsis3 HB User
    Re: My angel marcia

    hi, i'm new to this and i just read your post. I have a sister who is 24 and she just moved in with me a month and a half ago. While i was reading i just started crying, i know that its part of life, i've lost my mom when i was 10 and brother when i was 11, but to me i can't imagine losing Lory. Like you she is my angel and my little girl. Everyone in my family new that when my other sister got married and moved out of my dad's that Lory would go to me. For as long as i can remember she has always been my baby. My husband even says he's worried more if something were to happen to Lory then my dad (who i'm very close to also). You are amazing cuz i just know that if i were to lose Lory i'd lose part of myself. God bless you!

     
    Old 01-11-2007, 03:02 PM   #35
    shawm
    Guest
     
    Posts: n/a
    Re: My angel marcia

    Thanks bigsis: I didn't feelthis bad when my mother passed away 6 years ago from lung CA. But then I had been taking care of her for a year and I saw her getting ready to go...but Marcia went so fast, I still can't get over it.
    You and Lory are probably like Marica and me, 2 peas in a pod. I used to to tell her we were twins. I am the first born and she came last but not least. She was and is our baby. I bet Lory has some interesting hobbies and is very definite about what she likes and dosn't like. Has she ever done Special Olympics? Marcia really enjoyed Special Olympics. I always thought of her as the baby I might have had at 17 and my mother just helped out from time to time looking after her for me. Bye for now, Sharon

     
    Old 01-16-2007, 03:23 PM   #36
    shawm
    Guest
     
    Posts: n/a
    Re: My angel marcia

    Just sitting here missing Marcia...I miss her more now than I did when she passed away...I think about her when I'm driving and I'll pass a store that she liked to shop at or a starbucks...Just feeling a little blue and thought I would stop and write a bit...everytime someone passes away it reminds me of Marcia...there were some clothes and a comforter at my brother's house...when my sister in law gave them to me to take home, my brother wanted to keep the top and pants...I totally understood...Well bye for now Shawm

     
    Old 04-04-2007, 07:18 PM   #37
    shawm
    Guest
     
    Posts: n/a
    Re: My angel marcia

    Hi, It's been awhile since my last post...Next month it will be one year since Marcia passed away...I had to go thourgh a trunk with her clothes in it...I had a long hard cry and it seemed to have helped a little...I did the same thing going through some of my mothers things...I didn't think I would make it but I did, one day at a time...bye for now

     
    Old 04-21-2007, 02:36 PM   #38
    Teresi
    Junior Member
    (male)
     
    Join Date: Feb 2007
    Location: Imperial
    Posts: 19
    Teresi HB User
    Re: My angel marcia

    wow, I can't believe that doctor said that. I'm sure she was an amazing person and my prayers are with her.

     
    Old 04-24-2007, 08:12 AM   #39
    kate18
    Newbie
    (female)
     
    Join Date: Apr 2007
    Location: Glenmoore, PA USA
    Posts: 1
    kate18 HB User
    Re: My angel marcia

    Quote:
    Originally Posted by shawm View Post
    Hi, It's been awhile since my last post...Next month it will be one year since Marcia passed away...I had to go thourgh a trunk with her clothes in it...I had a long hard cry and it seemed to have helped a little...I did the same thing going through some of my mothers things...I didn't think I would make it but I did, one day at a time...bye for now
    Hi--I am posting for the first time. I read yours and Marcia's story and could not help but be amazed at many similarities with my situation. My sister, Chrissy, had Down Syndrome. She was born premature, weighing 5 lbs in 1955 into a large loving family of seven children. The doctors told my mother to put her in a home and that she would never talk, walk, or do anything for herself. My parents disregarded their advice and Chrissy grew into a sweet, loving adult who was what all humans strive to be--color blind, accepting, loving, sweet, I can't say enough. She had this wonderful ability to make you feel good about yourself. She'd say "Hi, gorgeous" when I'd walk into the room, even though I may not be my best that day. She died at the age of 30, in 1986, 21 years ago from a blood clot to her lung brought on by a perforated ulcer and sepsis. She had surgery and was expected to recover and went septic and died in the middle of the night in a hospital in West Virginia far from her home in Delaware while visiting
    my sister.

    Well, my acceptance of and recovery from her death was a long,
    rocky road, one which I still feel I'm on. She was and still is my best buddy
    and I talk to her many times throughout the day and ask her for help and
    guidance. She, too, loved to write in blank books with fancy covers. She'd
    copy Elton John's lyrics (her favorite musician) or copy other books. I still
    have one of her books and many cards she made.

    Her favorite movie was The Wizard of Oz and the song "Over the Rainbow" has tremendous significance to me, to this day. Every birthday I make a contribution to Special Olympics in her memory and on the 20th anniversary of her death I donated a copy of The Wizard of Oz to the library in her memory, with the inscription "In loving memory of Chrissy, who now lives somewere over the rainbow". She was and continues to be my greatest teacher in life. I know many people don't understand the worth of people with Down Syndrome and other disabilities, but my belief is that we learn many valuable life lessons from them.

    I know the anniversary of your sister's death is near. My heart goes out to you. On the first anniversary of Chrissy's death, I sat in a corner surrounded by her pictures and cried and just wanted her to come over and stay at my house (one of her favorite things to do). We all grieve in our own way but I realize now that I went into a depression over her death that lasted many years and I should have sought help. I had no one to talk to; my parents had their own profound grief, my brother, in typical male fashion didn't want to talk about it, my husband was waiting for me to "get over it". I would occasionally talk to my two sisters about it, but they were long distance calls at the time and what a whopping phone bill there was at the end of the month!

    I truly hope that your pain becomes more bearable as time passes and you can smile at the memory of the many happy times you had with your sister.

    Best wishes.

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 01:24 PM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!