I've never done anything like this before...On May 24th 2006 at 7:10 am my sister Marcia passed away...She fought very hard her last 2 months here and is now with her mother who passed away 7 years ago this Oct 2nd at 11pm both were surounded by family...Marcia started out 1 month premature weighing 5lb 6 oz...no one in our family had ever heard of Down's Syndrome or as they called it then Mongolism...The doctors told us she would never walk, talk or be able to take care of herself and to put her in a home and forget about her...they didn't even want us to name her and no birth picture was taken...She was so tiny when I first saw her in the nursery under the lights for jaundice...I thought how can anyone so small scare people...This will be her story...Thank you for the opportunity to let people know how wonderful she was and always will be...to be continued.
How old was she when she died? I'm so sorry for you lose, it must me extremely hard. When my son was born, they suggested that he be put in a home, he would not amount to much, I was so offended, how could anyone make a suggestion like that not evening knowing what kind of progress this child is going to make, My son was born a little early and he had a rough start but he pulled threw, I can remember how tiny he was, he was 4 lb 1oz when he was born, he lost some weight but after a week he started to gain the weight, I was so happy, may I ask why your sister died??
Marcia was 34 years old and had blood clots in her left leg...she also had a blood clot in her left lung and it probably moved into a spot that blocked her airway...They tried to revive her 2 times but in the end it was too much for her and she passed away...Marcia had a very peaceful look on her face when she passed away and I felt she was at peace finally...After she was born my mother actually did put her in a home but she was sick the whole month Marcia was gone and when we went to get Marcia the woman almost cried because she had become so attached to her even in that short amount of time...She also lost some weight due to a milk allergy and was on soy formula...she never really drank milk but her last 2 months in and out of the hospital she drank quite a bit of milk...how old is your son?..and how is he doing now? Thank you
My son is 20, his name is David, He dose have some health issue's such a Keratoconus of the eye's-(he is going to need cornea transplants), He has a small hole in his aorta and also he has mytro valve insufficiency-(which means someday he is going to have to have a valve replacement in his heart). he is a very happy guy and very funny, he loves to sing to music-(he really sings off key)-sometimes you can't help but laugh!!!
How was your sister health her entire life? Was she sick allot? It must be very hard dealing with your sister's death and I'm sorry for your lose. She is up in heaven with your Mom , Your sister has no idea she has done this but she has complete her job here on earth and that is-she made you and your family better people, I know my son has made me a better person, he has taught me allot-such as patients and appreciating the small things in life and he gives out allot of love and happiness, those specail needs people have a specail way of doing that.
Hello, David sounds like a great guy and you are lucky to have him in your life...Marcia'a health was actually fairly good until these last 2 months...she had her vaccinations and possbily the worst case of chicken pox I've ever seen...But there were no problems with her heart and her only real health problems were her crossed eyes and hearing loss...Hearing aides were a real help to her and she had 2 eye operations wich lasted for a while but the eye muscles loosend up again and her eyes began to cross back...when she went to school she used to love to dance and would dance until she was just covered in sweat...in her room and every friday at the school dance...by the time she reached high school she began to slow down and the heavier she got the less she danced until she just didn't want to go to the community dances at all...She loved her music and she always had a radio on...Thank you
Oh My Gosh,
David is the same way at dances, he would be ringing wet full of sweat and would not get off that dance floor. It's kind of funny that Downs Syndrome have almost the same interests, music, dancing and movies. Your sister sounded like a sweetie pie, she really touched your heart and sole, When David goes to Easter Seals he has allot of friends that are DS, they are all so lovable and I also have come to find out that allot of them like wresting, David loves wresting. My daughter and myself volunteer to help out, I always feel good inside when I leave becasue They appreciate everything you do for them . I know you miss you sister a great deal, you miss her sweetness and her love, Now she is sharing it in heaven.
Hi Karen: She was a sweetie but if she didn't want to do something, nothing on earth could persuade her otherwise..like the time we were in Kmart and she wanted to keep shopping...she sat down in the store and wouldn't move...it took some negotiating to get her to leave the store...she always wanted to shop alone and it was almost impossible to find Her...i just realized that if I stopped looking for her she would find me...it was like radar...she always had her favorite spots...accessories and stationery...she loved office max and staples...it's hard to realize she's gone...i don't think I've fully accepted that fact and sometimes I feel like I'm just waiting to explode...like I'm waiting for the other shoe to drop...i don't know what will happen but it's always there in the back of my mind...I never understood why my Great Aunt left her sons rooms just like they left them when they died...now I understand and I have Marcia's room and her spot at the kitchen table ready for her...thank You
If something ever happened to my son, his room would remain the way it is. I'm sure when you go in Marcia's room and you feel a sense of peace, you look at all her things and it brings back so many memories, her room is a very specail place, it's a part of her. I have a feeling this is going to hit you like a brick wall someday soon, from the feedback I have received from you, it seems to unreal yet, the holidays are going to be very hard and this year is going to be the hardest, How is the rest of your family dealing with this.
Looking back at the the time Marcia was home between the 2 hospital visits, maybe she already knew she wasn't going to come home...she had almost no appetite even for her taco bell burritos (her very favorite meal) and she was talking very little if at alll...I think I can count the number of words she spoke...also she had started signing instead of talking...she didn't really have much interest in anything at all..not even the Food Channel that she loved to watch...I guess I didn't want to think about the possibility that she wouldn't be able to recover...it all happened so fast from the time she first went into the hospital April 9th the first time and was discharged from Boswell and Life Care N Glendale April 28th...Marcia was home a total of 3 weeks and was admitted to Del Webb on the 17th of May and gone by May 24th!!!I'm still in the what if stage and second guessing myself...THANK YOU
I keep thinking about Marcia's last 2 months and how I didn't see her doctor the last 3 days she was in the hospital...with her heart rate sky high and blood pressure too...she only breathed in 10% of the 10% most people use...her oxygen levels were pretty low, usually in the 80-82%...I don't think she had any pain...at least she never seemed to show any signs...I still don't have her death certificate and the doctor that treated her has never called to talk to either of us about what happened...Dad got his feeding tube out on monday 6-12-06...the doctor just pulled it out right there in the office...I think Marcia's death took a lot out of him...he doesn't seem the same...THANK YOU
I sure your Dad is somewhat up in age and something like this is extremely difficult especially losing a child, I have a friend who lost her son at the age of 33, she had a very difficult time, she was even having panic attacks, she is back to work, she'll do real good for about a month and then he is a mess. The lose of your sister is going to be very hard, I'm glad she didn't suffer because that would have stuck in your mind. She is at peace now and she is with your Mom, she is not alone. Do you live at home or dose your Dad live my him self??
Hi, my Dad and I co-own a house in az...He is 75 years old and has guilt over her death...he has a hard time looking at her pictures...I'm not sure what he thinks he could have done...right now I have to make sure he is eating enough since he had his feeding tube removed...today I fell asleep 2 time driving home and I slept most of the day...one of the units in the hospital where I work smelled like an ashtray...I can't figure out how patients can come to the hospital and still smoke???There shouldn't be any smoking on the hospital grounds by anyone visitor, staff or patients...I guess I wasn't happy enough for one of the nurses aides because she asked me if I was having a bad day...I don't feel like I have to explain myself to her as long as I'm not rude...I just wasn't cheerful enough I guess...I guess I have a decision to make about my work situation...change to days and stay here or look around for something closer to the house with daytime hours...thank you
It's sounds like your Dad is taking it hard and because he is from the older generation, he dose not want to share his feelings, my Father was the same way. Why did your Father have a feeding tube? What kind of health issues dose he have? I assume your work third shift, My husband worked third shift in the Er for about 5 years, that was hard, then he was a assistant of heart and brain surgery and was on call all the time, we never saw him, them he moved to the cardiac cath area and that was a little better.
It's hard to hold your chim up when your dealing with a death in the family and a sick Father, make sure to take care of yourself!!!!!
my father had throat cancer and was unable to swallow anything for quite a while...he is better now, but still is a bit weak from the radiation and chemo...sometimes I don't know what to do with myself...I think I have too much time now...alll I can think about are the times I snuck out on her so I wouldn't have to look for her in the market when she would go off by herself...she really didn't ask for much...she really liked to buy address books and small organizers...she would write in them for hours on end...I still can't figure out why but sometimes she would tear out the pages and keep the shell...she kept her room tidy until the last couple of years when she began to stop taking car of her things, doing her laundry or taking care of herself...I tried to both show her by example and to help her with her things...I don't know if I was putting my expectations on her or helping her reach her potential...all she really wanted to do was stay at home and do her thing...she didn't like to travel, but always enjoyed herself once we got there...looking back now I think moving from Glendale to Surprise was a bit of a shock to her even though she didn't say anything...our mother passed away at home there and she had lived there for over ten years...THANK YOU
I just keep thinking about what might have been...I never thought about Marcia dying before me...I can't seem to put her things away...I just left them on the kitchen table as if she was coming back...I washed her bedding and all her clothes to be ready for her but now I don't even have anything with her scent on them...I miss her sooo much...it might sound funny but I miss holding her small warm hand when we cross the street...I hope she did all she wanted to do...Dad says he feels guilty for not doing more with Marcia...I tend to agree with him on that one...as a retired person he had more time than I did as a working person...my sister Linda always felt that I was asking too much of him...no I don't think so..,.yes she was hard to keep track of when she went out with anyone, but that shouldn't have stopped him from at least taking her to the store or out for a little lunch...THANK YOU