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
I JUST KEEP WAITING FOR THE OTHER SHOE TO DROP AND WHEN I REALIZES HOW FINAL MARCIA'S PASSING IS I'LL FREAK OUT OR SOMETHING...EVERY TIME I SHOP AT FRY'S OR WALGREEN'S OR OSCO, ALL I CAN REMEMBER IS HOW MUCH SHE ENJOYED SHOPPING FOR DATE BOOKS FOR ADDRESS BOOKS...I WAS IN WAL-MART YESTERDAY AND WAS IN THE SCHOOL SECTION AND SAW A LOT OF THINGS THAT MARCIA WOULD ENJOY...I'VE BUILT A SMALL SHRINE TO MARCIA IN THE HALLWAY TO MY ROOM...PICTURES, ANGELS, HER CABBAGE PATCH DOLL (LOOKS LIKE HER,EVEN HAS SHORT HAIR LIKE SHE HAD) FLOWERS FROM THE SERVICES THAT I DRIED AND THE BOX OF STUFF FROM THE MORTUARY...I JUST ALWAYS THOUGHT THAT SHE WOULD BE THERE AND WE WOULD ALWAYS BE TOGETHER...I WAS FINALLY ABLE TO PUT HER STUFF ON THE DINNING ROOM TABLE WITH THE STUFF I'VE ASSEMBLED IN MY HALLWAY...HER PURSE AND WALLET AND "WORK"...IT HARDLY SEEMS POSSIBLE THAT LESS THAN 2 MONTHS AGO MARCIA WAS HERE AND NOW SHE'S GONE...JUST LIKE THAT IN THE BLINK OF AN EYE...AND WHILE I KNOW SHE'S IN A BETER PLACE AND WITH NANA GRANDPA AND MOM...I CAN'T HELP BUT MISS HER EVERYDAY...THANK YOU
Last night I took another route to work last night and drove by the Walgreen's that Marcia and used shop at...all I could think of was how I was always in ahurry to get going and how little she seemed to want...shop a little and do her work... play with the dogs and listen to her radio...her room was as bare a nuns room...no art on the walls..no dresser...very few nick nacks...she had a set amount of clothes that she wore and nothing else...sleeveless t-shirts and stretch pants...sandals...anything other than that would be take out her room and put somewhere else...she had 2 plastic 3 drawer cabinets and a hamper...her clothes where compressed to make room...he bed was pushed against the wall to make room...I bought her an area rug to keep her from spilling on the light colored carpet that came with the house...when she was little she had impeccable manors and was so neat and tidy with her room.l..she had a room full of small furniture and used to rearrange it almost daily...from time to time she would edit out a piece of furniture and bring in a new piece...she cleaned her room and did her own laundry...she bathe 2 times a day for hours on end...we called it her spa and used to say she was at the spa...she was very neat about herself...during the last 2 or 3 years she began to stop doing her laundry...I used to tell her5 not to wash every day and to wait till she had more than 2 pieces of clothing...mother and I tried to get her to stop rearranging her furniture but eventually I realized that this was almost a hobby for her and she really enjoyed it...she used to like going to the Peoria reccenter and dancing but the last year or so she just stopped going... I don't know what changed her mind...I know that it was better not to ask her but just to let her know to get readdy to go to the dance...or to go to day care...I feel like I made a big mistake by selling encouraging Dad to move to a smaller house...her respite person stoppped coming and she didn't have any day care center to go to for over a year...by the time I found her one she only went for a couple of months...then I was so wrappped up in taking care of my Dad that I was unable to take her over and the van schedule was too early for me to be able to get her up in time for them to pick her up...she seemed to lose interes in bathing taking care of her laundry or going anywhere...then she got sick and she never really recovered from that...pneumonia and valley fever, UTI...she was in a skilled nursing facility for a week and there wasn't any rehab to speak of 1/2hr a day maybe of physical therapy and occupational therapy combined...they kept saying she was incontinent because she wasn't able to get up to the bathroom by herself...I came in one day and she was in bed and wet I made them clean her up and tried to tell them she was on a foley in the hospital and was still very weak from being in bed all day...My sister and I finally got her out of there and she was able to use the bedside commode and a walker to get about the house...I was giving he her breathing treatments and helping her with her meds...her apptetite was very poor and but she drank a lot of water which was unsual for her as she had never been one to drink water before...this lasted for about 2 weeks and then she got sick and I had to take her in to her primary care md...while we were there she had an episode and got confused and SOB and unresposnsive...the md and I just looked at each other and felt she needed to go to the ER...by the time the paramedics got there she had had a breathing treatment and a GI cocktail...they seemed a little sceptical as to why we feltshe needed to go to the ER...by time the ER md saw her she was responsive and her vitals were much better...the md seemed to feel I and the PCP had been a little hasty in calleg the paramedics...and why was she there anyway...I work at this hospital and I have seen people admitted for far less that that...we went home and a week later she was unalbek to get out of bed becauce her leg had swollen and was very painful..."Every time I call 911 about a dozen paramedics come and the always seem to question why I am calling for help...this made me hesitate calling for over an hour...I finally called and they agreed that she needed to go to the ER...her leg was painful and she had a fever and was SOB...she had blood clots in her left leg and she was feverish...they were unable to put in the filter that would keep the clots from traveling to her lungs or heart because her bleeding time was too high...2 days later they were able to put it in and put a PICC line to help them take blood for labs...I can't believe how much they did to her...arterila blood gasses and a foley and lab tests up the wazooo... I didn't think a human could go through all that and not be screaming her head off...she was so brave and didn't complain...maybe this was part of the problem...she was never able to let us know if she was in pain or sick...the only way we could tell was when she got very quiet and didn't want to do anything...I found out that if her hand were very warm she had a fever...this was 100% accurate...the last 2 days before she passed away her heart rate was over 100 and her blood pressure was way too high...her breathing was very shallow and fast...I can only hope that she was not in any pain...I went to work very reluctanly and when I got there my coworkers Deb and Rosie said just go and be with Marcia...I stayed with her all night and one of the last things I was able to do for her was to give her some Pepsi by using the sponge mouth moisteners and dipping it in the Pepsi...the morning she passed away i was looking at her and when I opened her eye to see how she was doing both her pupils were dilated...they called a code and had the rescue personel work on her...while I was waiting I called Dad and Linda to get over there as quick as they could...by the time they got there I had been in to see her and I again looked in her eyes and only one of them was dilated this time...they worked on her again and one of the nurses aksed me if she was a full code...meaning resucitate her...I said yes and as they were working on her they asked me if I wanted to see her...when I saw her they were doing CPR and god knows what else...I just lost it and screamed at them to STOP IT THEY WERE HURTING HER...TO JUST STOP IT SHE CAN'T TAKE IT ANYMORE!!!!! and by that time my sister and Dad had gotten there...the doctor came in and told us they could keep bringing her back but there wasn't a lot they could do for her...the 3 of us made the decision to let her go and we all went in to see her....I whispered to her that it was alright to go and be with mama that she had finished her work here and that we loved her....then she was gone I later realized that they had called security because I had freaked out...my sister and I made the cremation arrangements...the mortuary people were very nice and the services were very peaceful...I had them play Michael Bolton for the service and the viewing...it was very healing...about 2 weeks later I went over to get her ashes...my Dad has a hard time looking at her picture without feeling guilty about her passing away and what could he have done for her that he didn't do...H's take it very hard and I still haven't fully realized that she's gone ...I think I'll close for now before I accidently erase my blog...thank you
I guess I'm looking for forgiveness that I can't seem to give myself...I feel like I didn't look out for her best interest regarding weight and excercise...she weighed almost 240 lbs when she first got sick and enven then I was unable to persuade my Dad that even though he wanted to eat it didn't mean that Marcia neede or even wanted to eat...she never turned down any food...I even went as far as locking the cabinets in the kitchen...and I was not able to keep her going to any outside activities...she would always say no if she was aked to go out but if you just told her to get ready to go she would pretty much agree and get ready to go...Dad never wanted to push her to go and Mom did the same thing...so even though I tried to be an example to taking care of my room andk personal hygene and working full time...she looked to Mom and Dad as examples...not good since both of them were retired...It still seems hard to believe she was only ill for 2 months and then she was gone ...thank you
Please don't blame yourself for anything, she had a family who loved her , allot of special needs people cannot say that, I volunteer at Easter Seals, My son goes there, last Christmas I had asked allot of them-"Are you going to see your family at Christmas?", One of them said, no-ever since I was put in the home I never see them or I keep call my family but they never call back, so many of them were just put in a home and forgotten, which is sad, it truly bothered me, you gave your sister joy, love and allot of care, we some times all have regrets after someone we love passes, it's hard, My Father has been gone for 7 years and I still think of him every day, he will always be in my heart. I'm glad you made a special wall in the hall way for Marcia, if she was there she would love it and she would be proud.
KarenW, sorry I took so long to reply...Between my Dad's shingle and my back spasms it's been a busy week... My Dad had mentioned several times that Marcia wouldn't live past 34 years according to her md...He can't however tell me how the md arrived at this exact age and what he or she based this information on...It's almost like the md put an expiration date on Marcia and she turned 34 this past Jan 8th and then passed away 5 months later...There was never a time that I wanted to put her in a group home...but before Marcia became sick she was so misrable to live with that I wondered if she might be happier in a group home and come home for the weekends...I couldn't seem to motivate her to take care of herself and her clothes or her room Marcia used to be so meticulous about her clothing and person...She arranged her clothing and room in a very precise manor...She would bath 2 times a day and kept her hair neat and tidy...When she ate she was also very meticulous, but she gradually got to the pot where you could tell what she by what she spilled on her shirt...When Mom passed away she never really got over it...When Marcia got upset or confused the would say Moms gone or she would say her borthers names as if to say she would tell them and they would let her do what ever it was she wanted to do...Marcia was always asking me "Why I born?" or "Why did Mom die?"...I tried to answer as best I could without confusing her...I told her that Mom was very sick and very tired and she went to heaven to be with God...I had a little story for her about why she was born...I told her that her Mom, and her Dad,fell in love and got married and had a girl, Me then a girl, then she had a boy and another girl and another boy ...but they needed a Marcia so Mom had one more baby that was Marcia...She was so tiny and cute when she was born and that girl Marcia grew and went to school and graduated form High School and here we are Marcia and Dad and Me Sharon...She would aslo ask "Why I different?" and I told her everyone is different...I told her that she and I were not the same and Linda and her were different and Dad and Mom were different...that all people were different so we could tell each other apart...She aslo felt that her arms were too short, but I told her that they were the right size for her and her legs were the right size also...I hope she felt some comfort in my explanations and my story about why she was born...She always liked hearing the birth story and would ask me to tell her a story... I told her Mom was in heaven with Nana and Grandpa and that we would be with them when her died and went to heaven...I think about her every day and try to take comfort that she is with Mom in heaven...Thank you