My sister & me (long & about MR)

[Guest guest]

Dear ones,

I remember the day my sister was born. I was at that time the oldest of 3 and

the other 2 were boys. YUK!! I was so glad to have a sister. From the get go

my sister was different. She had some health problems and some physical

problems that today are a lot like DS. It wasn't until she went to public

school that she was diagnosed as mentally retarded and she went to the

Special Ed room. My brothers and I adored Kim,( that's her name.) We were

always teaching her and we were always there for her. We all enjoyed our time

with Kim and as children we protected her from all the " bad " things kids

encounter coming and going to school.

Kim didn't seem to need a lot of friends. I think it was because we were

always there. We grew up and all went our separate ways. My parents divorced

and Kim stayed with my mom. Our brothers committed suicide in their 20's. At

that time we knew nothing about " chemical imbalances " . This left us all

shattered. After that my dad had a massive heart attack and we thought that

we had experienced so much that surely there couldn't be anything left. Guess

again.......Now, I always knew that Kim would come and live with me someday.

I pictured that we would be " old " . I didn't know it would be so soon.

My dad died 3 weeks before I had . The thought of the child I carried

helped me through my grief at that time. I was shattered to find out he had

DS shortly after his birth. My mom was wonderful. She sent me flowers and

cards and held my son with so much enthusiasm as I sat like a basket case.

After all, she already knew what I was to learn as life goes on. She assured

me that all was going to be fine and I felt that I never needed her more.

Funny how when you look back on certain things you see that there is a

" purpose " to every thing.

My sister lived with my mom as I said, and my mom wanted to be present for

the birth of . So did Kim. I thought this was great and I would be able

to share this with Kim since it was unlikely that she would be a mom. So

there we all were, together on that day. 's birth was very easy. As I

lay there and 's cord was being cut I looked over at my sister and saw

that she had more nurses than I. She had passed out and they were putting

smelling salts under her nose. LOL

After was born my mom had a simple surgery. To make a longer story

short she had a complication and I was left to make decisions for her life. I

made decisions that I knew she wouldn't want, but I couldn't loose her!! I

needed her!! She was going to get me through this DS thing!!! In the end,

nothing could save her and you're not going to believe this, but I was there

with her when she passed, holding her hand. I was terrified!! Amazing though,

we had talked about how we would want to die in the presence of someone who

loved us to help make death easier many times through the years. I was

honored to be there for my mom.

Kim came to live with me that day. I tried to be her sister, not her mom,

though I knew I would have a lot of say over things she may want to do. I

have been very fortunate. Kim never made my life difficult. I shared as mush

as possible with her. The good, the bad and the ugly. She shared with me the

loneliness associated with being " different " . There were many times that I

felt her envy for my life and the things I had and it broke my heart.

Last week she came to me. She had an ad from a newspaper in her hand. A

friend from her job cut it out and thought she might want to answer it. It's

no secret that she is looking for a partner, though she has never had one. I

had no idea how I was going to talk her out of this. She can't do this! Damn

if I didn't get out my writing paper for her. We made a rough draft. I was

careful to " small talk " in this letter. Not too much info because you just

never know. Kim wanted to print the letter and I told her that she should

write cursive instead. Her writing looked like a child. I kept thinking how

are we going to do this!! I have to help her, but it can't be from me. It has

to be in her own words, but her words are not what she wants. The letter was

short and sweet. Here she added a P.S. to it and gave her phone number. I

nearly died when she told me about that.

He started calling her. They talked many times. Surely he has to know Kim is

MR!!! I kept waiting for the ball to drop. Next thing I know he's coming to

our house. They made a date. I was going to meet him. Now he will see she is

MR and we will have an awkward time trying not to hurt any one. I have to

tell you I was upset, but always with a smile for Kim's sake. The day came

and she was still in the shower when he rang the door bell. I was the one who

had to answer it. I took a deep breath and opened it. There he stood.

Handsome, tall, and dressed in Dockers with a nice shirt. I thought " great!

this is going to be a long night " . In the moment that someone smiles there

are many unsaid things that pass between 2 people. I don't want to brag, but

I have been able to " size " some people up in that brief moment. Too bad that

didn't help me when I met some of my future husbands though. So on my porch

was Dave, smiling at me and extending his hand for a shake. I saw something

in that smile I saw all my life. It was the pure joy in meeting someone, the

purity without all the pretense, the purity of a child. Dave is MR too. I

can't think of any other way to put it, so I hope that that offends no one. I

watched my sister leave after a few hours of idle chatter to assure me that

she would be safe. She's happy and I hope Dave will be around for a long

time. Isn't life funny at times?

Take care,

Judy

[Guest guest]

Judy,

Thank you for sharing your story. It really touched my heart. My daughter

was 14 when my son Reuben(ds/autism) was born. She had so looked forward to a

baby brother or sister. (we had been trying for 13 years to have another

child.) She has had a hard time dealing with Reuben's DS. She has always

said, though, for me not to worry about Reuben. That she and her husband

would always be there for him when we could not be. She now has a beautiful

baby girl of her own, and I think she realizes what we must have gone

through. I am giving her a copy of your post. I think it will give her hope

for the future. Like you said, You never know what life will bring.

ita

[Guest guest]

Judy, You have touched my heart! Sniff, Sniff.

& Garry, parents of (9 ds), (8 ds/g-tube), JJ (6

ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted.

[Guest guest]

Judy

What a beautifully written story.

I think there are few true honors in life. Being with someone as they die,

as they are born, donating an organ, and caring for people who are

different (for what ever reason) are what comes to my mind as honors for

me. Sounds like you have been quite " honored " .

I wish your sister much luck.

Kara

[Guest guest]

Judy,

This is a beautiful, touching story. Thank you so much for sharing with

all of us. Bless you for being you.

S

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[Guest guest]

Judy,

Your story touched me like no other,through all the tears while reading it.

[Guest guest]

Judy,

Thank you for sharing your very personal story with us. I am so sorry for

all of your troubles - it's difficult to believe so much can happen to one

family. Kim sounds absolutely delightful, and I admire and respect you for

taking her into your home. Keep us posted about Dave and how things are

going.

I understand what you mean about it being an honor to be with your mom as she

passed from this world into the next. I was with my aunt, talking to her and

looking into her eyes as she passed. I'll never forget the look in her eyes

and the smile on her face as she took her last breath. It was a truly

incredible experience that words cannot accurately describe. My aunt had

never married and had no children, so I was grateful to be able to share the

last few hours of her life with her and that she did not die alone. I'm

sorry that your mom was taken from you so soon, but I think it's wonderful

for both of you that you were there for her at the end.

Again, thanks for sharing,

Maureen