Saturday, March 6, 2010

What do you do when...

you are informed that your second cousin has unexpectedly passed away.


Well, naturally, you attend the funeral...right?


Let me give you more information:
This second cousin is on my biological mother's side.
My bio mom and her cousin would party...hard...together.
I have many vivid memories of time spent with *Richie, my second cousin.
Being awakened in the wee hours of the morning...our moms having the "munchies".
Heading out to a 24 hour restaurant...wondering why we were the only ones there.
Not feeling hungry, but enjoying the adventure.
Richie was about 4 years older than I...he was fun and funny.
I have a handful of memories that include Richie's sister.
She was a bit younger than me.
She had special needs...I remember being mortified that she wore diapers at the age of 10.
When I looked back on those memories as an adult, I thought she had CP.
I felt like she couldn't walk or talk.
I was aware that she wasn't always around because...her home was an institution.
Another strange concept for this little girl to wrap her brain around.


That was my perceived truth...here is the actual truth.


*Anne was born with Down Syndrome.
She was born 32 years ago...at a time when babies with DS were institutionalized.
She never spoke intelligibly, never toilet trained, and lived her entire life in a State Hospital.
Developmentally she was frozen in time...she was forever 3 years old.
Her older brother, Richie, visited her every week.
Their mother passed away several years ago.
Their father has not been in the picture since they were children.

Here is my question:
Who attends her funeral?
My heart broke.
For him, for her, for the extended family...never knowing her.
So many missed opportunities...unreached potential.
Inconceivable...the difference 30 years makes in our perception of "disabilities".


So...I went.
I attended the funeral of the family member that I never had the opportunity to know.
I...along with approximately 10 others...paid my respects to Anne and Richie.
She rested in her casket...trimmed in pink.
Just a handful of flower clusters around her...with ribbons reading "Princess".
Inside, tucked under her small hand...her baby doll.
Very obviously loved dearly by her...tattered clothes and matted hair.
She wore a pink shirt, complete with sparkles.
Somehow it all looked so "right" and appropriate.
What broke me most was...the subtle sound of sobs coming from the front row.
The amazing women, who had loved and cared for her.
Her "family" from the Home.
There were approximately 7 of them. *yes, the majority of attendees*
Hugging and loving on each other.
Gently leaning in and kissing her cheek.
Making sure everything in the casket was...just so.


Again, I am changed.
Moments I pray that I never forget.
Life is so fragile...short.
No regrets...physicians don't always know best.
Advocate, encourage, inspire.

*the names have been changed...just because.

9 comments:

Candace said...

Oh Amber, my heart cries out for this young lady and the people who cared for her. We are so fortunate that our children came into the world just a generation later. Think of how different things would be...Good to see you writing, friend....

Linda said...

Your writing inspires and challenges me. I am glad that I happened upon your old blog, and am looking forward to reading this new chapter.

Violet said...

Wow. That's an amazing post! My Dad had a friend with a sister who had a disability. She was
institutionalized. My Dad went with the brother to visit her (her parents never went to visit) and it changed my Dad. It impacted him greatly. So much so that when his daughter (my sister) was diagnosed with a disability, he almost punched the Doctor who said she'd be better of dead. He fought to get her the services and help she needed to help her reach her fullest potential. That daughter now has a beautiful 2 year old son whom SHE is rasing. That sister is getting married in 5 months old. THat baby girl who would be "better of dead" is happy, healthy, and conquering her "dis-ability".

I'm so glad that Ann had people who did love her in the home and who will miss her. I'm glad that our country gives many of these children a chance.

The Portas said...

What a story! Wow. I'm glad you had the chance to go and pay respects.

I'm also glad that you aren't totally gone from the internet. Yay!

Melissa said...

Wow, how glad I am that times have changed and disabilities are seen so differently now. But how sad I am that many of these "children" were not loved and cared for by their families.

ellen charge said...

i will follow you where ever u r lol i found you in moriahs blog comments and chis to i orginaly found you through victorias page se posted a couple of links to thinkgs you wrote about oru moriah and i read i felt as tho you were a loving caring person and i am rite i have charge to jsut like oru m and chi tho not as severe as them or in soemways yes to learn more jsut see my blog hugs ellen

Becca said...

Oh my goodness, Amber. This is so sad. I'm so glad you went to her funeral, and so glad she had been surrounded by people who cared for her in the end. I'm thankful EVERY day that things are so different now for children like my beautiful little girl. You have such a good heart. Thank you for sharing this.

Kristen's mom said...

My eyes fill with tears. Kristen was born 23 years ago, she had a very old pediatrician at the time, I remember his words, "there is a place for children like this." I wish he were still alive so I could show him that there is indeed a place for children like this...In their home with a loving family!

stephanie said...

I found you from Becca's blog. I wasn't going to come here because I knew it wasn't going to be a happy post, but i had to read it.
Her sweet life could have been so different. I'm sadder than I thought I would be, but thankful I am able to hold my little one, and know that her life will be different. Thirty years is not such a long time when you think about it, a lot of progress has been made,but there is still a long way to go.
Thanks for sharing this.