Devastation, Guilt, and Peace: My Beloved Aunt Peg

This is the last photo I have of my Aunt Peggy.  It is also my favorite.  True, it is nearly 2 years-old, her eyes are closed, Ellie isn't looking at the camera (but she does have a look of awe while staring at her great aunt), and it is dark, but it is indeed my favorite for it was that night when I was reminded that our family is completely wonderful and perfect.  A family blessed with two people sporting an extra chromosome.

Three Generations of Awesomeness

Margaret "Peggy" Bruns passed away on on Friday, December 14th.
My youngest aunt.  My father's youngest sister.  My inspiration.  She would have been 54 years-old on December 27th.

One of my favorite memories took place nearly 3.5 years ago at my baby shower.  I invited her to sit next to me on the couch.  Together, we open each and every present for my unborn daughter (who we did not yet know had Ds).  Together, aunt and niece, we help up each tiny little onsie, each little dress, every colorful toy.

Back when my cousin M was getting married, she was so excited because she was attending the wedding.  She would be flying on an airplane.  She kept exclaiming to me to me "John Denver.  Rocky Mountain High".  It was her way of reminding herself that the wedding was in Colorado.

To say that I am devastated is an understatement.  I have lost my aunt.  She is gone and I will not see her again in this life time.  I wasn't there to hold her hand in the end even though I was told she probably wouldn't have known me.  Fifty-three years-old.

For those of you who have followed this blog, you know that I have written about Aunt Peg before. You know that she was awesome.  You know that she has a sense of humor that can send you laughing until your sides hurt.  You know that I firmly believe my Grandmother, who passed just before I became pregnant with Ellie, whispered in God's ear to give me a child like hers.

Aunt Peggy had Down syndrome.  The same as my little Ellie.  It was pure coincidence that both of them had designer genes.  It was a coincidence that my grandmother and I had children with Down syndrome at the "young" age of 29.

Despite her youthful appearance, so common in those with Ds, Aunt Peggy was considered "elderly".  People with Down syndrome tend to age quickly or have "advanced aging".  Aunt Peggy, inspite of chronologically being only 53 yo, was in a body that was betraying her.  A body that was shutting down.  A mind that was displaying significant signs of Alzheimer's.  She was having frequent infections, confusion, needing to consume foods in a pureed form (she would recommend the McDonald's fruit parfait).  She was confined to a wheelchair in the end.

Yet, even with her advancing dementia, my Dad could never trick her:

Dad: "I'm your favorite brother, right?"
Peg: Tosses him a look.
Dad: "I am your favorite, right?"
Peg: "No, Buddy".
Let's face, we all know my uncle Dan was her favorite!  She knew until the end which brother was which.

I cry her.  I cry for my daughter.  And I feel guilty.  I could not / cannot help but feel that this was/is a sign of what is awaiting my Ellie.  That Peggy's fate is my daughter's fate.  That I will slowly watch my daughter die in a body that defies her.  In a mind that would no longer recognize her mama.  Oh heaven forbid, that she would die alone.  Peggy had 4 older siblings.  Siblings who rallied around her.  Siblings who sat with her and comfortingly told her that it was "okay to let go".  My Ellie has no siblings.  No brothers or sisters.  Will she be alone?  Will she be with a mama who is also confused?  Or all alone as I would have already passed?

I am wracked with guilt.  This is not fair to my Aunt Peggy.  This is not fair to Ellie.  All life is precious and no one knows what the future may bring.  Life is fleeting.  Our time in indeterminable.  I am going to celebrate Aunt Peggy's life.  I am forever grateful for my Aunt Peg.  She taught me what is to love unconditionally.  She taught me to look at the ability in disABILITY.  My life with her made me realize I could raise Ellie.  I am relieved that she did not die alone, but rather with her beloved brothers and sisters by her side.  That she had a hospice nurse to make her comfortable in her final days.  Peggy was loved and was loved deeply.  She will never be forgotten and she will be forever missed. She was/is an inspiration.

Aunt Peggy, I love you and I miss you.  May you be rocking out to John Denver's Rocky Mountain High with your mom, your dad, and all the angels.  --Your Favorite Niece

He will raise you up

on eagle's wings.

Bear you on the breath of dawn,

make you shine like the sun

and hold you in the palm

of His hand.