On this day, AUGUST 17, 2007, 10 years ago, was born the North star of our lives. Deirdre Valeria Medina Rivera, a little spellbound entity, changed our lives forever. We had no idea that she would literally take us far, far away, to explore galaxies we had no idea about. Quiet and well behaved, thoughtful and wise beyond her age, even as a baby she bewitched because of her big bold eyes that spoke of things beyond us.
Because of Deirdre we fought the system. Because of Deirdre we left everything and started over in a foreign place, with only luggage and the certainty that wherever we were there was us and that was enough. Because of Deirdre we were pulled into the realms of endless hospital stays, endless medical professionals coming and going in our open home, endless heartache for we knew the ending... and endless hope and courage because we knew that the pages between the beginning and the end needed to be filled with an epic unique story filled with adventure, love and faith.
To any newcomer that may not know by now, Deirdre was diagnosed with a terminal illness, Spinal Muscular atrophy Type I. This diagnose is a death sentence, and parents are told to take your baby home and enjoy him/her until their passing. They give the child one year or less to live. SMA babies have severe muscle weakness so they cannot move, need breathing assistance, need feeding assistance and may not speak. Their minds are intact.
So, our Deedee was not able to lift her head, she could not move, she needed a gastrostomy tube (also called a G-tube), she needed non-invasive breathing assistance via a bi-pap ventilator, constant suctioning so she would not choke with her secretions, and because of bad intubations her vocal chords were affected and she could not speak.
Her first 3 years were spent almost constantly at PICU at the University Hospital of Newark, because of pneumonias. Her main care was under Dr.Bach, the expert of non-invasive treatment of SMA. The staff at the PICU became an extended family. We learned how to basically run a PICU at home. We faced flatlines, staring death right in the eye, way too many times. At home, we had nurses coming and going, mostly going as they would go once and become too scared to handle Deedee. Daddy Mark and me were the constant caregivers that understood how to handle and react to every single episode and alarm... and that was the main reason we could not work. Daddy handle all physical aspects (nurse training, respiratory care and respiratory therapies), I handled all administrative aspects (research, calls, appointments, advocacy). Only one nurse had what it took to stay with us through most of the years, Nurse Mashaela. One nurse, out of a pack of over a hundred.
When Deedee turned 3, she started preschool. Her teacher was Mr. Farina. He stayed as her teacher until the end. He helped us demonstrate just how bright and spunky Deirdre was. He treated her as a normal girl that just happened not to be able to speak or move. He shared a very special connection with Deedee, and she looked forward to every next day for every next lesson. He helped us in our main mission of giving Deedee a reason to want to live, to want to overcome so many obstacles. And thanks to him, she did with much happiness.
Our fondest memories are from the Camp at the Newark Museum. They made an exception for her and allowed her to assist while being supervised by me and by her nurse. It was there that Deedee played with other kids, and even participated on theatrical plays. She was ecstatic with this. She was an elephant, she was an Egyptian, she danced using her wheelchair... I felt that she had a taste of freedom and of real childhood when she attended the camp. Yes, at the camp she was herself... our diva... Our free diva!
SESAME PLACE
CAMP PONTIAC
BOO AT THE BRONX ZOO
VIRGINIA BEACH
CRAYOLA PLACE,PA
TURTLEBACK ZOO
CAMDEN AQUARIUM
Deedee's world was filled with special outings and special people who made things happen. Thanks to Nurse Perinette we had Deedee's first outing. It was to the Bronx zoo. After that, thanks to the Starlight Foundation we had outings to the Camden Aquarium, the Sesame Place and more Bronx Zoo. We visited the Insectropia, where Deedee touched a tarantula and other fun animals. We visited Virginia Beach thanks to a special foundation. We went to Camp Pontiac in the wilderness!
LITTLE AIRPLANE
Little Airplanes Productions had us too to make one of Deedee's dreams come true: Being in a design studio (she wanted to become an animated artist). And then, we had big plans as Deedee was accepted for her Make a Wish trip to Walt Disney World to meet Pocahontas, her favorite Disney princess!
5TH BIRTHDAY
Deedee's life was filled with love, beauty and wonder. She lived to the fullest, always smiling with her eyes, always eager to explore more. She touched many lives, and she demonstrated many times how deep were her thoughts and her feelings. On Deedee's last birthday with us, she dressed up as Pocahontas. She was ecstatic with the mural of Grandmother Willow and receiving a plush of Meeko (Pocahontas sidekick pet). Many good news were in the horizon, as well as many plans (the Disney trip by Amtrak, hippotherapy (horseback therapy), new school year...).
MEMORIAL 2013 MULAN
MEMORIAL 2014 TANGLED
MEMORIAL 2015 LION KING
MEMORIAL 2016 JASMINE
MEMORIAL 2017 TARZAN
VISITING GIVE KIDS THE WORLD AUG-17-2017
This is looking down-up. At the top of the ceiling you see a portal that holds some magic... And all the dots shaping circles within circles are the stars... This is a tower. If you look all around, the place is filled with stars... Each star is a special child that was granted a wish by Make a Wish Foundation.
Between the North and the West, looking up a bit, right over the doors, is Deedee's star.
The red star marks the spot!
DEEDEE's STAR
ROUND AND ROUND WE GO
HALL GUARDIAN
WISHING TREE
Thanks to our SMA friends, the Gaynor Family, Deedee has her little place in a constallation at GKTW. Each year we go to this special place on her birthday, to honor her, gaze at the star, reminisce on wishes and dreams, and find a bit of hope. Today was no exception. If we cannot visit her resting place (as it is in Puerto Rico), this is where we visit her...
BIRTHDAY WISHES AT HOME
We could not get a cake, but we got some festive birthday doughnuts. I think Deedee would approve!
SINGING HAPPY BIRTHDAY!
BLOWING A KISS FOR DEEDEE
BIRTHDAY DOUGHNUTS ARE GONE
Happy birthday, Deirdre Valeria! See you soon, our little one!
Beauty lives on with us, as Deedee's spirit always soars before us, guiding our paths. She is our biggest love.
This year, we celebrate our DeeVa with TARZAN, another favorite movie. She loved Kala. And this song also sums it all...
YOU'LL BE IN MY HEART
Come stop your crying It will be alright
Just take my hand And hold it tight
I will protect you From all around you
I will be here Don't you cry
For one so small,You seem so strong
My arms will hold you,Keep you safe and warm
This bond between us Can't be broken
I will be here Don't you cry
'
Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more
You'll be in my heart
No matter what they say
You'll be here in my heart
Always
Why can't they understand the way we feel
They just don't trust what they can't explain
I know we're different, but deep inside us
We're not that different at all
And you'll be in my heart
Yes you'll be in my heart
From this day on
Now and forever more
Don't listen to them
'Cause what do they know
We need each other, to have, to hold
They'll see in time, I know
When destiny calls you, you must be strong
I may not be with you But you got to hold on
They'll see in time, I know
We'll show them together
'Cause you'll be in my heart
Believe me you'll be in my heart
I'll be there from this day on
Now and forever more
You'll be in my heart
No matter what they say
You'll be here in my heart
Always
Always I'll be with you
I'll be there for you always
Always and always
Just look over your shoulder
Just look over your shoulder
Just look over your shoulder
I'll be there
Always
Deedee, you are always in my heart.
