Monday, August 28, 2017


Deedee's resting place got a little piece of the birthday celebration! A dear friend visited her and brought some gifts that brightened her surroundings. Sunflowers and froggies and colors bright! 

Thank you Alexandra! Your little gesture brought much happiness and peace to our hearts. We were sad that we could not travel to PR to do this, as I try to do every year. This surprise and kindness really touched us. Our diva must be smiling from heaven. A thousand thanks!

My little warrior princess, you are not forgotten! Keep on flying high, and watching over your sister, who misses you dearly. We always love you... 

Thursday, August 17, 2017


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!








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 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!


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...).

Deedee earned her wings at 4:55AM on October 22, 2012. Our dreams and plans were drastically changed by the very unexpected... because of all things, she was most stable, she was most happy, and we were really looking forward to at least 10 more years of all of us beating the odds. Fate had something else written in her books... God needed a little mage in his realms, to help put some sass and sparkles to Heaven's flowers. And so... the fast train in which Deedee allowed us to travel came to a sudden stop. And all that its left in the aftermath of this event is... the most important and the most beautiful memories of my life.






It has been 5 years since Deedee's departure. This would have been Deedee's 10th celebration of her birth. We can only imagine what a lovely young lady she would have been... all she would achieved... how many people would she have bedazzled with her cunning mind and crystal clear soul. All in all... Deedee is not here in the flesh, but she walks with us as a guardian angel for her sister. She has given us many signals showing her constant presence... And we are both humbled and grateful for this. We always hold her tight in our hearts, we will never let go.

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!





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...


We could not get a cake, but we got some festive birthday doughnuts. I think Deedee would approve!




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...


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 

 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 

Deedee, you are always in my heart.