LOOKING UP TO YOU

Forever guiding our paths...
Always missed.
Loving you, my little star...
I hope time goes fast enough
so you can be in my arms again.

Mommy

HURRICANE MARIA AFTERMATH

Sadly, it has been over a month since Hurricane Maria devastated Puerto Rico. Communication with family was non-existent for 3 weeks. Thanks to a friend we learned all were well, and we finally got to exchange a few words. Our family is from the Western side of the isle, from Mayaguez. News did not really covered the rest of the area, just Area Metro, mainly because they could not reach any place because of blocked areas, flooded areas, landslides and the like.




The good news is that both my mother's home and my great-aunt's home were not badly damaged. So that was good. My great-aunt got water around 3 weeks after the hurricane, and light around 2 weeks ago. So far they have food and the basics. The rest of the island have not been that lucky. I have been deeply worried as my mother has cancer and has not been able to get her treatments... she's 75. My great-aunt needs constant supervision just to make sure she is fine and doing the basics, she is 94.


The hurricane highlighted the facts that I am far to help, and they need help... We cannot move to Puerto Rico because our life is where our immediate family is right now... My sister lives in Ohio with her husband and 3 kids. I live in Florida with my husband and 1 kid. We are trapped as there is no money to just travel to make sure things are ok... or take of business... Money is always a big factor that molds our lives into following the rat race and ties us up from doing what we want to do... simply because we don't have the means... Heck, we need help and we can't get it. Adding Hurricane Maria to our stress list, making it to the top of that list, has made life unbearable. There is no worse feeling than being powerless... not being able to do what your heart wants to do...




All in all, I wonder how things are doing in Deedee's resting place. Water must have got in... The beautiful flowers that our friend left there must be gone, everything cleared. It saddens me that I cannot just go there to reminisce while being close to what was... But then again, everything about the hurricane's aftermath is completely saddening.




There is hope for a new beginning in the isle. I have faith on that. I do not doubt nature will make the island beautiful again. What I doubt is the people... There is a big division that now is very noticeable... the good and the really bad. I keep faith that the good will prevail and the bad will get what they deserve.




November is here, daddy Mark's birthday was 2 days ago... Kali wants a necklace with Deedee's face... Our little family keeps running as the little train that could... Making things happen is becoming a big challenge... but we never give up.




10-4

AN UNEXPECTED HAPPY GIFT

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... 

DEIRDRE'S 10TH BIRTHDAY

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...).

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.

 MEMORIAL 2013 MULAN

MEMORIAL 2014 TANGLED

MEMORIAL 2015 LION KING

MEMORIAL 2016 JASMINE

MEMORIAL 2017 TARZAN

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.

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.