DEIRDRE MEDINA's DIARY: A LITTLE MAGE in the FAMILY
In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Monday, August 17, 2020
WE HAVE A TEENAGER! HAPPY 13th BDAY DEEDEE!
You must miss the marathon of taking you to the Museum Camp on Summers, visiting sharks at the Aquarium, being greeted by giraffes at the zoo... grasping the might of dinosaurs or just the lovely starry night at a campsite in the mountains... You must miss our adventures filling up the pool in our living room so you could move like a mermaid... You must miss our road trips, wary of the wheelchair when it was kept in the back of our small car and we feared potholes... You must miss meeting Kali and having her next to you while watching your favorite cartoons... Also having her during your classes as she turned out to be a very special assistant in your at home classes...
You must miss how we celebrated everything! there was always an excuse to dress up in costumes and let imagination run wild! There were pop-up books that brought stories to life! And exercise with your running device... And bright hair colors because your "divaliciousness" was always spot on! Yes, you must miss being with me for so many hours while I beaded and braided your hair... when you held the little beads like precious stones while I slowly went on, strand by strand... You must miss sleepovers listening to the Spanish songs about the little ship that couldn’t sail, the curtains in the room, Mambru goes to war and the cat that was drowning in a well… Everyone wonders why Spanish kid songs are so tragic!
So many things you must miss… because I know I miss doing them with you. I remember you, your dreams, your passions… You wanted to be an animation artist. You looked forward to meeting Pocahontas in Disney. You looked forward to more campouts in the mountains… and to Trunk & Treating with new friends… and to doing therapy with horses with your very special friend… and visiting the sea again, but in your homeland Puerto Rico… and being with your family, all of it. The world was at your fingertips… You would dream it and we would make the wings so you would fly. God granted you real wings.
We miss your voice, little one… your voice that no matter what we always heard. And your sister misses growing up with you… looking up to you…
I know for you it will be a blink of a wait, waiting for us to be together again… Close your eyes and make your wish, baby girl… We will soon be there forever. In the meantime… Enjoy your family in Heaven… and visit often your family on Earth… And catch the sweet kisses we blow for you every night before going to sleep.
Loving you always. Remembering you always.
Happy 13th birthday, dear Deirdre Valeria... May you watch over us and smile. We”ll be there soon enough, love. Until then, we will be, for you.
Keep shining on us!
Mommy, Daddy and Sis
Monday, August 19, 2019
Saturday, August 17, 2019
HAPPY 12th BIRTHDAY DEEDEE!
Dear Deedee:
Don't you ever think that we have forgotten you... You know very well that's not the case. We talk to you constantly, every day. Your sister always wishes for you, and I am certain she feels you very present in her heart. She sometimes get mad because you are not here with her, and she feels lonely... Well, it is up to you to let her know that she is never alone, and that you cover her with your lovely angel wings whenever she gets in trouble. We know you watch over her. We know you do so many little miracles for her... We know how you pamper her. Forgive her. Like us, she gets crossed because she cannot give you a big hug. Knowing doesn't ever agree with the heart...
Days are going so fast that I barely have time to catch my breath, or think about anything at all. I'm in the race, focused on making one dream come true so things fall into place. We are still misplaced, and you know it. You must get amused whenever we go crazy with our routines... You remember when I stayed up all night so many nights at the hospital, doing those webdesign projects? Nurses thought I was razy. You knew better. You slept soundly because you knew I was watching over you. That was my excuse to do so. I did my best to keep you safe... I hate that it was not enough.
So... I am studying. Sleeplessness has come back. Your sister was puzzled at why I had to study. She was baffled that me being "so old" was back in school. Well, one thing is certain, she is getting some modeling about being responsible and doing homework. Her reading has become flawless. She is into Harry Potter these days, and read the first 3 books quite fast. Now she's into the audiobooks... I wonder if you would have become a Potterhead too... Since you liked adventure and fantasy I'm inclined to think so. You were a tough cookie, but your mind was always flying into world of adventure and magic and songs. You would be into things like "Harry Potter: The musical". You were quite in deep with music... The soundtrack of your life is quite varied... and beautiful. A mix of metal and pop. Sugar and spice.
This summer was much bittersweet... I thought camp would be good for your sister, like it was with you... What you experiences in the Camp at the Newark Museum and that weekend at Camp Pontiac was amazing and powerful. You were surrounded by love, and experienced how love works. Kali is far from experiencing that... You know she has some issues... even if she's very bright and caring, she's been facing a mean world. Camp was ok for her, but she didn't really want to go because the people were keeping her apart. she felt so lonely... It broke my heart to listen to her. I did not expect what I heard. And on top of that, she cries and asks why you couldn't be here with her.
What can I say? What can I do? I miss you the same. I encourage her to look for you in everything that she do. Last week we went to Sea World. As we walked towards the entrance a butterfly fluttered around her, and then followed us for a while. When she saw it she immediately light up and exclaimed: "Deedee is with us". You know it. You always see this. I bet you smile being proud of her and of how she keeps you present. When we passed by Sesame Street, I had this knot in my throat... The little waterpark brought back so many memories of the Sesame Place... Remember how we covered everything in your wheelchair with plastic bags, and daddy just rolled you into all the sprinklers and streams? You had such a blast! You loved every second. Being there near the water sprinklers made me cry. Bittersweet memories... A perfect moment in time... We were surrounded by you. Yes, I know. You made your presence real strong last Sunday. Your birthday gift to us. "Sunny day, sweeping the clouds away... On my way to where the air is sweet".
Remember this?
Visit often, my love. We all need to have you around, even if just in spirit. Your sister needs you. Daddy needs you. I need you.
Hopefully we'll look at the starsand find the peace that only your eyes could give me.
Happy 12th birthday, my precious diva.
Love... Always.
Tuesday, October 23, 2018
REMEMBERING OUR DIVA: 6 YEARS ANGELVERSARY
Wednesday, July 4, 2018
RIP UNCLE STEVE
Deedee's godfather, Steve Sepulveda Ojeda, passed away last February. It has been very hard to acknowledge this fact... Steve was a pillar in Deedee's life. He was always there for her, both during the 5 years that she was with us and after her departure from Earth. He was also our best friend for over 30 years.
Steve was hard on the outside, molten marshmellow on the inside. He went above and beyond to make everyone around him happy. He was Deedee's favorite person, often visiting him in dreams, letting him know that life in Heaven is swell and that she was free of all earthly nuisances...
Steve was my right hand, best friend, partner in crime, coffee mate, ship counselor, brother from another mother. I took long to write this as his death hit me very hard, almost as hard as Deedee's death. The impact of both deaths has taken a big toll on me... Regardless... I had to say it here, as he was so important for Deedee as well... We know they are now having fun out there in Heaven, waiting for us. Both are free.
In the meantime... Here on Earth we miss you both... So much...
Rest in Peace, Uncle Steve. Now you are One with the Force. Give giant hugs to Deedee for us!
Monday, April 23, 2018
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