Happy Birthday Drew!

Today would have been Drew's 13th Birthday.  He would've been a teenager and I can't believe it.  These last few months have been hard, especially the holidays, but today is a different kind of hard.  We always celebrated Drew's birthday big.  Big party.  Big balloons.  Big cake.  So to honor his birthday I wanted to do something special, especially since I knew I wouldn't be with my family today.
I knew I wanted to make 13 of something and send them to families who love and were inspired by Drew.  I got really upset a few times when trying to think of an idea because nothing I was coming up with seemed "good enough".  Then when I got the idea to make candles, I cried.  I love burning candles and my collection is excessive.  But more importantly, Drew's favorite part about anyone's birthday, especially his own, was blowing out the candles.  So sending everyone a homemade candle to light in honor of Drew's birthday or whenever they're thinking of him was perfect.  I know he would have loved it.
Happy Birthday, in heaven, Sweet Angel! We're all blowing out your candles with you in our hearts.  I hope you're celebrating by running, jumping, dancing, belly-laughing and playing with the hose!  I miss you terribly! XOXO

A Different Christmas

Christmas was different this year.  Not only was it the first time that I felt like I was "going home" for Christmas, it was the first one without my cousin, Drew.

Drew loved Christmas.  Drew still loved reading "Twas the Night Before Christmas" and he still threw reindeer food and his face still lit up when we talked about Santa.  He was the magic of Christmas.

As with any loss, you have to learn to adjust to your new life and carry that person's memory with you wherever you go.  It's still so hard and my heart still aches everyday.

We started a new Christmas tradition this year in Drew's memory.  Prior to Christmas my aunt and uncle brought a small Christmas tree to the cemetery.  On the day we all went to celebrate Christmas with Drew as a family, we each brought an ornament to decorate the tree.  We also brought balloons and wrote messages to Drew.  We stood around his grave and said prayers before letting our balloons go together.  I couldn't believe that when we got back in the car, "It Won't Be Christmas Without You" was playing on the radio.

My aunt and uncle plan to bring the Christmas tree to the back yard of their home, where Drew used to run and play.  They plan to plant it next to a tree my uncle planted the year Drew was diagnosed and hope to continue this tradition for years to come.

This Christmas we didn't take a picture of the "cousins" because it's still just too hard.  Baby steps.

The Bracelet On My Wrist

The other day as I was having a conversation with a new friend I saw her glancing at my bracelet a few times.  The bracelet that I've worn off and on for 7 years but hasn't left my wrist since September 30th.  The bracelet that sometimes can either bring me to tears or make me smile in an instant when I look down at it.    The bracelet that has a story much different than I ever thought.  The bracelet that's a bright royal blue and reads "Drew's Hope" in white letters.  I wanted her to ask me about it.  I wanted to tell her everything about what the bracelet on my wrist symbolizes.

Maybe it's because I miss him so much or because the new friends in my new life don't really know his story.  But I wanted to tell her and I didn't know how. I didn't know how to tell her that "Drew's Hope" is the name of the foundation my aunt and uncle created for my cousin.  That Drew's Hope has been a staple in my community back home- raising money and awareness for Batten Disease research.  That because of the money raised Drew was a part of innovative research for the disease and others throughout his life.  And mostly I didn't know how to tell her that we lost him just 2 months ago.

But as a whole the bracelet means so much more than that.  It symbolizes the hope for a cure.  The hope we had for a miracle.  The hope that Drew is an inspiration to others.  The hope that Drew was a part of research that will be innovative in changing medicine.  And really, to me, the bracelet reminds me to still have hope even though he's gone.  To be grounded in my faith, even when that's shaken to the core.  To find the good even when parts of your world are falling apart around you.  And to be eternally grateful for the time I had with him and the countless lessons he taught me.

Drew was an angel on earth and this bracelet symbolizes everything he stood for.

 

Fly High Drew

Drew Ferrandino

February 1, 2002- September 30, 2014 

For the past week or so I have been trying to find the words.  The words to say to Drew in the days after he passed.  The words to say to my dear cousin who just lost his brother.  The words to say to my aunt and uncle as they mourn the loss of their son.  The words to say to my mom as her heart breaks for her younger brother.  Or even the words to get me through this.  The thing is, there are no words.  My heart just hurts.

My heart hurts for my Aunt Katie.  Drew was her world.  Her days revolved around taking care of him.  She knew his needs and his comforts like no one else.

My heart hurts for my Uncle Tony.  He would have done anything for Drew.  He is a human encyclopedia (my aunt is too) about the disease and spoke at many conferences about finding a cure and what it's like to raise a child with special needs.

My heart hurts for Gavin.  He was the greatest big brother to Drew.  He included him in his baseball tournaments where Drew was an honorary mascot.  He was also so gentle, caring and loving to Drew.

And my heart hurts for us as a family.  What will life be like? Holidays? Birthdays? Trips? And all the other get-togethers?  How can we ever call it a "cousins" picture again, because we'll forever be missing one.

Though to most of us 12 is way too young, for Drew it was a full life.  We celebrated his 5th birthday a few days early because doctors told us he wouldn't make it until then.  Then he was given a life expectancy of 8-12 years.  With a number of scares, Drew lived a full seven and a half years after being diagnosed with Batten Disease.  He did live a beautiful life- full of love and memories.

Drew was an inspiration to all whose lives he touched.  From his first seizure to his diagnosis to his stem cell trial to his spinal surgery and every hospital visit in between, his strength never wavered.  Drew inspires all of us to defy the odds and keep smiling no matter what is thrown our way because that's what he did until his very last breath.

Though I'm sad for us, I'm happy for Drew.  I'm happy that he gets to run and play and jump and laugh and be a jokester- all things he loved to do before the disease took them away from him.  I'm glad he no longer has limitations.

My heart may hurt forever, but the comfort of knowing he's with Jesus and at peace takes the sting away just a little.  I'm grateful for the years we had with Drew and the countless lessons he taught me about strength, fight, courage, hope and faith.

The coming weeks and months are going to be hard, for all of us, but I know we'll get through it and live each day with Drew in our hearts.  His inspiration will live on forever.

For more information about Drew or to make a donation to help find a cure for Batten Disease please visit www.drewshope.com

  

Band of Brothers

Back in December Connor and Caden Long were awarded Sports Illustrated Sports Kids of the Year.  Caden is a young boy with cerebral palsy who is confined to a wheel chair.  His older brother Connor competes in Triathlons with Caden in tow.  Their story touched my heart and completely brought me to tears, but my words don't do it justice.  Below is the video of the Long brothers.

Video

Now, once you've whipped your tears I want to share another story with you.

 This is my cousin, Drew.  He has Batten's Disease.

Drew developed normally until the age of 3 with only a slight speech delay and was then diagnosed with epilepsy when he started having seizures.  We knew this was not the answer.  My aunt and uncle continued to search as our family watched Drew gradually lose his speech, use of his hands and the ability to walk and eat. 

Drew was diagnosed with this rare neurological disease just days before his 5th birthday in January 2007. Batten Disease is a fatal degenerative neurologic disease that leaves children blind and bedridden with a life expectancy of 8-12 years. Those with Batten’s Disease are unable to produce an enzyme needed to clear toxins from the brain. Without it, permanent brain damage occurs that affects the child’s ability to talk, walk, see and even eat. Its onset usually occurs between the ages of 2 and 4 years. (source)

Drew has since been a part of stem cell research and has undergone surgeries on his hips and extensively on his back.  (Before and After pictures as well as info of his back surgery here)

Though we currently do not see any degression with Drew's disease, we do not see any progression either.
There is no known cure for Batten's Disease. 

Though Drew can only communicate through few facial expressions, we, as a family, know he loves being involved in our activities.  Drew is a part of us and is always included.  

Drew is included in wiffle ball games, fishing on the boat, bowling, attending baseball games (he loves the Phillies), among countless other family activities!

With this post and story of the Long Brothers as well as Drew, I wanted to bring emphasis on the fact that children with special needs not only on rely others to enhance their life, but that they can enhance others' lives so much more.

I thank God everyday for Drew and the lessons he has taught me.

Drew participating in the Special Olympics, April 2013

Family at Hershey Park, June 2009

Drew and I at the Drew's Hope Fundraiser, 2010

With Drew at the Special Olympics, April 2013

To learn more about Drew and his Foundation, Drew's Hope, please visit his website at www.drewshope.com