As many of you know, I have been researching how to turn this blog into a book (or a “blook”, if you will). One of the suggestions was to get ‘guest bloggers” on your site, to increase awareness of your blog and to keep people interested. The guest blogger should have a similar subject matter to talk about, and have a similar tone as what you have been writing.

I immediately thought of Trish, a girl I went to school with and who inspires me every day. Both she and her two children have helped my soul in more ways than you can imagine. Their story touches my heart and I am happy to share this with you now. I hope it makes you feel and think as much as it does for me.

Nic and I went to the same high school but did not run in the same circle.  We didn’t even know each other.  It took a little girl by the name of Olivia to have us connect on Facebook.

Olivia and her brother Mikey were born with a very rare and terminal metabolic storage disorder called I-Cell.  They were both born missing the lysosomal enzyme which breaks down the complex carbohydrates in the cell.  Without this enzyme, the “junk” in the cells has nowhere to go and eventually destroys the cells and the organs.

Olivia and Mikey became Facebook sensations because of the videos and the pictures and you could tell that these two kids, despite their disabilities (can’t walk and very small in size) – it wasn’t about what they couldn’t do – it was about what they COULD do!  People would look at the videos and the photos and just get a chuckle at the zest for life these kids have.

Olivia died in my arms on December 11, 2009 – 10 days before her 5th birthday.  Below is my last picture with Olivia – she died a few hours later.  I had such hope on this day – they were going to get her off the ventilator and I could hold her in my arms again with no tubes or wires and she could talk to me again, I could hear “Mommy” and “Love you Mommy”.    Instead, she left my arms to fly to Heaven to do her work up there – to guide us all, to help us realize that life is too short, to not take things for granted.  To live – and not just exist.

After Olivia (a.k.a. “Cookie) passed, the outpouring of support was overwhelming.   Family, friends, friends of friends, strangers  — reached out to me with support, sympathy and just to let me know that they were there for me – and Nicole was one of them.    It took me a week to get through all the emails and voice mails.  People didn’t know what to say to me – I was avoided by quite a few because they didn’t know how to address me (and just as an FYI – if someone loses a child, all you need to say is “I’m sorry and I care” – acknowledge it and don’t avoid it – -it just makes it worse!).  Nicole, despite the animosity that she faces, the pain and the unknown, she was there for me and I will forever be grateful.  A year and half later, we still have not physically met (I am in Florida and she is in New York) but she and I have this bond like we have known each other all our lives.  Our situations are bit different – she has a disease that SUCKS and I have lost a child and will have to address this again when it is time for Mikey to earn his angel wings.  But what is not different?  The two of us are SURVIVORS!  We don’t dwell in the negative.   You can’t dwell in it – it will pull you down and yes, the both of us have our pity parties and wish that we could have a day like any other “normal” person.  However, our worlds our different from others and below is a story written by a mom of a child with disabilities – and this was the eulogy I read at Olivia’s funeral:

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Nicole and I are both on a trip we did not plan.   But on this trip, wonderful things have happened.  We have met each other, we have realized the strength that we have, we realized our true friends, and we realized how absolutely blessed we are.  Holland isn’t that bad of a place after all.

Olivia Grace Armand

12/21/2004-12/11/2009

http://www.OliviasCookieJar.org