Week 18

Dedication to Olivia

This week's blog is a dedication to a one-year old angel named Olivia.  Let me first tell you a little bit about Olivia and then I will tell you why I've dedicated this week's blog to her. 

As an infant Olivia was diagnosed with the rare Neuronopathic Gaucher's disease.  I found out about Olivia and her condition back in March, right around the time we received Ryan's diagnosis.  It was close to Olivia's 1st birthday, which I believe she spent in the hospital.  My aunt was selling raffle tickets for a benefit being held for Olivia.  I remember going home that night, with my raffle ticket stubs in hand, looking at her beautiful face and I was consumed with so many feelings.  I was struck with grief about what this little girl and her family is going through.  I was curious as to what Gaucher's Disease was and spent some time on the Internet reading articles about it.  I was upset that it was the first time I was hearing about Olivia.  Her parents are friends of the family but I hadn't seen them in a while and was kept out of the loop.  I was filled with guilt that I hadn't known about this and wasn't there for Olivia and her family during her first year of life.  I had strong feelings urging me to reach out to Olivia's mom, Melissa.  During the spring I read Jenny McCarthy's book, Mother Warriors, and Melissa immediately struck me as a mother warrior.  There is a cause on Facebook for Olivia and I went through the bulletins posted by Melissa to try to understand just what Olivia, and her family, is going through.  I can't remember the last time I cried so much.  Oh wait, it was when I found out my son was Autistic.  Back then I was devastated with the news.  Looking back, I should have been grateful that I wasn't told he had a disease that would take his life before he turned three.  But more on that part later. 

I got in touch with Melissa and we had several email communications with each other over the summer.  I was even blessed to have the opportunity to visit Olivia in her home a couple of weeks ago.  I was glad to meet her and I held her in my arms and my heart melted.  I was also in awe of what her family does to keep her alive every day.  Olivia is currently in the hospital; she's been there almost all week.  She may be able to go home in a couple of days.  From what Melissa has shared, she will go home on Hospice care and they will do their best to keep her comfortable at home for her remaining time. 

I visited Olivia on Friday.  I asked Phil to come with me to meet the angel that I now talk about so often.  My heart broke as I walked through the Pediatric ICU, past all of the rooms filled with small children, family members and nurses hovered around their cribs.  It was extremely emotional.  It was so good to see Olivia, and even as she loses this battle against Gaucher's Disease she manages to smile.  And I don't know how she does it, but Melissa continues to be a mother warrior.  She has an unbelievable amount of inner strength and the love she has for Olivia is amazing. 

There were things I could have written about this week... new foods, meds, injections, ups and downs with Ryan, yadda-yadda-yadda.  But I felt that telling this story was far more important.  By no means am I trying to say that supporting Autism is not important.  I just feel silly sometimes writing about the trials and tribulations we have with Ryan, when there are so many other children in this world who suffer far more in one day than Ryan ever will in a lifetime.  It saddens me that I can't do something about it.  I want to save Olivia and all children out there who need saving. 

I feel guilty worrying about Ryan's food; there are children who have to be fed by a tube or through IV.  I feel guilty worrying about the rash on his legs; there are children who can't walk.  I feel guilty worrying about Ryan's articulation; there are children who can't talk.  I feel guilty worrying about Ryan's eye contact; there are children who cannot see.  I feel guilty worrying about the tubes in Ryan's ears; there are children who cannot hear.  I feel guilty worrying about the way Ryan writes his name; there are children who will never hold a pencil.  The list can go on and on.  The list does go on and on for Olivia.

So for this week's post I am celebrating how blessed and lucky we are that Ryan is who he is, and grateful about who he's not.  And this week's post is for Olivia who desperately needs your prayers more than ever!

I urge everyone to read Melissa's story and her past bulletins, and join the cause the family has set up for Olivia. It's on Facebook and I can send the link to join the cause to anyone interested. Here is a link to one of Melissa's updates.  http://apps.facebook.com/causes/posts/337500
It is a touching, heart-wrenching journey. It will make you cry.  It will give you insight into a disease that you probably never heard about before. It will make you thankful for your health and the things you have to look forward to.  It will open your eyes and change your outlook on life. Well, at least these are things Olivia has done for me.

DC