My "Other" Life...A R.A.R.E. Story

This is a home design/craft blog.  I love to create new things and paint...anything, lol.  It's who I am, what I enjoy.  But there is another side to my life, my "other" life.  That's the part that I want to introduce today.


If you've ever looked at my "about" page on my blog, you've probably seen that it is blank.  I have been hesitant to write that page until now.  I'm a private person and really didn't want my personal life to be a part of this blog.  But now I'm going to share a very personal story with you because I want to promote the R.A.R.E. Project's blog hop today.  More about that later.


When I was about 20 years old, I mapped out a plan for my future life.  It went like this:  graduate from college (undergrad), go to four years of optometry school, earn my doctorate degree (Doctor of Optometry), start working as an optometrist, get married and have children.


I followed that plan and became an optometrist.  I got married and had a wonderful son (now 16+ years old). Unfortunately, that marriage failed and I became a single mom at 36 years of age. 


Enter my huge independent streak.  I built a house (the one I'm in now) and remarried.  I quickly became pregnant with my second son.  Sounds perfect, huh?  Still on track with the "master plan".

In 2002, my "plan" veered off course.  I was pregnant with my second child, a "honeymoon baby".  I was so happy...a new marriage and a new baby.


What I thought was a normal pregnancy ended with a full placental abruption at 35 weeks gestation.  I was at home when it occurred and my baby and I almost died that day from blood loss and lack of oxygen.  That was also my last day as a "career woman".  


I spent eight years of college to become an optometrist.  I had only worked for 10 years and was finally able to gain some "seniority" and financial security when things changed.  I never dreamed that something like this would happen to me.  


My son was in the Neonatal Intensive Care Unit (NICU) for almost 4 months after he was born.  He was born with a rare genetic disorder known as Kleefstra Syndrome.  He has severe cerebral palsy and kidney failure.  He also suffers from a rare form of childhood epilepsy known as Lennox-Gastaut Syndrome. 

"Will" (9+ years old)

When I learned of the severity of his disability, I made the decision to end my career and become a full time stay-at-home mom.  I've never had any regrets about that decision and it turns out to be one of the best things I've ever done.  I'm a better person for it.


My husband works long hours and provides our family with it's single income.  I'm sure most of you know how hard it is these days to make it on a single income.  We sacrifice alot of the "luxuries" of life to provide our son with what he needs.  Having a disabled child is expensive to say the least.  My oldest son also has to sacrifice alot of his time and wishes for his brother but he takes it in stride.  He has a special bond with his little brother and they have always admired each other.


My son is nine years old and can't walk, talk or take care of himself.  Communication is almost non-existent (only a few facial expressions).  He relies on me to do everything for him.  He is tube fed a liquid diet (similar to Ensure) and wears diapers.  

He has had kidney dialysis and a kidney transplant (my kidney).  Currently, his most serious problem is multiple seizures....daily (esp. at night).  The seizures became so severe a couple of years ago that he had to have a tracheotomy to help him breath.  Now, I add trach care to my "nursing duties".  


I write this blog late at night.  My "desk" is a table next to his bed so I can take care of him during the seizures.  Sleep is rare for me.  


I am writing this as my way of spreading the word about rare diseases.  No matter who you are, a rare disease can abruptly enter your life and turn things upside down.  Life as you know it will change forever.


Ten years ago, I had never heard of the diseases that would change my life.  I knew nothing about them.  Within four months of my son's birth, I would lose my father to one of the worst diseases ever, Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease.  If you've ever known anyone who has had this horrible disease, you will never forget it.


Did you know that 1 in 10 people are affected by rare disease?  


Did you know that almost 80% of rare diseases are genetic in origin?


Did you know that there is NO cure for any rare disease?


Did you know that only 5% of the diseases have any treatment?


Did you know that these rare conditions are chronic, life threatening and FATAL?


Why am I telling you this? 

Because I want you to know that you can help spread the word about rare diseases.


February 29, 2012 is World Rare Disease Day.  Between now and then, go to the Facebook page of the Global Genes Project to help unite 1 Million for RARE to increase awareness.  Share it on your Facebook page or website.

Wear That You Care - wear jeans on Feb. 29, 2012  (and encourage others to do so) to bring attention that genes can cause rare disease.

Donate a bracelet to the 7000 Bracelets for Hope campaign and bring hope to a child/family living with a rare disease.   

Here is the bracelet that my son received in May 2011.  I see it as a symbol of hope that one day he will find peace with his disease.

His bracelet was handmade and donated to the global genes project.  (Hint, hint to my crafty followers!).  Here is the link if you are interested in participating.

Every disease that I have talked about in this post is highlighted in blue.  If you click on it, you will be redirected to a page with information about that disease.  I hope you do so for a least one of them.  Knowledge is power.

This post is part of a blog hop coordinated by the R.A.R.E. Project (and Global Genes) taking place today, January 30, 2012.  You may read more about them here on their blog.

I am honored to be a part of this blog hop and hope that you will continue to visit other blogs that are also participating today.