Tuesday, March 25, 2014

Purple Day

I have said it before and I will say it again, every day in our house is epilepsy awareness day.  But this day, as we frantically try to prepare for Jack's 5th birthday (I'm freaking out that I'm about to have a 5-year-old) we all make sure to wear purple.

This is how old Jack was when he started having seizures.  He was diagnosed with a catastrophic form of this devastating disease.  We were told there was a 95% chance he would be severely mentally retarded.  (That doctor is thrilled that he was wrong!) but I will never forget holding this baby and sobbing in the neuro's office that day. 

There are so many people that we have met along this journey, others who struggle as well, others who have uncontrolled seizures too.  I'll never forget getting a phone call from a friend one weekend asking if we could come get their daughter because EMS was on their way to the mall around the corner because their son had been seizing for 15 minutes and emergency meds didn't stop it.  That seizure lasted 45 minutes and he couldn't walk correctly or talk well for several days.

So, while we "celebrate" to some degree, we celebrate the good days, the days we don't see seizures, the milestones that come so easy to typical children that mine and those like him have to fight for.

I am so proud of him and how hard he tries.

We will never forget surgery to try and stop them.  It helped, and we would do it again if we needed to, but it was HELL and no parent should have to go through that.  I won't ever forget changing my shirt 3x a day because it was soaked in his spinal fluid or sleeping in a crib for 10 days.

And I'll also never forget the support that came form so many people.

Jack is such a loving boy.  He is so kind, gentle, and fun-loving.  He has friends... (and a girl friend)

He loves his family...

Believe me, he has his moments, and given his issues they are usually bigger than most kids moments...

But he is my hero.  

And just like in the years past, we wear purple for Jack.  So many people are unaware of the facts about epilepsy.  That epilepsy kills about 50,000 each year, which is more than breast cancer.  That 1 in 10 people will have a seizure in their life.  And that per 30% of people with epilepsy suffer from intractable epilepsy, meaning seizure meds don't stop their seizures.  

We will never stop fighting for you, my Jack-a-roo!