Wednesday, August 14, 2013

Thankful for their story....

This is a story about a Strong mommy! 
One that loves both her children with everything she has! 
This is coming right in the nick of time.
Make sure that you take the time and swing by for this event! 
Music and fun at Majestic Mountain Coffee in Kingston to celebrate their 20th anniversary. There will be hot dogs and hamburgers and coffee with all profits donated to a local boy's medical fund to help. And a band!
Where: 11229 Hwy 104 NE Kingston
When: 4:00 PM
Who: Everyone
How: Stop by!

Enjoy their story as much as I have. 
We will touch base with this amazing mommy and her story often.
so please stay tuned. 
Our story begins four years ago when our son Isaac was 6. He had a fever that just wouldn’t quit and eventually led to him being hospitalized for 2 weeks. He had encephalitis caused by the cold sore virus. You would never think that something so simple, so small, something like the cold sore virus, could kill you or your child but it can, it is rare (1 in 500,000) but it is possible. When the cold sore virus attacks your brain your chances of surviving are miniscule. We were lucky in Isaac’s case because despite the doctors thinking he wouldn’t live, he did. Isaac woke up after 2 weeks in the hospital and he didn’t know who we were and he could no longer walk, but he was alive. Luckily, after lots of rehab those things came back to him and he became your average kid again except with one major difference, he now has epilepsy.
Being the parent of a child with epilepsy is tough. Four years of living with this disorder terrorizing our family has never gotten easier. There have been the times that Isaac has had seizure freedom and while the lack of seizures is a blessing, the constantly wondering and worrying about when they will strike again tear at your heart on a daily basis…the nightmares and fear of them returning is almost as stressful as the seizures themselves. You can be relatively sure that they will one day return but you just don’t know when or where. Will they come back while he is swimming? While he is walking down some stairs? Or will they wait until we think they are gone for good and we let our guards down, wait until he turns into a 16 year old boy with his drivers’ license and is behind the wheel of a car?
Then there are the times when he has daily seizures, when they get so out of control that we become ridden with thoughts of them never going away or of them one day taking our son from us completely.  Most people don’t realize this, but epilepsy is very dangerous. To put it into perspective, epilepsy takes more lives every year then breast cancer does. Shocking right? We had no idea it was so serious before it started affecting our son. Isaac’s worst point was December of 2012 when he had 96 seizures in that one month. It getting so bad led us to Seattle Children’s and phase one monitoring for a temporal lobectomy. 
Brain surgery offers Isaac a chance at a cure, a chance to have a normal life, but it is an unknown. Any surgery is risky and even contemplating brain surgery is anxiety inducing. With surgery comes the risk of stroke or even death which is no worse than the risks associated with uncontrolled seizures but is still somehow scarier. Isaac was approved as a candidate for surgery and given about a 60% chance of being cured but right around the time he was approved, his seizures stopped. It is easy to say yes to surgery when your child is having up to 5 seizures a day but now that he is 4 months seizure free, the hope that the medicine will continue to work forever clouds the decision.  Why take such an enormous risk when it might not be necessary? We made a family decision along with Isaac’s team of doctors to delay surgery until he stops responding to his current medication which can be tomorrow, or never.
You would think that with all the blood draws, ambulance rides, tests, doctor appointments and hospital stays that Isaac would be a depressed kid but he is exactly the opposite. His brave smile and ability to turn any situation into a positive one never ceases to amaze us. Most kids cry during blood draws, Isaac laughs and jokes about it. Most kids are bored and miserable during hospital stays, Isaac makes the most of it by playing games and enjoying our family time. Isaac gives us hope and keeps our spirits high, if he can remain positive and happy through all of this, what right do we have to be miserable? It affects him more than any of us and if he can smile, so can we. We all have our moments when gets to be too much and we break down, but we let ourselves grieve and move on, taking it one day at a time. 


Rose @ Walnut Acre said...

I'm so sorry your family is going through this but am encouraged by your story. My son began having seizures in July of 2012 and it's been a roller coaster ride. We're not sure what is causing his seizures.

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