Jake's Blog

It's working- Thoughts from Jack's Mom

CNFWJ: IT'S WORKING It's Jack's Mom here. I know, I know, the blog is Jake's thing - and I'm so grateful for that (more on that later). But I can't help but share something that hit me like a ton of bricks this past week. Those that know Jake and I know that we are connected to and fighting for each and every individual who is affected by NF. Many of them we do not know. Some of then have touched... Continue Reading

Went shopping for groceries and got some perspective

If you have kids and have ANY sense at all you know that taking them grocery shopping is just about the worst idea on the planet.  Well, guess what?  On Sunday, Beth and I were running around with all 3 kids (10 and under) trying to finish errands and so we HAD to go to our local Kroger store.  (Quick digression that Kroger also happens to be a big supporter of CNFWJ)!  Anyway, there we were on a... Continue Reading

I'm not scared, I'm worried.

The boy
Today was bad.  Not as bad as some, but more than most.  This was a tough week in that the priest who married Beth and I passed away and we had the funeral today. Almost 12 years ago on May 17th (World NF day) in coincidences to end all coincidences, he lovingly and graciously married us.  Today we said goodbye.  Earlier in the day, Beth and I had a follow up meeting with Jack's doctor(s)... Continue Reading

Affirmation Day

Today was one of those NF days.  All that really means is that the day is likely going to suck.  Specifically, Jack was experiencing pretty bad leg pain for the last 24 hours.  Now, it more than likely is nothing but last night in anticipation of a doctor's visit many things go through the mind and now HIS mind too.  Dad, he asked, it's not a tumor doing that, right?  He's 10 now. He gets it.  I... Continue Reading

TEN...It is a big deal.

baby boy
"And what would you intend to find?  Solitude? Your peace of mind?Holding out for something lessThan touching the hand of God?"-Kevin Griffin, Better Than Ezra.  "Closer" The video is an oldie but goodie and the song that accompanies it was written about a new Dad experiencing fatherhood for the first time.  We played it often when we were expecting each of our children.  Kevin is a supporter of... Continue Reading

Sometimes magic is not about the tricks...

2014.  Quite a year for the Burke's. For many reasons it is one I am not too anxious to ever repeat. Yet in the midst of some pretty terrible circumstances we found and experienced incredible caring, grace, love, and triumph.  The accompanying video is Jack's entry into his school talent show last week.  He decided to do 3 tricks.  Our good friend, Duane Codrington was there to film his beautiful... Continue Reading