Monday, January 4, 2016


My husband, Chris and I, have never been ones to shy away from a big goal for our sons.  One of the biggest goals we set 8 years ago was for our son, Joe to walk the graduation ceremony with his classmates at Columbine High School as a Senior.  Of course, I had to blog about the experience in hopes that is would help other families facing some of the same challenges we faced to see that it is possible.

“Challenges” is really too minor of a word when I speak about the daily things that we face each day with Jake and Joe, our sons both diagnosed with fragile X syndrome. (  Sometimes I think a more appropriate word would be impossibility!  Any person diagnosed with a cognitive disability can have difficulty with simple that others may arrive at more easily.  In the case of our sons, speaking, taking care of their own personal needs or even being around other people and things can cause overwhelm.

My husband and I, over the 24 ½ years since diagnosis, have learned many methods and strategies to help us help them.  We continue to hone our skills in these methods and approaches every day.  In 2016 we have set a very lofty goal where we are going to need to muster every ounce of experience from our past to help us meet the goal.  It is possible that we may have raised the bar too high, but only time will tell.

In the past 20 years, we have become avid campers and currently own our fourth RV, we adoringly nicknamed “Rocket”, after a character on a children’s television program, "Little Einsteins".  We have had the privilege of traveling throughout the U.S. in “Rocket”, hitting all of the lower 48 states, all the while visiting other families touched by fragile X syndrome along the way.  Why not make a goal to get to Hawaii, we thought?  Seems like a nice goal, right?  With this lofty a goal, we anticipate many challenges to come. 

The very first stumbling block is the fact that neither of our sons has been on an airplane.  Never.  Ever.  This fact lends a itself to many hours of worry in a Mother's mind!  It's also one of those times when I wonder why on earth we never made flying a priority!  Would'a, should'a, could'a.....We have no idea if the loss of air pressure as we ascend in the aircraft will bother them.  We have no idea if we will be able to keep them occupied during an almost 7-hour flight!  We have no way of knowing how long the security line will be on flight day.  And this is only to mention a few of the things I have begun to worry about.
So, naturally, I shift into to my panic modus operandi whenever I approach a problem.   I will start with what I DO know:
-I will take on the task of calling, calling, and calling to find out about any programs that are offered by either TSA, our airport or other airlines that might help us do some sort of practice.
-We will make a plan to take 2 other short flights (destination unknown) to help prepare us during the 11 months prior to our departure to Hawaii (hopefully cheap flights).
-We will attempt to fly first class even though it will cost a significant amount more. I already know that United Airlines is the only airline that flies non-stop from Denver to Honolulu, so we’ll book that as soon as possible to secure it.  I suspect first class will allow us more room as well as early boarding onto the plane.  It’s a chunk of money, but we will forego any other trips in 2016 and save our, in the words of our son Jake, “bucks”! Anybody have any spare miles they want to will us?
-Our destination in Hawaii will be the Disney resort so that it is highly motivating for the guys, and builds some level of familiarity. We will harness our helpers from our last Disney trip to help us book this one, too, since I am not familiar with anything there at all.  Watch out Missy Zolecki and Me and the Mouse Travel!
-We will plan to take our most trusted friends in Daniel and Amanda with us.  Jake and Joe would much prefer to hang out with them, anyway.  It will add some extra cost, but the goal is to make the trip successful, and this will definitely do that.

There are a number of other logistical issues that must be addressed as well, but they will wait.  By booking the flight and resort early, it will force me and Chris to stick to this goal.  Not that it’s not a fantastic goal, but it poses some scary hurdles.  I think this might be the biggest goal we have ever set….or perhaps since a huge majority of it is so out of my control, it may just seem lofty. I like to do stuff I can control.

Sure, I have fears!  But, I have 11 months to work through them.  It’s important for Chris and me both to take this time to work through our own fears so that we can be calm energy for Jake and Joe.  Any sign of fear will likely cause the plan to fail. 

This will surely be one of the most expensive goals we have ever set, too!  It is not a fact that we take lightly, but we'd like to make it a reality for all of us.  Any person that doesn’t know us might ask, why we would put ourselves through this kind of stress when we know it will be tons of work without any guarantee of the outcome?  The answer is simple.  We strive to make our sons’ world bigger.  Life with a disability can be limiting enough without us setting boundaries.  We just need to work hard to make new things possible in a way that allows them to reach up to meet the bar.  Hawaii here we come! 

As I formulate an action plan and check off items, I will update this blog with our progress.  Thank you for reading!
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