Jenelle's Journey: May 2015

Thursday, May 28, 2015

Jenelle's Wish Granted! - (Part 1 of our Make A Wish Adventure!)

Some of you may not know that the Make a Wish Foundation is not just to grant "last minute wishes of dying children"... on the contrary, that dynamic makes up only 10% of wishes granted by this incredible organization. Any child may qualify for Make a Wish if that child suffers from a life-threatening medical condition who has reached the age of 2 1/2 and is younger than 18 at the time of referral. Obviously, Jenelle qualifies.

Late last summer, I referred Jenelle to our local Make A Wish Foundation office for Orange County and the Inland Empire. After completing an application, Make a Wish conferred with Jenelle's doctor, and asked for more information about our family; eventually, Jenelle's referral was accepted!

I must admit, I was apprehensive at first. I was like most people, and felt Make A Wish was a charity for dying children, and while Jenelle's prognosis is unknown, we have been told to expect a shorter life expectancy. Mutual special needs Moms who had been on the receiving end of the wish granting part of this organization encouraged me to apply, so once I realized Jack was about to start High School and soon be gone to college, and that Jenelle was growing up as well, and that with all the ups and downs in our lives the past 11 years - time was running out for a truly unique experience like this. Jenelle qualified, and her wish was just as deserving as any other child in a similar circumstance. Once the wish process began, my apprehension and guilt immediately melted away.

Because Jenelle is non-verbal, the process involved an interview with the family to determine Jenelle's true wish. In early February, the family had a sit down meeting with Jenelle's "Wish Team" to answer questions about our life - what Jenelle liked, what she needed, what we wanted to see for her, what we wanted a as a family, etc. I was moved to tears at one point discussing possible "wishes" for Jenelle. Eventually, after our discussion, we narrowed it down to two possible wishes - a Tobii device to give Jenelle a voice (so Brett could finally hear her say "Daddy"), or a trip to Disney World for a true family vacation and for Jenelle to meet her favorite Disney Character - Tinkerbell. After discussing the pros and cons of the Tobii Device with her educators (i.e. - will it work for her, what if there are glitches, etc.), the family decided on the vacation. Shortly after making the decision, it was March and Jenelle had her 15 day stay at CHOC. During that stay, in the back of my mind, I knew the timing was right for this trip. Her increased seizures in March reminded me how very fragile she really is, and how our time with her is so very precious.

After lots of planning with school testing schedules, vacation schedules at work, etc. - on May 13, 2015 - Jenelle's "Wish Team" held a pizza party at our home to present Jenelle with her Wish, and the Itinerary for our trip. *Two days later, we were riding in a limousine to LAX for our flight to Orlando, Florida! For seven amazing days we were treated like VIPs; we laughed together, rode amusement park rides, saw shows, took photos, got lost, ate amazing food, had ice cream for breakfast, stayed up late, slept in, got on each other's nerves, and for once had a true family vacation! The trip was so amazing, I wouldn't do it justice to update it all here, so I will give you multiple updates for each amazing day (with photos!)

We don't know how we will ever be able to thank the Make A Wish Foundation (and Give Kids the World Village - more on that to come) for this amazing experience. It was truly a once in a lifetime experience that we will never forget.