Sometimes when I’m driving, my family sees more than for which they bargained.
Asked if I’m lost, I’ll say, “No, I’m not lost. I’m on an adventure!” I point to the great view of the parking lot where I just turned around or the scenic views from a series of gas stations where we’ve stopped to ask directions. Sometimes I’m frustrated, but if I’m not too off course or too late, I consider it an adventure (and one of the reasons I leave early…to accommodate these adventures!)
That same spirit of adventure has help us care for Joey and sustain us these past 40 years, and hopefully into future years. Because the day-to-day duties can be very challenging (24/7), we can easily become frustrated when things don’t go the way we had planned or hoped-and that’s every day! To make the best of what is happening, we try (try being the operative word) to keep a good attitude and spirit of adventure. Because life isn’t perfect, I openly share my frustrations, disappointments, and tearful times with family and close friends; beyond that there are few interested. Having a good attitude all the time is challenging when nothing ever seems to go as planned, but God has given me/us a lot of practice, so we’re learning the lessons along this unexpected journey!
Sometimes the spirit of adventure takes the form of humility and the willingness to give people with special needs their dignity; humbling our self to do what is needed for them to feel valued; and teaching others along the way to do the same. Most don’t know the challenges we face along with the challenges and neglect our loved ones with special needs face. “Do you know what people group is abused and neglected at a much higher rate than any other?” Ryan Wolfe of Ability Ministry answers that for us, and if we are but willing, we can be make a difference in changing this! (tps://abilityministry.com/2021/02/15/where-is-the-outrage/) Those with special needs deserve so much more…they are valued and loved, but often very mistreated and uncared for.
We have purposed to take our *Unexpected Journey and give it a Spirit of Adventure. We chose to take the journey and adventure something like this:
We have gone FROM:
Diagnosis —- to Death to self (From when we first learned our lives would all be changed forever, we learned we couldn’t be selfish and expect good outcomes-the hard work has paid off after 40 years!)
Crisis—-to Christ (Learning more about Him and how we must serve through it all – the hard parts as well as the easier ones has sustained us and encouraged us!)
Challenge—-to Changed Hearts (Our whole family has been changed, as have friends and on-lookers! Joey has taught us in so many ways. Some care deeply with us and some really don’t care. We cherish those who’ve taken the journey with us and who care enough to also see their hearts challenged and changed.)
Exhaustion—-to Excitement (How easy it is to be frustrated when we are so exhausted in those younger days; yet watching our child learn and grow can be/is so exciting and something for which to long for every day! It’s part of the adventure!)
Unexpected—-to Understanding (This takes years. We are still on the course, but after 40 years of caring for our Joey with special needs, we are beginning to see what God’s perfect will is for his life, and ours.)
So, while we prepare to celebrate Joey’s 40 years of life next week, we do so with a spirit of adventure. Our 40-year old with a “child-like mind” has asked us often in the last few years to do “Jedi Training”. Knowing this takes place in a park with many people and with little children (Joey being older and 6’4” tall and not as able to follow simple instructions presents some challenges) we knew that might not be the best-case scenario for him. So we are having a surprise JOEY JEDI Training and all guests will join in! We’ve hired someone who will choreograph a simple but fun training; we’ll all dress up for Star Wars, and we’ll delight in giving him his dignity, a fun day, and hopefully a birthday he’ll always remember that had adventure!
Trust God to show you creative and adventurous ways to make this journey for many more years. Ask Him to show you what not to miss in your usual day as well as for special occasions. Embrace special moments.
We don’t know how Joey will react to this surprise, but we do know it will be an adventure!
Dr. Joe and Cindi Ferrini share their newest book: Love All-Ways: Embracing Marriage Together on the Special Needs Journey (order at www.cindiferrini.com). They are authors, speakers, and bloggers for several blogging sites on marriage, family and special needs. They speak nationally for FamilyLife Weekend To Remember Marriage Get-a-Ways, authored *Unexpected Journey – When Special Needs Change our Course, and have been interviewed on Focus on the Family, FamilyLife Today, Janet Parshall at “In the Market”, Chris Brooks of “Equipped” and various other radio and television venues. Connect with them at:
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