One of the greatest joys EVER in Brian’s life is taking a shower. If there was a contest held for the longest shower ever taken, he would win, hands down! All of us know how refreshing it is to take one, but Brian takes this activity of daily living to a deeper and more meaningful level. He is genuinely happy, squealing with delight as the warm water from the shower head and shampoo massages his scalp and simultaneously adores the loofah on his skin with either a grapefruit or coconut body wash. Removing Brian from this aquatic paradise always requires an emphatic assurance that he will soon return to his second home.
Can you recall the last time when you felt that child-like joy over something so simple? I must confess that I can’t remember, it’s been that long! This winter has been wearisome, with its perpetual precipitation, cold temperatures, and constant illnesses. Springtime continues to elude us all, but I heard a rumor that it will return sometime soon. Lots of homebound days does not make for joyful families, especially when our kids ( and we parents!) need their routines. Off routine often means difficult behaviors, frustration for all, and the inclination to run away sometimes. I know I have certainly felt this way.
Since running away from home is not an option, I am on an eternal quest to find ways to be content, and joyful (at least a good portion of the time), especially when difficult circumstances want to rob me of those things. Please don’t get me wrong- it’s impossible for anyone to be happy 100%of the time, but I do believe there are ways to live “above the hardships” that are a constant part of our daily reality, as much as the joys are a part too. I must make the effort to look for those moments of joy and make them my own, and Brian will gladly show me the way if I am willing.
I have concluded that Brian’s severe disabilities protect him from ever hating anyone, becoming jaded, or being unkind- the ideal qualities of a joyful person! It is simply not in his DNA. My husband jokes that Brian will never do “25 years in the Pen”. He is sweet, very trusting, and a loving young man, and always will be. And of course he also has behaviors just like everyone else. We worry of anyone ever taking advantage of him in any way, just like other families do. These concerns always lie just beneath the surface and are lifelong. But who knew there would actually be “advantages” to being disabled, and they just happen to be those particular qualities that all parents would want for their children. Our kids just happen to have these gifts naturally and are Ambassadors of Joy to others in each of their own unique ways.
Brian’s other expressions/moments of joy include:
His bear hugs (like you’re his best friend that he hasn’t seen in 100 years!❤️)
His friendly waves to everyone, everywhere! (he often demands a return wave 🤣)
His love for chocolate pudding ( Jello is responsible for creating these infectious smiles 😊)
Storybook Time before bed- we are now up to 6 books before bed- Brian has his favorites for sure! He has loved being read to since he was only months old. It’s a bedtime ritual that we have treasured for years. Brian loves to snuggle close while reading and is just delighted, like it’s the first time that he has ever heard these stories- trust me- it’s not! 🤣🤣
Music, Music, Music! – Anytime, Anywhere, from Classical to Classic Rock, Brian loves music much, always has, though we were stuck on Toddler Tunes for quite a few years! I think Music in particular speaks to his heart and soul in ways that we don’t fully understand, with a joy that is palpable!
Water World- Brian’s love for water extends well beyond the shower at home. He loves hotel showers too, swimming pools, indoor or outdoor, and the ocean. Brian was afraid of the ocean when he was very little, but now, he communes with the waves in a such special way that I believe this Happy Place makes him the most joyful of all. Others have observed the same and have often brought it to our attention.
Just writing about these things encourages me to be joyful and is a reminder of how our minds can be “trained”, like a muscle, to focus on the good. Joy, like happiness, is also a choice, like so many things in life. For years, I focused a lot on the “negatives” as they pertained to Brian’s disabilities, (especially in the early years) mostly out of grief and fear. While it’s perfectly natural to react this way to a major life-changing event, the key is to acknowledge, but not to remain in the grief for too long. If my grief had the ability to reverse the permanency of Brian’s challenges, I certainly would continue, but since that is not the case, I can’t afford to make myself sick. I would then be of no use to Brian, my husband, or myself. So, I try to continue to acknowledge the fear or grief, “feel the feelings” for just a spell,( we are only human after all!), then make a conscious decision to move on. Life is truly too short not to- this becomes even more relevant as we become older along with our kids.
Our joy as special needs parents is certainly not limited to just our children. We sometimes forget that we were (and still are) unique individuals with our own interests, hobbies, etc. BEFORE we became parents. While it’s more difficult to make the time for ourselves, we must somehow carve out some time and engage in those pursuits that also bring us joy. I am working on that myself and have very recently rediscovered my love for playing a portable keyboard, (just some very basic tunes/scales and singing along). It’s amazing how freeing singing can be, by the way, and can help you forget about things that are out of your control…
So, what brings you joy? What will you choose? How does your special son or daughter express their own joy? I wish us all many joyful returns, especially during those difficult times when joy seems to elude us all together, but we choose to seek it out anyway.
Thank you for reading- until we meet again, many blessings on you and yours!