by Rosemary Fish
As my friend Tony Baisley, Hammer’s Director of Communication, advises, “Write about what you know.” Okay, since that’s pretty straightforward, I’ll go right to the topic I know best: being the parent of a daughter with special needs.
By way of introduction, my daughter Leslie is a pretty, 35-year-old woman with cognitive deficits, a controlled (well, mostly) seizure disorder and a bilateral hearing loss. Additionally, she has battled significant emotional issues during the last few years.
As anyone who has traveled this unique road will tell you, this particular journey is one of incredible highs and, frankly, often near-crushing lows. But as a “veteran” of over three decades now, I can attest I am definitely more resilient, and, hopefully, a better human being because of the experience. And I’ve learned quite a lot, both good and bad, along the way.
So, when Tony asked me to write this blog, after my initial hesitation (fruitless, when dealing with Tony), my thoughts went back in time. My husband once told me that many years ago when we first heard the then-18-months-old Leslie’s diagnosis from the pediatric neurologist, he thought, “I’ll never smile again.”
I remember it vividly, going to the library and frantically trying to find a book, an article, some research – anything to give us hope. Sadly, the pickings were slim back then. But after finally getting our footing, good fortune started to smile, and I began to find support groups and organizations, such as the wonderful PACER, and the fog became less dense.
Now, so many years later, when I think about my husband’s words, I’m here to tell you – and Marvin joins me – despite a mis-step here and there, we are an extremely happy, albeit toughened, family. The reasons for this are many; we’ve witnessed how much Leslie has progressed; we’ve done “combat” with the system and survived; and then there is plain-old good luck in finding a helping hand when we were down on the mat.
So, if my 35-year younger (and terrified) self could ask this current (wiser but rickety) self: “What was the key?” I’d have to reply, “Sometimes, it’s just hanging in there and finding the right resources.” And, hopefully, someone who is just beginning their journey can know it’s not only navigable, but also more rewarding and illuminating than you can initially imagine.
And as I continue further on this path, I would be remiss if I didn’t point out one crucial element that has emerged to make a colossal difference in the quality of Leslie’s life. And that, of course, is the extraordinary and indefatigable Hammer Residences. Leslie’s acceptance six years ago into one of their group homes was one of the happiest moments of my life.
And at this point in her life, the Sumac House is the perfect place for Leslie. With the help of an excellent and well-directed staff and the most fun-loving and adorable housemates anywhere, she has blossomed in a myriad of ways I would never have thought possible. (Also, I might add, there is now growth and maturity present that wasn’t in evidence when she lived at home.)
So, for all of you, no matter where you are on this journey, know that you’re on the ride of your life. Buckle up, batten down, and though the twists and turns may leave you dizzy at times, the ride will never be dull.