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On the Outside Looking In - A Non-LGS Caregiver's Perspective

August 14, 2019

 

I am not a parent or family member of a child with LGS.  But I consider myself the luckiest person on the planet, because my best friend is an LGS parent.  It was eleven years ago when I first met my LGS friend, also named Jennifer (how convenient!).  At the time, I also met her beautiful son, Theo, who was six years old, the same age as my son, Emerson. However, Theo was unable to speak and only able to walk with help and supervision.  Despite my best efforts to appreciate Theo’s unique life, my thoughts still eventually went to the same place: empathy, sadness and although I hate to admit it, a dose of pity for my new friend’s incredibly hard life as a parent of a special-needs child. But here’s the rub. There were two important things that I didn’t know: I didn’t know about the LOVE, and I didn’t know about the MAGIC. Those words may sound corny but hear me out. Let’s start with the love. Did I know that my friend loved her son with LGS? Of course. But from my naïve and ignorant perspective, that love was somehow different, even, dare I say, diminished, by the all-consuming toil and daily grind associated with the care of her LGS son.  I’ve been wrong many times in my life, but never as wrong as this time. I now know that her love for Theo is unwavering and unconditional. It is unstoppable, it is true, it is real, and it is everlasting.  When Jen is reunited

with her son after several days of his absence, her eyes light up with a delight and sparkle that rivals any parent’s love I’ve ever seen– regardless of situation or health condition.  She boasts about her son’s tenacity and strength, laughs when he tips a chair over, and takes immense pride in calling herself Theo’s Mom.  Much to my surprise, despite the rough LGS waters that she navigates (and make no mistake, there are very hard days), her love for her son never falters. In fact, I suspect it even grows deeper. Theo is surrounded by a large circle of loving fans – including family, friends, teachers and caregivers (and this now includes me, his adopted eccentric aunt).   

         

Now let’s talk about the MAGIC.  Yes, I said magic.  I’m not sure if it’s a cosmic pull or a Marvel Comic-like super- power, but the reality is that Theo has an amazing and profound impact over the people he meets.  Each Saturday, as we push Theo along the beach and downtown, the results are always the same.  Multiple people - kind and inquisitive strangers from all walks of life and all age groups - engage us. It is as though they’re drawn to Theo’s inner beauty and unspoken charisma. They flock to Theo and they shower him with praise, smiles, concern, curiosity and questions.  They offer

him water, pizza, flowers and once, even poetry.  I thoroughly underestimated the powerful magnetism that Theo possesses.  I didn’t realize that he could effortlessly bring out the good in everyone he meets. Those of us that are on the outside looking in, who are willing to embrace the special needs inner circle, are in store for exquisite, life impacting and heartwarming surprises. But if you’re an LGS parent, you already knew that, didn’t you? 

   

           Theo and his 'eccentric aunt' Jen at a favorite Saturday stomping ground, Marshall's!

 

(**Note from Theo's Mom, the other Jen, – "Thank you, my dear Jen Brannon, for loving Theo as he deserves to be loved! Your last statement hit home. There are times when the life of a caregiver is difficult, but it is filled with 'exquisite, life-impacting and heartwarming surprises.' I sure wish it wasn’t such a well-kept secret but with friends like you, I sure hope the word gets out. The MAGIC is contagious!")

 

 

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