Goodbye — For Now

My very first Say Hola Lola post (actually it was called Live Love Travel Souls back then) was over six years ago. Never did I imagine this little ole’ blog would mean so much to me. It became a place to inspire, divulge, vent, relive, accept and document what has been the most rewarding yet one of the most challenging times in my life. I shared pieces of my life that probably belonged in a diary — not out in public, but I wanted to be real. I wanted parents of children with special needs to know they were not alone. But more importantly, I wanted to show that life does go on. And that life, while different than what you had expected, is full of love, happiness,...
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Grateful For This New Normal

“Since these episodes aren’t seizures, that means Lola hasn’t had a clinical seizure since she was a baby,” I said to my husband last night. He agreed and we both sat silent for a minute. Just let that sink in. No clinical seizures in more than five years. How incredibly lucky we are to be able to say those very words. We say clinical meaning seizures that are actually visible. A past EEG showed her to be having subclinical seizures as she was sleeping, but the last two EEGs did not detect those subclinicals. What is most fascinating is that we have no idea what a clinical seizure would even look like, if Lola were to have one. The type of seizures she had as a baby were...
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Let’s Ride, Lola!

You may remember Lola was competing in Friendship Circle’s Great Bike Giveaway for the chance to win a Rifton adaptive bike. Unfortunately she didn’t win a bike through the voting portion of the contest, but because she had at least 100 votes (she actually had over 1200!) she still had a chance to win a bike through the raffle…and she won! We were elated with joy because the outpour of support Lola received from family members, friends, neighbors and even complete strangers was simply astounding. She had so many people rallying behind her to win this bike because they knew the impact it would have on her life. We can’t express our gratitude enough for helping make this dream come true for our daughter. She now has the...
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Come Stroll Down Memory Lane – A Birthday Post

Warning! Plethora of pictures! I’m almost a month late with the Lola birthday post, but that seems to be the story of my life lately. Lola turned five-years-old on January 4th and I’m still pinching myself with disbelief! I’ve had so many emotions with this birthday and I can’t seem to figure out why. There’s something about five that says she’s well on her way to school dances, shaving her legs, screaming “I hate you” and everything else teenage-related. All right so I’m getting a bit ahead of myself, but she’s getting bigger which scares the hell out of me yet makes me look forward to all of the good stuff that’s just right around the corner. Five years ago, I was afraid for her future. I didn’t...
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Quease Fall, Don’t Go

“Outside, outside,” says Lola. It’s her new favorite word. It literally emerged from her vocabulary just this week. Up until a few days ago she’d say “bike” which ultimately meant she wanted to go outside. We’ve gotten really good at deciphering meanings behind her words. We used to have to pick up on her communication cues through all other avenues except for language, but she’s starting to use words more predominantly than actions. It’s been nothing short of astounding to witness. She has many more words in her back pocket that seem to appear out of nowhere. Some of them have quite complex meanings behind them and she’s starting to understand that they can be used in multiple scenarios. For example the word “off” — she uses it...
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