Thanksgiving Perspective

I think being a mom of a child with exceptional needs has given me a unique perspective on being thankful. While I’m thankful for all of my blessings on this Thanksgiving, I find that I’m equally as thankful each and every day of the year. It’s nice to have an entire day to ponder the meaning behind gratitude and how it weaves itself into my daily existence because I am indeed very grateful. But as a mother, a wife and, more importantly, a woman, I try to honor the things I’m thankful for all year round…and these two are at the top of that list. Lola has taught me to appreciate in a different way and embrace all that life has to offer. Because I surround myself with...
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NR2F1

NR2F1. This combination of five letters and numbers meant absolutely nothing to me until a few weeks ago. Now those five letters and numbers have given us the answer to, “Why Lola?” They are the sole reason why the course of Lola’s life changed so drastically. They are the letters and numbers making up a long awaited diagnosis. When I first received the call from neurology informing me a diagnosis had been found, I was elated. I quickly called Rob, my mom, sent out texts, posted on Facebook and Instagram. I was ecstatic. We finally knew what exactly we were up against. The main symptoms were optic atrophy (Lola has CVI and small optic nerves) and intellectual disability (she is globally delayed). We would have to keep an...
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If You Have a Child, Please Watch These Videos

Today I’m sitting here on the couch with Lola sprawled out across me. She’s home sick for the second day in a row due to the annual ‘flumageddon’ virus. She gets it every year and this year is clearly no different. While I’m sad she isn’t feeling good, I’m elated with one important aspect of her illness — she hasn’t had any seizures. For most epilepsy sufferers there are underlying causes that can trigger seizures. For Lola they are generally illness (fever or not), physical or cognitive developmental leaps, overexcitement, weight gain, and excessive tiredness. Yesterday marked one week since Lola has had a seizure. While I celebrate this one week seizure free milestone, I am especially hopeful the medicine increase is working because little lady is pretty...
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Where We’re at Today With Epilepsy

November is National Epilepsy Awareness Month and for as much as epilepsy has impacted our family, you’d think I could easily write about it. Yet I’m sitting here with a blank screen. I wouldn’t really call it writer’s block since I only show up on this blog every now and then. I think it’s because I try so hard to go on as if epilepsy isn’t part of our life. Like if I don’t acknowledge its presence that maybe it will simply go away. But that’s not fair to Lola and it’s not fair to the readers of this blog. So lets talk about epilepsy and what it means to my family. Today Lola is one month seizure free. This is exciting yet I’m hesitant to share this...
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What Life Means Today

Some years ago, this blog began as a way to stay connected with family and friends while Rob and I embraced our new life in Costa Rica — it was actually called Live Love Travel Souls. I then became pregnant with Lola so I thought I’d blog about the healthcare system in Costa Rica and raising a baby in a foreign country. And then over a course of time, life changed drastically when Lola was diagnosed with infantile spasms (a rare form of epilepsy), cortical visual impairment and global developmental delays. The blog morphed into Say Hola Lola. When Lola began to have seizures, countless medical appointments, endless diagnostic testing, a daily regime of medication and therapies to help her get strong both physically and mentally, I scoured...
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