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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And Just Like That

Its been two days since I posted about Lola’s one month seizure free milestone and as I said before, you just never know when a seizure will emerge. This morning just happened to be that day. Something seemed off about Lola this morning. She was unusually cranky, her vision was erratic (running into tables, large chairs, etc), she was extra mean to her brother and she was moaning/crying non-stop. This is a day when communication with words would have been stellar. We had no idea what was wrong. I hear parents complain that their kid talks too much and I want to punch them in the face. Too harsh? But seriously, I would have given anything for my daughter to have been able to articulate her frustrations this...
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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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I Lied About Being Able to Relax

“What do you do to relax and how do you know once you’ve achieved relaxation?” Simple question, right? I was sitting in a circle with maybe a dozen other people. All of us parents of children who have vision impairments among other ‘different-abilities’. For once, I didn’t feel vulnerable sharing pieces of me that I tend to tuck away until the time is right. We were all together for the annual Visually Impaired Preschool Services (VIPS) Family Retreat in Louisville, Kentucky. Lola was over at the Respite Camp and I was excited to be working at the Retreat as a VIPS employee. And while I am indeed an employee, I still and will always be a VIPS mom. Just as the other parents and caregivers in attendance, I’m...
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