Posts Tagged ‘epilepsy’
Our Life, With No Apologies
No one person knows my life, the extent of what I have witnessedin sterile hospital rooms while my daughters beautiful minds seized for what seemed to be an eternity. Nor do they know the joy and pride in my heart when my nonverbal child signs “I love you” to me and I can feel the depth of her love through her tight squeezes and occasional love pinches. I have been battered with sleepless nights of chaos, insulin, low alert alarms, pure worry and panic of a life altering seizure or…
Read MoreRemember, Your Sister Talks to Angels
Recently my daughter Sage who holds her feelings in like they never existed, who would rather use her fists to deal with hurt, broke. Her sky blue eyes welled up and her upper lip quivered as a stream of salty tears spilled down her cheeks. My dearest Sage, You have a job more important than other kids your age. Not only do you have to protect your littlest sister from dangerous situations, you must also protect her from hate and evil. Sage, there will always be mean people who spew hate. Yes…
Read MoreLetter to My Daughter on Her Birthday
I cannot believe it has been 6 years since I held you for the first time. I remember laying you on my chest and looking into your big blue eyes. In that moment, I knew I would never love anyone the way I do you. Since then, you have made my world go ’round. Celia, you complete me in ways I didn’t know I needed. Not only do you complete me, but you show me what true love is and how to love more. Having you as my little girl…
Read MoreThat Little Empty Spot
When your last born loses her first tooth, it is supposed to be a little sad because one realizes that their baby is growing up. And will soon spend long summer days riding bikes and playing neighborhood games. They are learning math facts and reading classic stories like, “If you give a Mouse A Cookie”. With her bouncy little smile she ran to me and grabbed my hand and brought it to her tiny bottom tooth on the left. It was so close to being free. She had been using…
Read MoreI am a Different Person Since my Son’s Diagnosis
I am sorry I do not return your texts or phone calls. I am sorry I have to cancel last minute or do not make plans as I’ve promised. I’m sorry I am not the same person. Since my son’s diagnosis and his other medical issues, I am not the same person. I have noticed I have lost my spunk. My life is so chaotic. I feel my life is consisted of being on the phone with insurance or doctors. I am traveling to different therapies, five days a week.…
Read MoreThe Doctor who said, Your Child is the Least of my Concerns
My daughter is autistic and started having seizures at age 11. I remember the day I got the call from the school nurse that she had a seizure in class. I actually expected it at some point due to her neurological issues, so it didn’t take me completely by surprise, but it was terrifying nonetheless. We already had a neurologist so we had the 24 hour EEG right away which confirmed she was having partial complex seizures. The type where you just kind of stare off into space for as little…
Read MoreReminding Myself to Breathe
It’s been so long since I have expressed my deepest feelings on paper. Maybe it is the hectic environment in which I live, maybe it’s the denial that splashes my mind every morning, or the guilt that is seeded deep within me. Uncertainty is my demon that gnaws away at my confidence to parent the way I need to. It is difficult to grasp the concept of my everyday jealousy of ‘normal parents with normal children.’ Our life is anything but. Some days my life consists of washing smeared feces…
Read MoreThank you Mom for Everything
I am the blessed mommy of twelve year old twin boys. Noah has severe, non-verbal autism and epilepsy. Owen is absolutely typical. When you have a child with autism, life is anything but ordinary. Today I’d like to take a moment to honor and THANK one of Noah’s champions and favorite people in the entire universe, his Grandma (my mom) Cindy. Cindy has been an integral part of Noah’s life since day one. She gladly accepted the role of caring for our boys when I returned to work after six…
Read MoreWhen My Life Was Flipped Upside Down by a Dual Diagnosis
The other day my life was flipped upside down. We were on our way home from the video EEG and the impact of a dual diagnosis struck me to my core. It was a Friday afternoon. Derek was driving. I was watching all the cars out the window. My mind was reviewing the information we had learned and coming up with a new list of to-do’s. When, suddenly, it dawned on me. This is our life. Appointments, tests, seizures, medical fears, disruptive behaviors, therapies, financial burdens, hospital stays, unrelenting exhaustion…
Read MoreThank You to the Best Aunt and Uncle
After our son Emmett’s official Fragile X diagnosis we told all our family members about it and posted about it on social media. Everyone told us or wrote to us telling us how much they care and how it will be OK and if we needed anything to let them know. But after the Fragile X diagnosis their was a quiet pause from these individuals. No one says anything or asks us about Emmett. They don’t ask about the multiple diagnosis’ he received after the Fragile X diagnosis. I have often…
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