Sharing stories of fear, frustration, hope and acceptance

Posts tagged ‘Epilepsy’

Things to do; Places to see





So much fun is happening around here! FINALLY!!!! We are continuing to reduce seizure meds on Adam. It’s been a long year and FINALLY Adam is slowly showing consistent, positive responses.
He is more attentive, his eyes are wide awake and smiles/ smirks more often, he is re-learning about peek-a-boo and patty-cake and bubbles.

He has a new dog named Mia. Mia loves to be by Adam mostly when he takes her cruising in his wheelchair.

Yes! See picture to prove it!
He started horse riding therapy.
His first time was last Tuesday.
Watching Adam ride away on the horse (of course with therapists all around him) was one of the highlights of my life. I felt like I was letting him ride off into the sunset, to land of pure happiness. As I stood there I realized this precious moment in life had taken my breath away and I could only whisper, “GO ADAM GO” as tears of pure blissful joy skipped merrily down my cheeks. It was the BEST PLACE THIS CHILD HAS EVER BEEN. Can’t wait to go back.

He lost a tooth!! A TOTAL SURPRISE!
Thank goodness the nurse was with him and calmly went fishing for the missing tooth. I would have freaked!

Let see… What else…
Oh. The park. Adam also went to the park with his big brother Frankie.

Adam is truly turning a corner.
Each day I’M SO SO THANKFUL TO GOD. Words don’t describe. He is making a comeback… More and more this Adam resembles “old-Adam”, “healthier-Adam”. I’m realizing that he never left…. Adam’s personality NEVER left. It NEVER changed. It was/is there for the unveiling. I am more hopeful and more determined.


I’m That Mom

In the days shortly after Adam and I returned home from the eight month hospital stay life as we knew it was so different than before. Adam was so sick, I didn’t know exactly how I was going to get myself or him through it. His health was extremely fragile. I had to learn not only how to operate complicated equipment but how to be efficient with the two hands I have.
Thank God we have a nurse accompany us on doctor appointments. In the beginning I remember thinking, wow I’m “that mom”. It’s going to take me 20 trips just to load the van and four hours to get ready. Yup. I’m that mom. The mom who is pushing through what from an outside perspective looks like a mother’s nightmare. Pushing through all the un-thinkable things that come along with being a parent of such a medically fragile child. I’m “that mom” that has a sign on her sons wheel chair: “My momma says I’m special”. Just to state the obvious. YES MY SONS A HOT MESS BUT IM STILL PROUD OF HIM. Or when things go wrong and I know good and well my hairs a mess and my make-up… Well what makeup?? Some days there NO TIME!!
Yeah I’m that mom. I’m the mom that pulls out a big ziplock bag of ten different meds to give my son and have coffee with a friend at the same time. I’m that mom.
His health is still a complicated situation but at least now days there’s a calm that he exudes. These days he smiles more. 😀 there are less and less hospital stays and these days I’ve reached a place of acceptance that allows me to smile a true smile of gratitude as I push my son in his chair. These days being “that mom” is starting to take on a different meaning. These days I’m in a place that has allowed me to give myself the time and chance to reach out to other moms just like me.

The other day I went with a new friend and her son who is just like Adam only 15. It was an extremely rewarding good time. He (just as Adam) is such a joy to be around. It was so wonderful to observe his mom doing ALOT of the same things I do as Adam’s mom. It reminded me the importance of reaching out. I know I’m not the only mom in this situation but sometimes it feels that way. Parents like us have to try harder and search farther in order to find others in similar experiences. This new friend showed me I’m not the only one. She showed me an example of what 15 years worth of positive relentless hope, faith and endurance can add to life and she has no idea that she’s “that mom”.
To her I say, you are “that mom”.. You should be proud!

Simple Things


What is the TRUE meaning of life?
What REALLY matters after all is said and done?
I have asked myself questions like this hundreds of times.
THE ANSWER: it’s the simple things that matter.

Today Adam was more awake since his second brain surgery (hemispherectomy). He actually moved his Left hand a lot. I think I saw a tiny smirk of a smile on his right cheek. He even made eye contact with me for a second. His progress is steady, he only had two seizures since the surgery and the UCLA Neuro surgery Doctor Mathyrn said it could be because he is withdrawing from the versed (seizure medicine). He was put on this before surgery because he went into status. He started at a dose of 3 and now he is at .05.
The weening process has been soo slow- almost there.

In the meantime among all the complications and uncertainty I try to remain patient and continue to find reasons to appreciate the simplest of things like…. The taste of food, basic mobile abilities, the sun on my back, the smile of a loved one, or the touch of a hand, or a phone call at the very moment you feel alone. Yes indeed it’s the simple things that matter and I hope I never forget or lose this new found appreciation.

Wild Fires

Look for this Artist: Rachel Aldous
Song titled: A Mother’s Prayer
(I found on utube)

I have become frustrated with doctors and their lack of listening skills. Adam has a thing he does with his eyes just before he seizes. He will stare a blank far off stare and his eyes will get stuck in a kind of day dream. We call them “starring spells” since, according to the neurologist, they are NOT seizures. (Lately he’s been having facial twitches as well.) These are “not seizures” either. I call them very important WARNING SIGNS. Last night thanks to the night nurse I was able to maintain my sanity because Adam was exhibiting these behaviors and I’ve been telling the doctors only to hear the response, they are not seizures.

I knew something was coming. I felt it- something was stirring in my gut mixed with anxiety. I paced like an animal-mother would near her wounded baby.

Nothing happened. I went to sleep. At 5:30am I awoke to find that Adam had begun to seize. He went into “status” until 10:00pm. Today he is in a “Pentobarb Coma”. It’s a medically induced coma to help his brain completely shut down. The hope is he will awake slowly as the meds are reduced and his brain will have rested enough to protect itself against seizures.

Now he not only has a breathing tube, feeding tube, catheter, EEG continuously recording and a pick-line; one in his arm and another iv access in his neck but he also had to get a blood transfusion.

I often say that doctors underestimate Adams “ability” to seize. I know better. When Adam’s brain begins to seize if it doesn’t get meds soon enough it’s like an angry wild fire. I know, I’ve seen it. I can’t help to wonder if the doctors would have listened to me and Adams warning signs could this have been prevented. Now the doctors have seen it for themselves. MAYBE NOW they will listen, maybe now Adam has their attention.


You CANNOT Have My Child!

You can NOT take my child from me. You leave him as he was, finally on his path of progress. He was Signing and growing happily as slow as it may have seemed. He was sitting, self feeding and standing, showing off to the therapist who have helped him along the way. You can NOT have his smile don’t you dare mess with his face! YOU CAN NOT have his vision its his only means to communicate! YOU WILL NOT TAKE his courage nor will you damage his strength. Get away seizures PLEASE go away. He’s my baby, he’s my fighter and he’s put up such a fight. Please leave him in peace not just for the night but for the rest of his life.