This photo was taken 14 years ago today after my son’s brain surgery. He suffered from terrible seizures. It wasn’t that he had tons, it was that the ones that he did have DID NOT STOP ON THEIR OWN.
Status Epilepticus - any seizure over 5 minutes.
His lasted hours
.
Epilepsy can be extremely dangerous. His lasted so long that the fear was: organ failure, brain damage or even death.
And he had them while he slept.
This meant that all of his naps had to be monitored.
And I ended up sleeping in the guest room right next to his room so I could hear if he was having one. He would let out a scream at the onset of the seizure but then remain silent for its duration.
So, I was always listening for that scream.
Fourteen years ago Lincoln underwent hemispherectomy surgery, a brain surgery that removed a good chunk of the right side of his brain and severed his corpus colosseum.
His surgeons had to remove a part of the motor cortex that controls his left arm and hand.
Lincoln knew that he might ….most likely would…lose all use of his left hand, but he was okay with that if it meant the seizures would stop.
He had the surgery on April 7, 2010 at NYU. His surgeons were BRILLIANT.
We were, and still are, so extremely blessed and grateful for EVERYTHING and EVERYONE who guided us through this process.
It was during Lincoln’s healing and rehabilitation that I decided that I wanted to do something to help “Other Mamas Like Me”. At the time I thought I was supposed to help mamas navigate their child’s epilepsy or hemispherectomy surgery - because at that time there were no blogs, Instagram accounts or Facebook Groups that I could find that dealt with this type of surgery.
While I learned as much as I could about Lincon’s type of epilepsy and surgery, I was no expert and I felt inadequate when I tried to “educate” on my social media accounts, etc. @magic_doorways.
I operated a small antique-type shop out of my home and donated most of the proceeds to organizations that helped families dealing with epilepsy or hemispherectomy surgery.
I ran 5ks to raise money.
I tabled booths at fairs.
But none of this felt right.
Then, three years ago, my father died suddenly. He was my antique go-to person. When he died, I lost all interest in continuing with the shop.
I still knew it was my soul’s mission to “help other mamas like the younger me”, but had no idea how or what I was supposed to do.
Then I started paying attention.
I noticed that most of the children who Scott and I worked with were dealing with anxiety.
And their mothers were dealing with anxiety as well.
Homework-time was hellish and these mothers had no idea how to help their children with reading.
These mothers came with us because they believed their children needed sensory integration help. And they did.
But after looking deeper we discovered that a good majority of these children also had reading, spelling and writing difficulties; which increased any anxiety that they might have originally had.
Reading difficulties and dyslexia can cause extreme anxiety in children and in their parents too.
And as mamas we just want our kids to be happy. To not experience pain. And it pains us to see them in pain.
Our pain turns to frustration, anxiety and hidden tears when we don’t know how to help them.
Slowly, I realized that I’m not meant to help other-mamas-like-the-me-in-my 30s and 40s with children with epilepsy; I’m meant to help with reading, spelling and writing.
This is my purpose. That’s what I love doing.
I was just like you. I was so stressed. So overwhelmed. I desperately looked everywhere to find answers and ways to help my son. I couldn’t sleep, because I had to listen for his seizures, but also because I was always in a constant state of fight or flight.
I had panic attacks.
I cried in front of people.
I was overprotective.
I was stressed and obsessed with keeping him safe.
All this to the detriment of my other child, and my marriage.
All of this brings me to today, where I can look back and send love to that younger me. Boy she needed it. My heart breaks for her….
And it breaks for YOU if you are feeling any of the same things that I felt.
So whether your child has epilepsy or dyslexia, SPD, or ASD; I’m here to say it does get better.
It gets so, so much better. I promise.
And if your child has dyslexia, or other literacy needs, ADHD, autism or sensory issues - we are here to help.
I hear you, Mamas, you are not alone.
Fill out our intake form if you’d like to schedule a discovery call to see if we could be part of your solution. Or just text me at 518.945.8280.
Breathe. Be kind to yourself. You are doing your best - and that is more than good enough.
I'm creating a free mini-course to help you to help your struggling reader IMMEDIATELY. Please reach out via email if you'd like to know when it's ready for the roll-out.
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