When One Second Changes Your Life as a Parent
On November 3, 2013 we woke up like every other day, filled with tickles and giggles. I didn’t know that by 5 p.m. we would be on our way in an ambulance to see a neurosurgeon at a top children’s hospital.
It only took a second to change our lives.
My son, Nathanial, fell backwards down the stairs at his dad’s house; it only took a second of him looking away. It took time for Nathanial to show any symptoms, and several hours passed before I knew something was horribly wrong.
But they said we were lucky. Nathanial didn’t require surgery. The bleed had stopped. Only time could fix it. He would be fine after a 24-hour observation. Go home, relax, don’t worry.
Nathanial was having problems walking and was having staring spells. He was diagnosed with post-concussive syndrome, but again were told not to worry. It would improve with time.
Fast forward a year and a half and our lives were turned upside down. After an MRI and EEG, Nathanial was diagnosed with epilepsy. He was also diagnosed with developmental delays, hypotonia and autism-like symptoms. We prayed and started him on medication.
But a second can change everything.
His first major tonic clonic seizure came only weeks after his diagnosis. Then several more. He changed medications. And we waited. His seizures continued to get more severe. He started having more types of seizures, and every day they got worse.
By July 2015, Nathanial was having more than 30 seizures a day, including seven different types. Even and on multiple medications, there is still little seizure control.
Tick tock, a second can change everything.
Another EEG in August confirmed our fears. The dreaded slow spike waveform. My sweet little boy went from being one in 26 (in the U.S.) with epilepsy, to an estimated one in 50 to one in 100,000 with suspected Lennox-Gastaut syndrome.
All of the pieces started to fit — the intractable epilepsy, the behavior problems, the autism-like symptoms, the developments delays and hypotonia. It all made sense.
Through all of this, Nathanial has been strong. My little warrior. If he falls down seven times, he gets up eight. Every second brings another set of fears and sadness, joy and laughter, always the extremes.
The day I found out Nathanial would require a wheelchair at least part time.
The day Nathanial was fitted with a helmet.
The day I was told we would likely never gain control over his seizures.
The day Nathanial was fitted with orthotics to help him walk. The same boy who was running at 9 1/2 months old.
The day we found out cold causes seizures for Nathanial. He can no longer be outside when it’s below 50 degrees.
The first time I had to use emergency medications to stop his seizures.
The first on many ambulance rides.
The day I signed his IEP for school and enrolled him into a special needs classroom.
The day I was told he isn’t making any progress in therapies.
The joyful and happy times always shine through the sadness.
The day he qualified for Make a Wish and we started planning his trip.
The day Nathanial ran the last 50 feet of a 5K without falling.
The day he made it through the school day of two and half hours without a seizure.
The day Nathanial decided his helmet and orthotics make him “Super Nathanial.”
The day our community reached out to help Nathanial.
The day complete strangers reached out to sponsor Nathanial for Christmas.
The day someone we didn’t even know dressed up as Santa and visited in the hospital, because Nathanial was afraid he wouldn’t be able to find him.
The continuous days of support and love from our community as we go through this journey together.
Nathanial has been quite sick recently, yet another piece of the puzzle we haven’t found yet.
Another second that can change everything.
The virus and croup that turned into rhabdomyolysis, causing Nathanial extreme pain and caused him to be weak and unable to walk.
The fight to regain “normalcy” and get him back to health and back to living his life.
A month later and we were back in the hospital with a severe bacterial infection, with no known cause other than he was on antibiotics for an ear infection. Yet another mystery.
But Nathanial continues to be courageous and strong! He won’t let anything bring him down. Not the TBI (traumatic brain injury), not the epilepsy, not the random serious illnesses. He is a fighter!
For every second that is horrible and scary, Nathanial’s smiles brighten the days and make those seconds feel so far away.
It literally takes a second in time to change your entire life. But just as that second can change your life with something horrible, that same second can become something great.
In a second, I regained my faith.
In a second, I knew the greatest love and will to fight that many may never feel.
In a second, I knew how precious life truly is.
In a second, I learned how lucky I am to have Nathanial as a son.
In a second, Nathanial can capture you’re heart and never let go.
Never let a second go by in life without truly living, no matter fear or sadness or trials you are going through. Just look at the love and joy in your life, and remember how much those seconds matter. Hold them close to your heart when those seconds get long and hard to get through.
Remember a second can change your life.
Follow this journey on Nathanial’s Story.