Tag: photos

 

He was clearly upset. Withdrawn. Facing away from us when they finally arrived after going around and around and around again trying to find us. So much effort and time trying to relax at the beach. Environmental conditions created stress. A lot of stress.

The trigger: stress in his environment. Unknown factors lurking. A racing mind.

Recently he had been doing so well with helping and navigating and being responsible in life and on this trip. I know he is growing up and takes such pride in his adult successes… he’s achieving and as he achieves new challenges come. He is growing up.

Miscommunication leads to frustration adding to elevated stress levels. Triggers in his world. Triggers that can spark negative thoughts and emotions that make his mind race. The peace in his brain turns to excitement or sparks.

After staring into the ocean, silent, for a while, I could see he was trying to manage those feelings. Those sparks that agitate him. He finally just turned over and laid down, head down, on the beach blanket. No sunscreen, no words, no nothing. He was trying to settle him. I know that feeling!

Every few minutes he would pick up his head and pound the sand where his face would lay as hard as he could. I figured he was trying to carve out a resting spot for his ears and cheeks. But he was also still working out that ball in his stomach. He probably popped up three times to pound the sand. I offered him our shovel but he didn’t respond. He was in his own space. His own head space. He was battling his inner demons.

A turbulent mind I would explain to most. Filled with why me? Why now? Why in public? What did I do to deserve this life? At one point he got up and went to put his feet in the water then went right back to sleeping, wrapping a shirt around his head. he just laid there silent and still in the sun. One may think this is no big deal.

I see it. I see the challenge. I see the mental burden. I see the chaos lurking. I see the pending explosion. The seize is here. The seize is happening.

It was the sound that hit me first. It was a guttural scream, a groan, a call. A shout. And then he was jumping, lunging, arms out reaching for the closest object or person of comfort.

5-8 seconds seems like a lifetime in this moment. Passers by freeze. Judgment is silent. An eerie feeling is in the air as those close say nothing.

The girl who was sitting next to me in our low beach chair was the support. I knew what was happening and tried to jump in between them. Told him who I was and where he was. I used his name. It’s ok. It’s me. You’re on the beach. You are safe. Put my hand on his arm to try to calm him. He was still confused. He said his ribs were hurting and grabbed his side. That’s when I got scared since I didn’t know what that meant. I got help.

She was in in the water just feet away. Not out too far. I ran out to her and she was calm. She asked me what happened and just coolly walked back to him. She knew it was coming just didn’t know when.

At least she seemed cool compared to my jumpy insides. She called him over about halfway to him. Come get in the water with me. And he did. He went with her and they walked out together and a minute later he dove in the waves. I just watched silently as she cared for him and walked through it with him as she had a million times before. Then they called for boogie boards and I brought them quickly. Then off they went just laughing and swimming and hitting the waves.

When he came in you could tell he was a little quiet. Self conscious. She said he surveyed to see who noticed, who saw his episode. Like he has done many times before. Then the day just wore on. He threw the football and flew a boogie board like a kite and laughed and smiled his special radiant smile.

Did I do anything right? Did I help? His seizures are so different than the ones I had seen in the past. I thought I would help him get to the floor and try to cushion his head and protect him from hurting himself as the seizure ran its course. None of the that happened.

This was quick but violent. I wasn’t prepared. It was unexpected. If I was startled I could only imagine what this felt like for him. I understand he fears the seize daily. The unknown. The perceptions of others in the aftermath.

How would I feel living this way? Would I even want to live this way? I admire this boy for overcoming this challenge and the many challenges he will see in his future. Life isn’t easy. Adding a medical challenge like seizures to your life as you enter adulthood may be one of the toughest hurdles he will have to overcome.

I, like many others, admire this young man. He is so strong and so determined but also so tender and kind. He’s a caring soul. He loves kettle corn and kinder chocolate, he gives amazing hugs and is so generous with family and loved ones. He has also endured so much but never takes advantage. He works above and beyond and without drawing attention to it or complaining. He cares so hard for others, keeps a warrior’s heart while weathering storms in his own brain. New love new admiration. And a new desire to understand and cheer for him in ways that matter.

And then his Mom, who had taught him all of this with courage and resilience and determination. Who fights for him and expects him to become his best self. Uncompromising in her belief in him and advocacy for him.

I’m in awe and amazed constantly and more so now than ever. If you ever come across a family who battles daily with a medical challenge, offer kindness and hope your way.

You never know if it’s a good day or a bad day for them. They are most likely shielding their life struggles like most put a bandaid on a cut. Kindness matters. Never judge unless you can walk a day in that hero’s shoes.

He is my hero. Our hero. He his one tough cookie. Today we celebrate him and where he is going in life. Tomorrow is never guaranteed. Seize today.