Medical PTSD…Gratitude?

On the evenings I am not working Kevin and I put our son John to bed together. It is always filled with laughing, hugs and kisses. John takes a dose of melatonin every night right before bed that allows him to relax enough to fall asleep on his own. He is a happy boy, especially when he is home.

Daddy takes him into the bathroom for P and teeth cleaning while I go into the bedroom and set up the night light and sheets. Some nights I chase him into the bed pinching his little butt while he laughs and swats my hands away. He throws himself into the bed laughing hysterically, so much so his lips turn blue.

“Johnny stop laughing so hard, your lips are blue, breathe!” as Kevin and I look at each other nodding our heads with the look of “Wow, can you believe this kid”.

Kevin and I lay in the bed with John between us. We laugh at the silliness of John and usually mention how handsome or grown up he looks. Tonight, we mentioned how straight his teeth are and how beautiful his smile is. He has Kevin’s teeth, I had braces.

We say the Our Father Prayer with Kevin’s hand across us both. Tonight, Kevin was rubbing my back. John took Kevin’s hand and moved it away and began rubbing my back himself. We all laughed and kissed good night.

Sobriety brought me here….I am forever grateful for these moments that I do not rush and adore so much.

However, sometimes my mind goes to a dark place. For literally a second, my mind imagines the space between Kevin and I in that bed empty, without John. It gives me a knot in my stomach with a weakness I cannot explain. I shake it off quickly.

Death is something I think of a lot. I don’t do it on purpose. My mind just goes there. Sometimes I wonder if it’s my brain preparing me for the “what ifs”. But, my smarter brain tells me not to think of the ‘what ifs’ and to live in the present. I am not sure how to make these thoughts stop. I feel like it’s a symptom of medical PTSD, from all the years of watching him almost die or struggle to breathe.

I just don’t know how to make it stop…

I can’t deny…

Six years ago I was asked to write about the positive aspects of raising a child with complex medical issues. This is the article I wrote that was published on an online magazine called Complex Child.

http://complexchild.org/articles/2011-articles/october/extraordinary-little-man/

Looking back at this article reminds me of how far John has come. Day to day life can get me wrapped up in rushing, taking on too much and wishing John was doing better medically. I get wrapped up in the future instead of living in the present. I literally give myself anxiety thinking of scenarios that can happen if things were different. Things that probably will never happen consume my thoughts during the day.

Before I seen this on my memories news feed via Facebook I was talking to a friend about how negative my thoughts have been. Re-reading this was a blessing. A reminder telling me to STOP, breathe and smell the flowers right in front of me. Find the gratitude in the life I have today, full of oxygen tanks, bowling, Chuck E Cheese and all beef kosher hot dogs. Find the gratitude in the people around me today. The teacher that never gave up on him, the lunch lady that showed up to his birthday party and the students that sent him cards at the hospital! Be grateful for the party invites even if we can’t go, the friends that call to check in even if I can’t answer and our chosen family.

I cannot Deny  Autism, Chronic Lung Disease or Epilepsy. It will always be a part of our lives, but I will not let it control my thoughts!

What a great way to restart my week!

 

Daily Prompt: Thorny…or complex?!

Thorny

I have this horrible habit of scripting conversations and scenarios in my head that will literally never happen! For example, last night someone asked me to babysit this weekend. I declined because it’s my birthday weekend and I wanted to see if my husband was going to plan anything.

Mind you, I did not remind him or even send him out a hint. My plan was to wait for him to forget so I can go bat shit crazy.

In my head, I was scripting a conversation we would have if we were to see a therapist. Which we never will because he just won’t do it. (That’s another story!) I was saying things like “We have been together for over 20 years and every year I have to remind him…why can’t he just know it!” I literally drive myself crazy with the complexity of the script. Saying I am thorny is an understatement.

When I arrived home at 10pm after a 12hour shift he had an amazing homemade burrito bowl ready for me. I asked him if he had any plans Saturday and without a beat he said, “No, wanna go out?”. I immediately softened but was also a little surprised he asked. I am still not convinced he knows why I asked, but he fed me so I wasn’t feeling as thorny or complex and let it go.

Here’s to a Happy Birthday weekend, whether he knows it or not.

And a reminder, in the great words of my dear friend Ann B., “It’s about the season, not the day.”

Good thing he fed me….:)

Daily Prompt: Sympathy (Keep it!)

Sympathy

Sympathy: caring and understanding for the suffering of other

Don’t tell me you have sympathy for me as a mother who has saved her child’s life a hand full of times. Don’t tell me you have sympathy for me when you hear I gave him CPR today or we made it through another seizure.

Don’t tell me how you could never do what I do.

You cannot imagine my feelings or what is going through my head while I gave him CPR – How I cried and prayed he wouldn’t die in my hands. How I screamed for the paramedics to hurry up. You cannot imagine how I felt.

I hope you never know how it felt.

Keep your sympathy, give me your heart. Give me your silence so I know you are listening. Give me your time so I know you care. Give me your prayers so I know you love me. Give me your patience when I don’t return your calls. Give me your love when I am angry.

But please don’t give me your sympathy.

Anxiety got me like WTF?!?!

Anxiety just creeps up on me like a bad wedgy. One minute I’m happily dropping my son off at school next minute I’m running scenarios in my head about the things that COULD happen to him after I leave.

School nurses that show up 2 hours late and seem to think nothing of it are assholes.

My son goes to school with oxygen and a nurse is usually there to keep an eye on things. She needs to make sure the tank is full, that he is breathing ok, that he takes breaks when needed and that his oxygen concentrator battery doesn’t run out.

It’s not that hard.

So when a nurse arrives 2 hours late and manages to let the battery on his oxygen run out during her shift – the main job she has – I get angry. Anger is usually my first emotion. The program teaches me that anger stems from fear or hurt.  I have to ask myself why I am angry. I am angry because the nurse isn’t doing her job! Which spirals me into the scenarios of what could happen if John doesn’t have his oxygen.

It’s a vicious cycle that I need to stop myself in the middle of and chant “Let it go, let it go”.

What I do have control over is whether that nurse comes back. I also have control over teaching the aides and teacher what to do if a nurse doesn’t do their job or doesn’t show up.

I have control of how I react to the situation.

Before I got sober I had 2 personalities; confrontational or isolation

Today, I still have multiple personalities but they come from a better place 🙂 I can pause and live in the solution, right after an anxiety attack. I can stop myself from letting the crazy committee in my mind take over and pray, right after the anxiety attack.

I don’t know if I will ever avoid that anxiety but at least I know I can get through it today with a little more grace and dignity then I did in the past.

Now I just need to pray we find a reliable nurse that cares enough to show up on time. And I will continue to be grateful for the amazing staff at his school that support us!

Daily Prompt: Elevate

via Daily Prompt: Elevate

Elevate

When I think of the word elevate I can break it down by my life’s era’s.

In the 80’s, this child could elevate into tantrums and anger in a split second.

In the 90’s, this business woman would elevate an issue to a manager if I wasn’t getting what I wanted.

In 2005, this mother elevated issues to Doctors and Nurse Practitioners if my son wasn’t receiving the care he needed.

In 2010, this woman’s life was elevated to a state of chaos, so badly I needed a program!

In 2017, when I hear the word elevate I think of elevating over my body in a state of meditation and peace of mind.

It’s amazing how life’s perspective changes over the years as we grow emotionally.

I hope I always remain teachable.

The boy who didn’t talk…

via Daily Prompt: Priceless

Priceless

My son was on a ventilator and trached for 9 years. At the age of nine he had his trach removed and the stoma closed surgically.

After the surgery his dad and I stood at his bedside talking to the surgeon Dr. Holinger and the nurse about the procedure. We were so excited to hear his first words.

Johnny started to stir, we all looked over him.

Me: Johnny, how are you sweetie. You did a great job, once again!

Dr. Holiger: Hey Buddy, you did great!

Dad and the nurse stared at him.

We all anxiously waited to hear what he would say.

Johnny looked up at the four head staring down at him, rolled his eyes and said “God Damn it”, then he went back to sleep.

His first words, took 9 year and I just don’t blame him. Priceless!!