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.
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!
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….:)
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 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!
via Daily Prompt: 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.
via Daily Prompt: 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!!
Quality time is so important to me.
I love spending quality time with my friends and family. When the time together isn’t forced and everyone really wants to be there, I feel loved.
I feel hurt when I schedule time with someone and they blow me. That tells me that my time is not important to them. It tells me that I am not important to them. Whatever they blew me off for is more important, whether its work or other people. This is with the exception of emergencies.
I really feel what you put out into the world, you get back in some form. Saturday, I had plans with someone I love and they blew me off. That night I was asked by two people if I would sponsor them. I spent the evening with a new sponsee talking about resentments and personal growth. We talked about owning our part in our story so we can learn and grow from it. Then we went for ice cream and laughed at her 7yr old son’s silly jokes.
The next day I was invited to lunch with a grammar school friend, which I accepted gratefully. Another friend invited me to a Jazz fest which I couldn’t attend because of work and sponsee commitments.
The universe if keeping me busy with people who want to spend time with me. Surrounding me with love the way I need to receive it, in quality time.
Thank you universal friends! Thank you HP for giving me the gift of friendship, sobriety and love!