The unintended consequence of having a child with autism is that you end up looking at life differently. You don’t have a choice. It is something you simply must do. To help them, you must understand their perspective and point of view.
You also end up doing things differently too. A story comes to mind.
My mother passed away on July 24th of 2015, Pioneer Day in Utah. I will never forget this day not because of how sad it was but because of how awesome it was.
I know that sounds strange, and no, I am not happy my mother passed away. It was awesome thanks to the ICU staff at Intermountain Hospital in Murray, Utah.
My mom had a pneumonectomy and while initially she recovered well, her progress deteriorated. She was moved to a long-term care facility after an 8-month stay in the ICU of Intermountain. My brother, sister, and I had maintained a 24/7 watch on her while in the ICU, but when she went to the long-term care facility, there was a three-day gap where none of us could be there.
We had a video chat with my mother, the three of us siblings, her doctors and primary care staff. They outlined care, we discussed our concerns (especially with none of us being there for a few days) and the staff assured us that everything would be fine.
The heart attack was three days later at 6:30 AM. It turns out the staff had goofed and no one was actually monitoring her ‘ins and outs’ in terms of fluids, nutrients (she was on a tube for breathing) and medication. She had been getting only 600 calories a day and no nutrients, including no potassium. This caused her heart attack. The staff had been able to give her chest compressions and oxygen and resuscitate her.
My sister lived only 30 miles away and she rushed to the hospital to find my mother wide awake and happy. She was feeling fantastic! Which makes sense because for days she had been starving for food and fluid. It still amazes me at how bad she must have felt for those days we were not there. Had one of us been there, we would have caught it.
When they gave her chest compressions, for over 3 minutes, they did not break a single rib. That is highly unlikely but true. Unfortunately, they did rip the tissue surrounding the staples that was keeping her lung from filling with fluid.
As a result, her lung was slowly filling with fluid and there was nothing that could be done. Her surgeon said the only potential repair was to cut open her rib cage, lift open her chest from the side and drain the fluid every day until the brachial tissue had a chance to re-heal. This could takes weeks or even months and they would need to open her chest several times a day. He called it ‘civil war battlefield surgery’ and said while it was possible, it was excruciating for the patient. In private, he said he would not give his own mother that kind of surgery as it was the worst possible kind.
So, my mother had a choice. Either she could slowly drown to death over a several days as the fluid entered her lung or she could accept morphine, slowly go to sleep and her heart would stop. She chose #2 on the morning of July 24th.
In true style for my mother, she got right to work planning out her final day. Her requests were fairly simple but, in true with who she is, rigid. For her final day, she wanted to eat gelato while watching the fireworks before she went to sleep.
July 24th is Pioneer Day in Utah, which is like July 4th on steroids. There is not one single HUGE display like we think for Independence Day but the fireworks go on all over and, in some places, for hours.
My sister and mother bought an identical dress they would both wear like a mother/daughter Sadie Hawkins dance. My sister went home to get them and came back wearing hers. Meanwhile the nurses in ICU had taken great care to give her a gentle and complete sponge bath. They helped her put the dress on and you could see that she felt good for the first time in a very long time.
We spent some time saying our last goodbyes and as it got dark, the nurses wheeled her bed up to the top floor and in front of the largest window they could find. My brother and I had gone out and bought every flavor of gelato we could find and she sat up at the bed, trying different spoonfuls of gelato and shaking her hand in a ‘thumbs up’ sign after every bite.
After about 30 minutes of watching the fireworks with the lights out, she signaled that she was ready. They turned the morphine on and she fell asleep. We all stood watching the fireworks as her heart slowed and stopped beating. No one had spoken in over 90 minutes. There was simply nothing to say as we had every opportunity for closure. It was the most beautiful death I can imagine.
The next day, my brother, sister and I drove to my mother’s house in southern Utah to go through paperwork and deal with the details. We decided to have the service the next weekend and we all stayed at her house to pull it all together.
The day she was going to die, my mother planned out her service with her best friend who was also a pastor at her church. Every detail was reviewed and approved.
Enter Boy Wonder Wonder. My mother LOVED being a grandmother. But only in her head – the romantic part of being a grandma that you daydream about with all the children around, playing in the yard and playing games. My mom was not patient loving grandma. In fact, she was fairly strict – even a little brutal – with the grandkids. Rules were not guidelines in her house, they were the law.
So the ‘playing in the yard’ was carefully scrutinized, just in case they were swinging the branch of a tree or trampling the grass a little too hard. Or playing games in the house, but only cerebral games like Monopoly where everyone is very quiet. She was very generous and loving in her heart, but the practicalities of grandchildren was not in sync with the realities of grandchildren, which is a very messy and loud affair.
Even with her adult children, you had to be sure to do everything just so. Have a drink? Be sure to use a coaster. She wouldn’t yell at you. Just correct you. This included grammar too. As a 40 year old son, I would get instruction on the difference between ‘whoever’ and ‘whomever’, “James, there IS a difference and as a 40 year-old man, you should know when to use which!”
She just wanted everything to be correct. Everything had its rightful place, space and time. It sounds overbearing and in some ways it was. But the reality was that she was right almost ALL of the time. She did not have rules that made no sense. They made perfect, logical sense and trying to refute the rule was like trying to prevent the tide.
Just bring up ‘house slippers’ around my brother, sister, wife, sister-in-law and you will hear groans and moans.
One Christmas she bought house slippers for all the kids to wear inside the house after being outside. My parents had just put in a brand new beautiful and shiny wood floor in the country house in Pioche NV.
I love my mother but it was much more fun to be around her when we were not pass-blocking between my mother and the children. As you might know by now, Boy Wonder Wonder was not a normal child. He is the Tornado of Terror, the Destructor, the Mess Maker, the Terrorist. Based upon what you have read, you are expecting disaster. My whirlwind, lousy child and the immovable, follow the rules at all cost mom. But that wasn’t the case.
Strangely, my mother was very patient with Boy Wonder. She was not exposed too much to him, especially as he grew older and became even more rambunctious. She passed away when he was two and a half. The 5 year old Boy Wonder may not have survived contact with Grandma. It would have been an epic battle and I am sure the losers would have been Boy Wonder’s mother and myself.
While she planned out her church service with great detail, she was less descriptive with what she wanted after that. Except that she wanted to bring everyone together at her house for a fun party, something she had never been able to do while she was alive. Just as importantly, no black was to be worn.
However, Chris and I were left to wonder, what were we to do with Boy Wonder? There will be lots of people wanting to speak with us and watching Boy Wonder every moment was going to be impossible. He would certainly escape if we did not make the party interesting enough for him to stay.
What else do you do but rent an inflatable two story water slide?
The slide took up about half of the back yard with all the kids in their suits, running up stairs on the slide and squealing with laughter and fun on the way down. As an adult watching, it was impossible not to smile and laugh as we watch the kids.
This is what my mom always romanticized about – grandkids running around, having a great time, laughing and a group of people she cared about at her home. We were all eating and drinking, sharing stories about my mom.
I wish I could say I planned it out and it worked out the way I wanted. But it took us trying to figure out how to entertain Boy Wonder Wonder to create exactly what she had always wanted. The end result was completely unintended and unexpected.
This is what those parents who blather on about how wonderful it is to have an autistic child. Sometimes this is the result and something magical happens. Boy Wonder Wonder gave his grandmother the gift she always wanted. No one saw it coming until the day was done.
During our week alone in our mother’s house after she passed away, we three sibs wrote her obituary. We decided to put in the relevant details but also some humor that she would have loved and hated equally:
Delores Louise Schafer passed away peacefully on July 24th, 2015. She was at peace and surrounded by those who loved her. Her end was like her life, on her terms, in great style and she got what she wanted – to watch fireworks and eat vanilla bean gelato.
Known to many as Dee, she had a great love of Thai food, traveling, bubbles, learning, bowling, Pioche, St. George, her family and her friends.
She overcame several life challenges, beating incredible odds against cancer, a full code heart attack three days before her passing with ZERO impact, major surgeries and getting her grandkids to wear clean ‘house shoes’.
She leaves behind boxes and boxes of old receipts and paperwork, which was either a very clever prank or perhaps a last gift to her children as we continue to find amazing treasures in the search for hidden legal documents.
She also left mountains of brand new shoes, enough clothes to fill a semi-truck, magazines to fill every doctor’s office in St. George, treasured memories from those who knew her and a family who loved her.
She was a connector in life, the ‘glue’ for her family and she wanted to give those who knew her one last gift of hospitality and bring us together in celebration.
Her Celebration of Life will be held at Grace Episcopal Church in St. George with a mandatory reception (some Dee Humor) to follow at the home she loved on August 1st at 1:30 PM.
Per her request, please wear festive colors and arrive prepared to tell stories and have a great time. This is her party after all and she was very clear about what she wanted – to live well, love much and laugh often.
She wanted strict adherence to her request and we have several shirts with flamingos for those who might come dressed in black. However, you are allowed to wear shoes inside the house!
Her final resting place will be under a purple rose bush at the rose garden at Grace, exactly as she wanted. In lieu of flowers, a donation may be made to her amazing and wonderful spiritual family at Grace Episcopal Church, 1072 E 900 S, St. George, UT 84790
The obituary caught the attention of a number of people who read it in Las Vegas. They called and emailed asking about who this woman was, wanting to know more. A reporter ended up writing an article about my mother titled, “Las Vegas Woman Detail Oriented to the Last”. It was a wonderful honor to have her recognized and written about.
But the best part?
The article was filled with errors with very few of the details correct. My mother would have been so pissed and we children would have had a great time teasing her. If you have read this entire story, you probably get why.
It was the ultimate last gift from my mom. Maybe intended but certainly unexpected!
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