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<\/p>\nThe unintended consequence of having a child with autism is that you end up looking at life differently. \u00a0You don\u2019t have a choice. \u00a0It is something you simply must do.\u00a0 To help them, you must understand their perspective and point of view.<\/p>\n
You also end up doing things differently too. \u00a0A story comes to mind.<\/p>\n
My mother passed away on July 24th of 2015, Pioneer Day in Utah. \u00a0I will never forget this day not because of how sad it was but because of how awesome it was.<\/p>\n
I know that sounds strange, and no, I am not happy my mother passed away. \u00a0It was awesome thanks to the ICU staff at Intermountain Hospital in Murray, Utah.<\/p>\n
My mom had a pneumonectomy and while initially she recovered well, her progress deteriorated. \u00a0She was moved to a long-term care facility after an 8-month stay in the ICU of Intermountain. \u00a0My 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.<\/p>\n
We had a video chat with my mother, the three of us siblings, her doctors and primary care staff. \u00a0They 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.<\/p>\n
The heart attack was three days later at 6:30 AM. \u00a0It turns out the staff had goofed and no one was actually monitoring her \u2018ins and outs\u2019 in terms of fluids, nutrients (she was on a tube for breathing) and medication. \u00a0She had been getting only 600 calories a day and no nutrients, including no potassium. \u00a0This caused her heart attack. \u00a0 The staff had been able to give her chest compressions and oxygen and resuscitate her.<\/p>\n
My sister lived only 30 miles away and she rushed to the hospital to find my mother wide awake and happy. \u00a0She was feeling fantastic! \u00a0Which makes sense because for days she had been starving for food and fluid. \u00a0It still amazes me at how bad she must have felt for those days we were not there. \u00a0Had one of us been there, we would have caught it.<\/p>\n
When they gave her chest compressions, for over 3 minutes, they did not break a single rib. \u00a0That is highly unlikely but true. \u00a0Unfortunately, they did rip the tissue surrounding the staples that was keeping her lung from filling with fluid.<\/p>\n
As a result, her lung was slowly filling with fluid and there was nothing that could be done. \u00a0Her 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. \u00a0This could takes weeks or even months and they would need to open her chest several times a day. \u00a0He called it \u2018civil war battlefield surgery\u2019 and said while it was possible, it was excruciating for the patient. \u00a0In private, he said he would not give his own mother that kind of surgery as it was the worst possible kind.<\/p>\n
So, my mother had a choice. \u00a0Either 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. \u00a0She chose #2 on the morning of July 24th.<\/p>\n
In true style for my mother, she got right to work planning out her final day. \u00a0Her requests were fairly simple but, in true with who she is, rigid. \u00a0For her final day, she wanted to eat gelato while watching the fireworks before she went to sleep.<\/p>\n
July 24th is Pioneer Day in Utah, which is like July 4th on steroids. \u00a0There 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.<\/p>\n
My sister and mother bought an identical dress they would both wear like a mother\/daughter Sadie Hawkins dance. \u00a0My sister went home to get them and came back wearing hers. \u00a0Meanwhile the nurses in ICU had taken great care to give her a gentle and complete sponge bath. \u00a0They helped her put the dress on and you could see that she felt good for the first time in a very long time.<\/p>\n
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. \u00a0My 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 \u2018thumbs up\u2019 sign after every bite.<\/p>\n
After about 30 minutes of watching the fireworks with the lights out, she signaled that she was ready. \u00a0They turned the morphine on and she fell asleep. \u00a0We all stood watching the fireworks as her heart slowed and stopped beating. \u00a0No one had spoken in over 90 minutes. \u00a0There was simply nothing to say as we had every opportunity for closure. \u00a0It was the most beautiful death I can imagine.<\/p>\n
The next day, my brother, sister and I drove to my mother\u2019s house in southern Utah to go through paperwork and deal with the details. \u00a0We decided to have the service the next weekend and we all stayed at her house to pull it all together.<\/p>\n
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. \u00a0Every detail was reviewed and approved.<\/p>\n
Enter Boy Wonder Wonder. \u00a0My mother LOVED being a grandmother. \u00a0But 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. \u00a0My mom was not patient loving grandma. \u00a0In fact, she was fairly strict – even a little brutal – with the grandkids. \u00a0Rules were not guidelines in her house, they were the law.<\/p>\n
So the \u2018playing in the yard\u2019 was carefully scrutinized, just in case they were swinging the branch of a tree or trampling the grass a little too hard. \u00a0Or playing games in the house, but only cerebral games like Monopoly where everyone is very quiet. \u00a0She 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.<\/p>\n
Even with her adult children, you had to be sure to do everything just so. \u00a0Have a drink? \u00a0Be sure to use a coaster. \u00a0She wouldn\u2019t yell at you. Just correct you. \u00a0This included grammar too. \u00a0As a 40 year old son, I would get instruction on the difference between \u2018whoever\u2019 and \u2018whomever\u2019, \u201cJames, there IS a difference and as a 40 year-old man, you should know when to use which!\u201d<\/p>\n
She just wanted everything to be correct. \u00a0Everything had its rightful place, space and time. \u00a0It sounds overbearing and in some ways it was. \u00a0But the reality was that she was right almost ALL of the time. \u00a0She did not have rules that made no sense. \u00a0They made perfect, logical sense and trying to refute the rule was like trying to prevent the tide.<\/p>\n
Just bring up \u2018house slippers\u2019 around my brother, sister, wife, sister-in-law and you will hear groans and moans.<\/p>\n
One Christmas she bought house slippers for all the kids to wear inside the house after being outside. \u00a0My parents had just put in a brand new beautiful and shiny wood floor in the country house in Pioche NV.<\/p>\n
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. \u00a0As you might know by now, Boy Wonder Wonder was not a normal child. \u00a0He is the Tornado of Terror, the Destructor, the Mess Maker, the Terrorist. \u00a0Based upon what you have read, you are expecting disaster. \u00a0My whirlwind, lousy child and the immovable, follow the rules at all cost mom. \u00a0But that wasn\u2019t the case.<\/p>\n
Strangely, my mother was very patient with Boy Wonder. \u00a0She was not exposed too much to him, especially as he grew older and became even more rambunctious. \u00a0She passed away when he was two and a half. \u00a0The 5 year old Boy Wonder may not have survived contact with Grandma. \u00a0It would have been an epic battle and I am sure the losers would have been Boy Wonder\u2019s mother and myself.<\/p>\n
While she planned out her church service with great detail, she was less descriptive with what she wanted after that. \u00a0Except 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. \u00a0Just as importantly, no black was to be worn.<\/p>\n
However, Chris and I were left to wonder, what were we to do with Boy Wonder? \u00a0There will be lots of people wanting \u00a0to speak with us and watching Boy Wonder every moment was going to be impossible. \u00a0He would certainly escape if we did not make the party interesting enough for him to stay.<\/p>\n
What else do you do but rent an inflatable two story water slide?<\/p>\n
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.<\/p>\n
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.<\/p>\n
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. \u00a0The end result was completely unintended and unexpected.<\/p>\n
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. \u00a0Boy Wonder Wonder gave his grandmother the gift she always wanted. No one saw it coming until the day was done.<\/p>\n