I am privileged to be a special needs mom to Bethany, my almost 18 year old daughter who became multiply, permanently, and profoundly disabled after surgery to remove a brain tumor when she was two!
This is my account of both a typical and not so typical day in the wonderful, crazy life of me: a special needs mom!
It was a typical day because, unfortunately, everything I mention about Bethany is what typically happens every single day.
But, what happened that day for my husband and me was anything but typical!
My day began at 7 a.m., just five hours after after both Bethany and I had finally hit the hay earlier at 2 am.
After nearly sixteen years of this, we’re both living proof that a body can get used to functioning on very little sleep.
Bethany, who has slept beside me in the same bed ever since she was born, woke me up just like she does every single day.
She pushed and swatted at me!
If you’re wondering why we still sleep in the same bed together, it’s because I am afraid she’ll have a seizure in the night and die!
We both rolled out of bed and Bethany changed from her sleeping clothes (she has never consented to wearing pajamas) into one of the nearly identical outfits of her “in the house” clothes.
She has multiple copies of the exact same outfits!
She does have a different set of identical outfits for wearing when she goes out.
Those are her “going out” clothes!
Once dressed, Bethany plopped herself down onto the living room couch where I administered her three seizure medications.
All of her medications are toxic to her body and cause several undesirable side effects.
And none of them actually stop her seizures!
After taking her medicine, Bethany demanded the same exact meal she has been demanding for breakfast, lunch, and dinner for the past several months…bow tie pasta with tomato sauce, sliced cucumbers with Italian dressing, and almond milk to drink!
Bethany has consumed so much tomato sauce in her life, that the skin on her fingers and her face have taken on just a slight bit of an orangeyish tinge!
Similar to what happens to some people when they eat too many carrots!
I served Bethany her food and sat down beside her on the couch, which is my usual practice, because I am always just a little bit afraid she might have a seizure and choke on her food.
Bethany has been eating all her meals on the couch since she got sick.
At first it was because she couldn’t sit up yet and it was easier to just feed her there.
Now, it’s because it’s become so much a part of her routine and ritual that she just cannot break away from it!
At about 9:30, after eating and watching some Barney and Blues Clues, Bethany suddenly dove down next to me and covered up her head with her ratty old Spiderman blanket!
A sign that she is having little seizures.
Seizures always makes her feel sick and crabby…very, very crabby and they ruin any chances she might have of enjoying her day.
We are currently trying to get Bethany into a clinical trial of a new cannabis based seizure medication, but have not heard anything from them yet.
I’m totally convinced that her only hope of having a happy, seizure free life is to get her off of all presently available toxic and ineffective medications and onto medical marijuana.
So far, we haven’t been able to manage procuring it for her, though!
But getting back to our day…my husband, Malcolm had taken the day off because we were planning to get our 17A Special Needs Guardianship application notarized and filed that day.
Then we planned to do something fun alone while Bethany’s personal assistant, the amazing Kristin, was with her.
Their plans were to go to the library and swimming at the YMCA!
At around 11ish Malcolm sat with Bethany on the couch while I took a shower and got ready to go.
Then we switched places.
At around 2, Kristin arrived and took her place on the couch next to Bethany, who was still hiding beneath her spiderman blanket!
Malcolm and I, both happy as clams to be going off alone together, took our leave and went to the bank to get our papers notarized.
But when we got there, Malcolm realized his driver’s license wasn’t in his wallet!
So we trekked back home to search for it.
This was going to waste precious time!
He had no idea his license was missing, or for how long it had been missing
As a result, he also had no idea how long he’d been driving around without his license!!!
We searched high and low but couldn’t find it anywhere.
At this point, I became quite upset.
I was angry, disappointed, depressed, and despondent!
I almost had a panic attack.
I had visions of this problem delaying our plans to get the application filed for weeks.
The whole guardianship process can take up to 6 months to be completed, so the application needed to be filed 6 months before Bethany turns 18, which was exactly 6 months from that day!
Now we were going to waste even more precious time going to the DMV so Malcolm could order a new license.
He was issued a temporary one to use but it didn’t have his photo on it!
I wasn’t at all sure the notary person would accept an ID with no photo!
If she didn’t accept his temporary ID, we would have to wait until his new license came in the mail, which could take weeks.
And Malcolm would have to arrange getting another day off!
He works in a teeny, tiny post office where he is the only employee and is rarely ever permitted a day off!
To make a long story just a wee bit shorter…
We got Malcolm’s temporary license and went back to the bank where the notary person did accept it and she notarized our application.
We high tailed it the 25 miles over hill and dale to the surrogate court, in the county office building, where we successfully filed our 17A special needs guardianship application on time!!
What a relief!
What a sense of accomplishment!
Then we redeemed the day by taking a stroll through the Fly Creek Cider Mill where Malcolm sampled some hard cider and we bought two pieces of fudge to share!
And then we came up with our new motto: We’re turning the crappy into happy!
Unfortunately, when we arrived back home we found Bethany in the same state she had been in when we left her: lying on the couch with the blanket over her head.
Kristin told us that had asked for another serving of pasta, cucumbers, and almond milk, though.
She had never felt well enough or happy enough to go to the library or the Y.
Later in the evening at around 9 p.m., Bethany emerged from her Spiderman cocoon to eat the same exact meal that she had eaten several times earlier.
She suddenly perked up enough to play a round of Yahtzee with me and a few rounds of dominoes with dad.
She did her regular night time medicine and tooth brushing ritual, (which is quite extensive and includes counting to 20 several times!) with dad at about 10:30, then he went to bed!
Bethany insisted upon taking a bath at midnight, then we hit hay ourselves!
Life has been full of disappointments, especially for Bethany, but we’re doing our darndest to make her life as happy as possible!
But come what may, we will continue making the most of and celebrating every moment we are blessed with!
To the best of our ability, we will continue striving to turn the crappy into happy!
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