It’s been a long while.
Some days I was so tired of everything, the weight of it all so heavy. Sometimes when no one was around I’d lower my head onto whatever surface was nearest and rest.
The light at the end of the tunnel, I never saw it because I didn’t believe it was there. I stopped caring about much. Getting an emotional response from me about anything was getting more and more difficult. I told Kristine something has to give, that Gracie needed to go into a group home. I couldn’t continue living the way we had been.
What Kristine and I have weathered over the years would harden anyone, and probably ruin a lot of relationships. There were days when Gracie cried for hours, with me resorting to wearing ear protection in our home, protection I normally wear to the gun range. We took her to Urgent Care more times than I can count, only to be told sometimes nothing was wrong. Other times it was the familiar ear infection or strep throat. We learned to cope, sometimes with a stiff drink to blur the edges.
Kristine was so afraid of getting water in Gracie’s ears that she resorted to washing Gracie’s hair with a damp washcloth. If Kristine wanted Gracie to have a deep cleanse for her hair she would ask me to do it. Only I could cradle Gracie’s head with one arm, while she was laying down in the tub, and use my free hand to carefully wash her hair without getting water in her ears.
When Gracie swam in our pool we’d put the squishy silicone earplugs in her ears, a swim cap over her head and ears, and finally a stretchy, adjustable head band called an Ear Band-It. All this to keep water from getting into her ears, and to keep Gracie from pulling the earplugs out of her ears. We’d tried only using suction-style plugs at first; she ripped those out and ruptured an eardrum. The whole cap and band contraption made her look like a conehead, but it worked — until she decided she didn’t want to be in the pool, ever again. She’d tear off the cap and band, climb out, stand on the deck and wail. Nowadays Kristine and I drift in the water, alone, while Gracie gets her steps in inside our home.
There were times I lost my temper because of the things Gracie did. Just when I thought I couldn’t care less about anything, she’d do something to set me off. Not too long ago I was getting ready for work, had finished showering, putting my clothes on, etc., and I walked into our kitchen. The smell of feces hit me. I grabbed her wrists and held her hands before me to inspect them, to see she had reached into her diaper after she had filled it with urine and feces. I went from zero to furious in a heartbeat, paralyzed with seething for a moment. My mind was racing, trying to figure out what to do. Gracie’s ride was on her way. I dropped Gracie’s wrists, grabbed my phone, called her driver and said I needed fifteen more minutes. I stripped down to my boxers right there in our kitchen, put on some nitrile gloves, took Gracie to her bedroom, removed Gracie’s clothing and diaper, inspected her clothing (they were clean, amazingly enough), wiped her bottom and hands, took her to the girls’ bathroom, cleaned out her fingernails, cut her fingernails, scrubbed her hands and fingernails, and put her clothes back on. I turned all the lights on in our home to find and clean any and all surfaces contaminated with feces. Hopefully none of my neighbors out for their morning walk or run didn’t see me running around inside with only my boxers and gloves on. If they did, oh well. Once I was done with all that and I had put my clothes back, I went outside with Gracie and she caught her ride just in time.
Another morning I was changing her diaper right before I left for work. I was dressed, all ready to go. I had her lay down on her bed and I removed her shorts and diaper. Her TV was on, showing an old movie that I liked. Being distracted for a moment, I watched a quick scene while Gracie lay on the bed. I was turned sideways, relative to Gracie, looking to my left at the TV. Suddenly I felt a warmth along the right side of my body. Confused, I looked to my right and see Gracie with her legs spread, peeing all over me, herself, and her bed. I was apoplectic with rage, boiling inside. But, I manage to throttle my rage, control my actions. I strip Gracie of her clothing, wipe her down, and put some clean, dry clothes on her. Next, I strip her bed of bedding, throw it all into the washing machine, add laundry detergent and vinegar to the load, and start the machine. Then I head to our bathroom, strip myself of clothing, turn the water on and step into the shower. I started thinking of my numbness, indifference only minutes ago, and then the anger presently coursing through me. I became ashamed of myself, and stood there in the shower, crying, staring at the wall tiles as the hot water ran over me. I stopped as I wrote this, thinking back to that moment, in a trance for a few minutes, reliving it all.
Other times it wasn’t Gracie who made me angry. It was the miserable fucks out there in the world who lie, steal, and cheat to take advantage of disabled people. One day we received a Social Security notice, saying someone in New Jersey stole Gracie’s identity. I had to go to a local SSA office and sign an affidavit stating Gracie had never worked in New Jersey. A diaper-wearing, nonverbal, severely autistic 23 year-old person. I’m certain no one would hire her, so yeah, she never worked in New Jersey, much less a day in her life.
Enough of all that, though. On Tuesday of last week Kristine and I moved Gracie to a group home in Orlando. What a long day that was. And of course there were snafus (situation normal, all fucked up), like the group home staff not being able to accept Gracie’s medications because the prescription had expired, something like that. I don’t know the details exactly, cause Kristine got on the phone with all Gracie’s doctors to take care of it. Meanwhile, I spent three hours in the group home putting Gracie’s dresser together. I was grateful the group home staff had already assembled her bed.
We finally left Gracie and her group home at 4:30 in the afternoon. Our home was an hour away, and we decided we’d rather eat dinner out, than eat at home. We headed to Tin Whiskey in Cocoa Village, close to where we live. Upon arrival we ordered rye whiskey Old Fashioneds for both of us, and dinner. We sipped our drinks and ate our dinners, largely in silence. It was blessed. No Gracie to rush home to, no caregiver to relieve and pay, zero care for when we needed to leave.
Apologies if all this reads fragmented and rushed, but truth be told, I just want to wrap this up. Trust there’s so much more to be told, however, I’ll leave it here. This will be my last post on this blog. I’ve decided to leave the content up until the bill for hosting this content comes due. Then this blog will disappear, forever. Before I go, I thank all of you readers who’ve shared in our journey with Gracie.
It’s been just over a week now, at home without Gracie. We keep her bedroom door closed as a reminder she isn’t home with us anymore. The child gates are down too. We’re no longer locking all the interior doors and cabinets behind us. We hear no more humming or hacking cough, or the sound of her constantly flicking her chewie on its short tether, attached to her shirt. No more of her endless pacing around our home, strewing crumbs on the floor everywhere while eating her snacks. No more of her crying, or sneezing without covering her mouth (sometimes with food in her mouth). But believe it or not, despite all that, I do miss her.
As I’m getting ready to post this I get a phone call from Kristine. Gracie had a seizure last night, fell and hit her head. Kristine is on her way home from work, to meet up with me so we can go to Orlando and check in on Gracie at the hospital. Always something, innit?
***FINAL UPDATE***
Gracie was in the hospital for four nights and five days. She had an x-ray and an MRI done, and the docs discovered foreign objects in her lungs and abdomen. These appeared to be rings and or springs. The MRI was postponed until the docs figured out what to do. Traveled twice to Osceola Regional Hospital in Kissimmee, FL during this time. Had to inform the hospital of Florida Administrative Code 65G-2.012(2)(c), where 1:1 supervision must be provided for persons like Gracie. On the third morning of Gracie’s hospital stay a social worker was assigned to watch over Gracie, until all appropriate actions were completed and Gracie was released to return to her group home. This all started last Thursday, Nov-13, the day after I was let go from my job, a company I had been with for over 17 years. Needless to say, it has been a terrible week for my family and me.
On the fifth day the hospital called Kristine to inform her that Gracie was being uncooperative and that the hospital staff is unable to perform an EEG. Kristine requested they sedate Gracie, and for whatever reason the hospital wouldn’t do that. I then had to get involved and request an AMA form to be sent to us, to enable Gracie to be released against medica advice. Gracie was stable and had been in the hospital long enough. The hospital requested a fax number so the AMA form could be sent to us. Who has a working fax machine in 2025?! I requested the hospital send the form via their secure patient portal, Docusign using their enterprise account, or by taking a photo of it with a phone and texting it to Kristine. None of those options were acceptable to the initial hospital staff that I spoke to.
I decided to play hardball by informing the hospital that Kristine, Gracie’s guardian, will revoke further consent for the hospital to treat Gracie, and that someone from the group home will be by the hospital shortly to pick Gracie up and return her to the group home. I explained per FL statute 395.1041 we did not need a signed AMA form to remove her from the hospital. The Nurse Director I was speaking with then asked that I allow her to speak with the doctor treating Gracie, and advocate for her to be released, without having to do an AMA or us revoking consent. An hour later Gracie was released, and two hours later Gracie was back in her group home.
I will never forget the feeling of dread when I saw the door to our condo was wide open. My youngest daughter, my mother, and myself had just come back from an evening swim at the community pool. Kristine and Gracie had stayed behind at the condo, as Kristine was tired and didn’t feel up to watching Gracie in the pool. Kristine has likely fallen asleep and Gracie may have escaped into the night. I’m thinking, “Please, God, please let Gracie be in there.”
graciesautism 