#thestruggleisreal
Have you ever read that hashtag? It's usually for something comical, like Starbucks not having vanilla flavoring. Or trying to decide between a margarita or a glass of wine.
Ahh...if those were only our struggles.
Because let me tell you, this struggle with Autism/PANDAS/AE/whatever you want to call it is completely real.
Today, I lost it over dropping an egg on the floor. I felt my eyes filling up multiple times throughout the day, but the ugly cry came over a stinkin' egg.
I don't even find the time to write anymore. Our awesome, "recovered" son, the one who goes to the hospital every couple of months for this amazing procedure that brought him partially back to us..yeah, not sure where he has been.
We are losing Hunter quickly. The anti-psychotic went from bad to worse. After no change in behavior reported by his school staff, the recommendation was to double the dosage. We followed the orders, and we started the night wakings yet again. The agitation increased. The screaming matches for simple things like shoes and turning off a TV show ensued. Smiles were in the past. I was losing my cool more often than not, partly due to sleep deprivation and mostly due to frustration. After talking with the dr, we completely stopped the meds.
This week, I saw a happy, compliant boy after school on Tuesday through Thursday. Joking, laughing, easily redirected...he started to pop back. And then, last night, we had Paige come down frightened, followed by blood curdling screams at midnight from Hunter who couldn't get a watch off of his arm. Not sure how long he had been awake to find a watch and put it on, but he didn't fall back asleep for a couple hours.
Drop off this morning was a complete joke. He refused to get out of the car, and even with the stern talking from a teacher, he screamed and threw his backpack, and plopped down on the sidewalk as I drove away.
After a crazy week, complete with our engine going out on our car, swapping a rental, registering for summer camps, calling my MIL on the complete wrong day to wish her a happy birthday, dealing with Paige's increased anxiety, hours on the phone to fix the hospital bills from the first IVIG, organizing speakers for the special needs support group, a dentist appointment that will lead to a $4000 oral surgery for Hunter in a month (complete with anesthesia to crown two of his teeth and fix other cavities)...
and that's just the short list...
I am done. I'm at the point of an egg breaking me. As sad as this is, last weekend I took him to the pool in the hopes that he would get an ear infection so he could take an antibiotic. Sad.
I can't help the "Uncle!!" thoughts running through my head. I need this child of ours to get better- fast. I can feel myself falling into old patterns of not returning phone calls, avoiding conversation at social events, and running through all of the cycles of grief yet again.
Please pray for our boy. Pray that some answer will be so clear that we won't even need to think about the course of action. He is scheduled for IVIG the last week of the month, with his oral surgery on May 4th (pending insurance approval).
This struggle is #freakingreal.
Ahh...if those were only our struggles.
Because let me tell you, this struggle with Autism/PANDAS/AE/whatever you want to call it is completely real.
Today, I lost it over dropping an egg on the floor. I felt my eyes filling up multiple times throughout the day, but the ugly cry came over a stinkin' egg.
I don't even find the time to write anymore. Our awesome, "recovered" son, the one who goes to the hospital every couple of months for this amazing procedure that brought him partially back to us..yeah, not sure where he has been.
We are losing Hunter quickly. The anti-psychotic went from bad to worse. After no change in behavior reported by his school staff, the recommendation was to double the dosage. We followed the orders, and we started the night wakings yet again. The agitation increased. The screaming matches for simple things like shoes and turning off a TV show ensued. Smiles were in the past. I was losing my cool more often than not, partly due to sleep deprivation and mostly due to frustration. After talking with the dr, we completely stopped the meds.
This week, I saw a happy, compliant boy after school on Tuesday through Thursday. Joking, laughing, easily redirected...he started to pop back. And then, last night, we had Paige come down frightened, followed by blood curdling screams at midnight from Hunter who couldn't get a watch off of his arm. Not sure how long he had been awake to find a watch and put it on, but he didn't fall back asleep for a couple hours.
Drop off this morning was a complete joke. He refused to get out of the car, and even with the stern talking from a teacher, he screamed and threw his backpack, and plopped down on the sidewalk as I drove away.
After a crazy week, complete with our engine going out on our car, swapping a rental, registering for summer camps, calling my MIL on the complete wrong day to wish her a happy birthday, dealing with Paige's increased anxiety, hours on the phone to fix the hospital bills from the first IVIG, organizing speakers for the special needs support group, a dentist appointment that will lead to a $4000 oral surgery for Hunter in a month (complete with anesthesia to crown two of his teeth and fix other cavities)...
and that's just the short list...
I am done. I'm at the point of an egg breaking me. As sad as this is, last weekend I took him to the pool in the hopes that he would get an ear infection so he could take an antibiotic. Sad.
I can't help the "Uncle!!" thoughts running through my head. I need this child of ours to get better- fast. I can feel myself falling into old patterns of not returning phone calls, avoiding conversation at social events, and running through all of the cycles of grief yet again.
Please pray for our boy. Pray that some answer will be so clear that we won't even need to think about the course of action. He is scheduled for IVIG the last week of the month, with his oral surgery on May 4th (pending insurance approval).
This struggle is #freakingreal.
Comments
Post a Comment