It was a year ago today that the nightmare began... Literally. A year ago today that I would blog about what was coming; even if I didn't know it was. A year ago today... My warning. The warning I didn't understand. The warning that didn't cushion the blow of another diagnosis.
One month from tomorrow marks one year since Justin was dx'd with epilepsy.
I would like to say that all is well, but I would be telling a tall tale. I would love to say that the medication is in order and is controlling the seizures without any of the ugly side effects, but that would be a flat out lie.
This one has been hard. Its not as much the seizures, though they are heartbreaking to witness, it's the medication. Memory loss, hair loss, aggression, short temperament... Just a small taste of how this medication changes you. Makes you loose yourself. How it has changed Justin.
I am so tired. Tired of fighting the school and the teachers. Tired of missing who Justin is. Tired of constant emails to remind people about accommodations and pissed that a teacher feels that she has the right to discuss Justin's medication changes with HIM.
I'm tired of not knowing what to do. What choice to make. What path to follow. I'm tired of being scared that I am going to screw EVERYTHING up for him. I'm tired of the feeling that I am going to fail.
One month from tomorrow marks one year since Justin was dx'd with epilepsy.
I would like to say that all is well, but I would be telling a tall tale. I would love to say that the medication is in order and is controlling the seizures without any of the ugly side effects, but that would be a flat out lie.
This one has been hard. Its not as much the seizures, though they are heartbreaking to witness, it's the medication. Memory loss, hair loss, aggression, short temperament... Just a small taste of how this medication changes you. Makes you loose yourself. How it has changed Justin.
I am so tired. Tired of fighting the school and the teachers. Tired of missing who Justin is. Tired of constant emails to remind people about accommodations and pissed that a teacher feels that she has the right to discuss Justin's medication changes with HIM.
I'm tired of not knowing what to do. What choice to make. What path to follow. I'm tired of being scared that I am going to screw EVERYTHING up for him. I'm tired of the feeling that I am going to fail.
10 comments:
HUGS Lora... I am so sorry that things are so rough and I wish I had the right words to make it better. Praying for you and Justin.
(((HUGS))) I cant imagine the pain youre feeling but I know all too well about the stuggles with school My heart is with you and I'm praying things sort out for you and J ...OXOX
(((HUGS)))
(grr...the whole comment I left was wiped out by google...lol)
I know all too well the struggles with school and teachers. I'm praying everything sorts out for you and J.
OXOX
I'm very sorry things haven't smoothed out. :(
Sending you both many hugs this day and everyday!
I'm so sorry, Lora! We didn't have a double diagnosis, but just 1 kid with each dx. So kind of different, but still so scary and not knowing SUCKS! I will keep you in my prayers.
I hate this post.
I hate what it represents.
I hate that you doubt your fabulousness.
But, I love you.
i have no words, my friend...other than you could never fail...you are his Mom and you are doing an amazing job. Praying for you and sending you hugs!
How frustrating when something that is supposed to help takes things at the same time.
Can't imagine how heartbreaking it is, my friend.
HUGS!!
I have nothing helpful to say... just know that I hate those things for you, too. ::hug::
Post a Comment