I have a hot date tonight.
Let me explain...
Our son with autism has seizures and has been in a very bad seizure-cycle for the past two months. Finally, after watching him go through hell with each one and me getting no help to help him, -- a not-so-nice letter to his primary care doctor resulted in tests scheduled and referrals being made.
In preparation for all that, we had received a flier in the mail from a Medical Center by our house about a seminar on Epilepsy. Essentially going over the latest and greatest in research and treatment.
Hence, our hot date tonight.
Before another hot date tomorrow for the EEG.
Now to most people, a hot date would imply a much different scenario. But not for us. Our second honeymoon was spent in Orlando. No, not to have 'sex on the beach' the drink - or the act. But to stay cooped up in the airport hotel at an Autism conference listening to workshop after workshop, on poop.
In fact, the closest we got to Mickey Mouse that weekend away, was the Disney Gift Shop right there in the airport/hotel that we again, never left the entire weekend.
Yep, just me and my sweetie, and a whole heapful of poop. Pictures of it, the research being done on it, and the treatment of it. I still swear that I could actually even smell it coming from the overhead screen during one such graphic workshop.
Thankfully though, this hot date will be a bit less... crappy.
Yet the reason for having to go to the seminar stinks just as bad.
We just came off of a decade-long battle with that issue, and now must focus on the treatment and recovery from this lingering issue. Let alone all the other issues we daily face.
I'd like to cancel my subscription to autism issues please!
Just like with the "Leaky Gut" issue, where we were repeatedly told, "It's just autism", (um no, it looks like diarrhea to me, not autism), I have been told that these horrendous seizures might just be "learned behavior".
Yes folks, that was the expertise we were met with after one season of seizures years ago. After a period of nine months of relentless seizures that responded to no amount of medication, and after stitches on his eyebrow, a broken collarbone, twisted ankle from stumbling, and shattered front teeth, --- because the EEG during a brief period did not show any seizures, the only intelligent, common-sense conclusion would be that I, his mother who was the one with him day and night, was mistaken. I wasn't seeing seizures, I just had a faker for a child.
I told my husband that night what the "specialist's" diagnosis was, and his reply was, "And you let him live?"
If I wasn't so sleep-deprived and caught off guard when he said that, I just might have gotten in a few good punches before security was called.
No, not really. I don't condone violence, nor would I perform it, - but visualizing it in some situations like this, sure makes me feel better....
Just because an expert didn't see a seizure on an EEG during a time he wasn't having seizures, doesn't mean he's not having them, any more than being autistic and having chronic diarrhea is 'just autism'.
Which brings me back to our hot date tonight learning more about epilepsy so we can turn his seizures from helpless to hopful in him being seizure-free one day.
Which leads in to our hot date tomorrow as well, as we wrestle our son's arms and legs that will be flailing as they attempt to put the leads on his head, the most sensory dysfunctional part of his body.
To further the romance of that rare day spent together as husband and wife, we'll have to somehow get him to lay there still and quiet and if we get really, really, lucky, we'll score by Brandon having a seizure during that time.
But if not, and when I'm sitting there while yet another "specialist" suggests to me that perhaps what Brandon has been experiencing these past two months might just be 'behavior' -- I'll at least be prepared.
I'll know I've learned everything I can and did the best I can.
And will continue the search for answers just as long as I can.
While I'd rather not be on this roller coaster called Life with Autism - I at least know I'm not alone. I have an entire community of support, and an entire church of prayer partners.
And a wonderful husband to go on these hot dates with.
It took me ten years to find a doctor who would test for, diagnose, and properly treat my son's gut issues. But the validation of that moment made it worth it. I was no longer just a mother who imagined cleaning up diarrhea 8-10 times a day for a decade, I was a mother who perservered and with God's timing and provision found our miracle.
It may be that with these seizures as well.
And that's ok.
That doesn't deter me nor does it discourage me.
It just makes me cling tighter to the hope that this test will be different, this new referral will be the one.
And that this too, shall pass.
Hanging on to Hopeism,
Michelle M. Guppy
