I considered an array of possibilities for the title of this post. And then I read a post on another blog, and stole the powerful three-letter word: NOW.
But for right now (pun intended) lets backtrack to yesterday...
I woke AJ up at 5am. He was up having a private VIP:M (Very Important Person: Myself) Party in his room for a few hours. Giggling and laughing like it was 2pm not 2am.
I had to keep him awake until 10am, which was when he has his EEG. His neurologists office just happened to have an EEG opening and time for his neurologist to see him...instead of two weeks from now. They cannot sedate, put under, do anything to kids to make them comatose during this test. Which would be so lovely. Medications will give false results on the EEG. So they sleep deprive children instead. Not so lovely.
I had thought to have him fall asleep in the car just as we pulled in (instead I was singing, pulling on his leg and trying like the dickens to keep him awake). Thank goodness I did not have him fall asleep. Our EEG experience began with a beyond wonderful EEG technician. She measure AJ's head with a fabric tape measure and make red marks on his head with a fun red pencil. Twenty minutes later, after she had colored on his head, placed the electrodes and wrapped his head with gauze, the EEG began. In this wonderful technician's many years of experience, she had never seen a child fight as much as AJ did. Most kids give in after the electrodes are on and fall asleep just in time for the EEG. Nooooot AJ.
He screamed bloody murder for over an hour and a half. Which complete unnerved me. I'm used to his crying. Believe me. But this blood curdling screaming gets to a person, especially as you are trying to keep his arms down and he's kicking you in the chest/neck, and eyeballs. AJ's tone makes him extremely strong when he's upset and the whole "hold me down while this lady does weird things to my head" sent him into a total sensory overload. I cried a bit while I struggled to hold him down-very unsuccessfully might I add. He was not able to have his implants on during the test, so we were in silent land, which also bothered me. I had no way, other than blowing softly on his face and limbs, to comfort him. Not only that, but the fact that he doesn't understand "this lady isn't hurting you, she's just putting stickers on your head, now go to sleep" is upsetting.
He did give us about 2 minutes of drowsy-laying and doing nothing toward the end, where she was able to get some good reading. The end of test featured a strobe light, which AJ was thrilled with. If she would have had the light going the whole time, he would have been perfect.
When we left, AJ had a huge grin on his face. He crashed in the car, just as I pulled in a drive-thru to get him some lunch. We returned to the clinic to see his neurologist and review his EEG results. AJ slept through the entire appointment, the whole car ride home, and finished his nap in his own bed. I wish I could have slept through the appointment....
AJ was diagnosed with Partial Epilepsy.
Partial because his EEG showed abnormalities on the right side of his brain, not both. Apparently, the abnormalities began almost immediately after the EEG test started. Great.
As his neurologist spoke, AJ's weight (he was sleeping on me) seemed to get heavier and heavier. It was harder to breath. And the tears began. I quickly wiped them, hoping his neuro wouldn't look up. And he did. He has such a kind spirit, his kindness made my tear ducts smile and produce more tears.
While he was typing away, he asked how AJ's language was coming along. More tears. I had asked him via a phone message exactly where AJ's brain injury (CP) was according to the MRI he had done just two months after we brought him home. I asked him for more details as to exactly where everything happened, to which he pulled out this awesome 3-D chart and showed me how my kids brain is messed up.
I was thrilled. To know where the input, output, understand of language and all of that just amazed me. It further led to the never-ending puzzle as to why AJ is not talking. But let save that that for another post and stick to the epilepsy stuff.
AJ's seizure last week (yes, NOW it is regarded as an actual seizure) was the first that we noticed. His neurologist's thought is that per the massive abnormal activity on AJ's EEG, he's had other seizures that have been "clinically silent". His seizures may have been and will mostly be staring off into space, licking his lips, weird tongue movements (I'm thinking lizard like-ewwwwww).
Which made me pause and begin thinking about every single weird thing AJ has done since I've known him.
And then I stopped. Because his neurologist started telling me important things that I needed to pay attention to. Like we are starting him on the anti-seizure medication Keppra and will have Diastat to use in an emergency situation...like if he ever has a seizure that lasts more than 5 minutes.
I left the appointment full of information, exhausted, and started blubbering as I was carrying my newly epileptic baby out of the clinic. I put AJ in the car and bawled all the way home. By the time I got home I was able to make phone calls without crying, which is my usual pattern, by the way. Freak out, cry, cry, cry some more, snap out of it and move on to the fact, talk about other things, collapse in exhaustion. I spoke to a new friend, who is very familiar with seizures, etc. Our conversation calmed me and turned my attention to other things other than the fact my kid was just diagnosed with yet another "thing". My Mom brought dinner over for Jer and I and stayed with me until it was time for me to crawl in bed. Thanks Mom!
AJ's school staff was absolutely wonderful this morning. When I walked in this greeted me with a "Mommy Hug" and we chatted about anything specific I wanted them to do. My directions: proceed as usual. Of course I talked to the school nurse, filled out required paperwork, gave her AJ's new emergency medication and spent most of the morning on the phone, but that all comes with the territory and I was not afraid of it. I had already spent too many seconds in the neuro's office trying to analyze every weird thing AJ has ever done. Was it a seizure? I don't know. And I can't care. I just can't. Because I can't change it.
I was (somehow) smart enough to figure out that AJ was not acting normal in the car last week. That led to us finding out he's a kid that has seizures. Let's treat the seizures with anti-seizure meds and keep an extra eye on him. Not a panicky eye. Just an extra one. Wouldn't that be nice if Mom's came with multiple eyes (in addition to the ones in the back of our heads)??
Today was our first real "regular" day. A normal day in what I've deemed our "crazy normal". I looked forward to getting up, taking AJ to school, having time to myself (which I filled with Starbucks and a bit of retail therapy), picking AJ up, coming home, eating lunch, jetting off to a PT/OT co-treatment, stopping at the store, and coming home. It did my soul some good.
I hope this post does not come across as me stating I am honkey-doorey with my kid having seizures. Because I am not. It is NOT COOL. We don't need any more excitement over here. Trust me. But, what else am I supposed to do? What are we supposed to do?
How does one handle their child being deaf, having cerebral palsy, developmental delays, and now epilepsy, and muddling through her husband being diagnosed with MS? I don't know. How do I begin to digest whats happening with Jeremy while I need to support him and at the same time I need his support with whats going on with AJ? How do I feel about losing my sitter because she accepted an awesome nursing position? Devastated and ecstatic at the same time. How do I feel about trying to sell our house in this market with everything else going on? Freaked out, but I know it must be done. How am I dealing with all this? I have no idea. But I'm about to find out.
While on the phone last night, I realized that while I have tried to cut a lot of time-wasters from my life, all of the issues in our life have become time-wasters. I'm afraid of so many things I've lost count. Afraid and full of fear that more things will keep happening. And while I've been struggling with this, yesterday happened. More bad things. But bad things don't mean I stop living. Bad things put you into a survival mode. I think I've been in survival mode way too long. I need to live, not just survive. We as a family need to live, not just survive. I haven't figured out how, but its on my list of things I'm determined to do.
I'm so worried about what might happen I'm not living in the NOW. AJ's here now, and I'm so blessed to be his mother. This morning his smiles and giggles all the way to school gave me such joy. Despite all of his challenges in his short life so far, he continues to be my smiling, giggling, handsome litle man. I'm wasting time. Everything seemed to be clearer and more vibrant today (it reminded me of the Twilight book Breaking Dawn when Bella wakes up as a vampire and describes how everything is so clear and crisp). I noticed things I hadn't before and appreciated those in my life so much more. It felt a little weird, but I welcomed the fresh outlook. While I was in a craft store, they played the song "Cherish" by Kool & The Gang. While I would normally call the song cheesy and giggle that it was on, the lyrics spoke to me.
And then I read the most recent post on No Peas which ended with this quote:
There is no time other than now. We are not, contrary to what we think, "going" anywhere. It will never be more rich in some other moment than in this one. Although we may imagine that some future moment will be more pleasant, or less, than this one, we can't really know. But whatever the future brings, it will not be what you expect, or what you think, and when it comes, it will be NOW too. It too will be a moment that can be very easily missed, just as easily missed as this one.
Right now, I'm going to bed.