I used to be good at spilling the guts of life.
Like, really good. I could make random strangers cry in a single post. And heart connect. To the point that they wanted to just jump right through the computer screen to wrap our family up in giant cyber hugs. Because that wasn’t possibly, they would send me lovely comforting emails instead.
I think I lost my mo-jo.
Somewhere along the last three years, I stopped sharing the guts. And started withdrawing. Curling up inside myself. Wrapping around the sad and difficult moments like a secret that I was desperate not to let escape. Rather than spilling my guts, I found myself sucking it up and gutting through the rough patches. Clinging to my husband, my Faith and the deep belief that Providence has pre-planned all of this mess. That I am not alone. And it’s not all pointless. As naïve and simpleton as that might sound, I still believe.
I think in a way I’ve felt like I have no right to complain anymore. Trevor had his miracle and I lost any griper rights. I feel a responsibility to embrace the joys. For the sake of those contemplating surgery. For the sake of those whose children are yet saturated with seizures. There is JOY. Oh is there joy!
But joy is not the synonymous with easy or pain free.
And things these past few months have been hard. Really really hard.
Life outside of being Trevy’s mom has been draining with it’s own stresses and challenges. But I’m talking specifically about things with Trevor.
His mood and behavior have been off the hook.
Part of Trevy’s charm is that even in the midst of saturating seizures…he’s always been happy. Sweet and happy.
As he gained cognitive ground over the last few years his personality has expanded. We’ve seen cheeky added to the sweet and happy. Stubborn. Opinionated. Oh so silly. But the overwhelming theme was happy.
And then one day he wasn’t any more.
For months he’s been miserable. Angry. Violent in his anger. Targeting at first inanimate objects like the wall or the table. Then the dog. And it didn’t take long for his sister, brother and eventually adults in his life to feel his wrath.
He hated Special Olympics with a passion.
He started screaming at therapists. Telling them to leave and go away.
He went from averaging 5ish behaviors during his 3 hour ABA sessions to over 50. Some of these behaviors included turning over a table and throwing a chair. Never mind the screaming, kicking, hitting and property destruction.
He bit Toby and then me so hard that he broke skin.
He has been mean and angry and not even close to happy.
I can’t explain the deepness of heartache that I have felt watching him change. More than the sadness was the fear. The death gripping fear around my heart. Because if this was him at five…
I tried to manage it. We’ve been using various techniques and methods. Visual schedules up the ying yang. Consequence cards. Time outs. When I could muster the energy, I pulled out every parenting tool I’ve gathered over the last 11 years that I’ve been a mommy. But honestly, for the first time ever I found myself thinking that I could understand why some parents choose to admit their children into residential programs. And as soon as that thought flitted through my little head…I was eaten to the core by guilt that I could even allow the thought to fully develop.
Even in the midst of all this cranky business, one thing that he continued to enjoy was snuggling up in his bed and reading books. It was about the only time that he was happy. He’d lay with his binky and blanky and all would be peaceful for a few minutes. One day, as we were cuddled together in his tent, all the emotions I’d been holding inside caught up with me. And I wept. Not loud gasping sobs. But the tears just flowed and flowed silently down my face. My heart was SO sad. SO heavy and sad and scared. I didn’t even think to hide my tears from him. He had never noticed others emotions before. But that day he noticed mine. He patted my arm and muttered around his binky for me to “stop”. Which only induced the opposite. He began demanding that I “stop trying”. Trying in Trevy Speak = crying. Even after years of speech therapy his “c” sounds like “t”. I don’t know what over came me, but I grabbed him up in a bear hug and blurted, “Trevy, I just want you to be happy”. His little face was wet with my tears and he was struggling to de-hug himself from me. But he smiled a great big cheesy grin behind that silly binky and said, “I happy”. Talk about water works. That’s when the loud sobs started.
In the meantime, I’d placed a crazy woman call to his neuro begging her to check his med levels. Even though I wasn’t seeing any seizure activity I know that subclinical activity can be linked to cranky behavior. His Developmental Pedi recently confirmed it by saying, “cranky brain equals cranky kid”. And sure enough, we discovered that his Trileptal was low. So we adjusted it up and the behavior diminished over night. Hard to not believe there was some unseen seizure business happening. Now, I’m not saying he was angelic. He was still cheeky. But not angry. I can handle cheeky. I’ve always been a sucker for the cheeky kids.
We enjoyed a couple weeks of much better behavior before getting whammo-ed by the tummy bug.
Ever since then, his behavior is on the rocks again.
Not anywhere near as nasty as it was pre med bump. But somehow my heart is still on edge. That stretch was so very scary and intense that the thought of another round of that mess makes me feel queasy. It doesn’t help that I’m actually seeing little clusters of myoclonic jerks and left eye blinks. I just called in another lab request.
Oh…and in between all this jazz we had his annual Developmental Pedi appointment. Dr. Neuro recommended that we fill out the ADHD questionnaire too. She actually prescribed Ritalin because she’s convinced some of the behaviors are connected to his lack of impulse control. If nothing else, his inability to stick with a task for more than 60 seconds in a row is. But she gently guided us towards working with Dr. Development on the ADHD front because she’s closer to home. And she felt it would be easier for all of us.
Dr. Development informs me that she’s THE most conservative doctor in our state when it comes to dispensing meds for ADHD. I told her I was totally cool with that. In fact, everything in me would rather avoid meds. Lord knows, I’m sick to death of meds. I was hoping she’d have other treatment options. So his special educator and I each filled out the forms and mailed them back to her. A few days later she calls me while I’m cooking dinner and asks if I have a moment. I said so long as she didn’t mind the racket in the background. I LOVE our Developmental Pedi. She’s wicked down to earth and is in absolute awe of Trevy. It’s so nice to have someone who is fascinated by the fact that he can even walk! Never mind all the other wonderful growth he’s had over the last three years. Anyway…THE most conservative ADHD med dispenser in our state essentially says…
This boy shoulda been on meds yesterday!
So it looks like we’re starting Ritalin this weekend. Super low dose. If we see any side effects we’re to stop immediately.
Always with the meds.
Meds for seizures.
Meds to control the side effects for the meds to control the seizures.
Meds for the focus.
Meds for this…
Meds for that…
Sometimes it’s all just too exhausting. Which is why it’s easier to curl up inside myself and wish it all away. Rather than share it here. Where only bits and pieces of the story are ever really told. Because it’s impossible to share it all. But then…sometimes journaling is therapeutic. Or so I’ve heard…