Friday, January 18, 2013

Nope, not yet


"No, I’m not over “it” and here’s why; “IT” is not over! My days revolve around “it”."

-- Ain’t No Roller Coaster



About two months after Trevor's surgery we had someone sit in our living room and tell us that she and others felt we were failing them. That we weren't investing/doing enough for a particular project.  That we were in a leadership role and were failing miserably.  She shared how they were growing bitter with us because of our inability to effectively lead.  When we brought up the fact that our son had just had almost the entire left side of his brain removed, and this after he’d already lived over two years with hundreds of daily seizures…



Her response was, "but he's better now! I mean, it's been over two months!"



Quite frankly, it's a miracle I didn't cause her bodily harm that night. I was beyond hurt. Beyond angry. Those kind of words have a way of sticking around.  Messing with your mind.  Messing with your heart.  Haunting you, without invitation.



And certainly my relationship with her would never be the same.  We were never really friends.  But we attended church together.  It took me a long time to give myself the liberty to defriend her on FaceBook.  It was literally this week that I finally did the deed.  The whole “what would Jesus do” thing throws me for an emotional loop at times.  I have this passion for growing into a woman of Grace.  But then I thought Jesus was pretty selective with who He invited into his inner circle. 



I’ve thought about that conversation over the last three years.



Every time Trevor has a seizure I scream in my mind, “STILL NOT OVER IT!” 



When the exhaustion of managing Trevor’s behavioral, therapeutic, medical, personal care (because pretty much the only thing he can do for himself is put his coat on and that is only successful when highly motivated) and just being a little kid that needs to be loved, accepted and cared for knocks me on my butt…I rage, “NOT YET!”



The fact's THREE years post surgery and I'm still not "over it". It's FIVE years since his initial diagnosis of catastrophic epilepsy...and we're not "fine".



On occasion I’ve thought about writing my thoughts in post.  But either I’m too tired to try.  Because not only am I NOT over it yet…Trevor’s care requires more energy than ever.  Or when I do try it sounds too bitter.  Or my message falls flat.



This morning I stumbled on an amazing post by another special needs mom that spoke my heart for those that have said or have treated us like we should "be over it".  Go.  Read her words.  Hear them in my voice.  Because she expressed exactly what I’ve felt and never been able to express with words…





GB's Mom said...

Prayers & hugs.

kristi said...

Wow. People never cease to amaze me. It sounds like my mother in law saying "By the time TC is 12, he will be fine. His autism won't be an issue." REALLY ??? Should it be so easy???

happy's mommy said...

Thanks, girls!



Tatum said...

Hi Danielle, Your blog is beautifully done. Trevy is amazing. You're definitely getting added to my Google Reader list. I've learned so much in just an initial look at your site.
Thank you for the reference to my post. I especially appreciated your comments about not wanting to come off as bitter. When I wrote the post, I impulsively hit send even though I feared it would be uncomfortable for some to read. For my very small blog, it quickly went viral and that's how I knew that, while the feeling of not being "over it" may sound bitter to those that don't live it, it's reality for those of us that do. My mom, who had her own special needs and medically fragile child, is being treated for PTSD 38 years later. 38 years later; her son has his own home and family, and she's still "not over it". I look forward to following your family's story.

Barbara TherExtras said...

Parent PTSD can absolutely be sourced to a NICU experience. The medical community is not consistent with helping parents through this experience, not that the mere fact of prematurity and separation from a newborn baby isn't enough to emotionally traumatize a parent.

Processing and healing from emotional trauma is personal and individual in manner and timing. I would say that comment 2 months after Trevvy's surgery was entirely insensitive, and that 3 years to express and dispense with your emotions over the comment is, high time. Good for you. Good for us all to have the internet as a medium for sharing the high times as well as the low ones. Love.

Lyndylou said...

You just never get over it! I am 15 years down the road and I have slowly eased these kinds of people out of my life. Like you, I find it hard to be merciless and just cut them out but I do eventually get there. Keep smiling :)

happy's mommy said...

@Tatum...thank you SO much for sharing your heart. I've felt so emotionally wasted this past year that just finding the extra energy to put my heart into words has been difficult. And then I found your post and I didn't need to!

@Barbara...I always love and appreciate your input. XO

@Lyndylou...and then I wonder what the heck took me SO long to ease them out!

Thank you all for listening. I think just the idea of having a supportive sounding boards helps me cope. The first few years with Trevor were such a blur with all the seizures and then the surgery...I think my emotions are just finally starting to catch up with me.