Yesterday we celebrated a HUGE day for our family. It was one that stayed in my mind and my heart all day. When you are a parent of a child with special needs, some anniversaries are engraved in your memory: diagnosis day, big milestones post diagnosis, big surgery dates, and for us...the date we evicted a certain monster out of our house. I wanted to shout it from the roof top. Take an ad out in the paper. Heck, take an ad out in a major magazine! Make a commercial. You name it. Instead, I put a cryptic status update on FB when I got home from the gym last night:
"So today was kind of a HUGE day for our family. I hesitated to mention it because I know so many families that long for a day like today. I know the sting of that feeling. And I know that days like today can vanish at any time. But, my boy (not me) deserves the recognition. So...today was a HUGE day. Enough said. ;)".
I didn't want to rub it in anyone's face. We know so many that are battling that jerk still. I still know the sting of the longing for seizure freedom. I didn't want it to appear that our life is perfect. I know that he could creep back into our door at any moment. We cautiously look over everything C-monkey does at all times. Could that be a seizure? What was that?? The craziest little movements could be seizures!! We are still on high alert. Yes, the monster is away, but the effects of his 5.5 years with us are still lingering. C-monkey is still very significantly delayed, but he has really come so far in the past year without the jerk.
That was C-Monkey on Easter 2012, four days before his surgery. That was a face we were so used to seeing for the preceding few months. So tired. So vacant in some ways. His days consumed with limiting seizures. His sweet laugh g-o-n-e. It was that child that challenged us to make the hardest decision we would ever make as parents. He desperately needed help.
Dr. Neuro & Dr. Neurosurgeon stressed to us this surgery would not stop his seizures. It would reduce his seizures. Hopefully reduce them and focalize them so that we could do another surgery down the road that would potentially stop his seizures, and give him more quality to his life. We had our hopes dashed with every med we trialed. Every alternative treatment. We had come to know failure. We weren't expecting much. That's not our luck. We just hoped for sporadic days of no seizures or only a few. Few enough to give his brain a break. On April 30th, he had a couple of seizures. He had been having a few every now and again starting the day after his surgery. We knew that was what was likely to happen. It was still better than what we were used to. On May 1, 2012 we noticed he didn't have ANY seizures all day. On May 2nd...still no seizures. A week went by, no seizures. Eleven days went by..no seizures. A month turned into three months. Six months went by...no seizures. Baby bug was born. I figured it would be THEN that the good luck would end. God was just giving me a break while I was pregnant, right? I at least deserved a break then. Six months turned into 9 months. And then...we celebrated (quietly) ONE monumental year. No seizures!
This was C-monkey on Easter 2013. What an incredible difference a year makes!! He laughs his head off. He is so attentive to others. He's more focused. He has learned new skills. He walks without the balance issues that plagued him before. He's so incredibly loving. His teacher sent me a text yesterday bragging that C-monkey has an older girl in his class that he "helps". When she is in her walker, he gently pushes her along from behind. He also loves to push this little girl's wheelchair to the bus. I think it is because he has been pushing Baby bug's stroller when we go places to help with his sensory issues so he is assuming his Big brother role at school too because we praise him so much for it at home.
All of that makes THIS image that is forever burned into my heart and soul so very worth it. I pray this streak continues. I pray that the few challenges that C-monkey has had as a result from the surgery improve with time.
So, we celebrate the year (quietly still, as to not awaken the monster) and hope for more years of this sweet boy thriving. We will never forget our years with the monster, but we would like to make so many more memories WITHOUT him!
