...describes my soul as well as the weather. (The weather isn't helping.) I am exhausted, the last several months have finally caught up with me. Isaac is still out of work and we've all been sick a lot. Joel has been difficult. I have been HOPING that what I have been seeing is not seizures...but when Joel's therapists started noticing, I knew that it's not just my imagination. Both therapists have seen possible seizures, the first time I didn't see it and his OT told me about it, but yesterday I saw it along with Joel's speech therapist. The three of us were sitting at a table playing and all of a sudden he looked in my direction but his eyes didn't focus. He started saying "papa, papa" in a whimpering voice (which could be him asking for his grandpa or pacifier - he calls it "baba" which sounds a lot like papa.) His little face looked so scared, terrified, and his eyes were twitching a little bit and just not focusing. It seemed as if he was looking for me but couldn't see me. He was shaking a little and looked really weak. I knew something was wrong and couldn't help but gather him into my arms. In retrospect, I think the asking for "papa" was because he was scared. He feels safe with "papa", whether it's grandpa or pacifier.
I have seen several instances similar to this one each month since about January. I have been hoping beyond hope that it was just a one time thing each time because the thought of traveling the road of seizures again rips my heart from my chest and tears it into tiny pieces. The thoughts of more anti-seizure meds (which make his brain fuzzy, can make him dizzy, and we've been told they have only a 2-3% chance of working since they didn't work last time), multiple tests (which he is now terrified of due to the pain he experienced during his surgery), frequent doctor visits (which he hates and screams the whole time), and ultimately the very real possibility of needing brain surgery again takes away my breath...like someone punched me in the stomach. I feel like I am in a daze. It is striking me once again that I have a "special needs" child and that will never change. Tuberous Sclerosis is something Joel will live with the REST of his life. He will have good years (hopefully) and bad years...good months and bad months. We have been very blessed to have a good year-and-a-half. I realize that and am VERY thankful for it. But I don't know where I am going to get the energy to fight for him again. He is older now, stronger, and much more aware which only makes things more difficult...emotionally and physically. The feelings I felt today could only be understood by a parent of a special needs child. It is impossible to understand unless you've been there. I know I tried to understand before I had Joel and now I know that it is impossible due to the experience I've had. I really appreciate those of you who try to understand, though...and will do my best to communicate my feelings throughout the blog. Today I have been struggling to let go of my hopes that Joel's seizures would never come back, I have always known it was a possibility, but have had to hold onto the hope to survive. I now have to adjust to a new reality. Joel was already scheduled for his bi-annual check-up with his neurologist on Monday. Can we say "God's timing!" Please pray for everyone involved. My heart hurts for my little guy.
Good night, sleep tight and I will keep you updated. Thank you for being here, my friends.
Above: Joel with his Occupational Therapist (OT) ~ Below: Joel with his Speech Therapist
