I feel weightless. Floating in some far off, not conscious, place. “Mom…” I vaguely hear the small voice. I can’t tell if it’s a dream or real. I don’t have the energy to open my eyes. I drift once again into the unconscious. “Mom…” this time my senses awake quicker. I know it’s real. I struggle to separate my eyelids. My body is refusing to corporate. I blink them open just long enough to see the silhouette of his head in front of me. I blink a couple more times and then I feel my body shaking. I realize he has put his hand on my arm and has started pushing me. “Yea baby…..what’s up?” I say as I WILL myself to sit up. “I’m hungry….” I look at the clock. 2:43am. It’s been 2 weeks he has woken up saying he is hungry. I fight my natural instinct to be a HUGE whiny baby myself and tried speaking politely and calmly. “Buddy….it’s not time to eat.” I feel as though these words are on repeat. “How about you go lay down and I will check on you in a little bit?” “No mom…I’m hungry.” I can feel him getting angry. “Baby, is that why you are awake? Do you feel ok? Did you have a bad dream?” He looks away as if trying to figure it out. “No I’m just hungry.” He looks back at me with those sweet little eyes and I just can’t help but talk myself off a ledge. In an instant my mind went back 3 years ago when he first started getting insomnia. It was the beginning of EVERYTHING. He had insomnia for 6 months before the headaches came. I remember the stress of everything then. Taking Ayden to school after being up with him for 2 hours in the night….every night. It was a very hard 6 months. I told myself it had only been 2 weeks….thats too soon to know if this is insomnia or something else. A couple more days went by with the same routine of him getting up in the middle of the night. I would finally put him in bed with Jake and I. He would toss and turn for about an hour. Then when I would think he was sleeping he would roll over to face me and say “Mom…..i’m still hungry.” I would pretend to be sleeping. “Mom….are you awake? I said I’m still hungry.”
For the past 4 weeks he has either gotten up in the middle of the night or simply not gone to sleep until 12am. He would keep getting out of bed to tell me something scared him, or he was hungry or he just wasn’t tired and I should let him play. The exhaustion had kicked in and I found myself showing up to the school looking like a zombie. Feeling like a zombie. Worrying about how he is feeling throughout the day. Wondering how his emotions are doing. It wasn’t until last night that I started to get concerned. His mood was off….not the regular I’m tired and 5, it was different… it was tumor. There is something that goes off in a moms gut and she just knows. The other day I was driving home with my boys asking about their day. Ayden was chipper as ever telling me EVERYTHING he had learned!! Zayne however was slightly somber and just not himself. “Zayner? You ok bud?” “MOM…..yes….I’M FINE.” Whenever he isn’t feeling good or not feeling himself his tell tale sign is anger. Anger at everything. You can’t talk to him, you didn’t make his dinner right, you didn’t read the book right or play the game right. Nothing is done as HE needs it to be done. By the time 7:30 rolled around I sat down with him and asked him if he was feeling ok again. “MOM….” He said annoyed. “I just don’t feel ok…I just don’t…..it’s just a rotten day.” I kissed him on the forehead, of course getting yelled at for it, and walked out of the room knowing I could no longer ignore the buttons going off in my head. He was never like this. I know that kids change as they get older but this was different. When he was a baby, he was fat and happy. In fact, not much rocked his world. Nothing had to be done a certain way, or done at all. If he was full he was happy. I go back to those sleepless nights of insomnia. After a month or so I was baffled as to what was going on. Was I not being strict enough about staying in bed? Did I need to start giving consequences to reinforce my point? I remember calling my cousin and telling her of his behavior changes. Everyone gave me their advice of how to handle it. Time-outs, take TV away, no play-time. And as I talked to her I knew. I said “There is something in me that says he’s just not right. I don’t know what that means…but I can tell you this isn’t even my boy. This isn’t even who I know him to be.” And coming back to the present I have a lot of the same feelings. I have worn myself out these days trying to figure out if he has a slight headache, or if his tummy was upset, or if he just didn’t feel like Zayne. That kid powers through so much it’s hard to label it.
Well just last week Jake and I have been keeping a pretty close eye on him. He has been running into walls in our house, falling down the last few steps, and down right off. The other night was family movie night and Zayne usually sits at the foot of our bed and watches the 64 inch TV from there. Out of nowhere he said “Dad, I can’t see what is on the TV.” Jake paused the movie on a scene with just a cat on the screen. “What is that buddy?” Zayne did his usual routine of turning his head to the perfect spot to see. “I don’t know…” Jake and I did a couple tests with our fingers and different objects in the room. He had a lot harder time than he ever has. I contacted the TX doctors and they told us to come as soon as possible.
Zayne and I will be flying down on November 9th. He will get an MRI and an eye exam on the 10th. We will meet with the doctor on the 12th. I know this is a lot of news at once but I just had to update and wake up the Z Army. You all have been so amazing…I am hoping for answers. I am hoping for something. A friend of mine was praying for Zayne the other day and she said God told her He sees Zayne. Funny something as small as knowing God sees my boy brought me to tears. I guess I have advocated for Zayne for so long I felt like I still had to be the go between with him and God. But I don’t. I’d forgotten that God does see him. God knows. God knows what lies ahead of us in TX. He knows all the struggles my boy goes through. It was a nice reminder. So Tuesday is the day. We will once again wear the Z shirt as we courageously walk into the unknown.