With my leave of absence being approved by the school board, I’m able to focus on Carter so much more than ever before. I have the time, energy, and clarity to do anything and everything I can for him. Since August, I have dedicated myself to his progress and spent countless hours cooking, experimenting, reading, researching, and driving him to therapies. I get exhausted. This is an exhausting job. Diving head first into the world of Autism has definitely started to take its toll on me. I eat, sleep, breathe, and see Autism. All day, everyday. It’s lonely. It’s time consuming. It’s scary. It’s tiring. It’s confusing. It’s defeating at times. It’s painful, too. Both emotionally and physically.
My head hurts. My head hurts from the long hours on the computer reading, opening new tabs, and reading more. One thing leads to another. Down another rabbit hole I go. Who knows if I’ll ever be found. I’m not even sure I want to come up for air half the time. I’m so tired, but I can’t sleep.
My eyes hurt. My eyes hurt from going from the computer to the newest Autism book I purchased, even though I haven’t finished the last. I squint to read line after line with the flashlight on my phone at midnight, because I just can’t rest. My eyes hurts because I force them to stay open. Just 10 more minutes.
My brain hurts. My brain hurts from receiving so much information. I’m trying to store it and remember it all, but I can’t. There’s too much. Genetics and SNPs, detoxing and pathways, diet and nutrition, gut microbiomes and other detox organs, heavy metals and toxins, supplements and immune support. It’s all so much!
My back hurts. My back hurts from sitting hunched over my computer watching the latest video from Dr. Lynch about MTHFR. It hurts from slumping over printouts regarding the analysis of the methylation pathway. It hurts from standing over the stove and the sink cooking and cleaning.
Most of all my heart hurts. My heart hurts because my Carter has to work so hard to achieve even the smallest of goals. They are big to us, of course, but it still requires so much work. My heart hurts because I can’t take all of his struggles and hardships away. It hurts because I want to see him experience every little thing. I want him to succeed with less effort. My heart hurts because I think about things that have been missed with Carter. Things that we’ll never experience because that time is long gone.
No “first word” as a baby. No ugly, but beautiful family drawing on the refrigerator. No tee-ball game to attend. No letter to Santa Claus with a mile long Christmas list. No birthday party excitement. I could write a whole book about this. The Book of No. That would be one depressing book.
But instead of traveling to the darkness, like I’ve done so many times before, I’ll go the other way. I’ll tell you about the part of my heart that doesn’t feel pain. I want this part to be the biggest part. The part that feels nothing but love. The part that beats the most. It beats for Carter. It beats with motivation. It beats with determination. When I feel like I just can’t anymore and my heartbeat starts to fade, I think about him. How far he’s come. How much he needs me. I think of his hand in mine. I can’t let him down. I can’t give up. I’m Rocky. I close my eyes, breathe and focus on the beating. Each beat is a struggle met by my relentless persistence. As I build up my strength and courage, my beats get stronger. Louder. I can feel the beats in the pit of my stomach. It’s my maternal instinct to take care of my child. It’s my duty. But it’s not just an obligation. It’s a pleasure. It’s an honor. I’m able to help my child get through as many obstacles as we can. Together. Jumping over each hurdle, no matter how many there may be. I’m not willing to accept things as is for him. I’m willing to sacrifice and give up my wants and needs for him. I’ll do anything for him to have a better life.
My eyes hurt now because my tears sting them. I fight them back most of the time and sometimes I just let them go. The lump in my throat burns as I try to force it down. I think about Carter and my heart feels full. So full it could burst. It’s full of love and pride. Carter works hard. He’s happy. He’s succeeding. I can’t focus on the negative, because there’s too much positive around us. I’m so grateful to the support Carter has. I’m so grateful to our family and friends, to the therapists, the doctors, and even the strangers who just make things a little easier. Sometimes my tears are simply happy tears.
So, you see, even though I’m exhausted and totally over this Autism journey, I can’t stop. Can’t stop, won’t stop. I’m Carter’s voice. But, not for long because he’s finding his own voice! So many exciting things have been happening and I can’t wait to share them with you all. All twenty of you who read this blog (that’s an increase!).