I love my children, and I love my life, but….sometimes I want to just turn it off.
Yesterday and today have just been those type of days, the days where I absolutely hate Prader-Willi Syndrome and Autism.I don’t ever think less of my child, or feel anger towards him, just anger towards his chromosomes, or those that are missing.I don’t feel pity for myself, I don’t feel like a victim, I just would like a few seconds to catch my breath now and again.
I am in a very interesting head space this week. I believe some things shifted loose inside during my teacher training this past weekend. I found myself in a very quiet and introspective place all week. I am normally very chatty(those who know me can tell you that talking is an art form for me, ha) not this week. I didn’t want to talk to anybody, no I don’t feel sad, just feel quiet, inside and out. This is definitely a new feeling for me.
On Saturday morning as I entered my teacher training I could feel the tinnitus(ringing in my ears)starting, by the end of the day it was going full force. As the days pass the ringing has gotten so bad that I am completely deaf in my left ear, and have a headache from the constant noise that plays out in my head with no relief. This is what my sister has as well, she has been a source of comfort because she feels the same maddening noise that I do in her head. The noise has caused me to be a bit on edge and feeling a bit not like myself. I am not feeling like my best self physically, in turn not feeling my best self emotionally. If you combine all these things it adds up to me just needing some down time, and that is not in the play book.
This past week Blaise was out of school, this already causes his behavior to go haywire. This week the PWS monster reared its ugly head again, and it was worse than ever. Between increased and aggressive food seeking and emotional meltdowns in public and at home, I am ready for a time out myself. Today I was desperate for a nap, really desperate, and it wasn’t going to happen. Blaise wasn’t going to nap and that meant no rest for me. I talked to a friend of mine today who told me she fell asleep on the sofa and her daughter played by herself quietly in the room. This is so far from reality for me. Tonight I turned my back for one second and Blaise was already in the kitchen with his hands reaching for a hot pan on the stove. It’s not his fault, it is physiological drive to eat, it can just be so challenging sometimes. Lately it wasn’t the food, it was the meltdowns that got us, not the tables have turned and we are back to dealing with crying for food, looking for food, and stealing food.
I really struggle with ever admitting that sometimes it is just so hard to have a child with PWS. I feel tremendous guilt for ever feeling bad because he is the one who suffers, he is the one in pain. I am starting to realize that it is okay to be honest and say, yes I am human, and yes, I need a break too. I don’t need to get away for a week or fly to an exotic land. I literally just need a moment to gather myself and my thoughts.
I wish there was a way to explain it to the world. I have many friends who have “typical” children and they have so much empathy and compassion and have been a blessing to me through it all. I still feel it can be really challenging to ever truly understand what it is like to have a child with special needs, a medical condition, or a terminal condition. You are “ON” all the time. Even in your sleep you are waiting to hear a monitor beep, footsteps down the hall towards the kitchen, or to make sure your child is still breathing. There are no moments where your children play quietly and you sit and drink a cup of coffee, you are always on the ready for a crisis at any moment in time. This cycle can be truly exhausting for your body and mind. I am slowly coming to a place in my life where I am asking for the time I need to come back to my center, so that I can be the best mom and the best “Rachel.”
The struggle comes from being a dedicated mother to a child that requires a lot, and understanding your own wants and needs are critical to living a full and happy life. This is much of what I thought about this week. As I begin this journey of my yoga teacher training I am coming into a stronger sense of self and self awareness. I believe this process is going to help give me an even greater understanding of what it will take from me to continue to function as the mom of a child with special needs.
I just remembered that I got a package in the mail today. I stopped writing to go and get it from the mailbox. What a great reminder to think of somebody other than myself. My KONY 2012 package came in the mail. Yes!!!!