Hi, I am Michele... a mom who is more than just a mom to many kids...I am also a caregiver to a child that has needs beyond the normal, healthy child. I am also a human being that is tired. The checklist says it all.
This has been a very interesting and emotional start to fall. So far, I've had outpatient surgery...and have been very emotional about that whole thing...I really don't want to get into the specifics about it...just that...getting older sucks and I have a lot of healing...emotionally to do. Kenny had been back and forth to his therapy appts, doc appts, and school...some of which are going great, physical therapy for instance, he is exceeding what I though he'd be doing. He tries everything they give him to do...and follows directions quite well. He love jumping on the trampoline, kicking the soccer ball into the net and standing on a cushion while reaching, catching and throwing things. He needs a little bit more help on his floppy muscle tone in his legs...so he can learn to ride a tricycle...but other than he's doing great. Some other appointments...not so great. He is not gaining...he actually lost some weight. He is starting to not want his backpack on for his tube feeds, so there is some defying that is taking place. Our next step is to find a high chair that can hold a 4 year old for his feeds...yes, we are reverting back to the old ways of when he first got his tube in...he will be sitting for an hour while the feedings take place.
We also have been denied for the 3rd time for his hearing aids. Its been since May that he lost his one hearing aid in his little autism tantrum he had in church, at Sydnie's communion. And just a few weeks ago, he came home from school and went right to playing. I thought he unhooked his hearing aid and threw it in his toys...but nope. The next day when he came home from school on the bus, they handed me an envelope with his hearing aid in it...broken. So yeah...trying to get Medicaid to supply a new set of aids to a child with moderate to severe hearing loss has not been easy. We are getting frustrated and told by his teachers/therapists that he really need them...noooooo kidding!
Also, its cold & flu season, and I am besides myself. I am hoping that this season is gentle on Kenny. He is already starting the coughing and throwing up mucus...which is always pleasant. It is a continuous battle of my thoughts when it comes to this time of year. You know...the thoughts that pop into your head and start swirling around like a tornado that doesn't stop...just gets bigger and bigger and picks up steam until you cant sleep for hours on end...yep...thats what is happening. Thoughts of Kenny getting sick, seizures, him losing weight because he doesn't want to eat for me. The possibilities of losing him. Heck, thoughts of all the babies that I've lost. Thoughts of my living children and their lives...should Tony be going to a Catholic High School (that I really want for him) or a public one. Thoughts of Kenny having to go to a public elementary school around the corner from us...and I wouldn't even send my older kids there because its THAT BAD, yet, I'm going to have to send Kenny there...so then I think that we have to move...and the money thoughts pop up.
See what I mean? Like I said, the thought tornado just sort of builds to an F5 from all the grief, sadness, exhaustion and stress....that destroys the whole sleep, functional and emotional state of me. There is no doubt in my mind that I will get through this. I just have to wonder why. Why is it that you do what is supposed to be the right things in life, and nothing goes right. Nothing. I swear, I have a curse bestowed upon me. Its bad enough that I have dealt with the loss of a child, the loss of multiple pregnancies, a child that takes 100% of my time and energy because of his special/chronic needs, a house that is falling apart in front of my eyes, and now teenagers and their ways. And all the while I try to keep a happy demeanor. Being kind, giving and loving to those around me when honestly, all I want to do is scream, break things and hide under the blankets in my bed and never come out again. I know I cant do that, so praying and hoping that God hears my pleas to give me a better life...or at least the ability to deal with what was given to me will have to do for now.