Lining up things, putting everything in bags or containers, shutting cabinets and doors himself, turning on/off every light switch in the house, having to ring the door bell before coming into any house, walking a certain path in the house, having to change his diaper a certain way including how and when I pull his pants up, put his shoes on. Oh, and comb his hair and brush his teeth? Don't even think about it. The tantrums as we walk into a store, we can forget about going to a restaurant to eat...and not being able to understand him because he can't speak words...frustrating for us and probably more so, for him!
There are some things that are out of our hands. The hands that stroked the fine hair on the arms, the hands that cradled to comfort, the hands that dressed, bathed and fed....the hands that prayed for healing. It feels that my hands are tied. When my son was little, everyone helped him...now, he's 7 and doctors turn their heads at my concerns, doctor appts become further and further apart...even the recommendation for a flu vaccination is mentioned as "if you'd like". I'm the one that feels like I'm losing my mind. I'm the one feeling like a bad mom of a child who "may or may not have" special needs. No, its not said, but the actions and the silence of doctors, teachers and those around me...those that are close like family and those that are just acquaintances...tell me otherwise.
The OCD...the everyday repetition of everything...kind of gets to a person. I almost feel that my mind is questioning everything. Is he really special needs? Is it just me that cant handle him and his actions? Maybe I'm just a bad mom. His rituals of repeating everything...maybe...maybe its me and not him? Behavioral specialists, neurologist...everyone puts it onto the back burner. Its just a developmental phase. No...NO ITS NOT. I'm his mom...I know...ITS NOT. Because if its not...then its ME!
See, this mom...the mom of these 8 kids (Nick included), the mom who has been writing this blog detailing my crazy life....this mom who's been through most...not because of bad luck, but because of just the way my life is being played out...this mom...is exhausted.
I can write about how grateful I am that Kenny didn't die years ago. I can write how every day is a blessing...both of which are extremely true...but today I chose to write about how hard life is with a special needs/chronically ill son. Today I'm going to be honest.
Its hard. Its tiring. and its a constant job.
It wrecks havoc on a marriage, on ones friendships, on ones continence...not to mention sleep.
See, I am noticing that some of the issues I have recently experienced with Kenny is what I experienced with my first born...who was born with just a small...small pocket of fluid at 34 weeks with IUGR. Weighing only 4 lbs. 8 oz.
Some of those issues that were never mentioned were things that I blamed myself for were how crazy he got when I had to tuck in his shirt for school...he'd go absolutely crazy that his shirt was balling up...we'd fight all morning and be late for Kindergarten (through 4th grade) because of his shirt, his belt and his socks. Then I'd get the "I'm bored"...beyond what would be consider normal. This is just a sample of what happened 11 years ago...a sample that is starting to look more and more like a flashback as I struggle to get Kenny off to school.
I hate that I now have an out of control teen who is constantly fighting with us and acting out...but I also have my youngest son... who is out of control and constantly fighting with us. I call them my "bookends". I say that with the upmost love for my boys. I love them with my heart and soul...but this mom is done...the bookends have collapsed on top of me and I am feeling the weight of trying to do the right thing, give them the best resources for life, and just trying to be a good mom and human. But see...I am only human and this is killing me.
So please, I don't want to hear how I turned my back on my friends/family, I don't want to hear how I've changed, that its all just his developmental stage and I don't want to hear that I need to chill out a little...I hate being ignored, because sometimes I need to vent. I don't have an easy life...but I also didn't bring this on myself. what was my options...pull the plug on my micro preemie? I am already dealing with guilt for doing it with my angel son, Nick...so I don't want to hear that we are in charge of our own destiny. Those who say that have not been in my shoes. I have changed...I don't like the way I've turned out....and would give anything to have the happy, no worrying, not jealous, happy and crazy Michele back. The Michele that never had to know what a seizure looked like, how to change a g-tube, worry about the next cold or virus that hits our house, or how it feels when I go to the cemetery to visit my son...and see an extra plot sitting there waiting to gobble up my surviving son at any time.
So yeah...This is a bad day for me but I wanted to let everyone know this is not an easy life...a mom to preemies, teenagers, a micro preemie/special need, and an angel. I love my kids to infinity and beyond. I've cried many tears and prayed many prayers...
I am just exhausted.