Tuesday, September 23, 2014

Just...exhausted.


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.

Monday, September 1, 2014

Healthy and Happy Harvest

This is a few weeks late, but here goes....
Happy September 1st Everyone!
 A new month, a new season getting ready to honor us with its glory....an school has started!
This past week has been crazy busy with getting a routine down with new schools and new sleep schedules! After a summer of staying up and waking up even later...this whole school schedule has been really put through the test!
But I think it's finally coming together! Here is the annual first day of school picture. The first year, ever that the kids aren't dawning crisp white, blue or brown uniforms. It's public school for this bunch (followed by PSR classes). There are likes and dislikes to this year, but I'm sure we'll all get used to our new routine.
As the kids are at school, I've taken a day to can pickles!  
Decorating for fall is exactly what i invisioned this house to look like! there is still so much i would love to do, but life is hectic and i have to step back and decide from wants and needs. I've also finally found a place for my SpookyTown village that I've been collecting for years, with no place to set it up! Woot woot for fall and halloween...and especially this new amazing house








Saturday, August 23, 2014

A NICU reunion

Its been over seven years since Kenny spent 129 days in the NICU...sure, he's been hospitalized several thousand times since, but to spend a few hours with these wonderful doctors and nurses that have taken special care of our little guy...who basically kept him alive...after all these years, I am so grateful to them. Even after all these years, I basically consider them family! They loved Kenny (and Nick) so much, they cared for him...kept his little lungs breathing, saved him from numerous infections and fed him when I couldn't....I am forever and deeply grateful.
So.much.fun!
 
Gina was in Heaven with a Nertle Turtle aka: Teenage Mutant Ninja Turtles
 
 
 This is one of Kenny's old nurses...
 Kenny holding up a preemie diaper...which btw...was HUGE on him!
 Mommy and Kenny (don't look so thrilled Ken...haahaaahaa)
 crafts!
 the welcome table...
 
 
 decorating cupcakes!
 
 
 props for the photo booth
 Kenny and Dr.Collin
So thank you again MetroHealth Medical Center and all the wonderful doctors and nurses...for everything you've done and continue to do for Kenny and our family!  
Cant wait for next years reunion!!!

Tuesday, July 29, 2014

Mid Summer fun!

As we get settled into our home this summer, not too much has been happening in terms of sickness or issues with Kenny (thank God). We've been trying to keep the summer going with a trip to Alabama to see family and the home days for our new city...which just so happen to be right at the end of the street of ours...literally...in our side yard.
Here is my hubby and our nephew who owns a Kettle Corn/chocolate factory...
 The four younger kids going on rides...
 Kenny and Kay...
 Kenny was a little scared at first, but then enjoyed the ride...
 Kenny and Gina. Believe it or not, this ride went fast! Poor Kenny held Gina's arm the whole ride!
 The fun house is always fun...
 ok...another one of Kenny's favorites that went a little bit too fast for him...he was holding onto Gina for dear life!
 
 Kenny and his Grandpa...unbeknown to eachother...put on the same type of shirt for the day.
So that was the fun filled Home Days, since then, we have been visiting cousins and making the most of the rain we've been getting and welcoming home my nephew who came home on leave from the Army...
Here is my oldest getting ready to go on the makeshift slip & slide...
 the little ones even got in on the action...
 
 They all thought it would help with the sliding...garbage bags with dish soap on them... 
 haahaa...maybe this should be Pintrested under "fun times in the rain...or in the hills ;) )
We all had a really fun time. Great food and lots of laughs..its always fun with our family!
 
And finally, I've been working really hard on the gardens...veggie and flower...around the house. Believe it or not, after 19 years of trying my hardest to grow zucchini at our old house, I am finally growing them here at our new house!!! I am beyond ecstatic!
 
We are going to be having more tomatoes than we'll know what to do with...yummmmmy...
 
 Our broccoli has small heads on them...woot woot!
 The cabbage as well...we started to have a little issue with bugs and critters eating them...but with some pest control spray and some netting...I think were good... 
 
 
 our brussel sprouts have teenie tiny brussel sprouts emerging

...hopefully we'll have a good amount of them for Thanksgiving dinner...
Peppers are growing...
we'll have an over abundant amount of tomatoes of all kinds...
all the cool weather crops are really starting to take off...
 some flowers from the front yard. Forget-me-nots and purple daisies...
 

 the front yard perennials are really starting to fill out...
 
 
 And for todays harvest...our first crop of beans and come gourmet cucumbers along with regular salad ones...
 
I've always loved to garden...thanks to my Grandpa and my dad. So to teach my kids how to get their hands dirty and to reap the benefits of the hard work of planting...seeing their eyes when they come running in the house with a cucumber or tomato, really makes me smile. Life is good.