To start this post off, I have to say that every day we struggle with one thing or another with Kenny but he is and always will be my little superhero. As I've said in previous posts, when the pediatricians look and tell you what COULD happen with your micro preemie...they don't know themselves...for the most part, they are giving you either an extremely horrible outlook (example: vegetative state, never walk, or even death) or they could give it to you sugar coated (oh, he'll catch up by his actual birthdate, he's developmentally DELAYED...but...doesn't that mean...a delay in development...so, he...should catch up. right? In our case, we have a little of both.
But no one told us it would honestly be THIS hard. I mean, I thought we hit that peak of "preemie issues" that were given in that initial list of things that are told to you. I guess people forgot to mention what happens to a micro preemie when they are no longer babies, toddles, preschoolers...but when they are actually in kindergarten or first grade!
I'm not going to sugar coat this post...its very difficult. There, I said it. Sometimes I wish we weren't in this whole "special needs/medically fragile" nightmare. I love Kenny deeply and we have this extremely close bond, him and I, but sometimes I wish I could go back in time and erase my life. From when I noticed Nick not looking the right color in the NICU (the day he passed) to today. My whole mommy hood was consumed by mourning, worrying, caring for a sick little guy, worrying, hospital stays, mourning, and medical stuff. Where was the time for me to enjoy the other 6 kids (I'm including Gina)? Now that some of our kids are full blown teenagers, I am feeling really guilty that I wasn't their for them more. What these kids had to experience in losing a brother and seeing how sick and close to death Kenny has come numerous times...and even having a brother that is not typical...It robbed them of their childhood innocents, and I'm sad for them. I am sad for the fact that we cant just go to a store or restaurant as a family, because Kenny has meltdowns. I am sad that we cant just pick up and go hiking in the Metroparks because of Kenny. I am sad that we cant have the life we used to have...and even more so, I am sad that Kenny cant experience what the older kids did when they were younger. I hate that when I still look at pregnant women who "just want their baby out anytime after 34 weeks" that I want to shake the stupidity out of them! I hate that I can never look at twins without thinking that I AM STILL A MOMMY OF TWIN BOYS. I carried them, I know what it was like to have a twin pregnancy (even if it was for only 23 weeks).
Every cold, I pray he doesn't end up in the hospital. Every doctor appointment or weird thing that he does and I choose to google it, could send anyone into a post traumatic stress moment. Every time I have to give him a tube feed, medication, change his poopy diaper or have to experience one of his OCD moments...I am thankful he's here, but I also feel so sad, stressed, angry and exhausted by our daily grind and what we have to deal with...
I hope this makes sense...
Anyhow, back to why I am writing this...
We took Kenny to his eye specialist because of his ROP that he developed when in the NICU. Last year, he was given a prescription for bifocals...this year, the bifocals are coming off. Not because they've helped, but because they haven't. His left eye has been going inwards more and more...and well, nothing is working. We are now going back on wearing a patch over his straight eye (the right one) to try to get his left eye to get stronger. He is still to wear his glasses because his eyesight is so poor though. The doctor believes that he will need surgery again, but not just yet. And it wont help his vision, it will specifically be for cosmetic appearances...you know...so the mean kids don't call him the slow kid with stupid crossed eyes. He is still monitoring his nerve damage to see if it is progressing or staying the same, but with this, I am now holding my breath on how his brain and the cerebellar hypoplasia are doing. I'm waiting for the second shoe to drop...so to speak. Is the arachnoid cyst growing? how much will he be able to learn? Why oh why couldn't those stupid neurologists at Metro and the Cleveland Clinic be wrong?! I so badly want them to be wrong with their prognosis...or their lack thereof! Years ago, they told me that he'd only be 1/2 of his age...developmentally. I hate this because, they are pretty close to being right. So, what else will they be right about? I don't want to know...or never want to experience...EVER but chances are, because of extreme prematurity, we will...plus much more...for instance, I also get to be the receiver of the best hugs, mushiest kisses and have my little boy for just that much longer.
This is just an example of how cute Kenny and Gina work together.
Gina LOVES the "Nurdle Turtles" as she calls them. She wants to be one for Halloween along with decorating the pumpkins in the same theme. So, she took it upon herself and at 6, she drew and colored her very own Teenage Mutant Ninja Turtle Jack O Lantern! I must say...she is rather talented in the drawing dept....hmmmm...I wonder where she gets that from? tee hee.
Anyhow, Kenny LOVES stickers, so...He was very proud of himself when he helped decorate Ginas pumpkin!
He even wanted to take it to school to show his teacher his great accomplishment!
If you are anything like me, you start planning your Holidays...well...now. All these years that have come and gone, I've always used my Pampers Points to get free photo cards from Shutterfly. Well, that is until this year when I finally used up just about all of the needed points to gobble up my yearly tradition of picking out my reward for having a kid, or two...or three in diapers. Nowadays, I just use the wipes considering Kenny gets his diapers through Medicaid.
I'm going through my email and low and behold, I come across one from living social. Hmmm...photo cards. So I went on the website and to my surprise...they have really beautiful cards! So I decided to give it a shot.
So after a few weeks of kids not being home, prior commitments and colds, we finally got a chance to go to our family fall tradition of Red Wagon Farms for pumpkin picking. The weather was perfect...not to hot, but just enough chill in the air to keep the bees away! We were minus one Tony), because now that he is seventeen, he doesn't want to do things with the family...just wait until one day he misses these family outing. I was really sad that Tony didn't want to go, but I wasn't going to let that ruin it for the younger kids.
We had a blast! Kenny loved the hay ride into the "haunted" forest.
Beautiful surroundings to take in on this beautiful day!
and there I am. A rare pic of me. (thanks Taylor ;) )
Now THAT'S a spider problem that Terminex probably couldn't even take care of!
The kids hay bale area is always fun...new this year was the corn kernel pit. yeah....a child with sensory issues went crazy in it...poor Kenny. He stood there in a panic, not sure what to do next. I then had to carry him out f the pit and clean out his shoes while he was making the face for "ew gross, this is disgusting"!
Anyone for pumpkin checkers?!
Hey, I found Gina! Hi Gina!!!
Time for some family pictures...I'm thinking of drawing in my oldest...haahaa
We then, of course, picked out our pumpkins! I think I had more of a hard time figuring out which one I wanted than the kids! Do I go for a taller, oval shaped or maybe a shorter but round pumpkin? I just couldn't decide...so I got two!
Another traditional fall day that I absolutely loved! I am very blessed to have been able to experience another beautiful fall in my life!
Tonight I light two candles...one for our Nick and one for the 10 babies I've miscarried, for my family members and friends that have had miscarriages, ectopic pregnancies, still born or neonatal losses, and for those of you that have also had a little one that has passed away for one reason or another. This mommas heart has shattered into a million pieces several times over, in which I am slowly trying to super glue them back...kinda hard when you are missing some that can never be replaced. I can't say it gets easier for those that are new the this group of moms, it just kind of shows it ugly head when you least expect it. When someone announces a pregnancy, when you see a picture, a smell, a sound, a place or event... For me, a song or even just looking at my son, Kenny does me in! I relive the hours they worked on Nick...the prayers I prayed, the promises to God I made if he would let him live...then...the smell of holding my beautiful, perfect little baby...with blonde hair and eyelashes, telling him to find uncle John in heaven...and then praying that there WAS a heaven for my baby to be headed towards. My face up against his soft cheek and the kisses I gave him. So tonight, after a very trying and extremely difficult day of anger, resentment and sadness, I remember and honor my Nick, and the rest of these beautiful little lives that never had the chance to experience firsts.
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.
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
I am a SAHM who has been married to Tony (my soul mate) for over 15 years.
I am a twin and so is my husband. We are both artists, have 6 siblings (just the exact opposite)and now we have 7 beautiful living children and 8 angels (7 from miscarriages and Nick, Kenny's twin, who passed away 2 days after birth from complications to extreme prematurity. All of my children were born @ 34 weeks, except for the twins, they were 23 weekers and my last daughter, who was born at 36 weeks!
My family is my life! I have 6 amazing sisters and 1 brother (who is now taking care of my son Nick and my miscarried babies in heaven for me). Now I know why John died 24 years ago...it was to prepare my family and I for Nick's passing...and to be there for Nick.
I love gardening...every year I go nuts and plant a huge garden. I love jewelry and headpiece designing. My dream is to one day own my own bridal headpiece and custom jewelry boutique!
I love all crafts, painting, drawing, digital scrap booking, photography and...well...I just love to be creative.