Thursday, August 17, 2017

Prayers and thoughts for our Kenster


I've been trying to figure out just the right words to say as I type out this blog post.
...and between my anxiety and reality, I am lost...

Kenny has been amazing...simply A.MAZ.ING. He loved going to Camp Cheerful day camp this summer...he made tons of friends and was busy, busy, busy daily. Coming home was another issue. lol. He started up with meltdowns in the car as soon as we pulled out of the camp driveway. Not horrible ones, but ones that can drive a mom up a wall...I fluffed it off to being over stimulated all day at camp. His meltdowns are getting just a little bit more frequent. And as any parent knows, trying to stay calm, cool and collected is hard to do when your child is screaming like a crazy, hitting walls & windows, stripping down to nothing at times, and just inconsolable. We know he is on the spectrum, but we are in the process of getting the actual diagnosis...which takes forever...his appt is not until January...yes, the waiting list is forever.
We are also dealing with this lovely state of Ohio and how they have transitioned kids on straight medicaid (because of chronic illness and handicap) to a managed care plan. We are now struggling with having to change certain specialists, make sure he is able to get his meds (which they feel that generic brand is just as good...and it really isn't), tube supplies and diaper service. On top of having to go through many channels to be able to get approved for certain tests and procedures...where as straight medicaid, we and his doctors were able to order something and it happen. So...we now wait and hope that his waiver comes through...which is highly unlikely. He will age out before that happens. I have had many fights with many people about the health care and coverage of kids with medical issues...chronic.medical.issues...but this is a whole other post topic.
anyhow...
This brings me to the events leading up to today. Over the summer, Kenny went back to his audiologist for his yearly hearing testing and to put an order in for his new hearing aids...since he lost one and broke one...it was time to replace them.It wasn't the audiologist that has been with him since birth, but one that was filling in for her. After the testing, she mentioned to me that his hearing is worse. That the left is far worse than previously and that she would let his audiologist know.
OK...so, maybe she tested him wrong. Maybe because she was a new person in his testing, that she didnt know him and the way he operated...I dunno...at that point, I was hopeful...I mean...keeping positive is what I have reprogrammed my brain into thinking...I have to!

We then had his comprehensive care appt. a few days later. This is the doctor appt. where all of his specialists see him. It is about a 3 hour appointment...and it is well worth the time. Each doctor comes in and then they all work together to come up with a game plan. Well, his neurologist was his very upbeat, carefree self...doesn't make a whole lot of worry for anyone...which is wonderful for me as a mom....again...keeping up with a positive attitude is key. I wasn't too worried when he mentioned that he recommends PT/OT to start up again. That Kenny has tight and loose muscles. I mentioned to him that I was slightly concerned with his left side. His muscles tend to be a little tighter but yet weeker on that side. He tried to open his fingers on the left, and noticed that the thumb and forefinger was very tight, but the wrist was loose. His ability to follow moving directions were a little off...for instance, a jumping jack...yeah, he cant do those (Que in mommy guilt complex #1). He can input what someone wants from him but to actually do it...to output, is very difficult...he also uses his tongue when he is very involved with a task, which is another big red flag.

Last week, his new hearing aids came in. He picked out fun colors...well...actually, his favorite colors of purple, orange and red. His audiologist wanted to retest him...for her own benefit...just to make sure the results from the last test was right.
Unfortunately...they were.
His left ear is almost at the profound loss level and his right ear is severe. This raises flags for us because his hearing loss has not changed since he was a few years old. My child went all summer without hearing aids...unable to hear. (Que in mommy guilt complex #2)! No wonder why he was such a crab. The audiologist voiced her concern to me about it and that she was going to let his doctors (more so, his neurologist) know. At this point, start panic mode...mommy style.
So, this is where we are at. Tomorrow...Friday the 18th. We will be seeing Kenny's Neurologist. There are concerns from everyone that 1)his muscle tone is off. 2)his eyes are crossing again. 3)his hearing is far worse. 4)he is more agitated than usual (a lot more meltdowns) 5)all of those breakthrough seizures which we attributed to the use of generic brands, might not be from that at all.
 ...all of this leads everyone to feel that his brain issues are starting to progress. This is what we did NOT WANT TO HAPPEN.

So please keep him in your thoughts and prayers. I could you a prayer or two myself...because...I cant fathom the thought of burying another child...I would rather die before doing that again...its.that.bad.





Saturday, May 27, 2017

MBC Roots, GEORGE MICHAEL - THE GRAVE



God bless those that gave their lives for us. Let us not forget those brave men and women on this Memorial Day. George Michael sang this perfectly...with passion and meaning...

Tuesday, May 2, 2017

Happy 10th Birthday!

Well, here we are...10 years old. We made it 10 years little buddy!
 
 I am so proud of how much Kenny has grown, learned and excelled beyond expectations. He is such a remarkable little man.
  He has filled our lives with tons of love and also a lot of irritation (doesn't all kids?). Oh wait...lets not forget some panic filled moments when he gets sick or has a seizure. 
He sure hasn't changed much from the NICU days! hahaha. 

This little boy may not make much sense to many people when they talk to him (thank you apraxia of speech)...but man...does he have a lot to say! He loves to take walks, watch/play video games (simple), loves lining up his Hot Wheels, his old school Fisher Price Little People (circa 1970's). 
Loves his baby dolls, stuffed dogs and Build A Bears. He gathers everything and anything, loves to write his name...on everything, and can count to 10 with no problem!

This little boy, whom we almost lost on several occasions has filled our home with so much love and craziness. He may not be perfect and we take his health day to day...but I am so blessed to have this little fighter as my son!

******************************

As you all know, this week is a painful one for me...I relive it yearly...a nightmare that even 10 years in, still haunts me and hurts by heart like it just happened. So...I will smile, help others, laugh, give back and keep busy in honor of my twins. In honor of myself that I tried my hardest to keep them inside of me...safe and healthy...yet my own body failed me.
 10 years ago...a 23 weeker had a less than 10% chance of surviving. I remember how scared I was when I saw that I was in labor. I was disappointed in myself...why did my body have to fail me...fail my twin boys. I was barely showing! I wanted to get stretchmarks, I wanted to get huge and complain about swelling and weight gain...but my body had other plans. God had other plans.

So today...I will celebrate the birth of my twin boys...Kenny and Nick. My true little miracles. Every year, I try to be so incredibly happy...like I do with all the other kids birthdays...I mean...It IS a special day that should be celebrated. Yet...I always seem to have this battle in my head over being happy and sad at the same time. Then guilt plays a roll in it along with anger.
How can God take one of my children? I have realized that we are just here for a short time...we are Gods children...yet...to carry this burden...this cross...for a lifetime is a rough one. 

Not only am I dealing with my boys early birth...but also the day...2 days later...that I lost one.
I can tell you exactly the times. 3:00...to 6:30. It took 3.5 hours to try to save my Nick...

And 10 years later...within these 10 years, our family has had scary moments with Kenny...along with a TON of extremely happy ones!
 He loves his siblings so very much...and his smile is soooooo amazingly contagious! He made merit roll at school...which...wow is all I can say. He has an IEP and one of the best groups of teachers/aides/school ever! 

His doctors are top as well. 
So, where are we with Kenny....lets see...he still tries to talk...most of it is gibberish (think of when a stroke victim tries to talk...and nothing makes sense. This is how Kenny talks. He knows what he is saying...but the words are just not there. Now...don't get me wrong, he will talk your ear off if given the chance! He broke his hearing aides, so he has been without them for a few months now...and boy oh boy...it shows...ugh.
He still is OCD about...well...everything. From lining his cars up, to the same routine before school and bedtime. He is potty trained but I still have to help him and wipe him...and he still wears a pull up at night (tons of accidents...but we're working on it). 
He is still using his feeding tube daily...and still only picks at his food.
He has had 3 seizures since October...which is a little concerning. 
 The doctor upped his meds for this reason.
He loves school and loves playing school here at home with his sisters...he always wants to do and learn. He is such the feisty fighter that made him survive! I am in awe of him.

On the other hand...I am tired. I am exhausted. 
He still has massive meltdowns...several times a day...thanks to being on the autism spectrum. 
He doesn't know danger. He will touch something hot, walk in front of cars, cut anything and everything with scissors...yay for learning how to use them...but boo for now cutting everything! LOL

He demands attention 23/7...in that time, its a struggle trying to understand what he wants (some of the time), he repeats himself about 100 times in an hour, he wont eat a whole lot of things (yep...it is still a huge struggle), and its just a lot of work and worry.
I get worried when he gets sick, for fear of seizures. I fear his chronic lung disease. I fear his brain issues, I fear his chromosome abnormality because it is one that can cause cancer in him. I fear...another death of a child.
Yet...
This life has taught me to never take a moment or people for granted.
You never know what is going to happen tomorrow.
Through all of the hard times there is love and laughter (oh...and wine)...
 
God is Good
Our family is truly blessed... 

Happy 10th Birthday to my twins
Kenny and Nick

Friday, December 16, 2016

Twenty-One Years and counting...


In sickness and health, richer and poorer....and, well...we pretty much have been there, done that. Where did those twenty-one years go? I still remember everything like it was yesterday.
The engagement, the second engagement, the planning, the designing our invitations....the wanting to have our wedding close to Christmas because it was our favorite time of year...not to mention all the beautiful decorations, greenery and lights everywhere! It was perfect! I was working at a bridal store so I picked out the perfect dress...of course I had to make it my own by adding long sleeves and an even longer train. Picked out just the right brides made dresses for all of the girls in my wedding party...because...god knows...we had one heck of a bridal party!
I remember getting ready in my bedroom the morning of my wedding thinking...wow...this is it. And yes it was....true love! The way he looked at me, talked to me...just us being us. Having so much in common couldn't of been a fluke, could it? I mean, I never really looked at blonds before, but something about this boy made my heart skip a beat. We both were artists, both were twins, both came from families with 7 kids...but just the opposite (we had six girls and one boy and he had six boys and one girl). We both loved holidays...Halloween, Christmas, Easter....even the Forth of July was on that list. Oh...and when a good song comes on the radio...watch out because he could sing notes around most. It couldn't be a fluke, could it?

Walking down the isle at the church and laughing to my dad that the peel and stick anti skid shoe pad just stuck to the runner...and yes, it shows up on the video! ...our first kiss as husband and wife... The amazing reception we had......dancing till they turned the lights on to kick us out... The ice sculpture......the beautiful cake... the Christmas ornaments I made for our favors...and yes, the DJ calling you Andrew rather than Anthony. Sharing our wedding day with the anniversary of your aunt and uncle also meant a lot to us.

I remember being sick on our honeymoon in lovely Middleburg Heights, Ohio...yes...20 minutes from home. Also cutting down our first Christmas tree...it was huge and beautiful...and it was ours! I still have the gifts from the shower and wedding...one of my favorites...the nativity. It's a reminder of why we celebrate Christmas...but also of our life together was just starting off.
We found the perfect house...the yard was huge and the house...well...for a newlywed couple, the three bedrooms were perfect...one was a guest room and one was an art studio....but the kicker was the neighbor that greeted us that cold snowy day that we looked at the house. He became family to us. He was like a father/uncle/friend figure that was there for us when we started our married life off...all those years ago.

Who would have thought that me kinda sorta lying to our priest about wanting kids...yeah...I was scared stiff about kids. I honestly didn't think I wanted any...at the time. So in order for a priest to marry you, we were interviewed by my priest...the question came up..."will you welcome children into your life" (or something like that) and while Tony and I had a few moments alone, I told Tony I was going to answer that question with a no. He then quickly convinced me that I should think this question through because he may not marry us for this answer alone....hmmmm...lie to a priest? I know! I'll think of puppies! I looove puppies and would have a house full....kids...not so much....so yeah. I have already gone to confession about this...I lied to our priest. I welcomed children into our lives...and boy did I ever!
Something about actually being married, living in a (at the time) big empty house and, well....21 years later we have moved on from our "starter home" and into our "forever home" (until we get bored with it...or cant afford it anymore), with kids from 19, 17, 15, 13, 11, 9 and 8 in our lives along with heartbreaks of our many miscarried babies and our precious angel...Kenny's twin, Nick.

In those 21 years, I became a stay at home mom and Tony started his own business. Spending many hours praying...laughing, fighting, crying and dreaming together.
It's not where we thought we'd be twenty-one years ago, but it's been a great ride.
I couldn't of asked for a better partner to share all the ups and downs with.
We have learned that even though we have been through soooo much, it has made us even stronger, closer than ever. 
We've faced death eye to eye in the loss of our son, throughout the miscarriages and hard pregnancies, though short and long NICU visits, first words, first steps, first days of school for each kid. Through raising a chronically sick, special needs son who can be demanding, worrisome, stressful, isolating, lonely and scary to see the future of...
Through debt and also the feeling of paying off a bill...
Through laughing when something goes wrong because...I mean...how much worse can it get, right? Through late night calls to say not to stay up so late...oh...and don't forget the coffee.
Through the OMG how do you guys do it, you are so blessed....but also through the criticism of actually doing it with so much against us!
Through house hunting, moving (what a huge pain) and settling in a new house...new life. Crazy how things work. It seems so long ago...but just like yesterday...this crazy whirlwind of twenty-one years!
 We have lost so many people in these twenty-one years, but know that hopefully, each one is watching and waiting for us with a huge reunion in store.
Through dreams broken, but new dreams to come...

I am so perfectly glad that these twenty-one years happened with you by my side, and honestly...wouldn't change a thing...
Except....maybe...nah ;)
Thank you Tony for the life I have shared with you...the life that twenty-one years ago, I said "I do" to!
I love you deeply and passionately...with all my heart. Now I wish time would slow down a little so we would be able to enjoy our life, kids, families, friends and hobbies.

"All these years...and we still have the heat"....name the movie!

Thursday, November 17, 2016

On this World Prematurity Day 2016

So for today, I am reflecting on my twins, my 23 weekers...
 I never got to bring Nick home, but every time Kenny does anything new, cute, or funny...I think of what Nick would have been like. Its a hard pill to swallow every day. Knowing how Kenny is thriving and brings so much love and joy to everyone (when he is not having meltdowns and getting into everything...thanks developmental delays and autism)...I don't think I will ever get over losing Nick.
But anyhow...
I am beyond thankful to God and all that exists that Kenny is here and has come so far!
 This picture is when his eyes were starting to open from being fused. Parents never see this part of development...it usually happens inside the mothers womb...I was one of the lucky/unlucky ones that got to witness this miracle...
 So now that I shared some things that are heavy on my heart (still to this very day),

I want to share with you a few thing that my son...a surviving 23 weeker twin, who has many health and developmental issues, has accomplished just recently:

video
He has learned to count by 5s to 60...using a clock.
The little boy they told me was going to never walk or talk.
The little boy they gave a 3% chance of survival.
Its taking a little longer than other kids his age, but with the help of some of the best teachers and aides...he is really showing that he is a strong and smart kid! 

...and one more thing...

Kenny got picked from the entire school to have his artwork sent to this!
He is being entered under the "special artist" level! 
Yep...one proud momma over here!
I guess he gets he picked up mine and my husbands artistic skillz!

So, please wear your purple today
in honor of every baby born too soon!
 

Be it the earliest one can be born and survive, or one that was just a few weeks from due date! Everyone has their own story.
Every preemie, parent and family member close to that preemie and parent deserves to be recognized  today.
With a 23 weeker, doctors don't know what his outcome will be in life...even at age 9, there are issues that will be very unexpected. He has many brain, lung, feeding and muscle issues...but with love and a great team of doctors, specialists, teachers and aides...we can breathe a little bit in between the stress (LOTS OF STRESS) that caring for a child with special needs/medically fragile comes with.

Friday, October 28, 2016

I am in awe of my son and his special ed teacher and specialists

Last week, I had the wonderful opportunity to talk to Kenny's wonderful and dedicated teacher at his school. I heard nothing but great things from her...which is what all moms want to hear. Last year, he was having an issue with his behavior...biting and scratching and not listening. Well...this year, he has blossomed! He helps clean, helps with the younger kids in the class, and follows directions...along with really showing the urge to learn as much as possible. With that, she pulled out a book and made him read it to me.
I was so overwhelmed with emotions of happiness, excitement, wonder and amazement, and even shock...that all I could muster up to tell her was that she was like a miracle worker! Seriously...this little boy whom we were told would never walk, talk and be normal...whom they told me would only be half his age developmentally....is reading! What I really wanted to do was jump over the tiny table and chairs, that are just big enough to fit the littlest of school kids, and hug her with all my heart and soul. She along with the others that work day after day to teach these special kids...are just amazing to me! I thank God daily for the teachers and aides that work so hard to get these kids to be as typical as possible...amazing, just simply amazing. To be able to teach a child with special needs is a gift that involve a lot of patience and a love for their job and the kids. They should be paid top dollars in my eyes! Right up there with doctors and those that protect us and serve!

So for all of you that are just starting the journey of a micro-preemie or a child with any form of  disability (hearing loss, apraxia of speech, etc...), brain issue, genetic issue or have been told that you're child will be developmentally delayed...here is proof that it is possible for a child to learn and grow with the right teachers, aides, specialists and lots of prayers (mixed with some heartache)...
With the recent issues with the school district and the board cutting many teachers, employees, classes and extras...I want you to see exactly why we chose Green Valley Elementary School to send our son to! To think that you want to cut 16 special ed teachers/aides...disgusts me wholeheartedly. You are only hurting the children and families involved...but, I guess...just like everything else in this world...it all comes down to numbers, which is a sickening shame.

Saturday, October 8, 2016

My oldest is...(clearing my throat)...19!

My little boy is now 19!!!!
How the heck did THAT happen?
I was 19 not too long ago...I remember every ounce of being 19 and now...my oldest child is the age that I still feel sometimes. Don't get me wrong...I would never want to be 19 again...waaaay too much learning and too much of the unknown of trying to be a kid and an adult at the same time!
These next 19 years will bring everything new to you...
don't be afraid...and think long and hard before making any decisions.
...Also...Dad and I will always be your parents, so if you need advice or just a hug...we are here...always have been, always will be!
Nineteen years ago today,
my life was changed in an incredible, amazing way.
I spent 5 weeks in the hospital on bed rest. My water broke at 29 weeks and my doctor was determined to keep you in for as long as possible.
5 weeks...
5 weeks of not walking into our home.
5 weeks of not being able to go to work.
5 weeks of not knowing if you were going to be born too early for us to enjoy our first born child, in a way that every first time parent experiences.

I was so happy when I found out I was pregnant for the very first time!
I painted your room with love and care.
I had dreams of what you were going to be...yes, I knew you were going to be a boy, even though we didn't find out on the ultrasound...I just knew.
I had such a connection with you from day one.

When that day came, when my water broke.
I was so scared but honestly didn't have a clue what was happening.
I didn't know too much about pregnancy...you were my first.
When the doctor told me I was on bed rest at the hospital for the remainder of the pregnancy I didn't know what to think.
I followed their instructions. Only to get up to use the bathroom.
Monitored several times a day...everyday
ultrasounds several times a day....everyday, to make sure the fluid around you was sufficient enough to keep you safe.

I remember the one ultrasound that did me in.
I was looking at the screen, and the doctor showed me the one area of fluid
she told me that this is what is keeping you safe. Just that one spot...so small.
Then, when they saw that you weren't growing any more,
they decided that it was time...
time to where you were not safe in my belly anymore
they could take care of you in the NICU

The pain of labor was not what I expected.
it was really hard and very painful, but thanks to modern medicine...I really was OK.
I looked at Nana and asked her why she never told me how painful labor contractions were...and her response was...If I told you, you would never of had a child. LMBO!

I remember daddy so very excited, telling me that you were a boy.
Then them working on you to get you to breathe a little better.
You were tiny...all 4 pounds 8 ounces of you
but you were here, and you were healthy.
You were perfect!

I remember seeing your little round head
your squinty little eyes
your perfectly arched eyebrows...which you still have.
Your little nose, I knew right away that you had that Kowalczyk nose.
and a leg that bent over your body because that's how you were inside of me.

Happy Birthday Tony

You were born today, 19 years ago
You changed me from just being Michele, to being a mommy.
You showed me what unconditional love was all about.
You make me smile every day with the funny things you say.
When you started talking and naming all the Indians Players names off when you were only 10 months old, I knew you were something really special.

You have grown up to a wonderful 19 year old young man...I can do without the disrespect and mouth sometimes...but I will fluff that off to the fact that you are trying to be you're own person, with your own ideas and life...Not to mention...
YOU ARE 19!! eeeks...
You have made dad and I very proud of you...even though it isnt said very often between the bickering and craziness of the house and family...With all that you have done these last 19 years.

You are a great kid...er...uh...I mean...YOUNG MAN now!
...you all are great kids.
Your sisters and brother look up to you so much.
Kenny just loves having time with you...his Bro Bro. You are the older brother (to him) that you always wanted for yourself!
You lead the way to which your sisters and brother follow...so please be kind and think before acting. LOL
I am so very, very proud of you...my first born son.

Thank you very much for being in my life.
I thank God for you every day.
I pray he watches over you for the rest of your life.
To show you right from wrong
To keep you safe from harm
and to just make you happy with you being you.

So, again...Happy Birthday Tony
We love you with our hearts and soul!
Thank you for making the last 19 years amazing...a little crazy, but amazing!
Please be gentle on us these next 19...we're begging you.

Oh and keep this in mind...
I am STILL 29...just saying...tee hee

I love you

Friday, September 2, 2016

Tomecko Garden...er...um..restaurant?

Sunday, July 24, 2016

A fun day...that came around full circle for my oldest son (teehee)

Today we spent the day at our church picnic and 85th anniversary celebration. It rained, but it was welcomed with the heat that lack of rain we've had these last few weeks.
It was so much fun with all of our "family" from church! 
There was great food, live music, horse rides (that Kenny absolutely loved)...

 
OK...I'm gonna switch gears a little bit...

So if anyone remembers my post back in October 2010, where I posted from the Bob Evans Farm Festival, how Little Tony was SO upset how he wanted a sword for his birthday...and he got...a hat...were he looked like a complete goof? If you don't, well...here is part of the post:

They had a balloon artist who made the kids balloons...Since it was Tony's birthday weekend, he asked Tony what he wanted. Tony told him a sword...Instead...he got THIS!!! A hat!! baaahaaahaaa!!! Notice how happy he was when the guy slammed it onto his head. Also notice Sydney's excited face and Taylor's "look how stupid Tony looks with that hat on...haha...payback from all the times he was mean to me" face!!! PRICELESS!!!The HAT! haha
What I didn't post, was how terribly upset he was after this picture was taken...and up til today, he always brought up the fact that all he wanted was a sword and he ended up with the most stupid looking hat...that the guy slammed on his head. LOL...yes, I am laughing inside...actual tears are happening, just thinking about how funny it was! Here I got the kid who had an attitude anyhow...and to get this! OH IT WAS CLASSIC!

Well...

Here we are 6 years later...

My son is now 18...almost 19...

and, well...

He finally got his sword (with another goofy hat)!!!
Dying on the inside over here!!

Finally...this balloon artist was absolutely AMAZING!!!! 
We all got something different! Loved it!!!

His name? Dave. You can find him at:www.BalloonBenderDave.com
He can make pretty much anything and everything!!
  
Had a very fun and entertaining day which I just had to share!


 

Saturday, July 23, 2016

Working hard on speech

Here is just a little snippet of how Kenny's speech therapy goes. Some days is better than others, but the progress is definitely there! He is also getting very familiar with identifying numbers and letters!

Its the little things (short video)..

That people take for granted...daily.
The things that can come easy for most.
The things that just happen naturally for many.
The things that a child with special needs works hard for...

The things that the parents of that child tear up when it finally happens...and the child is proud.

(wait for it...)


Thursday, July 21, 2016

Blinded by ignorance and bliss

 
Yes, this post is to all of you that see my son at the store or out and about with us. It's also for those of you that drive down our street oblivious to anything than the here and now...in your little world.

See, you see a quick glance of our son. 
You see the meltdown...tantrum as its commonly referred to for the typical child. The kid that cant talk but babbles with sounds, yelling and...well...sure, it can be disruptive. You see us at church...sitting in the back because he is quick to start yelling sounds out...loud, or have a "moment" where he doesn't care that the priest is in the middle of his homily. You see the kid that is standing at the curb, in front of our house, waving as you drive, walk or bike on by. You also see me right behind him or close by...making sure he's OK.

This also goes out to the inconsiderate driver that drove by tonight...as my son was by the curb waving at you with a big smile...and you waved back by waving with your middle finger at him. flipping off a nine year old little boy...from an outsiders perspective. Nice.

What you don't know is that that little boy who you flipped off, who you glare at for disrupting...anything...of whom you look at us for not being able to keep our kid under control...who is a spoiled brat...

What you don't know is that he is a fighter. Not in the sense of bully...but who has and is actually fighting for his life. See, our little boy...this little boy that you look at as being rude, unruly, retarded, whatever...was born at the earliest a child born early could possibly survive. He has been through more in his little life than you probably will ever face...ever. This little boy could have given up, but chose to fight for his life...and continues to fight because of all of his brain issues and lung issues brought on his and his twin brothers very early arrival. 

What you don't see, is the struggle that his dad and I are dealing with...daily...no...hourly. All his medical needs, the not understanding what his babble means, why he repeats insignificant things 50 times in a twenty minute time frame...all. day. long. His gathering things from all of our important papers that we think we put away...but he found them to his toys and canned goods, cutting papers, not knowing what danger is...at all.
...And yes, his meltdowns. The meltdown that you have seen is nothing in comparison to the ones we experience hourly. We have bruises on us, broken items and holes in our walls to prove it. 
I want to tell you...actually, yell from the rooftops down to everyone of you that what you are seeing as an outsider is nothing compared to what we experience daily. I don't think we are bad parents. We get angry, punish and also praise our kids...all of them. There is no instruction book on raising kids...especially a special need child...so, no...we didn't read it...because honestly, we don't have the time or the energy to do so.

What you don't see is the fact that we, as parents and his siblings, are exhausted and beaten down emotionally and physically. We get angry at ourselves for getting frustrated at our son. I've gotten angry at God for taking my sons twin brother after I thought nothing horrible would ever happen to my kids and for giving me a special needs son whom I have no idea what I'm doing (as far as parenting goes). We've lost friends, family and basically, we are alone in this struggle that no one but us understand. 

When I was younger, I was never exposed to anyone with special needs...heck, I honestly can say I didn't know exactly what special needs meant. Up until 7 years ago, I always thought that being developmentally delayed meant that my son would catch up developmentally...which, I have found out that that is not at all what it means. I am struggling to learn sign language and understand almost everything that my son is trying his very hardest to tell me. I am tired of wiping a nine year old butt, giving him tube feeds through is stomach...4 times a day. I am tired of therapies, doctor appointments and prescription and supplies refills. We are tired of him wandering off with one of us having to chase after him. We are tired of wondering when his next seizure will take place, if and when he gets sick with a cold...if this will be "it". We are tired of doctors and therapists telling us that he will only able to do this or that...like using a communication device for conversations because his apraxia of speech and his moderate to severe hearing loss is just that bad.
We are tired of him being considered "special needs and chronically ill"...period.
We are tired of hearing (but very grateful) that he is being granted a Make A Wish...because...we know his life is shortened...and that we will have to bury another child...and we really cant fathom this concept considering I am now (9 years into this journey) just feeling a little bit more human lately. 
See...you wouldn't understand our hurt and struggles because you choose not to think first before you react and criticize my son or us as parents.

He has come so far in this life (and honestly, because of him, so have we). I would never wish this life on anyone, but honestly, it has opened us up to a whole new life. The little milestones he reaches are huge for him and for us. We are blessed with a child that will stay our child for just that much longer.  To see him smile and get excited to see someone wave back at him or acknowledge that he is waving or trying to talk to him is the best. He radiates love and strength. The babble and loud "talking" is only because he cant hear very well, so he really doesn't understand that he is loud...we're working on that. Oh...and you may or may not see hearing aids...well, he loves to lose them...so...yeah. Its like playing charades daily with him when asking where this or that is...

You don't see how hard he works at speech when at speech therapy and here at home...he really is trying to be normal...typical as everyone in the special needs community says.
You don't see how bad he wants to play sports like every other kid his age. 
You don't see how sad he looks when he sees kids his age ignoring him because he is different.
You don't see that he just doesn't understand or feel different than you and me.

So when you make fun of, ignore, or even flip him off as you are driving by...when he is just being friendly and waving at you...please know that I...that we (my husband, myself and our other children) see it and know that you have not had half the heavy load of a life that we all have had these past years. We know that you are blinded by ignorance and bliss of a non stressful life which doesn't have room for the death of a child or stress of a chronically ill/special needs one. You and you alone will have to live with the fact that you know nothing about our son and our situation that we are facing daily...and I pray that you will, one day, under what your actions or lack of means to us and to a 9 year old that has a harder life than you will ever imagine. That everyone has feelings...everyone. That we wish no harm or ill will towards you or anyone you know...we just want you to understand.
God bless you.




Sunday, July 17, 2016

Ginas 8th Birthday!


8 years since I gave birth to my 8th and last child...our Gina!
 Oh what a ride it has been with this perfect gift from God. The pregnancy that I had with her was a one of the easiest...not mentally or emotionally, but physically...perfect. I carried this little one for 36 weeks and was able to take her home with us right away! No NICU stays or anything! Since that day 8 years ago, she has made this crazy ride called life, just that much easier to deal with. The love that radiates from this gentle soul is profound. She quiet, but when she does talk...you'd think you were talking to a much older kid. She funny, loving, and is just so different from all my other kids...and I love every bit of her! My daughter, the one who up until she was 5, saw many spirits...and made sure I knew about them...yeah...thanks kiddo for being the ghost whisperer! GAH!
My daughter whom stands in the sidelines a lot of the time, knowing that Kenny is a handful and takes up much of any extra time that is available. She is my big helper, Kennys buddy whom he hates when she's not around. She is just a great little being whom I am so thankful for.
She loves sports...not to mention...is an amazing player of all. She can crank out a baseball better than most. She's not afraid of any ball coming right at her (baseball & football). She can play basketball and shoot 3 pointers like crazy and throw and catch a football from across the field!

So...its only fit to throw her the birthday of her dreams...a Cavs party!

With the help of my "sign guy" hubby, I took the picture and he created this poster that is in our house for all her friends and family to sign! I love the way it turned out!  We made stickers for the goodie bags and bought everything in gold (or yellow) and burgundy (or red).
This is one party I am excited for. She never had her own party, so today is very special for her! I cant wait!!! 
 Gina's first birthday 
 
So, with this, I want to share the poem that I wrote to her a year after I had her:

The Rainbow After The Storm
by Michele Tomecko
A rainbow is a gift, a sign all will be good...
It's that joy after a storm, that is sometimes misunderstood.
God gave us a rainbow for our family to cherish...
One when all hope and faith was ready to perish.
These last two years have been such a blessing,
They have healed the wounds, really has been the dressing.
Thinking back on everything and what this has meant...
The walking, the talking, and encouragement.
You were given to us for a reason we see,
And only God really knows...he holds the key.
God gave you to us because he felt all our pain...
The sadness, the emptiness....its hard to explain.
Losing a child and then, another so sick,
Hoping and praying...nothing did the trick.
When out of the blue, a test came back...yes
Mommy sat and cried, I didn't want this mess.
I lost a child, why didn't God keep him here...
Why give me another, it seemed so severe.
The thoughts of replacing him was scary and sad,
But God showed me something, I stopped being mad.
I thank God every day that he felt we cope,
A loss and a sick one...we were at the end of our rope.
I wasn't replacing him, I was gaining a child...
Who is strong and resilient yet sweet, caring and mild.
You have help your brother and family to heal...
Our hearts and hope you have quickly come to steal.
Kenny needed someone, his twin couldn't be,
The bond that you created is so special, you see.
Teaching him to walk, to play and to act like the rest...
Honey you simply are truly the best.
Yes we miss our Nick, and nothing will replace him,
But being here with us, has lightened the dim.
Some said we shouldn't have had any more,
But look at our life, its amazing...top score!
You have opened our eyes that God in in charge,
Our lives are worth living, his miracles...quite large.
So Happy Birthday to you, our gift from above,
You have given us pride, hope, joy and love.
 
Happy Birthday Gina! Thank you for putting a smile on my face for the last 8 years...and the 8 months before! 



Tuesday, June 28, 2016

What I have learned


I've learned that you cannot make someone love you. All you can do is be someone who can be loved. The rest is up to them.

I've learned that no matter how much I care, some people just don't care back.

I've learned that it takes years to build up trust, and only seconds to destroy it.

I've learned that it's not what you have in your life, but who you have in your life that counts.

I've learned that you can get by on charm for about 15 minutes. After that, you'd better know something.

I've learned that you shouldn't compare yourself to the best others can do, but to the best you can do.

I've learned that it's not what happens to people that's important. It's what they do about it.

I've learned that no matter how thin you slice it, there are always two sides.

I've learned that it's taking me a long time to become the person I want to be.

I've learned that it's a lot easier to react than it is to think.

I've learned that you should always leave loved ones with loving words. It may be the last time you see them.

I've learned that you can keep going long after you think you can't.

I've learned that we are responsible for what we do, no matter how we feel.

I've learned that either you control your attitude or it controls you.

I've learned that heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

I've learned that learning to forgive takes practice.

I've learned that there are people who love you dearly, but just don't know how to show it.

I've learned that money is a lousy way of keeping score.

I've learned that my best friend and I can do anything or nothing and have the best time.
I've learned that sometimes the people you expect to kick you when you're down will be the ones to help you get back up.

I've learned that I'm getting more and more like my mom, and I'm happy about it.

I've learned that sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.

I've learned that true friendship continues to grow, even over the longest distance. Same goes for true love.

I've learned that just because someone doesn't love you the way you want them to doesn't mean they don't love you with all they have.

I've learned that maturity has more to do with what types of experiences you've had and what you've learned from them and less to do with how many birthdays you've celebrated.

I've learned that you should never tell a child her dreams are unlikely or outlandish. Few things are more humiliating, and what a tragedy it would be if they believed it.

I've learned that no matter how good a friend someone is, they're going to hurt you every once in a while and you must forgive them for that.

I've learned that it isn't always enough to be forgiven by others. Sometimes you have to learn to forgive yourself.

I've learned that no matter how bad your heart is broken the world doesn't stop for your grief.

I've learned that our background and circumstances may have influenced who we are, but we are responsible for who we become.

I've learned that sometimes when my friends fight, I'm forced to choose sides even when I don't want to.

I've learned that just because two people argue, it doesn't mean they don't love each other. And just because they don't argue, it doesn't mean they do.

I've learned that sometimes you have to put the individual ahead of their actions.

I've learned that we don't have to change friends if we understand that friends change.

I've learned that if you don't want to forget something, stick it in your underwear drawer.

I've learned that you shouldn't be so eager to find out a secret. It could change your life forever.

I've learned that the clothes I like best are the ones with the most holes in them.

I've learned that two people can look at the exact same thing and see something totally different.

I've learned that no matter how you try to protect your children, they will eventually get hurt and you will hurt in the process.

I've learned that there are many ways of falling and staying in love.

I've learned that no matter the consequences, those who are honest with themselves, get farther in life.

I've learned that many things can be powered by the mind, the trick is self-control.

I've learned that no matter how many friends you have, if you are their pillar, you will feel lonely and lost at the times you need them most.

I've learned that your life can be changed in a matter of hours by people who don't even know you.

I've learned that even when you think you have no more to give, when a friend cries out to you, you will find the strength to help.


I've learned that the paradigm we live in is not all that is offered to us.

I've learned that credentials on the wall do not make you a decent human being.

I've learned that the people you care most about in life are taken from you too soon.

I've learned that although the word "love" can have
many different meaning, it loses value when overly used.

I've learned that it's hard to determine where to draw the line between being nice and not hurting people's feelings and standing up for what you believe.

I've learned that writing, as well as talking, can ease emotional pains.

Saturday, June 4, 2016

Our end of the year presents for teachers/aides

The last day of school finally showed up. As a mom, I have mixed emotions with this. This day brings a lot of reflection of years past and how my babies are growing up. It also is a day of excitement (and a whole lot of anxiety) for the future! And then you get the whole Not having to wake up at 5 to get them all off to school by 8 thing...which includes a constant repeated phrase of "GET UP, ITS (fill in the time, which is usually said in 5 minute intervals), I'M NOT GONNA WAKE YOU UP AGAIN...YOU'RE GOING TO GO TO SCHOOL WITH WHAT YOU HAVE ON." Then the fighting amongst the kids about the bathroom, the clothing, the couch, the shoes, the lateness to school, the whose sitting where in the car....oh the list goes on and on. So, this is done and not having to worry about for 3 months...YAY. But I have a whole new set of issues for the summer...
We're bored. Do you have any money we can borrow to run up to ____? The whole not helping around the house...OK...the whole...sitting around the house and not helping. LOL.

Then we have Kenny. That's a whole post in itself. I will say that we started the last day of school off with a seizure the night before. It was a focal seizure. He just got really quiet and stared...but it was definitely seizure activity brought on by nothing. He has a cough but no fever or anything else. 

We also haven't heard from anyone pertaining to summer camp for Kenny...so that means...he will be home with us all summer...everyday...with me chasing him up and down the street. I really wanted him to actually have a fun summer without having me chasing after him while he runs into the street towards moving cars or having meltdowns on an hourly basis because he's so bored. This whole "respite" thing...the whole having help for families with a special needs child is a joke. and that's all I'm going to say about this whole situation.

OK, back to the real reason for this post...the last day of school and what I made for the teachers and aides!
Its a "two gifts in one" gift! I bought these plastic wine tumblers
 a few months back knowing that I wanted to use them for something. I mean, having a sign/vinyl graphics guy as a husband does have some pretty fun perks. I was able to create these cute wine tumblers with a cute saying I found online. There was another saying I wanted to write...it went something along the lines of "I've heard much wining this year...it's my turn to start", but decided to go with this one...
I bought 4" house plants from Walmart as well...I knew I wanted to do the whole wine glass thing...but then, I also wanted to do the "thanks for helping me grow" thing as well.
Well, it just so happened that with some pretty colored netting, paper sticks, tape, a printer and quart sized baggies, I was able to make a perfect gift!
 I printed out this saying and taped it to a stick. I added a pretty flower just so it wouldn't look so generic.
I put the baggie inside the tumbler, and the plant (which fit perfectly) into the opening of the tumbler.
Taped the "sippy part/lid" to the bottom of the tumbler and then tied the three different colored netting together and wrapped it around the tumbler to make a pretty bow...
 
 and there ya go...a 2 in 1 gift that a teacher or many well deserved teachers/aids...well...anyone that has helped your child throughout the school year, can enjoy all year round!

As for the teachers and aides that I made these for...they are 100% top notch. 

Kenny has learned so much this past year. I have tons of praise for these special people in our lives. I am so thankful that they love and care for Kenny as much as we do. If I could give them a million dollars each...I totally would....that is how much I love these people!