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!
Here we are 6 years later...
My son is now 18...almost 19...
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!
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!
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.
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!
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.
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.
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.
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.
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
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.
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.
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.
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.
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
I've learned that writing, as well as talking, can ease emotional pains.
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!
How is it possible that you are graduating high school?
Wasn't it just yesterday that I graduated high school? Said goodbye to all my close friends and the life I knew best...8 hours of school...
Wasn't it just yesterday that I slowly found my way into this thing they call...adulthood? Lots of college classes, new friends, staying up and out late at the clubs, finding a real job...like...not in retail or fast food...like...actual adulthood job...
Wasn't it just yesterday that I peed on a stick and was excited and scared at the same time at what was about to become my new life...taking care of a new life?
Wasn't it yesterday that I learned what it was to be a mom for the first time. Changing diapers, cleaning up spit-up...and dealing with your colic? Where dad and I tag teamed late night (all nighters) rocking you to console you from crying...listening to Chicago...over and over again. God, I can relive every moment of that time just by listening to their songs.
Wasn't it just yesterday that you took your first steps, recited every baseball players name that was on the Indians in 1998...and we had people looking at us like you were a freak of nature, because there was no way a 10 month old could actually be talking this well...let alone recite a whole baseball team!
Wasn't it just yesterday that you went crazy over your new siblings...one by one.
Wasn't it just yesterday that you started kindergarten. I remember crying a little bit because my first born was going off to school...just starting your school years. Making sure your shirt was perfectly tucked into your pants because if there was a little bit of bunching...you'd flip out. I had to make sure your belt wasnt fastened too tight, the seam on your socks weren't irritating your feet, and your hair had to be just right...
Wasn't it just yesterday that I got sooo irritated with you for wanting a sippy cup of strawberry milk or Sunny D late at night, when I was so exhausted from taking care of your little sister, but got it for you anyhow...and how you looked at me with a smile...and your eyes crinkled up as you said, "thanks momma, I love you".
Wasn't it Just yesterday that you loved Boy Scouts, Monster Trucks, Skateboarding at Chenga, playing computer games (Nancy Drew, Freddy Fish, Lego)?
Wasn't it just yesterday that you had your 8th grade clap out? I was so excited for you...yet nervous for you to be going into high school.
Wasn't it just yesterday that you cried and didnt want to be in marching band...yet I knew...I just knew that you had something special with your self taught talent on the drums...I just knew you'd love it.
These last 4 years we've been blessed with sharing your high school years with you. The band events, the dances, the prom...
We've watched you transform from a boy to a young man right before our very eyes.
Wasn't it just yesterday that all these memories have been filling my head. How proud dad and I are of you that you will be graduating high school and starting your adult life.
I'm not going to lie when I say that the road we took raising you wasn't rough...it still is. You are very much like the best and worst of both dad and I...but know that we love you, care for you and want the Now all the yesterday memories are flooding in and my...our oldest child...our first born, will be graduating high school. There are too many emotions that come with this feat...happy, excited, proud, scared, nervous...and yet a little sad because that I wish I could go back in time and change many things (being a parent isnt a very easy job...with no "how to" manual)...Yet I know, that because of the yesterdays, you are you today...and for that, I am proud of you and feel a sort of accomplishment as a parent.
I cant wait to see what the next 18 years of tomorrows brings.
We celebrated Kenny's 9th birthday along with his and Gina's First Holy Communion a few weeks ago. So, keeping up with my crazy...boring life....I decided to have a huge blow out with family
and friends. With Kenny & Gina being the last of our kids making their
communions...we had to end it in style...and that we did!!!
I made Gina's headpiece like I have for every one of my daughters. I made them with painted metal tiaras encrusted with Swarovski crystals, beads and rhinestones. They have the options of wearing them for their wedding day.
And, because Gina is Gina...my rough and tumble tomboy...I wanted to surprise her with white high tops to wear under her communion dress...
Of course, I had to make Kenny his Milestones for Micros shirt...I mean, we were gonna be celebrating his birthday that day as well!
The morning went without a hitch, I mean...who needs sleep. 7-8...or 3 hours...no difference! haahaa
Only reason I stayed up late was because I was getting the food ready to be thrown in the ovens,
the salad and the veggies cut up, the cupcakes frosted, the house decorated....and of course...the clothes and showers done.
We and Kenny's PSR teacher have been working with Kenny to take the host
and sip wine, like Gina and the rest of the kids
...but in the end, just be getting a communion
blessing is all we could get out of him...which was perfectly fine. When the time comes that he willingly puts the bread and wine to his lips, he will then receive communion...until that time, he understands and can go through mass like every other communicant.
I love these pictures of Gina receiving her first communion. She is such a blessing to me. I love her spunky, laid back ways. She is so smart and helpful with her brother that sometimes she even sees herself as a big sister to Kenny.
(this one is my favorite)
This is Kenny getting his blessing
God knows that he tried. He did do everything else...except for the host and wine to the mouth...it wasn't gonna happen.
So we made it more about him being and doing what his peers were doing. We want him to
be as typical as possible. To experience everything a typical child his
age does...so he doesn't feel "different"...and we are holding true to
Here are Kenny and Gina doing their songs for the service...
We have a wonderful family picture of the kids...
and with Grandma & Grandpa Tomecko
And Auntie Denise (my oldest sister) and Uncle Eddie (my husbands twin)
Here they are with their PSR teacher whom I give all the credit in the world to. She never had a special needs communicant in her class, so it was quite challenging...but she really pulled it off and made Kenny feel welcomed. Not to mention, she helped show the other kids in the class what being a true christian was all about. The kids all took Kenny under their wings and really were wonderful with him.
And we even got a great family picture of our clan...We actually do clean up well...
After the church service, we went back to the house to set up and
put out the food which I was preparing all week
it included Eggplant Parmesan,
sausage and sauerkraut,
ham, roasted veggies and a huge salad.
Then family brought even
more food. To top it off, instead of a simple cake, I made a gazillion cupcakes, all different flavors!
There, we greeted all of our family and friends. It was such a nice turnout! We feel very blessed to have so many great friends and family members that are part of our lives...truly blessed.
We also sang Happy Birthday to Kenny (and Nick in Heaven)...
(Kenny is standing next to his best friend Claire, who is in his class at school. They share the same speech therapist as well. He loves her so much)
Notice how he was trying to blow out the candle!!!!
He always has to hug!
Gina was having a great time at her party...but couldn't wait to get out of her dress!
Kenny was excited to open up his gifts.
...now to get these Thank You cards addressed and out.
Onto the next events to end this school year:
A seventh grade dance,
A prom/after prom (that tony and I are on the committee for)
Graduation from high school/grad party!
...did I mention, I still have to plant my vegetable garden and flower beds?
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.