Thursday, September 17, 2015

Cold season is upon us...with a seizure (video)

...and sure enough, kenny was home today with a runny nose and slight fever. Playing all day with his cars and iPad, I was sure he was going to get through this with no seizures....i was wrong.
He came over to me and put his arm around my neck and held my hand with his other. He was just staring with his mouth open at me. I asked him if he was answer. I wasked him if he was having a seizure and he shook his head "yes". From there, he just was in another world. Staring. I video taped him because his neurologist wanted to see exactly what he did during these seizures that are far different than the grand mal ones he was having before. He was staring and out of it for a good 4.5 minutes...I just started taping when my husband grabbed Kenny to hold him...realizing it was the perfect time to show the doctor what we were seeing. He's ok now, but I will be up all night making sure he's ok. I really hate this time of year for the fact of knowing that spring and fall is when he gets sick the most and when his seizures happen he most.

Keep in mind, when it looks like he is looking at someone...hes not. He tends to stare to the right...which is what he was doing. You can see the moment he snaps out of it towards the end. This was a longer seizure than most, with this type of seizure so I went to get the Diastat and handed the camera to my niece. He came out of it when I was getting ready to give it to him at the 5 minute mark. Im so glad (if i can even say it) that he had this type instead if the full grand mal. They are still really scary, but are able keep him comfortable through...

Monday, September 7, 2015

Fun with (soon-to-be) Fall

Now that the summer is over and the kids are all back in school, I finally have some time to start blogging again. Kenny was a handful this summer and it took a toll on me. I welcomed having a little bit of free time away from screaming meltdowns, keeping a watchful eye on Kenny because of him being attracted to cars...moving and parked. This is all in-between searching for important papers and objects that Kenny has gathered and placed in his special places (which includes old purses, shopping bags (plastic and cloth), drawers, Ziploc bags and boxes).

So, after being blessed to have moved into this house a little over a year ago, My husband and I decided that not only is this going to be the "gathering house"...but we were going to go crazy with the holidays...and every other opportunity we could!

We have been working on the first of many projects that we will be setting up in our front/side yard for Halloween...

Day 2 of ...lots of black duct tape. We added ribs, feet and hands...
We got the idea from a great blog...Grim Hollow. You can also follow them on Facebook (which is where I found this fun project.
This was very easy to make...especially since we spent only a few dollars on 6 1"x2" pieces of wood and duct tape. We used wood from an old bunk bed we had...and disposable pads that we have for Kenny.
The whole thing will be padded with the waterproof disposable pads and ducted taped, spray painted with brown, black and dark green paint, draped with dark colored cheese cloth and a big head will be added!!! Again...almost all of it is made by recycling newspapers, wire hangers, and wood! 
When its all said and done...the final outcome will be similar to this...
(courtesy of GrimHallow)
I think out next project will be the mausoleum made by a bunch of 1x2's and painted foam insulation boards!
I have also started decorating and putting up my Spookytown village. This year, since the hubby added to his sign business a digital printer...I came up with a small project for my husband to help me know, since he doesn't have much of anything else to do other than a million sign jobs waiting on him...haahaa..
Backgrounds for the village (and you know...this will be extended into my Christmas village/Its A Wonderful Life village...eeeks...
Here are the pictures drying...
These are "before" pictures. Notice how boring and not scary these look.

AND...Presto! Much more interesting to look at!

This is just the first of many backgrounds that will be used.
Since we don't get out much because of Kenny, we have found other ways to entertain and have fun with our kids. Not to mention...we just cant stop creating!

Tuesday, May 12, 2015

Kenny read to me! its simple words...and just a few, but he is reading his very first book!!!!
I took this out of his backpack and in the world?! Soooo...I followed his teachers dirctions and sure enough...HE READ THE WHOLE BOOK TO ME!!!
I couldnt believe my eyes when he started to sign and say some words! THIS.IS.HUGE! 
Our 1.7 lb. baby has stomped out any negatives and those that thought he'd never be able to do anything...and is showing the world that he is amazing and is doing things in little steps...but...he is still doing them. Everything he does my eyes, is a blessing from Heaven.
I am so proud...this brought tears to my eyes!

Sunday, May 10, 2015

An ode to moms on this Mother's Day

I sit here reflecting back to my first Mother's Day and being a mom...I remember feeling the excitement of being able to finally be able to share this day with my own mom and my Mother in Law...but still question how. I wasn't worthy of the years of experienced motherhood these strong, beautiful and amazing women had. My mom for all my life and when I met my love of my life...his mom whom I was easily able to call mom, meant so much in my life and played a huge role with who I was and the mother I strive to be. On one hand, you got my mom. A working woman...always have been...raising 7 kids. And on the other, my mother in law...a stay at home mom raising 7 kids. I loved seeing the two different yet same ways their love, guidance, dedication to their kids, their husbands...themselves...made them the best they could be without losing their own identity. 
I am now in a new phase of motherhood...a phase with no babies. A phase with a seventeen year old who I am having a hard time realizing that he is right on the cusp of becoming an adult. I cant get over how quickly these 17 years of being a mom as passed! You know, you get told from many seasoned moms to enjoy them while they're young because it goes by quickly....and you just fluff it off like...sure...OK.  But it is true. You are so caught up in the crazy world of diapers, tantrums, feedings, no sleep...etc, but you don't realize that while your doing all this, you, them and everyone around you are also living and growing older. With every diaper change and terrible two tantrum, you are learning a life lesson that will get you to our next phases of life. 
The toddlers grow to become young adults...who, in turn, want to be their own person yet, need their more ways than just love, acceptance, and guidance...which would be just fine with me..but, also to push buttons with teenage tantrums (far worse than terrible twos) to see boundaries, money for items that are no longer the dollar store pickups that would have made them squeal with excitement years ago, and finally...independence. The word that hasn't been used in your vocabulary since before you became a mom! How does one let go of those that you kept under your wing all these years? How did our moms let go to let grow?

I'm not sure when, how or why....maybe it was when I was watching Grease and realized that the movie I idolized when I was 7-8 years old was about teenagers in their final year of high school...almost the same age as my oldest. Yikes. Talk about time smacking you in the face! 

So, for my beautiful and loving mom, my mom-in-law, my sisters, my sisters-in-laws, my nieces, my aunts and cousins, my friends and their moms and also, those who are moms to angels, those who have lost a pregnancy, those who have lost a any age...thank you for sharing this special bond. Thank you for giving yourself...selflessly to your kids, nieces/nephews, grand kids...friends. Thank you for all those days where things didn't go exactly as planned, yet you still trudged through and made it on the other side...even stronger. Thank you for keeping love strong. Thank you for helping those of us who are having a bad day. Thank you for sharing your expertise and knowledge of whatever we have questions or complaints it baby, toddler, teenagers or even special needs. Thank you for comforting words in times of grief, heartache and sorrow.  Thank you for giving me courage to do this whole "mom", its tough and rewarding all at the same time.
Thank you for the memories of yesterday, the companionship of today and the uncertainty of tomorrow...

Happy Mother's Day

Saturday, May 2, 2015

Kenny and Nicks 8th Birthday

For 3 days...8 years ago...I was a mommy to two beautiful but tiny twin boys both still hear on earth. I love you both very much Kenny and Nick. Kenny is the strongest little kid I am blessed to be a mommy to. He's overcome sooo much and is such a sweetie. And Nick, I miss you with my heart and soul...and wonder daily what kind of little 8 yr. old you would have been. What a crazy ride it has been. Even through heartache and the unknown of what the future has in store for Kenny, I am blessed...we have been blessed. Happy Birthday to our twins! Thank you for making me a mommy to twins, thank you for choosing me as your mommy, thank you for giving me courage and making me appreciate life. I love you both very, very much.

Here is the very first post that my sister wrote welcoming them:

And a poem I wrote:

You both were dreams and visions of love
Inside me, I had you both, and thanked God above.

I prayed and prayed that you'd both be healthy
I'd give up everything including being wealthy.

Nick on my left and Kenny on my right
It's a feeling of having twins that was so in sight.

A dream that came true, but with different results
I cant help but feel that it was somehow my fault.

A mom is supposed to keep their children safe and warm
I couldn't do that, the day you both were born.

I cried the night I saw both of you, you looked so unreal
that my Nick and my Kenny I could no longer feel.

Nick you put up a fight to stay here with us,
but God wanted you close and you didn't put up a fuss.

Daddy and I held you close the day you went away
I love you, I love you, is all I could say.

I told you to look for your Uncle John in Heaven 
I bet he wouldn't believe that we actually had seven!

Kenny would miss you with all of his might
but we know that you are with him throughout his whole life.

It would have been fun to celebrate with both on your day
the birthday of my boys, my twins I should say.

Kenny is our miracle, he is our little guy,
I wouldn't trade him for anything, I would much rather die.

God chose this life for us and for him,
We just have to have faith that his light will not dim.

The problems and issues with you, that we have to see
will make us better people, I think that's the key,

So as we celebrate your birthday, yes I am happy but sad,
I want you both to know that I am trying so so bad!

See, I prayed for my twins that they would make it through the days
and now I see that they have, just in very different ways.

I am a mommy to twins, one in Heaven and one on Earth 
How lucky am I to have actually giving my twins birth!

Our family has an angel and his brother he watches over,
It's better than finding a lucky four leafed clover!

Kenny, I look up to you, you are such a strong little guy
You lost your other half and you couldn't even say goodbye.

As We celebrate your birthday(s), I want you to know,
I will be with you and love you and help you to grow.

We will make it, I promise, all of us together
That's why God gave you both to our hearts, forever!

It wont be easy, but we all will help you through
With hospitals, therapy's and anything new.

My love for you started when God gave you to me
And it will never end, not from now till eternity

So Happy Birthday to my twins, Mommy loves you more than ever
I promise to love you, think of you and be here for you, now and forever!

Happy Birthday Kenny and Nick...Mommy and Daddy and your brother and sisters loves you both so very much.

Kenny, I will help you become the strong, loving and successful person that you are meant to be. You are an amazing little boy who puts a smile on my face every day. No matter what happens, we will be here for you and help you through any obstacles that you may face in life. You are my miracle and would do anything for you and your sisters and brother. 

And for you Nick, my angel, I pray that you are with Uncle John and Great Grandparents and others that have been part of our lives. Until we meet again my love, Keep the lights going on and off coming! I hope Uncle John is taking care of you! I miss you so heart is broken because your not here. Your Daddy, sisters and brothers keep me going and my faith that you are with Uncle John and Grandmas and Grandpas help me make it though the days!

I don't usually go all "number-ie" but these numbers are very ironic...almost it was meant to be....

We had 5 children = May (5)
Then we had our twins = the 2nd day of May (2)
total kids 7 = the year...2007


Here's another one...No one can say that Gina wasn't supposed to be here....

We had 7 children = July (7)
We had 7 children + added one (Gina) = the seventeenth day (17) (one & seven)
So total living kids 8 = the year 2008

Oh yeah...God does beautiful things!

Friday, March 13, 2015

A Friday the 13...not to remember

On top of my son having stomach issues...from random vomit on Monday (no fever or vomit after said issues at school) to not peeing Tuesday and puking on Wednesday afternoon (with no fever or other vomit after coming off the bus) and then...pain in the feeding tube only find out that the balloon broke. Thinking I had a back up tube from the last supply shipment to only finding out that the supplier never had it on their order. So what's a mom to do on a Thursday night when a g-tube is falling out? I taped and ace bandaged it around his tummy, in hopes that the school was able to give me the extra one that I gave them at the beginning of the school year (as a backup). This morning was supposed to be a get ready and attend a very dear uncle's funeral. We loved this uncle so much...he was a great human being...and his surviving husbands aunt is just as great. Anyhow, I woke up, got dressed and made up. I then woke up all the kids, ironed and called the school to see if I could drop by to pick up Kenny's extra g-tube that they had with all of Kenny's medical supplies. Nope! They couldn't find any sign of a feeding tube. No nothing. So, now we have to wait till Tuesday for a new one. 

I then get a call asking us not to bring our Kenny to the funeral. REALLY? He might upset and disrupt people? I already had him ready to go...he was even doing the sign for the Father, Son and Holy Spirit. How can they ask that of us? My husband and I were beyond hurt. We were both in tears! And to not stick up for us. really? Yes, my son is loud, runs around, and cant say true words...oh, and much of what he does, is awkward and clumsy...but he is alive and loves people and gatherings of any kind. He doesn't mean to be loud, but because he is severely deaf and had autism...his voice is loud and very repetitive. We dont go to too many place with him because of these issues, but thought we were safe with family. Ive always heard that you need a villiage to help raise a child (especially a special needs child), and yet, its just...well...not that. I really dont think people realize how bad it feels to be looked at...the head shakes in dislike...why? Because we are doing the best we can with what we've been dealt. Every day is a struggle, yet my husband works hard, i work hard...our hard to keep it all together, the best we can. 
We've been through so much in these past 8 years (a death of a child, a baby teetering on death in the NICU then all the ups and downs of having a medically fragile child that can pass at any time ...amongst many other hurdles)...that this was the straw that broke the camel's back and we just couldn't handle it. We have a child who is almost eight but developmentally more like a 2.5-3 year old. We have to give him medicine daily and worry about every cough or stare in case his lungs are giving out or if he's having a seizure. We never thought We'd have to stick up for our developmentally disabled/medically fragile child from those close to us...but happened. I wont let my son who has beat many obstacles and odds...just to smile, laugh, run and play, be discriminated anyone. I love our families...I really do, but when it comes to my son, I...WE, wont be pushed aside. We've come this far...20-something years together and 8 kids, many weights have fallen on our shoulders and fingers pointed at us...this time, we're not bowing out gracefully. We did nothing wrong and we wont hide our handicapped child away from the world! We wont allow any more sadness, stress or bullies hurt our spirits and break us. We've only ever wanted to keep family together...have family stick up for us...for our son...

Thank you for supporting us and God bless.

Sunday, March 1, 2015

So much to update on! feels so good to finally be updating with some awesomely amazing news! First off, let me start by saying that life has been really good to us lately (knocking hard on wood). There has been no real sickness for Kenny...which is HUGE considering he is usually sick all season long. Minus a few unexplained seizures, hes been pretty healthy! Last week, Kenny had an EEG...still no word on the results...but he was a trooper!
I do have some fun news to share...Kenny is almost potty trained!  I give this huge accomplishment to his teacher! She saw that he was ready when i was so stuck in the same rut, day in and day out. She saw the possibilities when i was burnt out and exhausted. We do have accidents daily, but...just like a 2-3 year old learning to go in the potty, Kenny is doing awesome! We just have to keep in mind that just because his age is 7, his mental age is more of a 2-3 year old...sort of hard to swallow, but true. 
At school and at speech therapy, he is learning many, many signs and is really working on verbally saying, bus, outside, backpack, and names of some family members! He has been wanting to do things on his own...but wants me, his momma to (doing the sign for "help") help him in some way. Yup, the kid is a mommas boy. Yay me (eeek).
As you all know, this winter has been brutal...i mean...tons of snow and record below zero temps....and that means...HIBERNATION for me! So while being couped up in our house, I've been working on couponing (which i took a break after thanksgiving)...and let me tell you...its addicting and actually makes shopping fun...almost adventuristic (if that's even a word)! To spend more than .75 on a box of cereal is crazy to me now! The way to start, is by buying several newspapers with inserts. I belong to a couple of Facebook groups and pages that coincide with some blogs that I'm following...i recommend you doing the same. Now keep in mind, couponing, when you want to stockpile, means you only match up sale items with coupons...only a few items at a time so you don't get overwhelmed. There is a lot to learn, it has taken me about 4 years to finally understand the whole takes me a whole day to just plan, print, cut and organize my shopping trip...but well worth it! I will be talking more about couponing in future posts! 
Ok, back to this winter and my hibernation....Valentine's Day and Pintrest encouraged me to do this:

I am secretly hoping i am creating fun memories for my kids to tell their kids ;)
My Instagram addiction (in which i also have) has taken hold of my daughter, who loves to post pictures of the dinners i have made...

Thatsmygirl!!! Haahaaahaaa

And since we've been doing fairly well with this new house...(i say new, but we've been here almost a year this month), my husband has decided to take the next step in his business...he is going digital! It means that money will be a little tighter (especially since the county keeps raising our property taxes) because of the lease of a digital printer, but it will also mean that he is taking his company into a whole new area of signs/banners/graphics making! You cant make money without taking the plunge...soooo...we are. Many prayers are needed that we can pull this off...its a huge gamble and I've been worried about prayers please. 

Finally, its that time of year...lent...and...cupcake bake sale every Friday at our church. So I'll leave you with an image of the variety of cupcakes from the first fish fry bake sale. Ive been trying to make many different kinds each week so i know which ones are popular. 

This is all to get me prepared for a big event that i will be doing in April (more to come)...

Monday, December 15, 2014

19 years of good times and bad...

Sickness and health, richer and poorer....and, well...we pretty much have been there, done that. Where did those nineteen 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 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 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 was huge and beautiful...and it was ours! I still have the gifts from the shower and 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 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 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 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....19 years later we have filled the same "starter home" quite nicely, with kids from 17, 15, 13, 11, 9, 7 and 6 in our lives along with heartbreaks of our many miscarried babies and our precious angel...Kenny's twin, Nick.

In those nineteen years, I became a stay at home mom, Tony started his own business, spent many hours praying...laughed, fought, cried and dreamed together. It's not where we thought we'd be nineteen 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, 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 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!
Through house hunting, moving (what a huge pain) and settling in a new life. Crazy how things work. It seems so long ago...but just like yesterday...this crazy whirlwind of nineteen years!
 We have lost so many people in these nineteen years but know that each one is watching and waiting for us for a huge reunion. Through dreams broken but new dreams to come...
I am so perfectly glad that these nineteen 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 nineteen 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" the movie!

Friday, December 5, 2014

Thankful for Thanksgiving, family...friends...and the holiday season

After a really long last few weeks...I finally have a few minutes to sit down and catch everyone up to the happenings of the Tomecko house.
The house is still under decorating stage (and will probably be until Dec, 24th), but this is what I have come up with thus far...
inside, I have wine bottles filled with lights....
doorways with garland and lights...I am in the process of putting little, hanging snowflakes from the dollar store in the hallway here...
the wreath got relighted with green and red lights along with a beautiful beaded snowflake from T.J.Maxx.
We decided to celebrate Thanksgiving with my entire side of the family (minus my parents who were supposed to come, but couldn't travel) I think I made them proud and hosted a grand old fashioned...Kowalczyk family Thanksgiving. Its so weird to think, that because of the love of my parents...all these people were created....Kids, grand kids and great grand!
My twin sister and her family came in....I've haven't laughed so much and hard in such a long time. It was really needed. I actually didn't realize how flatlined I'd become until my sis and I were just hanging out, laughing about we used to do!
There was the turkey bowl in the morning...with kids and parents of my oldest son...followed by Thanksgiving breakfast. Then, as we were working on that...dinner was being put on...
The food was crazy! Two 23+ pound turkeys, 25 loaves of bread for stuffing, 20 pounds of brussel sprouts, 20 pounds of potatoes, 20 sweet potatoes, and so much more!
 My oldest sister doing the honors of carving the turkey...

 It was a perfect Thanksgiving from start to finish. One that I know I will keep near and dear to my heart forever. I love my family and friends!

After a few week of regrouping, semi-relaxing...and more decorating...I attempted our annual family pictures for our Christmas cards! I wont post the actual pictures...but here are some outtakes that I thought were perfect.

We had our share of tantrums and screams...but all in all...I do believe...the shots came out great!
This holiday season has been such a blessing to us.  To be able to get our families together has been the one thing I really wanted. The most important thing in life is love and family...I want my kids to grow up with the fond memories that I have growing up...big parties with extended family...laughing and reminiscing and being close!
I am...we are...very blessed.