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!