Tuesday, November 24, 2015

Signs of Nick everywhere!

I've been amazed at how life has, ever so slightly, let us know that Nick is, and always will be, a part of our lives. As a mom who has lost a child, I have never expected, but always hoped that my son would somehow...I don't know...ok...Ill just say it...I have always prayed that there was something more than just dying. myself, being a Christian...know that there is a Heaven...but a little bit of me is unsure. I mean...what if? What if there is nothing more. You die...and that's it? I think that is the hardest part of death is the unknown...and that scares the cr@p out of me! I envy those that have such a strong faith in knowing that there IS something more...that there is life after death.
I once had a very strong faith...and kind of still do because after my son passed away, I felt his spirit leave his body. I just knew...what I was holding wasn't him any longer. This is why when the nurses told me that they'd clean him up and get him dressed...I told them I couldn't hold or see him. At the time...I felt that it was very right...but now a days, I have been second guessing myself...questioning why I didn't want to bathe him. Why didn't I hold him and get some more picture of him after he passed away. Maybe its because I am missing him more and more...I don't know. What I do know is that I would give anything to see my baby again. And for that...I will keep my hope and prayers alive with knowing that Jesus...that God has promised us eternal life. All my relatives and friends whom have crossed over....I hope, pray and look forward that they are somewhere....Heaven, and that I will feel their spirits again.
Today was going to prove it...even without me being there!
Today was "Grand Friends" day at the elementary school. Gina has been out with strep, so today was all about Kenny and his Grandma and Grandpa on daddy's side. He woke up soooooo excited that today his Grandma Mary and Grandpa (Papa) was going to his school.
All morning I was wondering how it was going. I was praying he was being good. I was praying that My in-laws would be ok with how Kenny is...and what he does...his feeds, the way that he is in the second grade...doesn't know math, reading, spelling...yet he scribbles, hugs and loves life and that's all that matters!
Well my mom-in-law called me up to tell me how their day went and said that it was very nice. That they sat in a spot where Kenny could see them...and that he was very excited. She told me that they met his aide and teacher and that there was a little boy, who was also in the second grade (he wasn't special needs), who was with them...and stayed with them throughout the Grand friends presentation and morning. He told them that his Grandma had died and that his grandpa couldn't come...so he was alone....and that is why he was with Kenny and his grandma and grandpa...so he had someone. Anyhow...the boys name....
When my mom-in-law told me this...I had goosebumps...and yes...after I got off the phone with her...I cried my eyes out like a big baby!
First off...little things like this...when my TWINS should be experiencing everything together...life...They're not.
Being a twin and having my husband as a twin makes it even worse. We know how close our twins are to us...and for Kenny and Nick having to separate so early on...to me...its heartbreaking.
I couldn't imagine losing my twin...EVER! We are so close.
To know that Nick isn't with Kenny makes me physically sick sometimes. How could this be? I mean...I know how it is...and we are dealing with it...but wow...what a thing to have to deal with?!
So for a  "Nick" to be part of Kenny and my In-laws little "group" for such a special day...I will just believe that Nickolas was letting his Grandma, Grandpa and twin brother know that even though he wasn't physically here...he will always be with them and a part of them.
God I miss him so much!

Saturday, November 21, 2015

Why today, I choose to become selfish

These last few years have crept up. I am no longer a 30-something...nor am I in my early 40's. I have turned 46 and realized that after giving up my career and having 8 kids, taking care of one with special needs/chronically ill, burying a child, being in debt, getting out of debt, seeing friends pass away, watching my kids turn to young adults, and watching our parents age....I need to take back a little bit of me that has been lost in years and years of shuffle.
That watching the news, reading the paper and being on social media and watching how torn apart the world has become...that I don't have time to worry about things. Sure, its what is happening...and it is a traumatic and sickening feeling that we don't know who is going to do what to any nation. That there are bad people in the world who can care less as to who they hurt and how they do it.
I have found that being online, reading my friends posts on gun control, terrorists, refugees, politics, discrimination, bigotry, government issues like social security, food stamps and such like. I have almost become afraid and overwhelmed to even turn my computer on to get online these days. I have had so much in my life...in my immediate circle of life, that hearing, reading and seeing all this bad, negative, divided hatred towards anything and anyone makes me physically and mentally ill.
First off, there should not be so much...hatred and dividing of any culture. There are good whites, and bad whites, good cops and bad cops, good Muslims and bad Muslims, honest people that work hard for their money and those that honestly scam the system...it always has been and always will be. its the ying/yang of life. But to see it more and more...every day...it gets exhausting. Its the constant pounding of negativity and bad...this world is turning into Pottersville rather than being Bedford Falls like it should. There are radicals in every group...every walk of life...whom think their way, their kind is the only kind that should be. Well to that, I say...you are wrong. I grew up in a suburb where Catholics, Jews (and everyone in between) whites and blacks all grew up together. We learned that what made us different, is what made our little community what it was...great! If everyone could keep their own values of life to their own...this world would be a much better place. We have those who don't believe in anything...again...its your choice. Its your choice to grow up and teach your children what you want...but to teach them to hate or to not care that a human life is valuable...inexcusable.
I am not going to throw religion on anyone...but the ten commandments pretty much are for everyone to follow. they are virtues to live a happy, loving, Peaceful and caring life to those on this earth...not just for those who believe in God. Do I want gun control? Do I dislike the President or presidential hopefuls? Do I turn a blind eye to illegals or those scamming the system? Do I hate all walks of life because of a few bad seeds? Do I want refugees that could or could not be terrorists? The media is very quick to make sure to tell you what they want you to hear...left wing or right. Believable or not. I honestly think that having such an open, free for all media frenzy is causing much of the hate and panic in this world.
OK...off my soapbox. What I was trying to get through was that having been through so much in my lifetime...and being the age I am, I just want peace.
I want peace in the world. I want peace in my family, I want peace amongst my friends...and I want internal peace for myself. I have had bad years where there would be fighting within the families....why? Well for one...and I'm the first to admit it...is Jealousy. Yep... the "J" word. I was/am jealous of one thing or another that someone had or did. My jealousy come out in anger. Angry how something, someone, some words have hurt my heart. Jealous of what I don't have, what I cant do, what I had but lost. Jealous of a different life, a different path that my life took rather than what I wanted and wished for.
I have hurt and been hurt all due to jealousy...which fueled anger. And for that, I am truly sorry to all those family and friends that have been in my destructive path.
And secondly the stress from this life that was given to me. I've pushed people away because of the stress of many things...pregnancy losses and knowing there wont be any more because of my age, which brings me to getting older. Seeing grey hair more and more, seeing that "just exercise" isn't enough any more...and seeing a different person in pictures to what I see...its quite heart-stopping. Wanting more time with parents, having to deal with the every day life of having a SN/Chronically ill child. Which kinda go hand in hand because there are many...OK, most times that our parents just.cant.handle. Kenny, which means less time spent with our parents.  Also having teenagers that are trying to be their own person. I have been trying to figure out how to "let them fly" but still be a mom...a loving, caring mom. For them to not hate, ridicule and be embarrassed of me. My kids whom I have coddled and loved...to see them grow...its fun and exciting, but also...really sad that they really "don't like me" as much anymore.
God, I wish there was an instruction book on life!
 I stress out from the fight with SSI/Medicaid for my son. I stress out that I cant understand what he is trying to tell me most of the time. I stress from trying to calm a child who has meltdowns constantly...like almost hourly if I'm not or someone else isn't paying attention.  He is like that of a 3 yr. old in terms of not knowing what danger is or what is right/wrong or how to be gentle.
 I want to see all my children grow up to old age. I want my special needs/chronically ill son to live a long and happy life...I honestly am so scared to bury him...or any other child of mine. The reality stops me in my tracks and brings me to my knees at times. I have tried to live a very honest and open life. Shoot, I pretty much have my entire life here on this blog! So to be questioned, looked at like I did something wrong, questioned or disliked...I cant deal. My first impulse is to fight (yes...I get that from my mom...the strong willed Italian). I then cry...a lot. I don't usually retreat and become secluded because...well...that's not me. In another time, it was...but not anymore. I want the people that I have met along the way of my life to somehow still be in it..in a good positive way. To see the good in everyone...and to not hold grudges or let my jealousy bring me down.
We all have to realize that there will always be those "someones" who will try to manipulate, add stress, have jealousy over, want their opinions to be yours and want control over situations where control is out of control. It is our place...in our own lives and hearts to become "selfish" and want a good life, want good people in it.
 To not be without peace in our lives, but have it within ourselves first.

Monday, November 9, 2015

Monday Madness

Well...this is how my morning went:
(an excerpt from my Facebook post this morning) 
3 kids took showers...3 loads of clothes washed, a kid staying home (crying) because her eczema is really bad and covering her face, arms and legs. Two going in late because of Kenny's neurology appt. (and Gina didn't want to go to school alone). My eye is swollen for some strange reason...and oh...mine and my daughter Morgan's glasses are held together by tape and super glue (must get new ones). ...and we're supposed to be driving right now so they all wont be late for school...and here I sit, on my computer, because they are STILL NOT READY!
Fast forward to now:

 It hasn't gotten any better...I repeat, the day has NOT gotten any better! I vowed to think positive, do positive and start with a clean slate for everything...today has just deflated my positive perception on life!
We took Kenny in to his neurologist, showed him the video (seen below)
...because I wasn't sure he got my e-mail the day after it happened with the video included. He never sent me an email or even a phone call back, so I wanted to follow up with him and to get his opinion on what is going on and if there is anything else we need to do to be proactive in his treatments.
 The response we got was something I could have gotten from my neighbor! "Eh...I'm not totally convinced it even WAS a seizure he had".
Ummmm...then...wtf was it then? Why does he do this several times a year, and its happening more and more frequently? Why is his head all the way to the right with his eyes darting back and forth and going way off into the right side of his head? If this is not a focal seizure, then what the eff is going on with my son? He cant communicate during these, he looks through people not at them and he is tired after these "episodes"! I want to know what is going on!!!
 He did up his dose of his seizure meds, because..you know...these really aren't seizures, so lets just give him more meds...because, he DIDNT have a seizure! Sure, that's something I want to do. I want to give my kid more meds for something that he isn't having...wow.
Keep in mind, this doctor has been his neurologist since he was 2.5. He didnt remember that he has a feeding tube, that he doesnt say too many words
(ma, da, bus, more, backpack...and a few more words...)
So, when I asked him what is going on with him then? He tell me...he's just kenny. WTF!!!!! 
I think need a new doc for him...what do you think?  If there is anyone out there that has any recommendations for a good pediatric neurologist, please email me or send me a comment. We are in the Cleveland area.
He was supposed to have an MRI a few years ago to check his brain. When I asked about one, they said they're not giving him one just yet. Why? is it because...well, "he is who he is and has what he has"? I dont know about any other special needs parent, but I am not going to sit around and wait for my son to die without doing everything I can and know exactly what is going on!!!!
I am feeling defeated today. I felt like it was a waste of time. A place that used to really care for my son gets him in and out of there so fast...he was supposed to get his flu shot today...and well, they hurried us out of there that now, I have to take him tomorrow morning for it.
To top off my day...I had the school call me and tell me that Kenny's G-tube was pulled on by another student. Honestly...its fine. if it came out, which it didn't...whatever. This is why I keep an extra one there at school! Kids are kids, I'm surprised it didn't happen sooner. Anyhow, they didn't quite know what to do. It wasn't out, but it was much more lose than it was before. I asked if she knew how to see if the balloon inside was still full of water or popped...and she didn't know how to check!!! OMG!!! So, without further instructions that I knew I'd get frustrated in trying to tell her how to do it...I just told her to use the gauze and tape, and tape it to his tummy so it wont come out...and I'll check it when he comes home!
(and this is what he came home looking like)
...and now...I am writing this blog getting ready to take my Kayleigh to the doc for her extreme eczema that is covering her...after waiting on hold with her peds for over 30 minutes!
My I superglued my glasses together...which will look just lovely at my Nephews wedding on Saturday...eh...it will just go with my dark circles under my eyes (along with the swelling of them for no known reason, my teeth that are taking over my face (the Gibbs have nothing on me), pre-menopausal weight gain and my brown and grey hair...
#ShootMeNow #NeedMoreZoloft #NotAgingVeryGracefully #TryingToLetGoAndLetGodButHeBlockedMeOnFBToo!
Happy Monday to you all!!!

Saturday, October 24, 2015

Grahams Foundation....

Please support Parents of Preemies Day, a worldwide day of awareness produced by Graham’s Foundation. Parents of Preemies Day recognizes the courage and commitment it takes to stay strong and resilient when premature birth turns a family’s world upside down. Each year, 13 million babies are born prematurely across the globe and though medical breakthroughs continue to improve outcomes for preemies, experts are only now beginning to understand the intense psychological effects that premature birth has on moms and dads.
Here are just some of the ways you can celebrate Parents of Preemie’s Day, whether you’re a preemie parent or someone who cares about a family with a preemie:
Check grahamsfoundation.org/resources/parents-preemies-day/ to find out if there is an event happening in your area and if so, register. The first Sunday in May is going to be a great time!
Share your family’s story on the Parents of Preemies Day Facebook page.
Connect with other parents of preemies at the next #ParentsofPreemiesDay Twitter chat! Jump into the conversation using hashtag #ParentsofPreemiesDay to talk about how moms and dads can celebrate being parents of preemies.
Bloggers, visit the Parents of Preemies Day website and grab a badge for your sidebar – then create a Parents of Preemies Day post to tell the world why you’re proud to be a preemie mom or dad. Email a link to your post to christa @ grahamsfoundation.org and we’ll post it on the website!
Visit the Parents of Preemies Day website for ideas about what you can do to support moms and dads of preemies.

Friday, October 23, 2015

A phone call...never expected...

I'm sitting here at home just doing laundry when the phone rings. I answer it and who is it on the other end...my youngest son, KENNY! He called me from school (with help from his teachers)! He learned our phone number and they let him call home!!! My smile is interrupted with some happy tears!!! This is a huge milestone! For my 8 year old, special needs son to call home...HUGE!
This is one happy momma!
He then brings home and takes this out of his backpack....he is such a proud little boy today!!!
(don't mind the chapped chin...he has a habit of drooling and licking his lower lip, hence the chapped look)
I also finished up another decoration to the yard...
Packaging tape ghost!
Still have a lot more to do...but this is what I have so far!
Today is a good day!

The time has come...

The time has come to finally decide on a Make A Wish for Kenny. We rattled our brains to pick the very best...something he would really, really love...and it kept coming back to the same thing. The one thing that he has loved since he understood what songs/music was....Andy Gibb and the Bee Gees. Sure, We know that Barry Gibb is the only living Gibb brother, but we wanted something that would pertain to Kenny...and he just loves the music...the sound of the Gibbs voices.
(this picture was taken years ago...)
Something about Andy Gibb, Barry Gibb and the Bee Gees...he can sit and watch/listen to them for hours (which is a rarity).
So we decided on something pertaining to the Gibb Brothers...also Give Kids The World/Disney.
Time will tell if this is possible, but I am confident in our decision as to what his WISH should be...and for that, my heart is full of contentment
happy we
because of
(taken a few days ago)
 To see my little boy so enthralled in a song...songs by Andy and the Gibb Brothers. To be trying to imitate and sing...it makes my heart melt!

Saturday, October 17, 2015

Many thing...including a Make A Wish!!

I know its picture overload, but I am very proud of the yard. I am still not finished...I have more tombstones to put in and also I am working on a large ghost...but so far, this is what I have.
Not to mention, it takes my mind off of the fact that I still cant find Kenny's hearing aid which he lost last Saturday...its gone. I've looked in every room...in every corner. I'm sure he put it in something...its just not showing up. ugh. And also...Kenny is getting a Make A Wish! I'm not sure how I'm feeling about this...especially since I know that it is for very sick kids who are fighting to live. I know in my heart that he deserves this...but my brain cant wrap my head around the fact that my surviving twin son who has fought so hard to live...and has caused a lot of anxiety for me (in terms of his health and developmentally). I cant fathom losing another child...I just cant. But I know that it is a very strong possibility...reality that wracks my brain nightly...especially after a very trying day of tantrums and me feeling guilty for yelling and wanting him to...just.be.healthy and normal!
Getting the call from them...hit me like a ton of bricks. "KENNY GOT APPROVED FOR A WISH"...excitement and sorrow hit me at the same time. I was left speechless. A simple thank you so very much came out of my mouth as a wave of grief hit me. How is it that MY son....the son who fought so hard to live, have a "shorter life expectancy than normal". Does that mean burying another child? Because...if that's the case, life really sucks! A parent shouldn't have to worry about burying a child...let alone 2! And then I think...all those that I have scorned...that have "unfriended" me because of my actions (or lack of) and words? I know I have not been a very great person these last 8 years. I have not completely been there for those I honestly love and...yeah...miss. But, when it comes to a child whom I've had so many ups and downs with...spent many days in the hospital worrying if he would come home...then have to care for him day after day, night after night...more so than a typical child. The lack of respite is to blame...and yeah, I guess, because of my short temperedness and momma bear instincts, I am at fault too. So...Kenny is granted a Wish...and Monday, the volunteers will be out to meet our family and figure out a great wish for him. Please say a prayer that I get through this with no tears.
So this whole Halloween Cemetery Yard is pretty much my project that I threw myself into...momma also needs an outlet for all the anxiety and stress...it just so happens, that I take it out creatively...writing, art and...well...this, creative expressionism...see...I went to college and am using my college terminology...haahaaa.
I feel a since of pride and accomplishment in stuff like this...it makes me...ME!

If anyone knows me...I love the holidays! So to use my creative ideas for our boring, bland side yard....I just HAD to make it into a graveyard! I still have more to do, but 2 weeks before Halloween...this is what I have. I just put in the green (and red for the pumpkin rot) lighting, and added the webbing! LOVE IT...and hope you do to!

Friday, October 16, 2015

Paper mache project continued...and the yard is transformed!

In my last post, I left off where I coated the pumpkin heads with a asphalt filler and sealer. Yeah, I was having issues with it cracking and then with the paint sticking...so I am thinking that it wasn't the best idea...buuuut...It is very sturdy.
After allowing them to dry, I got to work with what I love to do...PAINT!
I used acrylic paints...just typical craft store paint. I used a bright orange, a few different shades of brown (light and dark), a few different shades of green, a shocking blue and white. important to know...I used a dry brush method of painting. This way, it captured all the texture of the pumpkins. Basically, you start off with black and you gradually build up the color...do not just slap orange paint on it and call it a day because all the hard work and extra steps to create such a texture-realistic pumpkin head would be tossed aside. Take your time and let the paint dry before adding the next layer.
In these first pictures, I added the blue first, then the first layer of orange and green/brown. remember, the key is to start of darker and get lighter as you build up the layers of color!
This is what final look of my pumpkin heads. Everyone is different as to the color choices...personal preference. I'd love to try one that is more bluish with a touch of orange...ah...next year! haahaa
Anyhow, when they dry completely its time to attach them to what I made them for!
The larger one...
 goes on this creature...
 We secured it with screws/washers and wood that we placed inside his head and under his head to keep it from ripping off the neck.
The second head went on a scarecrow type thing. I was going to put a burlap shirt on him, but decided to go for a more "natural' look...
After I got the two main guys set up, I started with all the other props...
I am still not done!
I'm working on a few more "larger" items to place in the massive haunted graveyard, adding more tombstones, spider webs and spot lights!
...again, to be continued!


Sunday, October 11, 2015

First attempt at paper mache halloween decorations

This year, I decided to try everything once...get your head out of the gutter...I'm talking crafts, house projects, gardening...things like that! Now...you all remember that I am a thrifty shopper AND I LOVE Halloween. I clip coupons and try to find the best bargains...I mean, with this size family, I have to do something! ha-ha...anyhow, I bought tons of Halloween decorations last year after Halloween, at the different stores...all for 75-90% off...

I thought to myself....with all this store bought decorations, I might as well make a few more bigger things to go with all this...so I did (with the help from my hubby...yeah, we work great as a team)!
I first went on Pinterest and found what I really wanted to make. Something towering and scary to put in our yard...a "main object" to work from...
THIS was it!!! I wanted this guy!
my hubby and I put our artistic brains into motion and this is what we were doing...

we used a lot of 1x2" and old wood from a junky bunk bed. Screwed them together and started to wrap some disposable bed pads (the extras from Kenny's supplies we get) and duct tape...lots and lots of duct tape. For the fingers, shoulders and ribs...we used rolled up newspaper and more duct tape. our finished product...

We spray painted the whole thing with a flat black and brown and added the mesh stuff you can get at the dollar store in the Halloween section.
All we needed was a head. Hmmm....
I looked and looked and couldn't find anything that would go with this great creature from beyond...sooooo...
You tube was my best friend. I ended up deciding to make a HUGE A$$ scary Pumpkin Rot head out of paper mache.
It was a looooong process that has taken over a week to work on...and it cost? not as much as I thought, but it used A LOT of glue.
I started off with garbage bags filled with newspaper. I tied the bag up with twine to make the shape of the pumpkin. I then ripped up more newspaper (taking off all the straight edges) and started to apply the wet paper.

Allowing them to dry daily...I applied 6-7 layers of paper...this is what took the longest.
after this, I then started with the stems. I used paper rolled up and duct tape...

Lots of twisting and taping...and adding more and more I came up with stems that I liked.
I then paper mached the stems to cover the duct tape (paint doesn't stick very well to the tape).

I then made a mixture of shredded cheap toilet paper soaked in water. I put it in my food processer to make it into pulp. Put it in a large towel (outside of course) and folded the towel over it and rung out all the water. I then mixed glue and joint compound in with it and made paper clay...so I can add all the details.
I let all that dry over night with a fan...and then I added a layer of brown paper towel paper mache to cover the whole pumpkins...we'll call it their skin!

I guess I could have left them to be at this point...but they wouldn't be waterproof. I wanted to make them even creepier...and stronger...
I covered them inside and out, with blacktop filler and sealer.

They may not look as cool as they did with just the "skin"...but wait till they are complete!
I will be spray painting the insides with neon orange and neon green...then dry brushing layer after layer of oranges, browns greens and a hint of blue (for veins).
The bigger one will be going on the big creepy guy we made, and the smaller one will be a scary scarecrow...like this
So this is what my Halloween project is this year in hopes that I will have "that house" that will make people look at the details of Halloween!
...you know...because...I have nothing else to be doing with 7 kids one being special needs.
...TO BE CONTINUED with more steps