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!!!