Wednesday, May 4, 2016

Today on Nicks 9th Angelversary

9 years ago today...

Seeing him in the NICU and telling the nurses to keep an eye on him because I didn't like the way he looked. Walking back to my room and then the nurse came in and told me that there was a problem with him. She already called Tony to come down to the hospital. I cried so hard. Rushing back into the NICU seeing the doctors and nurses working on him. Ordering blood transfusion after blood transfusion. Sitting in chairs 20 ft away, unable to do anything but watch and pray. I wanted to throw up, cry, run out of there...anything to not face what was happening. the nurses handing me tissues and water. Just sitting there with Tony. It was three hours...three hours, maybe even longer. I knew in my heart that God wanted him to come home. I just knew it. But I just couldn't believe that my worst nightmare was happening. HOW could it be happening? When the doctors told us that there was nothing more they could do, we cried and cried. He was still alive, do something...anything...dont let my baby die!!!!
They handed him to me to hold for the first time. I held him. I was finally holding my baby.
 He was so little, so light, like holding a doll. But he was real. He was alive right now. He was our baby. Our baby that was leaving us. I looked and studied his face so I wouldn't forget any detail about our little Nick. The way he smelled, the cute little chin that looked just like Kennys, the perfect blond hair...I kissed him and kissed him. He was still alive....cant someone do something...anything. Don't let him die. I held his face against my face telling him it was alright. Uncle John was waiting for you with open arms. He needed a nephew, a baby up there to hold since he's missed out on all his kids growing up and all his nieces and nephews...and his own grandchildren. Nick was going to finally meet Uncle John. I told him that it was alright...mommy and daddy would be alright. Watch over us, your brothers and sisters, your twin. How could this be happening. It wasn't supposed to turn out like this. I wanted your brother and sisters to meet you, they were so excited. They never got the chance to see you.
I didn't even get the chance to hold my twins together, to get a picture of my twins together...the nurses then asked if I wanted pictures of my twins together...yes...God yes...but not like this. I wanted to be holding both babies, pink and fat, bundled up with little hats on their heads...crying and wanting to eat. I wanted pictures of them together playing, sleeping, the first day of school together...all the firsts...together. Not like this. It wasn't fair. My cheeks were red, from so much tears and wiping...I just wanted this day to have not happened...but it did. I miss you Nick with all my heart and soul. When you died, a part of me went with you. I wanted you to be part of our big, crazy family. You made me realize that life is a very special gift. I just wish that we had more time to spend together...but isn't that always the case. I at least got to tell you that I loved you very very much and I know you put up a fight to live...but now you are watching over your twin and helping him get through each day. Its hard, its very, very hard. A parent should never have to bury a child.
I miss you my angel...I miss you.
A few poems that I wrote on how I'm feeling today...

When You Lose A Child

I Visited You Today

Monday, May 2, 2016

Happy 9th Birthday to my twins

I truly cant comprehend that its been 9 years since that day that changed my life. That day that I was so scared yet so excited that I was finally going to meet my twins. I've...we've come so far since that fateful day. It seems like such a long time ago...but on the other hand...just like yesterday. I can still remember every minute of 9 years ago. I can still remember every sound, smell and how I was so, so scared about what was happening...yet very hopeful that my boys would be OK. I had a great doctor and I was in a great hospital...

December 2006 we found out we were expecting...I started bleeding on Christmas Eve and by New Years Day, I thought I miscarried. I called my doctor and asked if I could come in for an ultrasound to make sure the miscarriage was that is what we did. The next day, we went in...I prepared myself for seeing an empty uterus...since I've been through this before. When she put the ultrasound to my stomach, there were 2 sacks! She told us that there were 2 in there and the both looked great!

We were shocked, scared, happy...all in one! Our family of 5 kids was going to expand to 7 kids! GAH!!!! The pregnancy was quite rough since I have had all my babies 6 weeks early, due to a bicornuate uterus, my doctor from the get go was not to happy that I was pregnant with twins. He was very worried that I would miscarry them or have them way too early. He prepared me the best he could for what to expect. Around 16 weeks, I started bleeding...bad. I thought...this is it. I am having the late miscarriage that he was talking about. Turns out, there was a hemorrhage behind baby A's placenta. I was put on bed rest and told me that it would probably correct itself, since they didn't see any other bleeds on the ultrasound. We got very attached to these little guys right off the bat. They were our little miracles! To feel 2 babies move inside of me was so awesome. It was indescribable. Nick (baby A) was on my left and Kenny (baby b) was on my right. I prayed to God every night, that he would bless me with both of them making it through this pregnancy and born healthy. I talked to my boys every day and night...I told them to stay put, that mommy wanted both of them to come home and grow old with our family! When I went in for my 21 week appt. I mentioned to my doc that I was more uncomfortable and "wet". He checked me, sent me for an ultrasound and told me that I was in the hospital for the remainder of the pregnancy. My world was falling apart. How was I to be in the hospital for months when I have 5 little ones at home? So there I stayed... basically head lower than my feet for 2 weeks. I was monitored every day. There, they told me that Kenny (baby b) was now Baby A. He was breech with his feet down by my cervix. By the end of my short hospital stay, I started to feel like I was in contractions but I've been through this 5 times and 2 miscarriages, I think I know what beginning labor feels like. I couldn't stop crying, I was crampy and I had tons of...sorry TMI...discharge. I was given medicine to help me sleep and relax, but I knew what was happening. I was in labor at 23 weeks. The night before I had the twins, the nurses in the antepartum ward knew that I was extremely upset about what was happening, so they called a doctor from the NICU to come in and talk to me about what to expect. Scared the living daylights out of me! Because I was pregnant with twin boys was a negative...girls tend to do better than boys. Singletons do better than twins. If I could keep them in a little longer, that would be good...23 weekers only have a 17% chance of survival. All the problems, "what ifs", statistics and reality was just too much for me. I just cried and cried and prayed. I have never felt so alone in all my life. I spent that night just feeling my boys move inside of me and talking to them. Not knowing that that was the last night that they would be part of me, inside of me...I was protecting them, doing what a mommy was supposed to do. The next morning, May 2, my doctor came in and asked me how I felt. I told him that i honestly felt like I was in labor. I called my husband, Tony to please come be with me because I just wasn't feeling right. With my husband by my side, my doctor checked me...called for the portable ultrasound machine and told me me that Kenny's feet were in the birth canal and I was already dilated to 4. There was no turning back...He was going to perform a c-section right away. He kept telling me that he was sorry...when a doctor apologies, you know it's not good. I was able to call my mom and dad to tell them that the babies were coming, so they made all the other calls to my sisters (including my twin). At 10:29 Kenny was born and at 10:30, Nick. They both weighed 1 lb, 7 oz and were just under 12" long.I was able to see Kenny, but they took Nick right away. I couldn't get over how small they were. I didn't get a chance to see them afterwards because I was in recovery. My oldest sister, husband and best friend were there. I was just kinda numb. I couldn't believe that they were out of me. I couldn't protect them anymore, I couldn't feel them move inside of me, talk to them to tell them that it would be alright. My twin sister did an amazing thing. She is living down in Alabama with her family. She didn't know what to do, so she called my church and asked for the priest to go and baptize the boys. So my priest was also in recovery with us...ready to baptize them and be there for me if I wanted to talk. My husband, sister, friend and priest all went to the nicu and baptised them. Those first 2 days after they were born, were really a blur. I had my daughter's communion that I was making her a headpiece for, while I was still in the hospital. I was getting flowers, cards and calls of congratulations...yet, I couldn't get too excited.

9 years later...
I have cried more tears than I could ever think possible. Every year around this time, I go in to ultra anxiety mode. Nothing, yet everything triggers it. Heck, from mid April through mid May is just a very sad time in my life. The feeling of no control, of not being able to hold my Nick who should be here. The feeling of "what if" I could have held them inside of me....even if it was for just a few more weeks...would that made a difference in outcome? Would Kenny not have so many health and developmental issues? Would Nick still be here? Would I be a different type of mom...a better, more relaxed and happy mom? I have threw these thoughts around in my brain...along with guilt, anger and yes, even some happiness, throughout these 9 years...and from what I'm told, I will do this the rest of my life, but I am OK because life has blessed me.
Through it God has blessed me.
Happy Birthday Kenneth John Tomecko and Nicholas Edward Tomecko. Mommy loves you both so very, very much.

I have to throw this in. 
When my brother passed away 30 years ago, lights have been going on and off...street lights especially. When they do, we always say hi to brother. We all feel that its him trying to let us know that he's still "here"....for those that dont believe...this adds comfort to us...
anyhow, This morning I was getting ready to make coffee. I noticed that the dishwasher door was open...about 4 inches. I was walking over that way to fill the pot with water from the sink, when all of a sudden, the dishwasher started beeping...over and over again. I actually said out loud...(with a huge smile on my face and the hairs on the back of my neck standing up) Happy Birthday Nick. Thanks for letting me know you're around! Little things like this make it easier to function daily life. I can only hope that that beeping was in fact, Nick letting me know he was around me on a very hard day for me. God...I really really miss him.

Monday, March 7, 2016

Kennys speech therapy is paying off (videos in post)

We are finally seeing and hearing some substantial words and signs from our little guy!
This morning when I woke him up for school, I didn't have to say a word. I tried something different...I used some signs and he signed back to me...I'm sure he felt very connected to me as I did to him at the time. 
I wanted to show a few different videos that I took of him this weekend.
The first one was one that he was sitting at my desk and turned on you tube (I have it in my favorites for him). I was wondering what he was doing in there...there was a whole lot of babbling going I got my phone out and snuck up on him...and this is what I got:
And the second one...where he is actually saying "mom...purple farm".
The only reason why we started putting the two words together is because he was showing me an animal cracker...he signed the words cracker and dog (when the cracker was a horse)...and then clear as with the sign for it (which is like a farmer wiping his chin)...Kenny does many signs with his own twist to them! 
I am especially proud of him because he is finally using an end sound...and for him...its been very slow to learn!
So...with this post I want to shout out to Kenny's teacher and speech therapists at his elementary school
and at the hospital where he goes! They have done so much with him. Much more than I could have ever imagined...and for that, I am beyond grateful and my heart full of love for everyone that is working with Kenny!


Thursday, March 3, 2016

I found the right balance...

As my blog post title states I have found the right balance...
The right balance in cleaning and getting in that exercise workout that you might have missed...or if you are like me, did...but then the day began and I started to look around at everything the kids left for me to clean...soooo...that's what I've been doing all day.

OK, before I get to my story let me give you a little background. When we first bought this house 2 years ago, we went out and bought all new things to clean the house. My favorite was my Shark Steam and Spray Mop. With a little press of a button, I knew my floors were totally sanitized and clean. It took me all but 5 minutes to clean the floors without even putting much energy into it....and our floors get NASTY! 
Fast forward to the present time. Because I over-use everything...I mean, I  wash at least 5 loads of clothes a day, sweep and vacuum the floors several times a day...well, you get the idea. When I use something, I wear it out! steam mop decided back in November...yes...way back cr@p out. My twin sis and I tried to fix it while drinking wine. I need not say anything more. It was in the garbage that week. So since then...again, don't judge...I've been using the "wet a towel and wipe the floors" method because I wanted to save up for another steam mop (which still has yet to happen). My husband was sick and tired of seeing the floors always dirty (Kenny's not really steady carrying cups and bowls), so he ended up coming home a few weeks ago with a yarn mop. I actually yelled at him because of it! There was no way on gods green earth that I would ever use one of those...and it ended up in the back of our pantry...
...and now we come to today. I have been stressed out from everything. When I get stressed, I clean and organize...everything. 
I got the pantry straightened out and the floors swept, but the floors I had two options: wet a towel and scoot the dirt off or use the dreaded yarn monster. 

It actually worked. I put my plastic gloves on and went to town. 
This is where my title to this post comes into play!
I found the right balance of cleaning AND exercising WHILE CLEANING! Just get one of these bad boys! Holy smokes, I worked out this morning for a good 60+ minutes and another 25 minutes of upper body and abs (suck in the gut while moving the arms) in my day! Not to mention...
my legs...
Scooting around the floors with a towel...BINGO! I got an hour and a half workout under my belt for today!
So, any one that wants a great workout to make yourself look and feel better...AND get the house clean...go this route! A $2 yarn mop from the dollar store and an old towel!
I owe my hubby an apology for not thinking of me (or me picturing him...picturing me as Cinderella with that nasty mop) when buying a cheap household cleaning item! He was thinking of me all along! I am going to have that bod that I am striving for...well in advance than my goal, thanks to him! 

Clean house...(worked those muscles)...Clean mind (unless...ah...nevermind ;) )!

Wednesday, March 2, 2016

a Kenny update...

I really have been very vague and off topic when it comes to Kennys heath and updates...or none at all since sometimes its quicker to post an update or a feeling on Facebook or Twitter as to whats going on...they really need to figure out how to get a blog to post a FB or Twitter update....that would be a very happy medium for me!
So I first want to start this post with all the issues that Kenny is facing still...after almost 9 years of being born at 23 weeks gestation...which claimed the life of his twin brother, Nick....
BPD Bronchopulmonary Dysplasia
Immune compromised
 is on the Autism spectrum
 Gastroparesis (slow emptying stomach)
is supplementally fed through a feeding tube in his belly (we also give his meds through it)

and a has a rare chromosome abnormality 17p13
Every morning...its the same thing. Kenny has to bring down EVERY doll and stuffed animal and set them up, say goodbye to each one when he goes to school...
then, when he goes to bed...they all have to get set up in his bed.  Its like groundhog day. Today, I just decided to leave them all set up. lol
I have also really getting serious about couponing. I have saved TONS of CASH by just couponing. I extreme couponer, but I do stock up with a good deal when I find one...key is to buy multiple papers and spend a day matching coupons to sales...which I am going to explain more in another post! But in the meantime...I have Kenny "helping" me by cutting the printable coupons (which are really just the ones I don't use...but I can give him something to do and he can work on his cutting/hand coordination skills!
 Shopping to stock up...
We also decided to finally give Kenny a haircut...SO.MUCH.BETTER! 
 As you see, he also got back his hearing aid that he broke...and is loving it. Now if we can just keep him from breaking or losing them!!!!
And...we also decided to end an era...(I'm a little sad, but it was time) to turn in our Green Machine for something that can actually handle the winters up here in N.E. Ohio
A 2007 suburban!!!
Time to have hubby start with the new set of stick figures! haahaa

And on that note...IT has been a crazy year...not much blogging, but with the new year and my vow to do several things for myself...
1)get rid of negative feelings and thoughts
2)embrace life and those in mine
3)accept what comes...
4)make cupcakes, plant amazing gardens, Gloat over my kids and hubby and their accomplishments and make awesome holiday decorations.And draw, paint and craft with the kids more,
5)helping others...which in turns makes me feel better
6)enjoy and make time for my family and friends
7)live to feel human again
8)learn something new every day (even if its just something tiny)
9)get fit and healthy...not lose weight...but gain muscle and endurance (I will not grow old at age 46). At this age, I have decided to not be sad and miserable in my own thoughts and feelings as I am feeling the effects of thinking 46 is getting old. I don't want to have to rely on meds and alcohol to make me happy...working out and lifting weights is an amazing euphoria!
 I did it all through my teens, twenties and most of my 30's...why did I ever stop?! 
10)Update this blog which really needs it
11)Get these kids grown up and ready for life. With one graduating this year and another graduating is crazy!
12)find my dang phone that Kenny took and put somewhere!!!
( say...I FOUND THE PHONE! It was in the bottom of a closet. I found it when I was looking for something else!) 

Reality hurts....I mean...hits

Non-eventful day here at the Tomecko house. The typical try to wake the kids up, get them to school, spend quality time with hubby (aka breakfast at out favorite local restaurant), my one hour of "me" time that I've been doing for over 4 months (but used to do it daily throughout my 20's-30's) 90 minute workout...woot! I am usually starting my cupcakes for the church's fish fry today, but today I was a little lazy and chose to do it all tomorrow. I have some great cupcakes that Ive been making for the last 3 weeks:
 Dark chocolate raspberry truffle:
 Boston Cream:
 Cleveland Cassata:
 Red Velvet:
 Chocolate Chip Cookie Dough:
so...yeah...I have my work cut out for me.
I even made a bunch of cupcakes for the Playhouse Theater and Il Volo, when they came to town.
*side note: The girls and I finally got a night out. I have never had a night with just my daughters (plus my niece, whom I consider an adopted daughter)...ever! So this was a very special night. We all got dressed up and enjoyed great"popera" music, while my hubby watched Kenny!

 We cleaned up pretty well...if I don't say so myself.
...So anyhow, getting back to today...I went to Kenny's ETR meeting. For those of you who don't know what this is, its an Evaluation Team Report meeting. Basically, its where all the specialists that work with Kenny get together...before his IEP meeting (in a few weeks), to go over their findings and evaluations/testing that they have done on Kenny while he's in school.
As I write this...I am enjoying a glass of red wine. Oh...forget it. I just had to take a few minutes from writing to unglue Kenny's fingers from one of the girls nail glue that Kenny got into. See...its a never ending watchful eye!
Back to Kenny's evaluation...and to why I have this nice half full glass of wine...
So the evaluation went well. We were all on the same page in terms of what he is learning and will be learning. What got me and always gets me...year after what he is doing and at what developmental stage/age he is doing them at.
Here, I have this almost 9 year old little boy who has come such a long, long way from this:
  He is on the moderate to severe end of hearing, what I thought was more of a muted, underwater sound in which he hears, is actually more of just a few consonant and vowel sounds here and there. I honestly had no idea that this is how he hears without the aids. So all those months of him not wearing his aids because he broke them...he couldn't understand what we were saying...and lost a lot of learning in school because of it.
On one hand, he knows over 20 signs, knows some of his colors, can count to sequence...most of the time. He can walk up stairs unassisted, and much more.
I also heard that everybody in the city knows Kenny. He is very popular at the surrounding schools! 
I was hearing all the great things Kenny was accomplishing while in school.
He really has a great team working with him. 
In my eyes, he really is a miracle from Heaven.
I am so honored and blessed to be this little boys mom.

On the other hand, I have the hard realization that the doctors were kinda right when they told me that developmentally, he'd be half his age...all his life.
Yeah...this is the part that is hard to swallow for me. I've been on the brink of tears since the meeting. At the meeting, I was supermom...I got into the car and it hit me like a ton of bricks.
Don't get me wrong, I really took in everything great he was accomplishing in my heart.
He is really striving to be the best he can be. He really wants to learn and is working so very hard. Just, part of me thought that I'd prove all those doctors wrong. They cant tell me that my little boy, who fought to live, is going to be learning at such a slow pace with such a low dare they! I still want to prove them wrong...but today, I am feeling defeated (just for the time being...see...still a little bit of left in me).
The tests and evaluations are showing that Kenny is between the ages 22 month-4 years developmentally in several different areas. His ataxia is showing more as he is getting older as well. He gets very shaky when he is trying to do something. He still cant write, he is using all sorts of sounds, signs, gestures and pictures to communicate...which is sometimes still very hard to understand. Its a lot like charades on an hourly basis here! hahaha. 
He still switches between his left and right hands as his primary hand to use (now...I am very insistent that he is actually a lefty...but they're insisting that they want him to use his right, that's what they're making him use at school.
I am just letting him use whichever hand feels the most comfortable to him.
His attention span is very, very short, so the PT at school wanted to dismiss him until he can concentrate more on working with him. Which I can totally understand. He is wasting her time and is cutting into his learning time when at PT and doing nothing.

The evaluations, as a whole really explains why we feel that he is going through the "terrible twos" here at home. He has been putting holes in the walls by slamming the doors back against the walls. Getting into everything...I.mean....EVERYTHING. I cant take my eyes off of him even for a moment because he's either cutting something important up, scribbling on it furniture, walls or important papers. Emptying Rubbermaid bins that hold either shoes or lets say...cherished items from my past that hold lots of meaning and memories...all over the back room floor so he can put all his stuffed animals in and carry them downstairs to set up...
...or even deciding he's going to make himself...
Its a never ending worrisome job Tony and I have. The meltdowns that he has when he comes home from school or gets ready for school...has made my blood pressure go into the high range...and it has never been high. It honestly is the hardest thing, next to burying Nick, that we have to do. 
Like I said earlier, I feel so, so...sooooo blessed to have him in our lives, but our lives and the rest of our kids lives have been on high alert for so long, that I don't think we know how to just breathe and relax. We are a big, loud and very stressed out family. LOL.

In closing, we are very fortunate that (knocking on hard as I can) he has not been sick this winter...which is amazing! At least that little bit of stress has been erased for a bit! We will continue to work with him to read, write, learn and behave as much as a typical child as possible. It is getting harder as he is getting older because he doesn't know personal space and love to hug everyone he meets. He clearly is starting to show the developmental delay...and to me, its sad because I don't want people (strangers and peers) to look at him differently...but I see it happening more and he gets older and older. I know how cruel life can be and its eating me up that his pure heart might get hurt because of being made fun of for being younger (developmentally) in an older body.

I sometimes used to question my parenting abilities...but now...I am always question my parenting abilities with raising a special needs child, along with 6 others (from an 18 yr. old down to 7)
I...we love them all so much and want the best for them. We've never really gone on a family vacation together...and because of that, I am sad...and wish I could turn back time. With so much that has happened with Kenny, it has been pretty much impossible to even think about going out to eat at a restaurant...let alone a family vacation for a few days to a week. I know the kids resent us for add another stress-er to the mix! haahaa!
I want my kids to become adults with great big hearts and love to share. With a faith that wont shatter and the ability to live a well balanced, financially stable life from honest hard work. Not to mention having a very close family at hand...immediate and is so important to us that our kids are close with cousins and aunts and uncles...and never lose that bond!

My husband and I are tired...very, very tired from this journey that we are facing alone, but will never give up on any of our kids.

Monday, February 15, 2016

Kenny dressed himself...(dear us all)

I have got to share a funny moment brought to you by Kenny. 
I got him dressed in his grey jeans and a green sweatshirt. I told him to go upstairs to get his shoes so we can get ready and go to his audiologist appointment. 
This is how he came down the steps. 
I am beyond grateful and full of joy that my son is using his own mind and getting himself dressed...buuuuut...
this made me laugh.


Saturday, January 9, 2016

What I've learned by age 46

As I was growing up, I couldn't even fathom the idea of me being 46. But I am! I mean...the 26 yr old me was living life as an almost married woman who just bought her first home with her hubby to be. Fixing it up in all whites and cream colors.
The 26 yr old me had dogs, not kids...and I was good with that. I knew how to take care of dogs...puppies even!
The 26 yr old in me worked out daily...running, weight lifting, crunches and more...not having to worry about my weight...only to feel good and keep my figure looking good in my wedding dress. Heck, the 26 yr old me had a 2 seat sports car that was my baby!!!
As I got a little older...the 36 year old me had learned about being selfless.
Oh how I lost myself in my selflessness! Bedrest for most of the 5 babies I had...and learn how to deal with the harsh reality of a couple miscarriages.
How we went from an all cream colored house to adding dark cover up the stains...haahaaa
I learned how to change 2 kids diapers at one time, how to survive on 3 hours of sleep, but still have energy to take all 5 kids to the city pool to have fun.
I learned how to totally love being a mom. Not only a mom...but a stay at home mom. I sort of lost myself in that respect too...but...I wouldn't change it for the world!
I learned how to make huge dinners to feed a family of 7, I learned how to make the most of a little house and a big family. I made friends through my kids friends parents...which...was a fun, exciting time.
I learned how to go out once a month with the girls...because everyone needs that time off from daily routine to be a human and not just a robot carrying on life.
These were the best years of my life. Everyone around us was young, healthy and thriving.

Then I hit 46.
It hit like a ton of brick, to be honest. We added 3 more kids to the mix since my 36 year old self was in the limelight...and parents are in their upper 70's with some health issues.
At 46, I learned that life is a gift. But a gift on, its kinda like a library book. you get this new it and then...its due back. But instead of just returning it, it just disappears. Gone. You don't get it back...there is not even a renewal of the loan in which, you didn't even finish reading the book.
My 46 year old self has learned that after the first 3 miscarriages, I had to look at them as a clinical thing rather than a child/dream still hurt, but it made it easier as I had 10+ miscarriages. But in that timeframe of 36-46...I also lost a child which in turn...took a piece of me with him.
I learned to hit the lowest of lows. The depths where not many moms have gone...but only if you're not looking. When you become part of this new life of having lost a child, bereaved moms seem to be everywhere...people just don't talk about it much because of fear of bringing someone down or something...I honestly don't know. Seems to be a tough subject for most.

I learned that pregnancy is a beautiful and joyous time and those that are, should never take it for granted. I honestly miss it now that I am getting up in age where it is pretty much impossible to have an ewpsy...because that means...IM GETTING OLD.

I learned that parents cant and wont always be able to be there for you...not because they don't want to...but they cant. So with that, I also learned that a phone call a day helps...even if its just for 10 minutes...and to always say I love you.

I've learned that there is something in the universe that ties numbers to life...
Nick passed away on May 4th...
for years, I've seen this...
and I guess, it has something to do with angels.
I learned to rehab a squirrel...I recommend everyone rehab a wild animal in your lifetime...its a very rewarding (and slightly, time consuming) experience.

I learned that friendships don't always last and its ok.
I learned to forgive, say sorry, and do things I don't want to do...but in the end, feel better for doing it.
I learned that moving sucks...not only from packing and unpacking...but because of all the memories you share in a place you've started your life...your family...
I've learned that if you really, really want have to really, really fight for it. Sometimes it works out...and sometimes it doesn't...but you can at least say, you tried your hardest
(example...the fight it was to get the foreclosure we really wanted)
I've also learned that just because a person has a big house, does not mean they are wealthy...just lucky and persistent and probably 50% Italian (because we are loud and crazy like that)!
I've learned that laptop computers cant be in this house because they will be broken within 6 months and that and over abundance of coffee that I started drinking in my 30's has carried into my 40's.

I learned that teenagers are never happy and will blame you for almost everything. But I have also learned that having high school aged kids is really, really fun despite being hated and told that I shouldn't have had so many kids. haahaa yeah...whatever

I've also learned that my life would be forever changed...not just from the death of a child, but from having a child who is special needs/chronically ill.
I've learned of the word "retarded".
For age of 46 doesn’t mean saying the wrong thing to a person.
It doesn't mean fighting with your siblings, going into each others rooms without permission.
It doesn't mean forgetting to send out Christmas Cards.
It doesn't mean typing a grammatical error on social media.
It doesn't mean not wanting to play with your playmate at school.
It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk, or even cut yourself on a knife or broken glass while doing dishes.
It’s not something to describe your printer, boss, parent when mad at, a phone or even a burnt out lightbulb that needs replacing.

For me, at age 46, it’s not just any word, its my son.
My handsome, quirky, happy and lovable little miracle who is - slow or limited in intellectual development and academic progress...which is what the dictionary says "retarded" means.
Ive learned (and hopefully teaching my kids) that being retarded means something different. It means not being able to fully care for yourself...yes, that includes diaper changes and wiping of the butt for an almost 9 year old. It means not understanding why you have to go to the doctor and specialists so much...or even why the other kids don't have to go at all (except for well visits).
It means not being able to explain what hurts when something hurts...and even not being able to shed a tear because you don't know if it hurts THAT bad (when it does).
It means not being able to read, color in the lines, do 2nd grade work, ride a 2-wheeler, or ever be able to live on your own.

Kenny may have cognitive issues and delays. He may never live on his most likely will never live on his own.
But my son is a smart kid. He has more self-confidence than anyone I know who’s called themselves “retarded”.  He is the best judge of a person’s character than anyone else I’ve ever known. 46 yr old self has learned that a curse can be a blessing in disguise. I am allowed to have my good days and bad days. To be able to vent to family, friends and on social media if I want. That what I am experiencing is my life, my feelings, and what I make of it is up to me.

I've learned that raising a micropreemie with underlying issues is scary. I thought we were done with scary issues when we left the NICU...nope.

I've learned to deal with seizures, feeding tubes, hearing aids, breathing treatments, autistic meltdown, and hospital stays.

I'm learning sign language...that counts as learning another language...right?

I've learned that getting approved for a Make A Wish is a sad and happy thing...all mixed together like that bin of mixed bulk candy. Some are good and some...not so much. Knowing that my son is approved for a life-threatening illness dream wish is a very hard thought to handle...I don't want to bury another child...but then again...I want him to have the best life moments ever and to be as normal as possible for the time he is with it long or loan from the big library in the sky.

I've learned that I can kinda understand my son who babbles away and tries to talk with all his might.
I've learned that going to a supermarket, restaurant, school concert or anywhere else that it is inappropriate for a child to be loud and...well...have a meltdown, is next to impossible and that tag-teaming with my hubby is the only way we can keep sane!
 I've learned that the feelings of guilt, anger, fright and sadness are always going to be in my heart and head...but its up to me to think positive.

I've learned that having a bigger house doesn't always mean a better life...just more work to pay bills and clean (side has helped with keeping Kenny healthy ;) )

I've learned that marriage...20 not always glamorous...but it's well worth it if you don't give up, keep the communication open and keep the commitment that you made to God and to each other.

I've learned that couponing...borderline...extreme quite easy, but hard to explain to those that don't do it.
Ive learned to make really good cupcakes
I've learned to grow zuchinni...don't laugh...I could never grow them in my 20's and 30's!!!
I've learned that I love gardening (flower and vegetable), decorating, all crafts and still love painting.
I've learned that I should never have given up on my drawing ability and the want to pursue it in a higher education.
 I've learned that I really do like the taste of wine and to never have more than 2 mixed drinks.
I've learned to do things on my own or at least try to...and if it doesn't work...then call for help.
I've learned that cats actually do make good pets and are not the devil like everyone says.
At 46, I've learned that I can honestly say I like all kinds of music...except for do like the old country favorites that my parents listen to and a few crossover singers songs...but that's about it.

And finally, I've learned that in my 46 years on this earth, to try not to worry about the future because the future is never promised...that life is really too short, so enjoy every minute of it including the stressful and bad stuff....and that life is pretty good...even with all the daily is still all pretty amazing!