The Tomecko Echo

Letter to younger self:

2012-01-28T17:22:00.000-05:00

To my younger self....there are going to be times when you get mad at life...school, family, friends, work...whatever...listen to what is actually being said. Listen to both sides...yours and theirs. Apologize when needed and forgive too.

Parents only want the best and care deeply for you. They will worry, get angry and push you...but that is because they love, care, and want the best for you. Remember, there is no instruction book when it comes to being a parent. Keep an open relationship with them because it really adds trust to the mix.
Your sisters are and will always be your best friends. Yes, many will move away, and you will be brokenhearted...but nothing can break sisters apart...even distance! Oh...and a little thing like Face book helps tons!

You will have just a few boyfriends in your life...they will come and they will go...but eventually, you will find someone who will be your perfect match. You will have everything in common...even though you weren't looking...he was right there in front of you...nothing at all of what you were used to going after...but let me tell you...he will/is perfect for you and you will have an amazing life together...good and bad times....but together you will trudge through them...and eventually the hard work and the struggles WILL pay off! Oh...and eventually...your old boyfriends...yeah...um...you will become friends with them again...which is really a nice thing.

You will lose quite a few people in your life to death...not only grandparents...but your brother...and unfortunately...your own son. You will be sad, hurt, angry, physically sick at times and your faith will be tested. Just remember that death is a part of living...no matter what age. Your brother will always be watching over you...every time you see a street light go out....that is him telling you it is all right. Your parents went through heartache but were strong...they had to be...for you and for the family. You will have to be just as strong. See, there is a reason why he passed away...so you can learn from your parents example that life goes on. It will hurt...so bad at times...even years and years later...but you will be alright. It is alright to mourn...if its even all your life...but don't forget to live.

You will have many kids...yes, that's right...even though you didn't want any...you fell in love with your soul mate and well...one after another...you loved being pregnant and loved having each and every one of your 8 children. Don't listen to what others say. You will hear many negatives about having so many kids...even from family....but ultimately, it is up to you and your husband (and God) as to how many kids you want or decide to have. Don't be afraid. It will get crowed, loud and you will lose your sense of you (and sanity every so often) but eventually...you will get that back.

You will give up everything for your kids and husband...you will think twice about this in the long run when times are tough...but promise me you wont give up...I'm still waiting to see if your dreams of a headpiece/bridal shop will ever work out...I'll get back to you on that one :/

You will be blessed with twins...but as I stated above, you will lose one early on after birth. You will have a very hard pregnancy and deliver at just 23 weeks exactly...to twin boys at 1 lb. 7 oz. They will be very fragile and very sick. You are going to gravitate to the one that looks weeker (he was much more underdeveloped)...but surprisingly, 2 days later...the stronger of the two will take a turn for the worse. Your worst fears will happen and you will hold your baby as he passes away. You will be able to feel his soul leave his body and go to heaven...You will be able to talk to him before hand and tell him how much you love and wanted him. Your brother WILL be waiting for him in Heaven...even though you question that at times in your life. You will have to bury him but you will visit him all the time...it will make you feel much better. You will also include him when people ask you how many children you have...so will your husband...because....thats how you both roll. :)

There will be many people that will surprise you following your sons death...someone will buy the plots...yes, 2 plots because no one is sure if your surviving son will survive. There will be very generous people helping you in every aspect of your life following his death. There will also be family and friends who don't quite know what to say to you...so they stay away and you will lose many friends and contacts...please don't let that bother you too much, its human nature. It will hurt, deeply...it will hurt that many people wont think of Nick as a baby...but more as a miscarried fetus..but you will have pictures, clothing and foot/hand prints to show them otherwise! You will find the courage to make a very touching and beautiful tribute to your twins...and may people will see it.

You will have a long, hard road with your surviving twin son who will spend 129 days in the NICU. Many of those days are filled with the possibility of him not making it...but please keep the faith...he has his twin angel watching over him...he will survive and he will come home.

The years following the whole NICU mess will be even crazier, so please...younger me, stay strong...this is where the hard part will take place.

There will be operations, medical equipment, procedures, doctor appts, therapies, tons of hospital stays, medications and even some pretty scary seizures. He will be developmentally really behind, have immune issues, will have severe hearing loss which will require him to wear heating aids. He will have feeding issues and you will have to retrain how you think in terms of trying to feed a child...dont be afraid of a small thing called a g-tube. The thought of it is scary and kinda gross, but you'll totally get used to it! He will also be diagnosed on the autism spectrum...again...by the time he gets this diagnosis, you'll already know. Please don't get so frustrated with his grunts and non-verbal babble...ok, and yelling...he's just a kid who's trying to communicate or let off some energy. He will need your 100% attention and at times, you will want to give up...ok...you will want to give up many times, but keep in mind at the fight and struggle he had to endure and will endure the rest of his life. You will feel sad that your son is not perfect. You will always worry about him passing away from one if his illnesses or from his chronic diseased lungs which didnt fully develop because he was so early...or from the cyst in his brain....the list goes on. You will then worry about your healthy kids and feel guilty about not giving then 100% of your time as well...rest assure, they will be fine. They will all be amazing adults with a great outlook on life. But because of all of what you've been through, you will have some post traumatic. I wont lie. It will get bad...really bad. The unknown is always the scariest...but please don't give up. Your kids...all of them are watching you...taking notes...planning out their own futures. Try not to get so angry or down at life...someone else always has it a little worse. Even after several miscarriages throughout your life...stay positive.

You will become a special needs mom and your husband will have a lot on his plate as well...with working to support the family and yet helping you with the kids. He is a good man...don't forget that.

Don't hold grudges towards people that tried to hurt you and your family...they "thought" that they were helping...when all they would of had to do was ask and talk to you both, rather than come to their own conclusions. Everyone has their own demons they are battling...so don't take it personally...they are only human...you will eventually prove them wrong anyhow....and then things will quiet down and move on. Younger self...its not worth holding anger towards others.

Younger self...there will be much that you will be doing because of what has happened in your life. It may not be what you expected or wanted...but helping others in the Hospice program, making a non-profit t-shirt program for micro preemies and kids with chronic illnesses, baking cupcakes, working with the March Of Dimes...and there will be more that the future holds for you. So please don't think that this all day, everyday stress of a special needs child is not making something out of you...other than tired and sad. Eventually things will fall into place...in its own way and time....just keep an open mind and a lot of love to give to others.

And finally, younger self...don't be scared....because I know you will be..as I am now.

IPad apps for kids...

2012-01-27T08:43:00.001-05:00

To all my friends and readers: I've had such a hard time finding good quality apps for Kenny (and the rest of the kids) to use and play with...that is...until Kenny's wonderful teacher told me about Free Friday App Day. Every Friday there are some site that share free apps...but only on Fridays! I couldn't get over all the wonderful and actually really good apps for the kids for the iPad or the iPod touch! I want to share this with you all so here are a few of the links...which have even more links inside them! Enjoy and Happy Friday!

http://iheartthisapp.com/price-drops-for-apps-for-kids/

http://momswithapps.com/

http://iheartthisapp.com/get-great-paid-apps-for-free/

Life stresses

2012-01-23T22:01:00.000-05:00

Yesterday started off bad and just kept getting worst....eh...let me backtrack a little...this whole past week & weekend were pretty bad. Personal stuff and the stupid stomach virus that got 4 of the kids. Then you get the kids fighting between themselves, not helping around the house, me not feeling great...and Kenny needing 110% attention. It doesn't make or a very happy me.
As you know, we were trying to get EM:HE to come to our house...and we were thisclose to it happening, and we already know what the outcome was. We also now know that the show was cancelled, so that big pipe dream (that almost happened) is no longer...which is no big deal, it just means that we will do it on our own. It made us that much stronger, in that aspect. Fast forward to a few days ago when I saw an ad for county funded money to help fix problems within the house of small kids or a house where there is a child with disabilities. Ding! A lightbulb went off and I contacted them. We are having them come out today to see what needs repair in the house. I am praying they can help us. It would help us out so much!
The other stressor in the life if Michele is the fact that we are going to be going to Kennys school this morning for a meeting with his teachers for kindergarten readiness. It finally is hitting me hard that my son had disabilities and delays and that he is almost 5 and not at all ready for kindergarten. It makes me sad in one aspect, but proud of how far he's come. I mean every mother wants their child to be just fine...go to kindergarten, make friends, and just be normal. The reality is sinking in as he is getting older, that he is not a normal kid, and it breaks my heart. Everyone can say comments like,"he's so smart...it's just gonna take some time" or "at least he survived" (which is true) but sometimes I just cry at the fact that instead of talking or telling me what he wants, needs, or feel, he makes "ah" sounds and babbled or yells, making no words just sounds. He doesn't know how to talk let alone his address, he doesn't know how to hold a pencil, doesnt know how to use utensils, he is still in diapers (but on a good note with that...he kinda let's me know when he peed or pooped by holding his bum with his mouth opened really wide...so it's a start). It just has really hit me like a ton of bricks that my son, whom I prayed over, taken care of, play with to help him learn and spend 110% of my time with, is not ready for that next big step...kindergarten. I have turned this around on me and I feel that I failed as a mother for not doing enough for my son. I know that that is stupid thinking, but being a mom IS my job. I gave up a career that I loved to raise my kids...and now...between the kids fighting constantly and Kenny...I have a slight feeling of failure.
Well off to to the meeting. I'll post how it turned out when I get back.

Ba-freaking-humbug..:(

2011-12-21T19:11:00.006-05:00

‎6:55... I'm done going to bed an wishing this day...no, this holiday season...no, the whole freaking year would end rather quickly. Screw making cookies. Sucks because i loved Christmas time and now too down to even care.
Always stuck at home, only to go to dr. Appts, therapies...etc. I know this is the life god chose for me...but geeze...it kinda blows! I have PTSD from the death of my child and the ups and downs of Kenny's health struggles....I don't get to hang out with friends...ever, and I really want my life back...you know, making T-shirts for micro preemies, making headpieces/jewelry, drawing...I lost it all. Has nothing to do with how many kids we have...it's about being a caregiver to a sick child with so many different needs...from Autism to feeding issues to giving him his Meds.. My life right now is his life. I love him and all my children with all my heart and soul....and would and have given up everything for them...but I'm just bummed. I wish I had my twins here. I honestly miss my nick so much. It wasn't fair that god called him back so soon. I wanted him and never had the chance to be his mom! This is the first year that I didn't put up my angel tree...not that I didn't want too...but as I was getting all the ornaments from the container...all the angels were broken. So was my heart.
I know this post is a Debbie downer, but I have always written what I feel.

Hen a huge shout out (NOT) to Toys For Tots. just have to say...the system sucks!!! There are tons of people abusing it when there are true people in need!
Something is just not right when people standing in line to get a few toys for kids, who are supposedly too poor to buy their own, pull out iPhone, etc. The conversations that were heard were about how this one woman was getting gifts for her 10 grandchildren (whom doesn't even live with her), another guy was on his phone getting SSN from whoever and writing them down...as he was telling the person on the other end that he was going to get these toys so he could sell them!!!! This has got to change! Oh...and these people were every year regulars! They know exactly what to do...even brought big garbage bags to put the toys in!!!! shouldn't there be a limit? Shouldn't they look at the documents of income, birth certs, proof of residence...etc like they ask you to bring? I don't think I can ever get myself to donate to anything like this ever again...ba-humbug! It has really ruined my outlook on things! I tried calling the head of the organization AND the news stations but no one cares. It's another reason why I have lost my holiday cheer!

Gingerbread house building 101

2011-12-16T09:00:00.002-05:00

Kenny's class had their annual Gingerbread House Party where the kids and their parents make gingerbread houses together. It was a great opportunity to get the parents and kids together for the holidays and also great to show us the skills they have learned...opening wrappers, frosting and pressing...what a genius his teacher is! Thank you Mrs. Schneider for another wonderful class/family day! We missed it last year because Kenny was in the hospital, so this year was even more special!

Daddy putting Kenny's hearing aids in... Gina showing Kenny's teacher that she is soooo ready for preschool...maybe even kindergarten with her frosting spreading skills...
The houses are finally taking shape! Kenny was a little preoccupied by everything other than the gingerbread house haha....

Time to put the candy and decorations on the houses!

Kenny really liked the taste of the windows...er...uh...I mean...pretzels...

Showing off the finished houses! True masterpieces!

Mommy's and Gina's house...

Daddy's and Kenny's house...

They turned out rather cute for first timers on gingerbread house building.

16 years of good times and bad...

2011-12-15T22:00:00.012-05:00

Sickness and health, richer and poorer....and, well...we pretty much have been there, done that. Where did those sixteen years go? I still remember everything like it was yesterday. The engagement, the planning, the designing our invitations....the wanting to have our wedding close to Christmas because it was our favorite time of year...not to mention all the beautiful decorations, greenery and lights everywhere! It was perfect! I was working at a bridal store so I picked out the perfect dress...of course I had to make it my own by adding long sleeves and an even longer train. Picked out just the right brides made dresses for all of the girls in my wedding party...because...god knows...we had one heck of a bridal party!
I remember getting ready in my bedroom the morning of my wedding thinking...wow...this is it. And yes it was....true love! The way he looked at me, talked to me...just us being us. Having so much in common couldn't of been a fluke, could it? I mean, I never really looked at blonds before, but something about this boy made my heart skip a beat. We both were artists, both were twins, both came from families with 7 kids...but just the opposite (we had six girls and one boy and he had six boys and one girl). We both loved holidays...Halloween, Christmas, Easter....even the forth of July was on that list. Oh...and when a good song comes on the radio...watch out because he could sing notes around most. It couldn't be a fluke, could it?

Walking down the isle at the church and laughing to my dad that the peel and stick anti skid shoe pad just stuck to the runner...and yes, it shows up on the video! ...our first kiss as husband and wife... The amazing reception we had......dancing till they turned the lights on to kick us out... The ice sculpture......the beautiful cake... the Christmas ornaments I made for our favors...and yes, the DJ calling you Andrew rather than Anthony. Sharing our wedding day with the anniversary of Tony's aunt and uncle...his godfather...also meant a lot to us.

I remember being sick on our honeymoon in lovely Middleburg Heights, Ohio...yes...20 minutes from home. Also cutting down our first Christmas tree...it was huge and beautiful...and it was ours! I still have the gifts from the shower and wedding...one of my favorites...the nativity. It's a reminder of why we celebrate Christmas...but also of our life together was just starting off.
Then we found the perfect house...the yard was huge and the house...well...for a newlywed couple, the three bedrooms were perfect...one was a guest room and one was an art studio....but the kicker was the neighbor that greeted us that cold snowy day that we looked at the house. He became family to us. He was like a father/uncle/friend figure that was there for us when we started our married life off...all those years ago.

Who would have thought that me kinda sorta lying to our priest about wanting kids...yeah...I was scared stiff about kids. I honestly didn't think I wanted any...at the time. So in order for a priest to marry you, we were interviewed by my priest...the question came up..."will you welcome children into your life" (or something like that) and while Tony and I had a few moments alone, I told Tony I was going to answer that question with a no. He then quickly convinced me that I should think this question through because he may not marry us for this answer alone....hmmmm...lie to a priest? I know! I'll think of puppies! I looove puppies and would have a house full....kids...not so much....so yeah. I have already gone to confession about this...I lied to our priest. I welcomed children into our lives...and boy did I ever!
Something about actually being married, living in a (at the time) big empty house and, well....16 years later we have filled the same "starter home" quite nicely, with kids from 14, 12, 10, 8, 6, 4 & 3 in our lives along with heartbreaks of our many miscarried babies and our precious angle, Kenny's twin, Nick.

In those sixteen years I became a stay at home mom, Tony started his own business, spent many hours praying, laughed, fought, cried and danced together. It's not where we thought we'd be sixteen years ago, but it's been a great ride. I couldn't of asked for a better partner to share all the ups and downs with. We have learned that even though we have been through soooo much, it has made us even stronger, closer than ever. We've faced death eye to eye in the loss of our son, throughout the miscarriages and hard pregnancies, though short and long NICU visits, first words, first steps, first days of school for each kid. Through raising a special needs son who can be demanding, worrisome, stressful, scary to see the future of... Through debt and also the feeling of paying off a bill...through laughing when something goes wrong because...I mean...how much worse can it get, right? Through late night calls out to the shop(aka the garage/office) to say not to stay up so late...oh...and don't forget the coffee. Through the OMG how do you guys do it, you are so blessed....but also through the criticism of actually doing it! We have lost so many people in these sixteen years but know that each one is watching and waiting for us for a huge reunion. Through dreams broken but new dreams to come...
I am so perfectly glad that these sixteen years happened and honestly...wouldn't change a thing....
Except....maybe...nah ;)
Thank you Tony for the life I have shared with you...the life that sixteen years ago, I said "I do" to!
I love you deeply and passionately...with all my heart. Now I wish time would slow down a little so we would be able to enjoy our life, kids, families, friends and hobbies.
"All these years...and we still have the heat"....name the movie!

Photo Card

2011-12-13T09:53:00.001-05:00

Faith Love Family Religious

Shutterfly cards for Mother's Day, Valentines Day, Birthdays & more.

View the entire collection of cards.

An angelversary poem

2011-12-06T08:27:00.003-05:00

It's been so long since we saw you last...
It makes it so hard to think back to the past.

The family is not the same since you went away
We were lost, sad and helpless on that angel day.

Even after this length of time has gone by...
It still brings me to tears and I start to cry.

Oh what would you look like, where would you be...
If you were still here for all of us to see.

I think of you always, and I hope that you know...
Life here without you for surely can blow.

I know your an angel with halo and wings...
With family and friends, and know many things.

There's one thing that I want you to know today..
I will alway love you, miss you and wish you could have stayed.

Happy angelversary to my brother John.

Update from Kennys PICU/hospital stay...sigh

2011-11-30T23:20:00.005-05:00

Wish I could sleep. I'm at home now from a very long and scary day with Kenny. After many breathing treatments and being on oxygen, his was pulse oxing in the low 90's all day...on top of wheezing. They even tried a vent vest (a vest that is uses to break up mucus in the lungs) because his lungs are just not getting better. I've got a couple sick kids here, laundry and dishes. When I left the hospital, I had to pry a sleeping angel from my arm that he was hugging. He was pulse ox-ing at 87 so the nurse had to up his oxygen even more... I called to see if Kenny's stats went up after I left and...well...he just got done puking...everything...everywhere. So he didn't like the bath he got from his nurse and they are giving him zofran and pepcid and holding off on his feeds for a few hours....if this doesn't work, I'm afraid that tomorrow will be an iv and another chest x-ray. Pleeeease keep him in your prayers. I'm so worried about him on top of feeling helpless and neglectful to the other kids(because of being at the hospital all day with Kenny). Also say a little prayer that I can get through all of this. I am so afraid of losing my little guy. Being a grown up sucks.

D@mn extreme prematurity!

2011-11-30T12:11:00.002-05:00

I thought we were out of the woods, I mean...four and a half years later, I thought we wouldn't have to worry about too much...boy was I wrong! I do know that when a preemie gets sick, it happens hard and fast, so Monday when he was up all night long wheezing and had a fever, I knew he had to get to the hospital. We get there and the "doctor" that took care of Kenny heard he was wheezing...his pulse ox was 93 as well so they gave him a breathing treatment, still wheezing...and sent him home with prescriptions that couldn't be filled because of something written wrong on them. Fast forward to yesterday morning when he woke up and just looked very sickly. After me being up all night with breathing treatments and Tylenol/Motrin to keep his fever away...as not to cause a seizure...the wheeze was still there. I called and they got him right in for a chest x-ray and office visit. In the office, he was pulse ox-ing the very low 90's...when the doctor listened to his lungs, he wasn't moving any air at all. At that time, they ordered back to back to back albuterol treatments...7 total and he was still stating very low and having a hard time breathing. They decided to admit him to the pediatric intensive care unit where they can keep a better eye on his lungs. He, at that point, was put on 2 liters of oxygen...and he was STILL pulse ox-ing in the low to mid 90's. The flood of memories and emotions hit me like a tsunami....to.much.to.take.in. Why? After all of the struggles he has been through...why does he have to battle massive lung issues that could kill him. I lost nick to bad lungs and I really thought we were out of the woods with Kenny...but I guess this will always be an issue.
Today he has been sleeping, much more than yesterday...and I am sitting here so mad at the fact that the doctors on Monday, didn't listen to me...his mom...who knows her son. And also mad at prematurity!
It has robbed me of my twins, it has robbed my Kenny of a normal childhood and it has robbed my emotional state and way of looking at life.
Please keep the prayers coming..he is not out of the woods.

Tales of a pre-lit nightmare!

2011-11-21T08:32:00.006-05:00

ACK! Yes, I did just say, "ack"! This time of year is my all time favorite. From Halloween to New Years Day, I love every bit of the holiday season. I started off this season way back in October, listening to Christmas music and burning fall candles...and now...more Christmas music (its easier to find now), cinnamon and holly scented candles, lights, lights and more lights...and decorating the house for Christmas...Cue the music....dun dun dun...

A few years back, we bought a pre-lit Christmas tree. It was perfect in the store. It looked so real...it was full, had tons of beautiful white lights on it and it even had the pine cones to make it look even more real. It was love at first sight. I mean...how much better could it be? I would never again have to string lights on a tree. It was all done so I could spend more time with other, more important things....it was perfect for us.

That is...until the following year when the whole middle section of lights went out. I called the place I got the tree from, and after a long day of fighting on the phone, I ended up having them replace the tree for me. Score 1 for Michele!

That is....until the following year....

Yes, last year was another headache from heck with the tree. Again, there was a whole section of lights out. Somehow, I got it working...and the areas that I couldn't get lit, I added my own lights. It was more hassle than I bargained for. Who has time to mess with burned out lights or fuses when you have 7 kids...especially one who has special needs...not me.

So then we come to this year...Like years past, I get so excited to put the tree up that I made Tony drag up the monster of a box, that looked like its been through war after war....it was a pain, but a good pain. As we were struggling with the box on the basement steps, we noticed that it didn't escape the mold and mildew that took over our basement from the long wet spring and summer we had. It stunk so bad that we had to unload the tree from the box right on the steps. I thought to myself that it was going to be alright...praying all the while that the smell didn't get to the tree itself. So we finally got the last of the tree into the living room where I was going to perform my Christmas magic on it....it was going to be easy this year.

As I got the first layer up I was getting excited that maybe his year...just maybe...the tree would go up without a hitch...

First layer, up. Now for layer number 2. Put it on top of the first layer...plugged it in...aaaand...all but one section lit. OK...looking at the problem....the bulbs were all burnt out. So off to the specialty store where I bought the tree from...because, of course you can only use THEIR replacement bulbs in THEIR trees. When it was said and done, we spent $30 on bulbs. Because of the stress from the kids screaming and the stupid tree, I had one heck of a headache by the time we left the store. So putting the rest of the tree up would have to wait overnight til Saturday so I had time to get rid of the headache that was taking over my brain.

Saturday morning came and I was feeling much better. Nothing better than a good nights sleep to clear the mind! I started right away with the exchange of bad bulbs to good on the strand that was darkening my Christmas spirit! With each bulb change, my outlook started to grow bleaker...it wasn't going on! Finally, the last new bulb in place and still nothing! GRRRR! OK...think, think....maybe the fuse was blown. So I put new fuses in...and still nothing. I got so upset that I took scissors to that one line of lights, I mean, It was only three branches and did have an extra strand of white lights from last year that I never used on the garlands for the outside. It would work...I was going to make it work! Took some time unraveling the branches, but I did it...and it looked good with the new lights on. Finally! I can start to get excited again. I reached down and grabbed the third layer of the tree, placed it on the restrung layer, and plugged it in.

NOTHING!

At this point, I just walked away from the whole mess. I didn't want to do something that I would regret one day. Then, after looking around and listening to all the chaos that was my home (the kids fighting, Kenny screaming, toys thrown everywhere, pillows and blankets from the kids sleepover on the couch and floor), I took matters into my own hands...

The scissors came out once more and I made a phone call to Tony (hoping he'd talk me out of the irrational move I was about to make)....the phone call went something like this: Me: Hi ,Tony. The lights don't work and I'm cutting all of them out of the whole tree. OK. Love you. Bye!

And the stress relief was in progress! I cut, and unraveled...unraveled and cut. And finally....on Sunday morning, It was done!

Never EVER buy a pre-lit tree...ever! What a waste of time, but I do feel wonderful for taking matters into my own hands. I may just have to give the store their lights back in a garbage bag with a note that thanks them for showing me that buying a pre-lit tree and spending a lot of money on a tree (that is supposed to last years and years)...isn't worth it! They suck you into thinking that pre-lit is the way to go...yeah...down the toilet!

Think of this as a small public service announcement ;)

Now to get to the store and buy colored lights and twinkle ones for a multi-colored tree this year! Oh, and the moldy/mildew smell? Yes, the tree is a little stinky, but nothing that ScentSicles won't take care of.

I have so much to be thankful for!

Happy Thanksgiving Week!

Prematurity Awareness and what it is all about...

2011-11-17T09:33:00.004-05:00

This month is all about Prematurity Awareness and today is World Prematurity Awareness Day...
I could write a book about what this is all about...

Prematurity is all about being cheated out of a full 40 weeks of pregnancy...you know, the part of the pregnancy where women complain about...yeah...thats the part prematurity skips...I always wanted to be that pregnant woman complaining of her swollen cankles, her sore back, hips, etc...

Most of my babies came at 34 weeks...the longest I ever got to was 36 weeks...still early, but not as early as my twins whom I was cheated out of just about half my pregnancy. Pretty much the whole third trimester (with a little bit of second trimester)...17 weeks early. I missed out on everything except to feel the two of them moving around in me. Prematurity robs a mommy to be of her special time and its a very hard thing to take in.

Prematurity is about having your baby early, not being able to hold your baby right away...sometimes even for weeks.

...Its about being thrown into the whole NICU experience, be it either for feeding and heating issues or more, much more serious issues that mean life or death.

...Its about leaving the hospital without your baby...worried, scared and sad.

...Its about putting your baby's life in the care of the team of doctors and nurses in the NICU.

...Its about praying to God you don't get THAT call from the hospital to come right away because...well...they don't want to worry you...they'll tell you when you get there. Worry, pray, cry, worry, pray, cry....

...Its about finally being able to take your baby home, but not without infant CPR classes and car seat checks to make sure your little one can handle sitting in a car seat without change in oxygen sats or heart rate drops.

...Its all about learning how to use home health care equipment...apnea monitors, pulse ox monitors....when the alarms go off...what do you do? Worry, pray, check to make sure its nothing...then, go cry into your pillow.

Its about medications, doctor visits, therapies, feeding issues, hospital stays, RSV, being on house arrest from October to April for fear of your preemie getting sick.

Its about delays in development, hearing loss in some, eye problems in others.

Its about looking to the future but not being able to because of the fear that grips you at the thought of it.

And finally...

Its about many times, not bringing home that baby that you carried, had big dreams for, prayed over, cried over...loved.

Part one of my twin pregnancy video

Part two of my twin pregnancy video
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Premature infant
A premature infant is a baby born before 37 weeks gestation.
Causes
At birth, a baby is classified as one of the following:
Premature (less than 37 weeks gestation)
Full term (37 to 42 weeks gestation)
Post term (born after 42 weeks gestation)
If a woman goes into labor before 37 weeks, it is called preterm labor.
Often, the cause of preterm labor is unknown.
Multiple pregnancy (twins, triplets, etc.) makes up about 15% of all premature births.
Health conditions and events in the mother may contribute to preterm labor.
Examples are:
Diabetes
Heart disease
Infection (such as a urinary tract infection or infection of the amniotic membrane)
Kidney disease
Different pregnancy-related problems increase the risk of preterm labor:
An "insufficient" or weakened cervix, also called cervical incompetence
Birth defects of the uterus (which is what I have)
History of preterm delivery
Poor nutrition right before or during pregnancy
Preeclampsia -- the development of high blood pressure and protein in the urine after the 20th week of pregnancy
Premature rupture of the membranes (placenta previa)
Other factors that make preterm labor and a premature delivery more likely include:
African-American ethnicity (not related to socioeconomic status)
Age (younger than 16 or older than 35)
Lack of prenatal care
Low socioeconomic status
Use of tobacco, cocaine, or amphetamines

A premature infant's organs are not fully developed.
The infant needs special care in a nursery until the organ systems have developed enough to sustain life without medical support. This may take weeks to months.
A premature infant will have a lower birth weight than a full-term infant. Common physical signs of prematurity include:
Body hair (lanugo)
Abnormal breathing patterns (shallow, irregular pauses in breathing called apnea)
Problems breathing due to immature lungs (neonatal respiratory distress syndrome) or pneumonia
Lower muscle tone and less activity than full-term infants
Problems feeding due to difficulty sucking or coordinating swallowing and breathing
Less body fat
Soft, flexible ear cartilage
Thin, smooth, shiny skin, which is often transparent (can see veins under skin)
Not all premature babies will have these characteristics.

If the infant has breathing problems:
A tube may be placed into the windpipe (trachea). A machine called a ventilator will help the baby breathe.
Some babies whose breathing problems are less severe receive continuous positive airway pressure (CPAP) with small tubes in the nose rather than the trachea. Or they may receive only extra oxygen.
Oxygen may be given by ventilator, CPAP, nasal prongs, or an oxygen hood over the baby's head.
Nursery care is needed until the infant is able to breathe without extra support, feed by mouth, and maintain body temperature and a stable or increasing body weight. In very small infants, other problems may complicate treatment and a longer hospital stay may be needed.

Possible complications that may occur while in the hospital include:
Anemia
Bleeding into the brain (intraventricular hemorrhage of the newborn) or damage to the brain's white matter (periventricular leukomalacia)
Infection or neonatal sepsis
Low blood sugar (hypoglycemia)
Neonatal respiratory distress syndrome, extra air in the tissue of the lungs (pulmonary interstitial emphysema), bleeding in the lungs (pulmonary hemorrhage)...this is what took our Nick to Heaven.
Newborn jaundice
Patent ducturs arteriosus this is what Kenny had to have surgery on when he was 7 days old.
Severe intestinal inflammation (necrotizing enterocolitis)
Possible long-time complications include:
Bronchopulmonary dysplasia (BPD)
Delayed growth and development
Mental or physical disability or delay
Retinopathy of prematurity, vision loss, or blindness

Prevention
One of the most important steps to preventing prematurity is to receive prenatal care as early as possible in the pregnancy, and to continue such care until the baby is born. Statistics clearly show that early and good prenatal care reduces the chance of premature birth.
Premature labor can sometimes be treated or delayed by a medication that blocks uterine contractions. Many times, however, attempts to delay premature labor are not successful.
Betamethasone (a steroid medication) given to mothers in premature labor can reduce the severity of some of the prematurity complications on the baby.

U.S.S Kenny

2011-11-09T19:40:00.000-05:00

(Ultra Super Special )

Last week was picture day for Kenny at his special needs preschool. It's been a very emotional day for me. At one side, I am so excited that he is healthy enough to be at school to be getting his picture taken..actually...I should say, am extremely blessed that he is here at all...at 4 years old, in a special school and getting his very first school picture taken.
And on the other end, I am so sad at the fact that...again...another first that his twin, Nick won't be experiencing. I guess this life of being a bereaved mother with a surviving twin will always be a bittersweet one.
Because of this, I made a pin for Kenny to wear on his shirt. It's an angel pin with a very tiny prematurity awareness ribbon dangling from it.

I sometimes think that it's not fair that I try to keep nicks memory alive through Kenny, but it's how I am dealing with this and Nick will always be Kenny's Twin....
On another note, Kenny got his new hearing aids...YAY!!!! They are different than the last ones he had, lost and broke (haha). They are made so the teacher can just talk into a microphone and he will be able to hear it where ever he is and whatever he is doing...rather than having to sit right next to an FM speaker. He was denied several times from Medicaid but with the help from all of his doctors, specialists, teachers and us...we finally got them!
Kenny's health has been so-so, (knocking on wood) he hasn't been THAT sick to end up in the hospital...just the typical coughing and runny nose.
We got his report card today...he has really excelled in school! He is really working on trying to meet all of his goals from his IEP. He is starting to play with other kids, vocalizing more (not words...just a lot of sounds...but we'll take it!), just all around really starting to act more of a 3 year old! I'm so very proud of him!

On another note...I had to put my Milestones For Miracles on hold last month and part of this month due to personal reasons. I am sorry if I didnt get some shirts out to those that needed them...I promise to make it up to you all. Its just that I had some pretty bad luck (things happen) lately and I had to put things on hold. I WILL be starting up again this weekend...I PROMISE!

Crazy, crazy last couple of weeks...part one

2011-11-09T18:55:00.000-05:00

How proud can a mom be? Very. Watching your oldest daughter and her cheer squad compete...so completely proud! They did a great job...didn't win, but did an awesome job anyhow!

The day started at 5 in the morning....oh wait...let me back track a little....

It was the start to the very busy weekend ahead, Kenny's PTU Halloween family fun night. Thursday was Kenny's Halloween party, and Friday was the day to start my 300+ cupcakes for our churches Spaghetti dinner. During the day, I dealt with a very crabby Kenny, a day out of shopping for cupcake stuff and then picked the kids up from school, did a few more errands and then started the cupcakes. I got 13 dozen cupcakes made (6 dozen red velvet and 7 dozen apple/banana...by scratch). I was working on the chocolate chip cookie dough cupcakes when the apple/bananas were done. I grabbed them out of the oven, and closed the oven door. All of a sudden the entire top (control panel) of the oven/stove sparked...A LOT...and burned all the dials and wiring! DEAD...yep...it freakin exploded. So...what was I to do? After crying I laughed at what else could go wrong? I mean....its been one thing after another...It has been almost comical!

I can rule out a big glass of wine because of the heartburn it has caused me in the past. Maybe a long trip off of a short bridge....eh...too many people counting on me and would miss the maid work...haha. So I just had to say screw it. screw the broken oven, the electrical in the house that makes every light bulb blow every week, the broken doors, small apartment sized refrigerator, the ants, the water seeping in the basement, the cement blockade that I hit with my van, and the screaming/crying fits from a beautiful little boy who cant help it and from my other kids who can. Screw the giving up my life as an artist, wanting to be a bridal/headpiece boutique owner, wanting to,, for once be a "high maintenance" type of person.....

...I'm just gonna remember that my life has a path of its own. I've tried and tried and tried...its almost like George Bailey in Its a Wonderful Life...you have a whole life planned out and it went completely in a different direction.

S0 after my small pity party, I went to bed to only wake up every 2 hours to Kenny. Knowing that we had to be out of the house at 7 for Taylor's cheer comp. in Akron.

The morning went with the usual fighting (waking a bunch of kids up a 6 is never a good thing). Oh...and by the way, I now know why we need more than one and a half bathrooms in the house. Taylor's hair was in a perfect high ponytail and she looked like the perfect cheerleader...while we were all dressed in the school colors to cheer them on! Finally, we all piled in the car...while some of the kids were still fighting...and headed out.
Getting there at just the right time...not too early and not late at all...yes, that was an amazing feat for us, we're always late!
There were a sea of different cheerleading outfits (girls included) walking around and practicing for the competition...now mind you, this is a middle school catholic cheer competition...no booty shaking and not a whole lot of acrobats.
The girls did a great job, they were all in sync and worked hard to perfect their cheer/dance. What was really surprising is that the football team was there to cheer on their cheerleaders...
What a great time we all had. The girls didn't win, but they won because they were amazing to us and to themselves! We'll get 'em next year!

Here is the link to the Video I made of the cheer:
http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DjTmdO_WlobA%26feature%3Dshare&h=1AQGZ1Wn_

Artwork from Sydnie...

2011-11-05T16:23:00.002-04:00

Sydnie made this for all Souls Day at school...Sydnie is looking up at Nick in the sky (as an angel). She made wings on the "N" and a halo over it. All her idea. Brought tears to my eyes.

I love my kids so much and wish they never had to experience the death of their brother.

Fever or the real thing?????

2011-11-02T22:00:00.000-04:00

Mommy, I see guys in our room...don't you see them? They're right over there (pointing by the bedroom door). As the night went on, she still was waking me up to tell me that these guys were scaring her. Feeling her head, I knew she was delirious with fever so I took her out of her crib (which is in our room), and took her downstairs to get her some Motrin for the fever. I brought her back in bed with us...so now in our king size bed, we have Kenny at the far right, my husband, Gina and myself with just about 3 inches of bed before I hit the floor.
By now it was 4 in the morning and I have been up for 2and a half hours trying to convince my 3 year old (and myself) that there was no ghosts in our room let alone, in our house!
As she was laying next to me, she pointing towards the door of the room insisting that someone was standing there. I told her to tell the ghost to go away...so she was yelling at it to go...then I pulled the blanket up closer to us with the iPad on for a night light (playing soothing Christmas music). It seemed to be working...she dosed off for about 4 minutes...then I see her stating at me...well...past me. She said, mommy....the guy is right next to you, don't you see him? He's right there. Ok...at this point, I am freaking the heck out! I pulled the blanket up over both of our heads and was trying tho wake my snoring husband up from his deep sleep...which he so badly deserved after working all hours of the day and night.
So we both finally fell asleep...it was probably from lack of oxygen due to the blanket covering our heads...haha...
Morning came, and she woke up taking about the people she saw in our room. Taylor nonchalantly was asking her very general questions, as to not put ideas or words in her head....questions like....How many are there? (answer: 3). How old are they...are they like my age(12), mommys age or grant as age? Her answer....a guy mommy's age, Kenny and a little girl with brown hair. Hmmmm.... Now I have to wonder....is the one that she says was Kenny...was it Nick? I guess if you believe in this kind of stuff, then it is very interesting...especially wit hthe odd things that have been happening around here lately. But, if you don't believe, then I guess you could chalk it up to being delirious with fever or something real logical. I'm not sure what believe...all I know is that she was very sure and positive that there were people in our room...and it wasn't us. To top the whole thing off...this was the second time in 3 days that she has freaked out about these people in our room...and coincidently, the last episode happened in 11-1-11 (all Saints Day). I am a very strong believer in the powers and meanings of 11:11. 11-1-11, or anytimhpg that. Eeeeeeek!

Everyday is something new yet constantly the same

2011-11-02T09:00:00.001-04:00

It's giving the same feeds and meds...
Trying to feed the same foods, the same way.
It's the hoping that this day will be THE day that you finally get the whole eating thing.

It's praying that he cough Kenny has doesn't land him in the hospital...even 4 years later (after his early birth)
It's the loving him, that beautiful smile...the knowing what he's been through and wishing nothing but great things for him.
It's knowing that his life will be a struggle harder than some but a little easier than others.
It's the battle of wanting to have a life outside of just being a caregiver mommy but knowing that it's impossible. And honestly, It is a hard pill to swallow at times, but OK at others.

It's getting the dirty looks in stores, restaurants and wherever else we go as a family because people just don't understand the loud screams and tantrums of a child with autism and hearing loss.
It's the nonstop day (and night) that I face...no breaks, no respite and unable to quite understand what my child wants and needs.

The newness is when he comes home from school with a new art project the teachers helped him with, a new sign that he uses at times when he really wants something, or even this past trick or treating when he ran from house to house opening his bag for candy...then doing the sign for "more". He'll never even eat the stuff, but for him, the fun of it all was going door to door!
It's the feeling if praying that the cold he gets doesn't turn into something even more. Holding my breath at every cough, breathing treatment and fever.
It's also the feeling if trying to juggle 6 other kids with their wants and needs. Helping with homework, breaking up fights between a few, trying to them to help out but knowing very well that they won't. The laundry, meals, dishes, picking things up....yep, all on me. They have totally used my weakness of having to take care of, and watch Kenny 24/7 to their advantage!
I'm living a nightmare whom not many would want. but many feel that I brought it on myself for having so many kids...well...here's to those that say/think that...

My husband and I decided to have a big family...every child very welcomed. The fact that we have a special needs child was something that we were no expecting but are doing lour best taking care of him (and the rest of the kids). Its not what many people experience in their lifetime....having tons of kids, losing a child and having a child with many extra medical and special needs.

So onto the bad luck we've been having...ha ha...

The oven blew up On Friday night while in the process of making cupcakes for the church...so no stove. My daughter Gina is seeing dead people in our room at night...how awkward esp. On 11-1-11, we have several birds living in our, and the electrical throughout the house is slowly....whats the word...dying.

I am very blessed to have an amazing husband who is my best friend. He is a very hard worker and loves spending time with the kids. Now if we could just find a date night (OK...make it a weekend), it would be awesome!

Its been one heck of a few months in which I really need(ed) to regroup and come to realize that sometimes dreams don't come true and that if you want something badly...sometimes you just cant get it...So basically, I'm drained and honestly have no fight left. Ive been through way more than I ever thought of and can't really handle much more. Ok stepping off the pity party podium.
Btw....thanks again EM:HE for helping us, it was so worth it...haahaa! I just need to rest my mind and soul and self.
Sometimes I miss my old life, but love my new life even though I sit and complain (again...this is why I write this blog...to write out all my feelings...positive & negative).

Halloween party at preschool

2011-11-01T00:00:00.001-04:00

Thursday marked the day of Kenny's school Halloween party. We skimped out on costumes this year, just because the money situation hasn't been the greatest...so luckily I found these cute glow in the dark skeleton PJ's for Kenny AND Gina! Perfect for a school party!
Gina jumped right in and was part of Kenny's class, enjoying snack time with her big brother and his friends & teachers...

Then it was time for trick or treating throughout the school...and following that...the class picture *yes, Gina was in the picture too.

In his classroom, I noticed these cute little bats that the kids made...

And this fun sensory/therapy pumpkin. It was teaching the kids with special needs to hammer the golf t's in the hallowed out pumpkin...

After all the class time and trick or treating, it was gym time. Kenny loves to go down the slide.

Here...his teacher was helping him on the obstacle beam...

Gina showing off to everyone that she could balance rather well...and look cute doing it!

I HAD to get a picture of my two skeletons. I just love these two! They had more fun!!!!

I light a candle tonight...

2011-10-15T08:34:00.006-04:00

Today is National Pregnancy and Infant loss Awareness Day.
Please light a candle at 7:00 pm.
In honor of Nick, our many miscarriages and for all of those that has lost a pregnancy or child.

As I light my candle tonight, I pray that all of our angels are together and that we find peace in knowing they are together with God and all of our relatives that have passed on. I pray that no mother, father, grandparent, aunt, uncle or siblings have to experience such a painful loss that hurts well beyond any one's imagination. I pray for every woman who has experienced the joys of finding out that your going to be a mommy only for it to turn to devastation when you hear, "I'm sorry, there is no heartbeat" and then have to bare the burden and guilt of "why me...why couldn't I carry this very wanted baby". Then having to see and be around pregnancy everyday. I pray for the husbands, significant others, and best friends who try to comfort a mommy who has lost a pregnancy or child. And finally, I pray that one day, they can find a way to stop premature labor. I pray that one day, they can save even the sickest and smallest babies.

*************************************************************************************
Tonight I'm lighting a candle for my sweet angel baby, Nicholas and my many miscarried babies that I never got a chance to meet or hold, but still love as much as if I did.
To my sweet son Nick, Mommy misses you more and more each day. I thought as time goes on, it would get easier, but it doesn't. I don't ever want to forget how you smelled or looked. Those 2 1/2 days that you were with us, were the happiest days of my life. I had my twins. I was a mommy to twins. I don't know why God decided to take you...I am still trying to figure that one out, but I can only hope and pray that Uncle John (my brother who passed away at age 24) is with you. As you were dying, I told you to look for Uncle John...I hope you found him. You were a beautiful little man who I wish you could have stayed and been part of our huge, crazy family with all your brothers and sisters....and....as you know....you ARE a big brother to your sister Gina. Kenny, your twin is doing great. But you already know that. He has some major lung issues, hearing loss, epilepsy and developmental issues but I tell him every night before he goes to sleep that you are always with him (so you better be!) LOL!!It's so hard sometimes because with all the craziness of life and the doctor appts, PT/OT and any other appts. that Kenny has, I just look at him and see you. Sometimes its really good, but most of the time, it is really hard. I think, wow...I would have had 2 beautiful little boys doing this or doing that. It really sucks sometimes. I also hope that one day we will meet again, and you will know that I am and always will be your mommy who tried to keep you inside of me for as long as I could. I am so sorry that I went into labor with you guys. I am feeling tons of guilt over it...still trying to figure things out. Anyhow, sweetheart...Mommy loves you very much! (not a day goes by that I don't think about you. I miss you terribly)
So please join me tonight at 7 and light a candle for all those babies who have passed and for pregnancies lost.

I light my candle with my head held high to honor my miscarriages and my Nick...I thank God that he gave me you all, even if it was only for a very short time.

Finally a needed break...haha

2011-10-04T07:09:00.007-04:00

So I finally had my free time. A little time away...just my hubby and I. We did a lot of walking and talking, enjoyed some wine and just regrouped and reconnected. We didn't have to worry about the kids...they were in good hands. Even Kenny enjoyed his time. He played with toys...new toys that he loved. I was hoping he'd do alright since I never had them watch him before. I asked if they were capable of watching a special needs child. One that cant hear, cant talk but loves to gather and group and loves people. When I picked them up, he was happily working on filling a toy shopping cart with everything and anything that was in that play room with him. Tony and I people watched, you know...there are so many different people and tastes in this area...it was pretty neat. We got our dinner for the night and we were kid free! I thought to myself that I could really get used to evenings out like this...

...then reality hit. It was time to get the kids and put the groceries in the car...
who thought grocery shopping could be a date?

I would like to thank the Eagle's Nest Child Care at our local Giant Eagle grocery store for taking great care of 5 of my kids for the hour and a half that we had to shop. I would also like to thank the sales rep for Barefoot Wines for letting me test a few different wines (albeit, they were just a tiny medicine cup full, I thoroughly enjoyed the .50 worth (.25 per cup)...and I found a new favorite...sweet red! tee hee

Ah, the special little moments of getting away from it all.

Now back to a very sick Kenny and round the clock breathing treatments :/

Frawsomeday (awesome Friday)

2011-09-30T11:56:00.004-04:00

So, how can you get mad at a face that looks like this....
For doing...something like this....After he came home from school with this.... Oh yeah...what a day its turning out to be. Happy Friday everyone!

Just in: adding to this wonderful Friday...its pouring rain, its cold out and now the school just called and we are picking Morgan up from there...she's got a fever.

It's that time of year....again.

2011-09-30T08:50:00.006-04:00

Its that time of year again...cooler, wetter weather means the start of the cold and flu season...and that is exactly what we are starting to feel over here at the Tomecko house. It started out with just me having the coughing and runny nose...a few weeks ago, and now the stupid coughing has spread to Gina, Taylor, Morgan, Kayleigh, Kenny and I even heard my hubby coughing quite a bit last night. Gina is by far, the worst out of everyone (knock on wood that no one else gets as bad...mainly Kenny). She was up all night...er...I should say that WE were up all night long with the coughing and puking (from mucus). Then this morning she woke up with a fever and a really hard time breathing. So its off to the doctor today. I'm sure its an upper respiratory infection..she is really breathing hard and fast with a rattle in her chest. I pray, pray, pray it doesn't get to Kenny, who already is coughing much more than normal.

I forgot to mention on here last week about Gina cutting her hair...well...maybe I did, but I didn't show pictures of it! haha. Oh sure, I can laugh now....but when she did it, I was mortified. She comes walking from the kitchen into the room that I was sitting in...and as she was walking, I noticed some of her beautiful yellow blond curls were falling to the ground. It didn't register with me as to what was going on until she said that she cut her hair. WHAT?!!! I looked at her and noticed that some of the hair that used to be covering her eyes were gone...but that's all I could really concentrate on because of the shock! I ran into the kitchen to see what and where she did this, and sure enough...there was the pile of curls! I saw how big the pile was so I had to assess the damage that she did to her head. I grabbed the brush and started to brush her messy hair only to see clumps of hair stuck to the brush. OK...a little stunned at this point...I was just praying that it wasn't a huge chunk taken out. Ahhh...ok...so she took the whole front part of her hair down to maybe a half an inch and then she gave herself layers in the back...still leaving the length. THANK GOODNESS! So now it just looks like she has very short bangs or that her hair is brushed and parted off to the side. I am so happy it wasn't like when little Tony cut Taylor's hair when they were little (I should have known that those two would have issues with each other growing up)...and especially when Morgan cut her hair...I swear, that girl thought she was Dora or something!

So off to take care of Gina who is having a hard time breathing (as I type this) and waiting for Kenny to come home from school...I just hope he is feeling alright...I'm waiting for the bomb to drop.

Bad Mommy Award goes to...ME

2011-09-29T09:28:00.005-04:00

And the Bad Mommy Award goes to.......ME! I should have saw it coming...Gina's nose started to run a little bit last night but I didn't make anything of it. I was so determined to find this darn white (or cream colored) sweatshirt or long sleeve t-shirt for Kenny. His preschool class is making leaf shirts at school with a family member and he needed one for today. As the days are going by, we have not been able to find any plain white(or cream colored) sweatshirts or long sleeved t-shirts for that matter! Its been so freakin frustrating. Anyhow, yesterday we went to 4 different stores, desperate to find ANYTHING...and still...nothing. Last night I finally concluded that we were just going to use just a plain white t-shirt for him. I mean...he's just a kid, he'll probably only wear it once...maybe two times before he stains it all up. So that was my decision and I was now getting excited about his craft with a loved one day at school. Oh...let me add that I was also going to be bringing Gina to also make a shirt because Tony had a big job he had to get done for this morning.

The plan of action for this morning was to get everyone up and ready for school (easier said than done). I had my share of kids fighting with each other, and then actually yelling at me! uuuurg!!! Yes...that word....or for those English majors...onomatopoeia...is really showing my frustration from the morning from heck!

The camera was already put strategically in my purse last night so I could just whip it out and start the picture taking of Kenny (and Gina) making their shirts. Yeah...well...massive change of plan. During the night, Gina decided that she was going to start coughing. Not just a small cough that lasts for just a short time...oh no...she had to go to the full extent of sounding like she was a barking seal...ALL.NIGHT.LONG! So this morning, she wakes up...fever, cough and runny nose. LOVELY! So now what am I supposed to do? Its like a deja vu from last year when Kenny was to make a Christmas shirt with a loved one..and Gina was sick. The first thing that I thought of was...medicate her with Benadryl, Triaminic, Vicks...anything that would hide her symptoms...but as the morning is going on, I just cant do that. I would feel very guilty if someone from Kenny's class gets really sick from her. Its bad enough that Kenny is already starting to cough. So...the award for the Worst Mommy In The World goes to...ME. I wont be able to go to Kenny's school and be with him, making his shirt. All the other mommies will be there and my poor Kenny will be by himself...or...at least without a "loved one". I am hoping that Kenny forgives me for not being there for him. The guilt I have over this really blows! It just adds to the past few weeks of events.

I think I'm going to make a huge pot of beef stew...its supposed to be a comfort meal...and boy do I need comfort after this one!

Happy Birthday to our Kayleigh...

2011-09-28T11:18:00.004-04:00

Happy 6th Birthday to my first c-section baby...Kayleigh! What more can I say...just look at that beautiful face! She has made me smile, laugh, and sometimes even scares me from some of the things she says and does. She is my daredevil and my cuddle buddy, and now she's 6. The scar I have on my belly...well, the one with a little curve to it (yes, I can differentiate between Kayleigh's c-section scar and the twins scar) will always be a reminder to the wanting a natural delivery of a breech baby by my doctor and myself, but having to have a c-section because of hospital procedures...darn those other doctors/nurses in the room who made me feel scared of trying a vaginal breech delivery. I was so up to try it. I had THAT much faith in my OB. Ha ha...I think, as long as I am of child bearing age, he'll always try to get me to have that type of delivery. tee hee.
Anyhow...
I'll be taking cupcakes to her class in a little bit which is always the best. I love seeing the faces brighten when I walk in! Hmmmm....I may just have to bring cupcakes to Tony's class next week for his 14th birthday *wink wink! yeah...he's gonna kill me!
I know this is a very short (but sweet) post, but I've been feeling a little down lately so this is the best I've got (for the time being). So, until tomorrow when I go to Kenny's school and help make fall shirts with them (pictures to follow)....

A tornado ripping through my mind

2011-09-26T08:28:00.005-04:00

Hi, I am Michele... a mom who is more than just a mom to many kids...I am also a caregiver to a child that has needs beyond the normal, healthy child. I am also a human being that is tired. The checklist says it all.

This has been a very interesting and emotional start to fall. So far, I've had outpatient surgery...and have been very emotional about that whole thing...I really don't want to get into the specifics about it...just that...getting older sucks and I have a lot of healing...emotionally to do. Kenny had been back and forth to his therapy appts, doc appts, and school...some of which are going great, physical therapy for instance, he is exceeding what I though he'd be doing. He tries everything they give him to do...and follows directions quite well. He love jumping on the trampoline, kicking the soccer ball into the net and standing on a cushion while reaching, catching and throwing things. He needs a little bit more help on his floppy muscle tone in his legs...so he can learn to ride a tricycle...but other than he's doing great. Some other appointments...not so great. He is not gaining...he actually lost some weight. He is starting to not want his backpack on for his tube feeds, so there is some defying that is taking place. Our next step is to find a high chair that can hold a 4 year old for his feeds...yes, we are reverting back to the old ways of when he first got his tube in...he will be sitting for an hour while the feedings take place.

We also have been denied for the 3rd time for his hearing aids. Its been since May that he lost his one hearing aid in his little autism tantrum he had in church, at Sydnie's communion. And just a few weeks ago, he came home from school and went right to playing. I thought he unhooked his hearing aid and threw it in his toys...but nope. The next day when he came home from school on the bus, they handed me an envelope with his hearing aid in it...broken. So yeah...trying to get Medicaid to supply a new set of aids to a child with moderate to severe hearing loss has not been easy. We are getting frustrated and told by his teachers/therapists that he really need them...noooooo kidding!

Also, its cold & flu season, and I am besides myself. I am hoping that this season is gentle on Kenny. He is already starting the coughing and throwing up mucus...which is always pleasant. It is a continuous battle of my thoughts when it comes to this time of year. You know...the thoughts that pop into your head and start swirling around like a tornado that doesn't stop...just gets bigger and bigger and picks up steam until you cant sleep for hours on end...yep...thats what is happening. Thoughts of Kenny getting sick, seizures, him losing weight because he doesn't want to eat for me. The possibilities of losing him. Heck, thoughts of all the babies that I've lost. Thoughts of my living children and their lives...should Tony be going to a Catholic High School (that I really want for him) or a public one. Thoughts of Kenny having to go to a public elementary school around the corner from us...and I wouldn't even send my older kids there because its THAT BAD, yet, I'm going to have to send Kenny there...so then I think that we have to move...and the money thoughts pop up.

See what I mean? Like I said, the thought tornado just sort of builds to an F5 from all the grief, sadness, exhaustion and stress....that destroys the whole sleep, functional and emotional state of me. There is no doubt in my mind that I will get through this. I just have to wonder why. Why is it that you do what is supposed to be the right things in life, and nothing goes right. Nothing. I swear, I have a curse bestowed upon me. Its bad enough that I have dealt with the loss of a child, the loss of multiple pregnancies, a child that takes 100% of my time and energy because of his special/chronic needs, a house that is falling apart in front of my eyes, and now teenagers and their ways. And all the while I try to keep a happy demeanor. Being kind, giving and loving to those around me when honestly, all I want to do is scream, break things and hide under the blankets in my bed and never come out again. I know I cant do that, so praying and hoping that God hears my pleas to give me a better life...or at least the ability to deal with what was given to me will have to do for now.