Baking, baking and more baking!

This has been one heck of a lent season. In these last 6 weeks, Ive learned that I LOVE baking! Its time consuming but for that Thursday, after dropping the kids off at school, and I start baking...it make me feel more like a human being...a person who doesn't have to worry about breaking up fights between the kids, washing clothes...whatever. For that time, I am in my own little happy baking world (along with my little helper Gina and then when Kenny comes home...him too).

So here is some of what I do...what I've been doing every Thursday-Friday since Lent began for the last 2 years...

These are trays that we place on the bake sale table. Notice the tins on the right...those were filled with even more cupcakes that I made...

This tray had Carrot cupcakes with cream cheese frosting, more chocolate ones, chocolate chip cookie dough ones (they're the ones with the little chocolate chip cookies on top), I also made chocolate chip cupcakes

I made lemon squares with a rich topping consisting of Cool Whip, cream cheese, powdered sugar and a touch of vanilla. Topped with graham cracker crumbs.

Here are the chocolate chip cookie dough cupcakes...The princess cupcakes One of the versions of Chocolate cheesecake with chocolate whipped topping, drizzled melted chocolate and a fresh raspberry...

Here are some with the chocolate whipped cream, chocolate drizzle and raspberry...

Triple chocolate brownies with a ganache drizzle topped with mini chocolate chips. A chocolate lovers delight...

Chocolate with a surprise of chocolate, white or mocha frosting hidden in the center...

Here are some of the past weeks bake sale cupcakes and bakery that I have made...

Pizzelles with powdered sugar...

These are some of the crumb cakes I've made...cherry, apple and there is a cinnamon one...I also have made chocolate whoopee pies!

And with any leftovers, we have given them to the local police and fire departments!

What a day

Have you just had one of those days where you think your going to get so much accomplished and then...BAM...it all goes to sh**? Well, yeah...that's the day I've had. Its Thursday during Lent, which means I start baking from the time I get home from dropping the kids off at school till late at night. I do this baking for our school/church fish fry. It is my stewardship towards our church. I am giving back rather than giving something up for lent. Well, anyhow...I do pretty much all the bakery for the bake sale and I love it! I love baking. It is my release...my time away from thinking about my daily struggles. I really enjoy doing this on a weekly basis...trying new recipes, new decorating ideas...I'm kinda using my creative skills for all of this.

So, why am I having such a hard time today? Why had it been one thing after another? Oh yeah...I have a special needs...er...uh...high maintenance child who is extremely demanding of me. He takes up 95 percent of my time...the other kids take up the rest. Today was the breaking point of knowing that my life is no longer for me. It is no longer my dreams to follow, my hopes or wishes..or even my time to just be me. I have given it up for what I have. A hard pill to swallow, especially since I have so much I WANT to do. I Love my kids dearly and love taking care of Kenny...but sometimes, I just want to me me.

With my baking today...I was forgetting this and not putting enough of that in the recipes...Its very disheartening! I had to pitch a whole huge bowl of red velvet cake mix because I forgot how much of the oil and water I put in...and tonight, I made lemon squares...they SO didn't look right! UGH. I HATE when things don't turn out the way I wanted them too.

It doesn't help that hubby is extremely busy and that Kenny and Gina were non stop screaming and crying...Kenny being very clingy and just not a very happy camper today. So, yeah..I got nothing accomplished. So I sit here at 11 at night...still having to make 6 dozen cheesecake cupcakes and I honestly don't want to. I feel like I'm gonna screw those up too. Should I wait to morning? I dunno. I just hate the fact that I cant seem to do what I want to do without other responsibilities as opposed to others in the house who has one thing and one thing only to worry about.

I'm tired...I'm ranting and raving like a mad woman..and I just want to go to sleep and let this day pass. I just wish we had more of a support system to help me with Kenny. He is so much to handle at times and I am tired....I'm so very tired. Grateful to God to think that I can do this..but questioning this greatly.

On another note. I did learn how to make chocolate cheesecake cupcakes...the taste test will be tomorrow morning :)

My sisters (very cute and unique) baby shower invitations...yes, I somehow found time to make them...

I did it! I finished my sisters baby shower invitations.

They turned out better than I ever imagined! They are invites in a diaper!

Here is a step by step to make these:

1) Find card stock that you love at your local craft store. They come in books that have a theme or single sheets...I went with the book of papers that had the same theme. Remember that this will offset the whole feel for the event, so make sure the papers you pick are exactly what you want.

cut two different sizes of different patterns... one will be 5x6 while the top piece will be 4.5 x 5.

Next, find the style of decorative edging scissor you want and cut 3 of the 4 sides on the smaller piece of paper that will be the top layer...leaving the bottom straight.

This is a side view of placing the paper on....the straight edge will be on the bottom. and glue it down.

Next, print out 1.5" square baby pics of the couple who is expecting...I wanted them to stick out from the colorful and busy background so in my computer, I made the picture sepia...

You are also going to cut out 2" squares of yet another pattern (yet still all within the color scheme of the papers)...and take another style scissor to the edge. Glue the picture to the patterned/cut paper square.

Make sure for the baby picture of the dad to be is on a completely different pattern and color of that of the mom to be...another pattern...the more patterns, the better! When you get both baby pictures done glue them to the main invite that you started.
Now for the wording and actual invite. Use your computer program to come up with a saying...print it out on vellum paper...make sure you cut the vellum to fit the entire invitation face. There are many different sayings, invite styles and fonts out there in cyber space.

Line up the vellum to the invite and edge the corners to a nice style.

Take the small hole punch and punch in holes on each corner.

Place little brads (there are so many styles and colors to chose from) into the holes. I chose 2 different colors...just because I was going for the all out busy/colorful/country french baby look.

You are then going to make your bows for the top center of the invite. I guess you could buy them, but I wanted the extra punishment of making my own...haha... make them little.

Attach them with glue dots...they will flatten and hold the material perfectly without a mess.

When you are done with the invite, get a package of size one diapers and place the invite into the diaper. Tie two 2' pieces of ribbon around the diaper and into a bow...

Add a little tag with something on it or where they're registered at.

Place it in an envelope and mail!

And that's how I made them ;)

Any questions...

or

if you need some done for YOUR event and you want someone else to take on the task,

I could do it for you!

Just contact me at:

mtomecko@gmail.com

Kenny playing with his cars...

And explaining in his own way what he did. If you listen closely, at the end you can hear him say school bus!

God has really blessed us with this little miracle! He is perfection made perfect!

Words that adds salt to the wound...

It was one of those days. It started out decent...you know, the usual Monday morning for me. I get the kids up and take them to school, come home to clean up the morning mess...all the while taking care of Kenny and Gina's highly demanding (and slightly amusing) requests for one thing or another. We then get ready and go to Kenny's therapies. This week it was Speech and Physical.

I had Kenny's feeding tube backpack on him along with his hearing aids. Now keep in mind that Kenny gets sensory overloaded very quickly. This backpack, which holds his pump has some weight to it and he loves it! It kinda calms him down like a weighted vest would...so anyhow, we get called in to his speech therapy and he walked in like he was going to take on the world today! Head up with a little bounce to his step. He remembered to sanitize his hands and turn the light on in the room. I sit against the wall while his speech therapist sits at a table with him and does small games and letter/word sounds...today was the OO sound (like moo, look, book). He was really trying to form the sounds with his mouth and was working as hard as he could.

I was so proud of him, my little man who will soon be five...trying so very hard to learn to say words and do signs....and yet deep down inside, my heart was heavy.

Having to watch my son, who has had to fight for everything...including living, struggle to do what should come naturally.

Then I snapped myself out of it and thought to myself...yeah...he's gonna show everyone. He knows everything he wants and he'll be alright...he'll be alright.

He is already trying to say iPad, school bus, bowl, ball, and more...and the signs he's learning...melt my heart.

At the end of his speech therapy, she couldn't get over how wonderful he did and how much more connected he was with her. She felt that he was finally just starting to realize that when you put a word with a sound AND a sign, it all fits together. She was so happy with him and that he was a joy to work with...which made this momma very proud.

Now off to wait 15 minutes for our next therapy session...PT (the main reason for this post)

With the backpack still on giving Kenny his feed, and the hearing aids in, we waited for his physical therapist. She came out and again, Kenny knew the drill...walk over to the handicap button to open the door, press it and see mom 45 minutes later. But before he walked in, the therapist asked if the backpack could come off (her thinking it was a school backpack). I quickly reminded her that Kenny was getting a feeding through his g-tube and that, no, I couldn't take it off...but that he'd be more that fine to do PT with it on.

To make a long story short, we both thought that the backpack would act as a weighted vest and that he's be more focused (kinda like he was during his speech therapy earlier). My last words to her was that he did great in speech...very focused and tried very hard...and hers back to me? Well, it was more of a sarcastic...well...ok, we'll see.

End of the appt came...door opened and out comes Kenny, running like usual towards me followed by the therapist. Man, I thought to myself....she looked like HE worked HER rather that the opposite. She told me that he was just not paying attention...yada, yada, yada....but the backpack DID settle him down a little...yada, yada, yada....

We made some small talk about scheduling and then the hook, line and sinker...the biggest zinger ever....

...as Kenny and I were just walking away I hear, "you know...he's got the attention span of a flea."

WHAT?

Did I just hear an adult woman, whom I trust with my son, just say this to me?

So with the minuscule of time it took to take what she said to me, decipher it, and then comprehend it....oh, did I mention, I thought to myself..OK, there is some PMS going on...maybe on my behalf, maybe on hers. Maybe I'm being too judgemental (don't go off on her)...maybe she didn't mean it such a way where she totally made my son out to be...like that of a flea...(don't go off on her)...maybe she just meant he was preoccupied or something...(for the good of God, don't go off on her Michele). Then I thought back to a couple of sessions ago when I sat in on them...and how she was short tempered with him because he didn't understand what she wanted him to do. She held his face with her hands and got close and told him that he NEEDS to start PAYING ATTENTION...to LOOK AT HER.

All this thinking (within seconds of the comment) made me turn around and smile....I just smiled and told her that if she couldn't handle his flea sized attention in just 45 minutes, she definitely wouldn't be able to handle being his mom...God gave him to the right person!

I walked away holding my son who's heart is bigger than hers will ever be...and filed a complaint. I told the supervisor what had happened...that I didn't want her to get in any kind of trouble because maybe she didn't mean it in a bad and inappropriate way. Maybe she just felt THAT comfortable with me that she could be sarcastic and compare my son who has severe hearing loss, developmentally challenged, muscle issues, who's non-verbal, has microcephaly and a whole slew of other health issues to that of a tiny bug that has no meaning except to irritate. I just don't know. The supervisors jaw just about hit the floor. He didn't know what to say except that he was sorry. He was going to talk with her. That's all I wanted. Maybe she really doesnt know all that is going on with him...maybe she only feels like he is a normal child with some muscle tone issues...if thats the case, shouldnt a therapist (who works in the same hospital where ALL of Kenny's doctors, appointments and records are kept) read through and actually SEE what they are dealing with? There is so much yet, I don't want her to get into trouble of any kind...I just want her to know that this mom of a special needs child has had a pretty rough last couple of years...these weeks leading up to Kenny and Nick's birthday/Nicks Angelversary are rough on me. Its mostly about flashbacks and tears, with still some whys and what-if and guilt (yes, even after 5 years). So please don't say stupid stuff...its almost like calling my son retarded...it really is hard to handle.

I know this isn't the last time I'm going to have to deal with this. I just pray that Kenny's feelings wont get as hurt as mine did today.

What would you have done?

Facebook and misunderstandings

I decided to write this post in lieu of the whole Facebook era. I have been an avid FB loyalist since I tested it as a beta...years ago. Back then, it was really only games...I do believe the one that stuck out in my mind was some sort of vampire game. The status of people were short and to the point' for instance..."<--- is tired", or..."loving life". The friend list was mostly gamers...until we were allowed to start inviting people and then the word got out to EVERYONE and their mother! I now belong to many closed and secret groups...of which are my playgroups, moms boards and preemie boards that I belonged to while pregnant with many of my kids. My preemie groups are more from word of mouth from other preemie moms. I love and respect all of these ladies (and some guys) on all my groups.

I've reconnected with people that I've went to school with...uh...many years ago and love being a kind of voyer into the lives of people that at one point in my life, were there every day...through all my school years. It's been a blessing to actually reconnect with so many of those that I have missed and always wondered what happened to them. The miles and years don't seem so far away anymore. I have "been there" for my long lost friends and acquaintances for births, sicknesses, vacations, proms of their kids, and even deaths...of a family member and even a few deaths of my friends whom I still go to their wall and just remember their lives...

FB has been a blessing and a curse at times. Yes, I've gotten into some written heated arguments...and afterwords I laugh because...they're just written words. You can't really get into an argument when there is no expression to the words written...sure...YOU CAN USE CAPS to show that you are yelling, but honestly, it's still typed out words with no expression. One can easily take offense to pretty much anything typed or posted.
Yes, I've even lost family to this curse as well. You can try messaging them, but again, they are just typed words...not really any meaning to them.

I've come up with a list of things that will definitely get you defriended, blocked, or get banished to the "acquaintance" group (for those of you who don't know what this is, it is the politest way a "friend" can ignore you without actually hurting your feelings and delete your a$$. They won't see what you post unless they actually go to that list.)
And stuff that you SHOULD do as common sense as a friend or family member on FB.
It comes down to FB/Internet code of ethics...you just dont delete family once you are "friends". You can hit the "hide all posts" button so you don't see any of the posts.

1) I've learned first hand that to express a belief that you are passionate about is a definite no-no. Do NOT post anything about politics, your views on abortion, or anything that is on the news....this includes entertainment news...you know, stuff like Angelina Jolie and her husband live in partner, hottie Brad Pitt.

2) Games...sure they are fun to play but to some online...it really ticks people off to no end! Getting a game request or seeing that you played a game in their news feeds really pi$$es some off...even though it doesn't bother me but heres an idea that is directed to those that are about to do the deleting or banishing because of this...there is a little hidden "x" in the upper right hand of the post that is bugging you like nails on a chalkboard...HIT IT...it will tell you to hide all said game updates. There is also a "hide game app" area in the privacy section...or is it the acct. section? Presto...problem solved! No need to delete a friend who enjoys a game or two in their spare time.

3) Here's a biggie for me. Because I tend to tell my whole life story online...if you couldn't tell...I have found that friends and even (believe it or not) family don't care about your bad luck, your PMS moments or anything negative.
Since I am guilty for all of these types of posts, I know that these are one of the main reasons why most of my 700+ friends don't comment very often. In defense to myself, I have FB to connect with people especially those close to me. To keep them updated on my crazy life of tons of kids and my beautiful special needs/chronically ill son. This is MY life. The day in and day out, continuous worrying about one thing or another. It's about weekly hospital visits, being up all night (and I don't even have a newborn), feeding issues, medicines, etc. I don't have the easiest life so If those friends and family can't handle the updated posts on any of these things, they are living in a fantasy world where everything in life is perfect. God forbid you ruin their day/life by posting your unfortunates.

4). Not posting anything at all...ever. Like you don't even exist. This one is pretty much self-explanatory. Not ever posting will get you deleted...if you aren't on FB, your taking up space.

5). Guilty by association. Again...this one is another self-explanatory. If you are friends with someone with whom another friend got into a written war with on FB or someone dissed someone in real life...a divorce, a family squabble, or anything else...you WILL get deleted...eventually. Sometimes you will only be friends for a short time just to get information from...but believe me, deletion is on it's way.

I'm sure there is much more...but I wanted to cover some of the things that I've experienced. Now here are some ideas for the deleters...yes, you mean people that are making those you have deleted wonder and contemplate their own self worth and life...

1). you don't delete family...it's the biggest no-no ever! It will only bring things out in real life...at a party, a holiday or whatever. To be deleted as a friend while others in the family are still friends only will cause must sadness and misunderstanding. It's like deleting a friendship that you share in real life. Please rethink this. This one is very critical for everyone involved...especially if it was just some miscommunication...which is more likely what caused this in the first place.

2). If you don't like a post or feel strongly against the issue at hand...DONT respond...just keep scrolling past it. This way no one will get their feelings and emotions in a twist.

3). If you are drunk, depressed, arguing with a spouse, or suffering from PMS, it's better to stay off Facebook for a while...period! These moments in life tend to bring out the worst in one and you are apt to comment or post just to start with someone. It's almost like cyber road rage.

And to those who take a Facebook break by deactivating you account....good for you. I've done it and it is a sort of refreshing and needed break every-so-often. When you feel that life is getting out of hand. When you are at a low in your life and all you are seeing is good fortune in other posters...which makes you want to jump off a bridge, do yourself a favor and deactivate for a couple of days. no need for deletion of people. You will be hidden from everyone while you are off...no one will be able to see you even exist until you return with a better outlook.

I just want to close by saying that Facebook has been a huge blessing in my life. I've been able to share my life with so many people. I have a great support system for my life as a mom of a chronically ill/special needs son. My life is not perfect...by far and it is one of the ways I find comfort, support and inspiration from friends and family. It has picked me up when I was down. It has helped me share many triumphs and celebrations, and it has allowed me to enjoy a laugh or two, many memories and events. On my friends list, I have conservatives, liberals, straight, gay, ex-boyfriends, whites, blacks, and every color in between. I have many that don't live in the states, some rich, some poor, Catholics, Christians, Baptists, Jews, Atheists...and many more differences.
So before you decide to delete a friend, please remember we all are human and behind those words, ideas, opinions and deletions...we all have feelings!

Happy Parents Of Preemie Day!

Today, I am recognizing the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. Not just at birth...but for years following!

I am a mom to 8 preemies. I am proud to say I made it through short and long nicu stays, monitors, oxygen, scary moments and monumental moments. I made it through bringing my babies home after having to leave them at the hospital for one thing or another, and I Also made it through leaving the hospital without my beautiful angel.

The road has been rough and I would of much rather of taken the easy road but that was not chosen for me...for us. Our first child (who is now 14 by the way), we went through my water breaking at 29 weeks and spending 5 weeks on bed rest...with me not really knowing or being scared about it...and I delivered a healthy but small 4.8 pounder. Our second was born at 35 weeks but spent a month in the nicu for apnea episodes. Our third was a 34 weeker but pretty big, weighing in at 6 lbs. She only had to stay for feeding issues. Sydnie and Kayleigh were both 34 weekers and even though they are 2.5 years apart they both had true knots in each of their cords...so for that, I am grateful that they both decided to come early because they could have had a cord accident in which they could have been stillborn.

Then you get to my twins...the two that changed our lives in very different ways...born at 23 weeks...a whole 17 weeks early! They taught us how to face challenges of chronic illnesses and special needs. How to deal with a death of a child and the grief that follows it...all the while still "swimming" for the sake of the surviving twin the even years later is struggling daily, the other beautiful kids at home that had to deal with losing a brother and having the other sick constantly dealing with the special needs that he has...and finally for our marriage...because no one talks about the stress that loss and sickness can wreck havoc on a marriage. We are stronger, grew closer because of it!
I used to think that my oldest son was small...but to see two 1.7 pound babies being taken from my safe and protective womb is just...scary and heartbreaking.
Finally we have our Gina. Our longest term baby at 36 weeks...just a true blessing to us all. No hospital stays or issues...and loves to be "best buddies" (as she says) to her brother, Kenny.

There were/are times when I want to wake up from the nightmare of having preemies (mostly micro preemies), but know that it is our reality...our life. A different life than what most would want. A life that has taught me that money isn't everything...family and friends are...the people that you meet in your lifetime are. Decorating your child's cemetery plot and praying that the extra plot next to him won't ever have to be used is. The experiences, good and bad are important. Watching your child who was so small play a sport, sing a song or try to tell you what he wants when he can't talk is. Doing things for others are. Understanding and forgiving is and so are A hug, a deep stare and an I love you!

Happy Parents of Preemies Day to all those parents who have ever had a preemie. May God bless you all!

a Lenten sacrifice and Kenny update..

So I made it through week 4 of my Lenten sacrifice of giving rather than giving up...I've been making cupcakes and bakery for our church/ptu fish fry that we have every Friday! Tony, the kids and I make it our mission to help and have fun doing it!
I find it very relaxing and it's a time where I can be me rather than a mom, caregiver to a very demanding Child, where I can escape in my own little world that I call...the kitchen! Sure, the laundry has paid for it as it sits piling up until I can get to putting it away...but theres a time for everything! heck, the older kids are old enough to be doing laundry as a chore...Iay just go on strike ;)
last week was a week of doctor appts that were supposed to be routine.they ended up doing an EKG on Kenny and getting several vials of blood from him. From what his doctor said to me, she felt that he just didn't look right and all of the glands in his neck all he way down to his collarbone were swollen. I know it's not that much if a deal in normal healthy kids, but it's always something more with Kenny. We wont find out the blood test results until Monday or Tuesday. His EKG came back as showing an arrhythmia of some sort. his doctor has been so great in going with her gut instinct on issues with Kenny. She is consulting a cartiologist at the finding. OK...at this point my mind is racing and I just don't know what to think! I got home and called his genetics specialist who, way back when, made comment that the long arm of chomosome 17p13 was slightly longer. Stupid me goes and googles this...most of anything that deals with chromosome 17 involves cancer! I metioned this to his doc and really got no anwers other than the fact that this abnormality could not be nothing at all...it could be just his makeup. so basically I am running around like a chicken without a head not knowing what is going on with my son. His neurologist, 6 months ago told me that everything he's dealing with is due to extreme prematurity and not many 23 weekers survive, so they don't really know the full effects on them as they get older. So yeah, Kenny is now a test guinea pig for the medical field. Just last week, I was told by the same doctor that my son definitely has some sort of syndrome. WHAT???!
how dare they lable a child by his looks and actions when they don't even know of the reprocussions of being born at 23 weeks?!
So now, on top of his developmental delay (mild mental retardation), hearing loss, eye issues, chronic lung disease, epilepsy, feeding issues/tube, being non verbal, having low muscle tone and having some autistic issues...I now have to worry about heart issues and possibly cancer down the line. How much more can a mommy take? I look at his beautiful smile, his love of life and his ability to make friends even without having to say anything to them, and I wonder why! He has a perfect little soul who doesn't deserve to have anything bad happen to him!
If there is anything that this whole "being a mommy to a special needs child" brings to me is...well a major amount of stress...but more importantly, never take a moment in time for granted. I can't change what will be, but I will be there fighting and loving Kenny and the rest of my beautiful kids and hubby!

It's all gone to sh*t....no...really!

So as raising a child with special needs isn't enough...what it entails on a daily basis is crazy! First you get the worrying about his health. Then you have the meds, feeds, therapies, specialists, doctor visits. Oh, lets not forget the much needed help because...well, lets face it, who wants the burden watching a special needs child for a few hours. The grinding of his teeth, the unable to talk and tell you what he wants or needs...it gets tiring. Its better to just ignore and don't ask...I guess, out of sight-out of mind is the key phrase here. And I guess after this little event, I can understand (in a way) why!
While I'm in the middle of changing loads of clothes (I think it was load 14 to be exact), I brought up a basket of towels and Sydnie walks past Kenny, who was standing in our living room (which was our dining room but we changed it into a living room...or...a family room if you want to call it that) and makes a comment something to the effect of..."Oh Kenny (using her quiet, flower child meets nun quality tone that she has), what do you have on your hand? What, where did you get chocolate...from?

Wait...ummm...ummm...that's not chocola...a...aaa...ahhhhhhh...AHHH...MOM!!!! MOOOOOOM...Its NOT CHOCOLATE!" As her quiet demeanor turned to some crazy screaming, psyco hair band dude screaming a high pitched song lyric! Kenny had POOP on his hand! Hmmmm...I thought to myself. I gently put the clothes basket on the dining room table and walked over to take a closer look for myself. Kenny is standing there holding his hand up and out in front of him like he was a surgeon with freshly scrubbed hands. But alas...that chocolate coating covering his fingers was not the sweet smelling, much craved for candy...nope...it was poop. At that point, I grabbed his wrist and quickly ran over to the diapers and wipes stash that I conveniently have placed under the TV stand. Grabbed oh, about 50 wipes and started wiping and wiping...and then if that wasn't enough, I still had to change the diaper from he** and all of its components! Even though I had 8 kids, poop still gets to me. I dont do poop very well and was gagging and about to puke the whole time.

Having a child who is almost 5 still in diapers is bad, but when said child has the mentality of a 2 year old...who thinks digging in ones poopie diaper is a fun and exciting experience...then you've got trouble! This has happened twice already...for me anyhow. I think my husband had this experience a few times as well.

My poor son will be having chapped hands for a while to come due to the fact that I think I scrubbed them with soap and washcloth till they were raw...then the hand sanitizer came out and was used!

God must really think I can handle all this sh*t....literally!

Which leads me to one last thing. Kenny decided to get hold of my computer, while I had it on my blog edit posts/new posts....and he, well...deleted my last post titled Little Reminders. I have a favor to ask. Could you, my readers look and see if you copied or read and it was saved in Google Reader? Because it is gone. He deleted the entire body of my poem that I spent days on. I guess it was my fault for not writing it in something else and then saving it to my blog, but I didn't. So if you could just take a look and see. If you can pull it up and have it somewhere, please let me know. I am beyond sick over this. I am hoping that blogger or google has it somewhere in cyberspace. This is another one of those instances...ugh.

Gotta love that crazy, little miracle kid of mine!

To whom it may concern:

Ok...the joke is over. You can take the curse off! You can stop with testing us now! You win! We did nothing wrong yet you feel the need to keep the fight going. Thank you for the test of our strength, purpose, love, compassion for others, family closeness, work ethics (in which we basically give our services, our God given talents to help others rather than charge an arm and a leg for them), and our sanity. It has been tough but these last couple of days have really been the kicker!
I'm giving my time and cupcakes for our church fish fry again and have basically been in a downwards spiral since the planning. Last year we were more financially stable and I had a huge oven to use...that is, until it exploded a few months back. I now have a much smaller one which only makes a few dozen at a time...not to mention the burning it likes to do to all my food! then to top it off, my time is extremely limited...Kenny has been a huge handful lately, and we are working with his therapists for that.
Last night, our kitchen sink faucet decided it was just going to stop working...and we just got it a few months back...so, no working kitchen sink...while making cupcakes...JOY!
...Tony just got brand new tires on his work van a few months a go....back tire completely flat.
...my van has something wrong with the back breaks (at least that's what the grinding in the back end sounds like).

So see...please give us a break. We are good people who live simple and god loving lives. We dont ask for anything from anyone, help others, and love our kids and each other dearly...but these issues/tests that we have been faced with (there are several more but I don't want to get into it) have been trying on my husband, myself and our kids. (Not to mention I have to make 300 cupcakes today).

You know who you are...thank you for thinking of us, but these tests are no longer needed. We just want a smooth, and somewhat easy life from this point on.
Thank you
Sincerely,
Michele

A birthday, a meltdown and one tired mom

We celebrated my daughter Morgan's 11th birthday on Sunday with a big family and friend party...nothing fancy, no bowling, no swim party, nothing showy or over the top...just a nice, old fashioned house, food, cake & ice cream, family and friends...and guess what? Everyone actually had a great time! She got a lot of really nice things...so different than when she was 10. Gone are the days of when requesting toys. It's all about gift cards, clothes and accessories! She played with her friends and showed off all her little cousins/second cousins to them like a "proud of my family" type of kid that she is, and then when the party was over, had a sleep over. So the party just kept on going!


Monday, on the other hand was much, much different...
Kenny had his speech therapy and his occupational therapy at the hospital...like he does every Monday. Except this Monday he chose to show his meltdown side....for the whole commonplace area of the hospital to witness. It was following his speech therapy in which towards the end of, his therapist (whom is a replacement for the one he loved) nonchalantly mentioned to me that the Cleveland Hearing and Speech center would be much more helpful...well...resourceful and able to help Kenny with using some kind of language...be it voice or sign. Because of his unability to pick up on...errr...uhhh...understand things clearly. I told her that he did go there a few years ago, but because he missed many appts due to his immune system and lungs being so weak (and being in the hospital much of the time), that they pretty much told us bye-bye and discontinued their services for him. I WOULD go back there but it is located much farther away than where he goes now...and with a 12 passenger van, our gas budget is already at it's highest (insert disturbed and upset face here).

I was honestly at a loss for words because of what she was saying to me! What, didnt she want to take that extra little bit of time and work with him? Didn't she think she could help him? His other speech therapist that left never was unhopeful or looked/acted as if she didn't want to be there or teach him signs or show him how to form sounds into words! This one I see getting frustrated with how he won't talk back or do what she wants...I guess that twenty-odd minutes that she works with him (once a week) must be the toughest part of her week! Ugh!
So as we left that lovely therapy session, I was feeling a little sad at the fact that now is when the "pushing the special needs child on someone else" starts. I was wondering when it was going to happen...well, it just started.

Fifteen minutes between therapies...
I had just enough time to run to the main (common) area to get a cup of coffee and a bag of chips like we always do and that is when all he** broke lose. My beautiful miracle of a child decided to scream, fall to the ground, ripped the hearing aids out of his ears and throw them in different directions....as I'm juggling my purse, his coat that I was carrying and a very hot cup of coffee...I reached for the hearing aid closest to me and spilled my coffee all over myself and the ground. All the while, people are staring at the bad mom that can't control her spoiled, screaming child in the middle of the hospital. Who at this point is scrambling after the second hearing aid AND one shoe that said child has now decided to take off and throw. I just knew the other shoe was next...followed by the shirt if I didn't calm him down...and fast. Oh where was the duct tape when I needed it the most (to tape his shoes on around his feet and legs so he wouldn't/couldn't take them off....what did you think I was gonna us it for?!).
After about 10 minutes of utter horror, I finally got him calmed down which was a miracle in itself! I couldn't bribe him because he really didn't want anything...he just threw a fit because I got fritos rather than my usual, pretzel nuggets like I always get...and he just flipped. This is classic example if how bad his OCD is getting. And then off to OT we went...and he was fine...I on the other hand was ready for a straight vodka shot and a padded room!

OT went much better than speech and our coffee break...thank GOD! We actually made it out of there with some progress. She got him to try to eat small bites of the Fritos that I bought. She also tried to get him to drink from a cup, which was a huge fail. Yes, my son who is almost 5 still drinks from a bottle....and no...I'm not a lazy mom who hasn't tried to get him to drink from a cup (I've tried several kinds...and he just can't get it) so no judging please.
So there you have it. A tired mom after a busy weekend along with a very high maintenance, special child...doesn't get much better than this!

The stressful life of an older micro preemie

The mornings go something like this....
Wake up at 5 am to enjoy a little bit of me/quiet time. Wake the kids up for school....wake them up again...and finally one more time did the trick! I make sure the kids put their clothes, socks, shoes, backpacks with all homework in it, and anything else they need, out the night before. This usually means that I am running around like a crazy mom trying to find one thing or another in the mornings. They are finally up...all 6 kids, that is everyone is up except for Kenny whom I try to let sleep as long as possible because I know when he gets up, the morning...the tranquil for the most part morning will be totally interrupted.
uh-oh...he's up! Darn...this is waaaay to early for him to get up! I have to iron some pants and a shirt or two, look for Kayleighs missing school shoe, break up an argument between sydnie and Morgan, sign a few papers that were given to me last minute...because my kids just...well...forgot to give them to me.
ok, all is ok...he's got his bottle of pediasure and his "taggies" which are the pajamas with the snap over flap covering the zipper...yes, he's the only kid I know that has always loved this taggies! I have to make sure he has his clothes out for preschool, especially his shoes. Oh the shoes...his biggest obsession! He HAS to have them on as soon as he wakes up in the morning or he flips out. It has since gotten much worse of an obsession as to now he is obsessed with making sure I have my shoes on and Gina has her shoes on. When I tell him no, all he** breaks loose! The quiet setting has turned into the worst stress scene you've ever seen! The screaming at the top of his lungs...and it's a high pitched scream...followed by the occasional head banging, removal of his shoes (which are then thrown), his socks go next and finally his shirt and pants! He has tried to remove his diaper but I've caught him before that point. If he'd of had his hearing aids in, those would be taken apart and thrown all over the house where we'd have to search for them for hours!
These breakdowns just don't happen here at home in the mornings...Nope, they happen all day long here, it happens at the grocery store, church, basketball games, restaurants, etc...they have made me/us a prisoner of my own home! I though RSV season was bad...this is by far the worse thing I've had to deal with. We've tried time outs on the couch, a smack on the hand, ignoring and several other discipline ideas...the thing is, he knows some things, but still developmentally delayed as to not understanding everything.
I am lost, down and extremely discouraged about this...and it's just getting worse! I've put calls onto his neurologist, his comprehensive care docs, and also his autism worker that is working with us with the P.L.A.Y. Project...I'm just feeling broken right now. I guess this is what the doctors have warned me about...and I never thought he'd be like this. I feel so bad because I'm trying to do the right thing but I don't know what it is. His OCD had gotten so bad and I'm scared.
Are there any other mom/dads/guardians out there that have had an older micro preemie going through this PLEASE help me. My heart hurts for him, my stress level is well beyond my limit and I just need encouragement that this is fixable.

Reason one million and one...

Why I love and admire my very strong (and challenging at times) son...and fight every day for prematurity and the repercussions it has on a person...not only on the child, but the parents & siblings.
His feeds are going so-so. He fights us on some of them along with trying to take off his backpack. He is trying to eat a little more and THAT is a great thing!

Happy Valentine&apos;s Day

We had a wonderful and quiet Valentine's Day! I made my little crafts for the kids to take in for their valentines to pass out. Gina and I made and surprised everyone with valentine cookies...and I made all my little loves their very own valentine from me to them!

A reason for all of this...

As you know, I've been having a hard time of things lately and feeling like I have no sense of self...who I am. I feel like just a mom, a maid, a mother of an angel baby, a caregiver to a special needs child...not exactly what I hoped to be...minus the mother part. Life has been overwhelming as of lately and I let myself fall into the self-pity trap. Part of this is because of lack of sleep, having been sick for a few weeks, and then there are some other issues...
So as of this morning, after a WONDERFUL full night of sleep, (Yes, Kenny only woke up one time...and no, I didn't have his feed hooked up to him. I think it was also because he woke up at 5 AM the day before, and he was going, going, going all day long...until he finally passed out at 7:30!) I decided to start the day off on a positive note. I worked out (which I stopped for a few weeks), and started to really work on potty training Gina...yeah...no comments about her being 3.5 and still in diapers...she is very close to her brother Kenny and he is nowhere near being potty trained, so she feels/felt that she didn't want/need to use the toilet. Well, she went "number 2" on the potty twice already and is doing an awesome job! YAY!
Then, to top everything else off, I decided to help Kenny learn to put his shoes on....
Don't mind the sideways filming...I had no idea what I was doing.

The reason for this post is to let everyone know that I still feel like my life has been put on standstill and that I really don't have time for myself and what I REALLY want to do....but helping my kids...seeing how excited Gina is for going on the potty and especially Kenny with working on putting his shoe on....I am the proudest mommy ever. My reason for being here is this...and I was chosen to be a mommy to a special needs/chronically ill child for a reason. My days are filled with teaching, helping, medications, calming, lots of worrying and stress...its basically like taking care of a really sick & colically baby for 4.5 years,  but I just love my kids and my "job" until I can fulfill my dream of owning a headpiece/bridal store.

Just look at the look of pride and excitement on his face! I heart my miracle!

Trying new things thanks to Pinterest

With all the craziness that my mornings bring, from getting 7 kids up and ready for school...breaking up fights for the use of the bathroom, the tattling on eachother, the lost items that the kids can't find, but are sitting right in front of them. The crying and clinging of Kenny and his obsession of having to have his shoes on his feet the minute he wakes up...the breakfast making, the ironing, and the making sure each kid brushed their teeth, got all their papers, books and school stuff packed in their backpacks...I got a little crazy and creative this morning with the girls hair. All they wanted was for me to put it up in a ponytail...but because of MY obsession with the site Pinterest, I am trying to do one (or more) creative things that I find on Pinterest to do every day to get me out of my funk. So these are my creations I did this morning. Now, grant it, I didn't take my time on these like I guess I could have but honestly, I really didn't have any time to with everything I mentioned above going on. I think they turned out pretty good for my first time!
Today hairstyles...tomorrow...building my dream home! Tee hee

BTW...follow me and my boards on Pinterest...if you need an invitation, just send me a comment or e-mail and I'd be happy to invite you!

Letter to younger self:

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...

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

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..:(

‎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!