Fallen off from normal

This weekend Tony and I found out just how different Kenny really is from the other kids. I mean, we knew that he was different, but this weekend opened our eyes to the fact that we cant do the things that normal families can do...go to the mall, rummage sale or even to get ice cream. It all started on Friday night...

We decided to go to the mall (the first time in years). We thought, because Kenny is 3 that we could just walk with him and Gina (instead of using the stroller). All was going well, Tony had Kenny and I had Gina. With Gina, if I let go of her hand, she either follows me or holds one of the other kids hand...never wanders away from us. But with Kenny, the minute you let go of his hand, he takes off and doesn't care where he goes. It's kind of scary because we cant take our eyes off of him not even for a minute. He was never out of our site, but sure did give us the run around. If you hold him and he doesn't want to be held, the temper-tantrum starts. And for a little guy, he is very strong. So the mall wasn't a total loss, we just did a lot of hand holding and walking.

Then yesterday, we got an early start to the day. We went to a rummage sale at our church. Again, chasing the Kenster all over the place. We learned from last year that taking a stroller into the sale was not even an option because of the isles in between the tables. Not to mention, the stroller is on its last legs, so it was a no-go with that option. The other kids were having a blast, especially the girls and the jewelry table...ahhhh...the changing of age...no more is the vision of the girls going for toys...its all jewelry these days. I love it! Anyhow, Kenny decided that he had enough of running through the isles and having people tell him how cute he was (which he doesn't quite understand anyhow), he decided to start throwing one of his famous temper-tantrums...we got him into the van at top speed. Again, not horrible and actually very typical for a little kid. He was fine after that. We then dropped Taylor off at her friends house for an end of school year party and headed off to grocery shop. This is always an experience with Kenny. This is the time when he starts to get vocal. If Tony and I split off to save time on the shopping, I can always find where Kenny and Tony are (if he has him). Kenny always is "aahhhh-ing" or "uuuugggh-ing" at the top of his lungs. He isn't doing it for any other reason than just to be loud. We cant figure it out. He doesn't throw temper-tantrums or anything, he is just loud...just like he is when I try to take him to church...there are a lot of dirty looks and stares from strangers...and then every once in a while, we get a person who is as sweet as can be and just start talking to Kenny or us with a smile (but that is far and few in between). We made it out of shopping without too much going wrong...just typical stuff. The kicker was at 8 at night when we decided to treat the kids to ice cream at the little shop down the street. Picture this...a big 12 passenger van pulls into this little parking lot, a fairly large group of people standing in line waiting for ice cream and the Tomeckos pile out of the van...dun, dun, dun....

I was very willing to wait in the car with Kenny and Gina...knowing all to well, it wasn't going to be good. There was nowhere for Kenny to walk. He wont just want to be held or stand still...he just wont. But no, Tony wanted us all to be a family and do what we used to do...I kind of wanted everything to be like it was too, so I said, "what the heck", and out we all went.

We all ordered out ice cream...I ended up getting a cup full knowing that 1)way too hot, the ice cream was going to melt way too fast. and 2) I'd probably not finish it due to running around after Kenny...I don't have a problem with Gina...she stays put. Well sure enough...one thing led to another...Sydnie and Kayleigh couldn't eat the ice cream fast enough. It was melting everywhere...then all of a sudden, plop...Syd's landed on the ground and the tears started. In the meantime, Kayleigh was having a hard time with hers...I grabbed Kenny from Tony and Tony went to go get a new ice cream for Syd...in a cup this time. While he was in line for Sydnie, I was holding Kenny...I walked over to the very crowded ordering area to tell Tony to get a cup for Kayleigh for her melting ice cream as well...when Kenny decided to throw the biggest fit ever. I could barely even hold him. I finally got a hold of him when he pushed away from me, arching his back and he flew out of my arms (almost)! His head was inches...I mean inches from the concrete sidewalk. I had the tightest hold of his legs and feet ever. I was freaking out. It was the longest few seconds that I ever had! And no one helped me. With people all around me, no one bothered grabbing Kenny from falling out of my arms. They had the looks and the little comments to each other, but no one helped me. Tony ended up grabbing him. When I say that he was hanging from my arms, he was...it was horrible. All because he pushed away from me while I was holding him...all because he wanted to wander off. I quickly took him to the van...yes, I was shaking very badly...He was screaming his lungs out (gave the people in line more to talk about). Kayleigh started crying because the ice cream store wouldn't give Tony an extra cup because they were running low...even though they saw that her ice cream was dripping everywhere...and that we were going to buy the stupid cup. Over all, it was a complete nightmare. We got home and cleaned up the kids and I took Kenny and Gina to bed. Gina fell asleep the minute her head hit her pillow...and Kenny (sleeping in our bed with us) curled up against me and fell asleep.

So some may say that it was because he was tired, but no...its like this all the time, everywhere we go.

This is why I posted the post before this one about kids that wander. We don't know if Kenny has Autism...it was brought up, but there hasn't been a definite diagnosis. But it doesn't matter anyways because kids with developmental delays also wander. Our life has changed 110%. The normal family life that we once had, the one that most people with nothing wrong with their child/children have...the "pick up and go" life is no longer. We now have a new normal for us. One that I am hoping and praying that our other children understand and are not resentful about. We have learned one very important thing in this new life that was chosen for us...and that is the non judgemental side of life. Don't take the simple things for granted, like going for ice cream with your children...

God, I would love to have a "normal" life, but this one is so much more interesting and it just keeps on getting more and more interesting as the days/months/years go on!

Please take a few minutes to read

I am posting this for all of those who are parents or who know parents (be it family members, neighbor or just a person down the street). I am speaking from experience...Kenny is a wanderer. If he could, he would take off and just keep going. If we don't keep up on making sure the side door is closed, he will open it and leave. The other day, when we were at the mall (1st time in forever), Tony had to hold Kenny's hand or hold him because the minute he let his hand go, he took off....where as Gina stayed right next to us. This is not only for kids with Autism, this is for kids that have developmental delays as well.

Please take the time to read this very important information...especially now that it's summertime and pools are open...and so are doors.

Click on this or picture below:

Eye patches and more

Well today is the first day of eye patching for Kenny. The ophthalmologist saw Kenny on Wednesday and said that he has considerable scar tissue on his retinas from the ROP and laser eye surgery that he had when he was in the NICU. This is the "complications" that we have heard about with the ROP/surgery. Glasses are not an option...I forgot the reason...but the doc told us that he will need surgery in both eyes, but not right now.

He is actually doing amazingly great with wearing the patch...he's not even attempting to rip it off! YAY!!!

Not too much more has been going on these last few days...Kenny and Gina have been really enjoying the deck and playing from morning to night on there. I am hoping that this will keep Kenny from getting any sickness that may be lurking around.

Next week Kenny will be going to start preschool at a local elementary school. He will be getting his therapies all in (ot,pt,and speech)...I am so excited about this. The only problem is that they have him down as school transportation...not too sure about this. I think I would feel much more comfortable if I drove and picked up. We'll see how it goes.

The older kids have been addicted to Glee. Oh yeah...it is recorded on our TV. I think I know every word to every episode! LOL So, while they are not watching Glee, I've been hearing how bored they are..and they are very vocal about it. To me, it's my "Welcome to Summer" vocabulary which I am way to familiar with. So I am trying to find fun (inexpensive) things to do with 7 kids...from almost 13-1.5. Its not that easy. In the meantime, it's back to the summer dayz...enjoying the corn on the cob, summer fruits - peaches, melons, and cherries...my favorites!

DreamNight at the zoo

What a wonderful thing the hospitals and the zoo does for kids with chronic illness/disabilities and their families. It gives the child and their family the opportunity to experience the zoo and all it has to offer, without the big crowds that would normally be there. We could never just go to the zoo for that reason. We took the kids to this invitation only event on Friday evening...the kids had so much fun.

They got to pet animals...Hold extremely large bugs that I get chills at just thinking about it...See the dinosaurs (very neat might I add)...We even had a chance to just relax...for once.I told the kids to make a funny face...we went inside the animal hospital and got up-close and personal with exotic animals...Gina had a blastI think this was the highlight of the zoo for the boys...
I am so thankful for them for putting this on. This is the second year that we went to this event. It gives the kids a chance to let loose and be kids without all the looks and whispers. It was a perfect ending to a perfect day on Friday.

Goodbye school, Hello summer!

Its been forever since Ive posted. Life has been keeping me very busy this last month.

-The garden is in...woo hoo.

-Kenny has been going to OT/PT once a week.

-Its been so warm the kids have been playing outside...so it gives me a chance to get some sun and enjoy the beautiful weather...sure beats being confined to the same four walls of the house...blah.

-We have been fighting a horrible ant problem in the house (just like every year).

-And because of the heavy storms that we have been having, our one side off our house (the side with the wall that is...um...well..bowing out. It is really starting to pull the steps and wall away even more! Its really looking bad and we don't know what we are going to do with it (come on EMHE teehee)

-I am so happy that in this last month, no one (knockonwood) has been/gotten sick.
-Kenny has been trying to eat a little more variety of foods lately...spaghetti o's, small pieces of bread, pudding, and finely shredded cheese. Now the spaghetti o's he has had a hard time keeping them in...he threw them up twice...so not sure what that's all about...but the pudding and cheese have been a good choice that he seems to enjoy.

I really think the fresh air and sunshine are very good for him...actually good for everyone. This weather just makes me feel refreshed and honestly feel good about life. Sure, we have our share of problems...but being outside with the kids...playing in the sprinkler, the baby pool, shooting hoops in Jerry's driveway (our neighbor that passed away), working in the garden or just whatever...it is so refreshing.
sooo...

Yesterday was the last day of school for my four older kids. The last few days of school always brings a tear to my eyes. We started off with Lunch with a loved one on Thursday. This is where we go to the school with a lunch of our choice (which is usually McDonald's or Burger King) and just spend lunch with our child...or in our case...4 kids. Of course, we bring all the kids and have a blast! After we eat, we go outside and the kids just play with their friends and I take tons of pictures. I just cant believe that my oldest child will now be going into 7th grade...wow...talk about "where has the time gone". Wasn't I teaching him how to walk and talk? Wasn't it just yesterday that I was crying my eyes out because my baby was starting Kindergarten? Where has the time gone?

Then

Now

I have made it a point to try to enjoy every moment of my kids lives. Yes, this includes all the fighting that goes on between them (lol). I am going to start listening to them more. I am going to try to do more things with them. I am going to enjoy the greatest gift God has given Tony and I....our big family. I am going to laugh at the spills and messes that are made. I am not going to freak out about the house not being perfect...because it wont be...not with 7 kids, not with the fact that it is just old. I am going to enjoy the little things in life...the small miracles that is given to us daily...we are here...alive. I have great friends and family. We have our health...ok, so Kenny is not so healthy but he is here and he is happy....that is all that matters. I will enjoy the time when he is NOT in the hospital. I am just going to take life a little slower.

With it being the end of the school year, many families that we have befriended at the school are moving on, so it was another year of goodbyes. There was a prayer service that ended the school year...where the teachers along with the principal and the pastor all bless the students...something that I look forward to every year and is very special and meaningful to all everyone.

My kids did very well this year. I am just very proud of them. With everything that they have been through this year with Kenny in and out of the hospital pretty much from fall through spring, our neighbor passing away, and with me getting sick, they all did awesome. So as a special treat to them, I decided to treat them to lunch at Eat N Park with my friends and their kids. It was a riot! 14 kids and 3 adults in a restaurant...thank goodness they put us in the very back. But honestly, they were pretty good!

So another school year has come and gone...and yes, we all survived. Here's to the summer and what it will bring...be it something small or big...I welcome you and look forward to my favorite time of year!

God is good...

Its been pretty quiet here at the Tomecko house...no one sick (watch I just cursed it).We celebrated Kenny's (and Nicks) birthday with all the family. We had a really good time. The best part of the party was when we were singing "Happy Birthday" and Kenny, just out of the blue, looked up at the sky...almost as if he was looking at Nick. When we were singing, we sang to Kenny AND Nick...so I am sure that he was right by Kenny the whole time (at least I can only pray). He got a lot of summer clothes and developmental toys...which he desperately needed...not to mention cool shades and a couple of bouncy balls. LOL!
Kenny did "graduate" from the Help Me Grow Program. So we had to say goodbye to all the people that have been there with us through the first 3 years of Kenny's life. Yes, it was sad...I admit, I cried like a baby saying goodbye to everyone. I am though, pretty excited (and scared at the same time) about what the future has in store for Kenny and us. He is all signed up for preschool. His preschool will be working with him in all aspects of his disabilities...that is what I am very excited about. I am still trying to find out how to go about getting Respite care for him. We have started up on his PT/OT at the school for him....He really likes it! I cant wait for him to really get involved.
Wow...it really HAS been pretty uneventful...LOL...lets see, Tony (husband) has been bombarded with work which is wonderful...I mean, he is working nonstop usually til 4-5 in the morning, but we are thankful that the jobs are coming in again. The two biggest jobs were Cystic Fibrosis walks and an American Cancer Society street banner that is 45' across both sides.

And while he's working making signs, I get to deal with 2 toddlers that love to get into mischief! Gina is a handful lately! Note to anyone that is thinking of getting a freezer at the bottom refrigerator...DONT! Gina is in there ALL THE TIME...nothing works with keeping her out of it! The minute I sit down...bam..I hear her in the kitchen and its up and about again! LOL who needs a workout at the local gym, I have 2 very active toddlers!


I also want to ask you all to please stop and take a few minutes out of your day to just reflect on what you have. I mean, yeah, we all have our bad days but thank God (or whoever you worship) for all that you DO have. I know I sit and complain about how small my house is, how much Kenny has to go through and this and that...but, I AM so grateful and thankful to God that I have a wonderful husband and that we love each very much. I am grateful for my children because they are all perfect, no matter what. Yes, I could get so ticked off at them for not listening, cleaning or fighting with each other, but they are really good kids...they have great souls ;). I am also very blessed to have a great family (sisters, parents, in-laws, nieces/nephews, etc.) and friends. Helped us through many troubled times.


I am thankful that God has blessed us with so many...I mean, wow...8 children...and we are able to provide, love and take care of them all....just in a cramped little house. Which brings me to my next blessing, our home. Yes its small, falling apart(literally) around us, but least we have a place to call home.

I know, at times have lost faith and hope, but then God surprises me and shows me that things will be alright. I have learned from a few friends whom I have never met, but feel a very strong friendship bond with these ladies...they have shown me that no matter what, life goes on and faith above fear! My one friend has fought cancer and is now dealing with the fact that her husband is losing his hard fight with cancer as well. They have never given up or lost faith. They are taking it day by day with dignity, courage and faith. Her blog is Making the Lemonade of Life. Her, her husband and her children could use all the prayers, good will, and positive thoughts that you all could give them!

The other one of my friends, her son is battling Mitochondrial disease. She has a Caringbridge site for her son in which you can read her sons fight... HERE. He is the same age as Kenny and has been in the hospital probably more than at home. Her and her husband have another child as well...needless to say, it has been such a tough long road with their little guy...and the future is so up in the air with him...they could really use your prayers as well. No matter what these strong and amazing women have been through, are going through and will be facing in their futures...they always have such kind words and big hearts for others...not to mention their faith is overflowing...I am at awe when I think of these friends of mine.

Nicks Angelversary

It seems like that day 3 years ago went on forever. Seeing him in the NICU and telling the nurses to keep an eye on him because I didn't like the way he looked. Walking back to my room and then the nurse came in and told me that there was a problem with him. She already called Tony to come down to the hospital. I cried so hard. Rushing back into the NICU seeing the doctors and nurses working on him. Ordering blood transfusion after blood transfusion. Sitting in chairs 20 ft away, unable to do anything but watch and pray. I wanted to throw up, cry, run out of there...anything to not face what was happening. the nurses handing me tissues and water. Just sitting there with Tony. It was three hours...three hours, maybe even longer. I knew in my heart that God wanted him to come home. I just knew it. But I just couldn't believe that my worst nightmare was happening. HOW could it be happening? When the doctors told us that there was nothing more they could do, we cried and cried. He was still alive, do something...anything...dont let my baby die!!!!

They handed him to me to hold for the first time. I held him. I was finally holding my baby. He was so little, so light, like holding a doll. But he was real. He was alive right now. He was our baby. Our baby that was leaving us. I looked and studied his face so I wouldn't forget any detail about our little Nick. The way he smelled, the cute little chin that looked just like Kennys, the perfect blond hair...I kissed him and kissed him. He was still alive....cant someone do something...anything. Don't let him die. I held his face against my face telling him it was alright. Uncle John was waiting for you with open arms. He needed a nephew, a baby up there to hold since he's missed out on all his kids growing up and all his nieces and nephews...and his own grandchildren. Nick was going to finally meet Uncle John. I told him that it was alright...mommy and daddy would be alright. Watch over us, your brothers and sisters, your twin. How could this be happening. It wasn't supposed to turn out like this. I wanted your brother and sisters to meet you, they were so excited. They never got the chance to see you.

I didn't even get the chance to hold my twins together, to get a picture of my twins together...the nurses then asked if I wanted pictures of my twins together...yes...God yes...but not like this. I wanted to be holding both babies, pink and fat, bundled up with little hats on their heads...crying and wanting to eat. I wanted pictures of them together playing, sleeping, the first day of school together...all the firsts...together. Not like this. It wasn't fair. My cheeks were red, from so much tears and wiping...I just wanted this day to have not happened...but it did. I miss you Nick with all my heart and soul. When you died, a part of me went with you. I wanted you to be part of our big, crazy family. You made me realize that life is a very special gift. I just wish that we had more time to spend together...but isn't that always the case. I at least got to tell you that I loved you very very much and I know you put up a fight to live...but now you are watching over your twin and helping him get through each day. Its hard, its very, very hard. A parent should never have to bury a child. I miss you my angel...I miss you.

Happy Birthday to my twin boys...

To my Twin Boys...

(reposed from last birthday...cause...well...I'm just not feeling good and I loved this poem that I wrote!)

You both were dreams and visions of love

Inside me, I had you both, and thanked God above.

I prayed and prayed that you'd both be healthy

I'd give up everything including being wealthy.

Nick on my left and Kenny on my right

It's a feeling of having twins that was so in sight.

A dream that came true, but with different results

I cant help but feel that it was somehow my fault.

A mom is supposed to keep their children safe and warm

I couldn't do that, the day you both were born.

I cried the night I saw both of you, you looked so unreal

that my Nick and my Kenny I could no longer feel.

Nick you put up a fight to stay here with us,

but God wanted you close and you didn't put up a fuss.

We held you close the day you went away

I love you, I love you, is all I could say.

I told you to look for your Uncle John in Heaven

I bet he wouldn't believe that we actually had seven!

Kenny would miss you with all of his might

but we know that you are with him every day and night.

It would have been fun to celebrate with both on your day

the birthday of my boys, my twins I should say.

Kenny is our miracle, he is our little guy,

I wouldn't trade him for anything, I would much rather die.

God chose this life for us and for him,

We just have to have faith, that his light will not dim.

The problems and issues with you, that we see

will make us better people, I think that's the key,

So as we celebrate your birthday, yes I am happy but sad,

I want you both to know that I am trying so so bad!

See, I prayed for my twins that they would make it through the days

and now I see that they have, just in very different ways.

I am a mommy to twins, one in Heaven and one on Earth

How lucky am I to have actually giving my twins birth!

Our family has an angel and his brother he watches over,

It's better than finding a lucky four leafed clover!

Kenny, I look up to you, you are such a strong little guy

You lost your other half and you couldn't even say goodbye.

As We celebrate your birthday(s), I want you to know,

I will be with you and love you and help you to grow.

We will make it, I promise, all of us together

That's why God gave you both to us...in our hearts, forever!

It wont be easy, but we all will help you through

With hospitals, therapy's and anything new.

My love for you started when God gave you to me

And it will never end, not from now till eternity

So Happy Birthday to my twins, Mommy loves you more than ever

I promise to love you, think of you, be here for you now and forever!

Happy Birthday Kenny and Nick...Mommy and Daddy and your brother and sisters loves you both so very much.

Kenny, I will help you become the strong, loving and successful person that you are meant to be. You are an amazing little boy who puts a smile on my face every day. No matter what happens, we will be here for you and help you through any obstacles that you may face in life. You are my miracle and would do anything for you and your sisters and brother. And for you Nick, my angel, I pray that you are with Uncle John and Great Grandparents and others that have been part of our lives. Until we meet again my love, Keep the lights going on and off coming! I hope Uncle John is taking care of you! I miss you so much...my heart is broken because your not here. Your Daddy, sisters and brothers keep me going and my faith that you are with Uncle John and Grandmas and Grandpas help me make it though the days!

I am so happy that God gave me my children.

To have Kenny and Nick on May 2 is something very special (yet sad).

I don't usually go all "number-ie" but these numbers are very ironic...almost like...well...like it was meant to be....

We had 5 children = May (5)

Then we had our twins = the 2nd day of May (2)

total kids 7 = the year...2007

WEIRD

Here's another one...No one can say that Gina wasn't supposed to be here....We had 7 children = July (7)

We had 7 children + added one (Gina) = the seventheenth day (17) (one & seven)

So total kids 8 = the year 2008

Oh yeah...God does beautiful things!

Just a few updates on Kenny

Yesterday morning we (Tony and I) had a meeting with all the teachers/therapists/special ed teachers that will be working with Kenny. The appointment went really well. Kind of overwhelming with all the talk of what he needs and what he'll be getting, in terms of his therapies and education. He is approved for 4 days a week, 2 1/2 hours a day for special ed/preschool. They will be working with his severe hearing loss (click on the highlighted words to see the web page that shows what it is all about!)by teaching him signs, and working with him to start forming more words to show us what he wants. They are also getting a FM system for him personally. They worked out an IEP for him which includes cutting with scissors, riding an assisted tricycle, climbing, following simple directions, etc... He will be going the month of May for OT/PT/Speech and then starting in June, he will be going to "summer school" .They evaluated him at being between 8-18 months of age developmentally. I am very sad about this but so happy that they are going to help him and work with him to get where he has to be.



Now on to his weigh in at the hospital...

He lost weight.

The doctor mentioned to us that we are going to have to throw around the idea of a G-Tube. His head/brain is just not getting enough nutrients which he needs to develop normally. So, it doesn't really have much to do with his weigh...it does, but they are more worried about his brain development. I am very scared about this. I know this is the best thing for him..I don't want him to grow up without us trying everything we can to give him the best life possible. I don't want him to be so developmentally behind that he cant do anything for himself. I want him to be normal...God...I just want him to be normal. He had lab work done...6 vials of blood...and he didn't even cry! They will be testing and looking for anything and everything from Cystic Fibrosis to allergies. He will be going to his cardiologist appt in a few weeks and then at the end of the month, we will talk about what to do next. It could be that his heart is causing the lack of weight gain, sick all the time...etc. So we will see what the future holds this month.

Kenny graduated from the Help Me Grow program and is now a 3 year old (well, tomorrow)! There are so many people that have come into our lives because of Kenny (and Nick). The women from Hospice, Barb from the Board of Health...his service coordinator, the therapists that worked with his PT/OT here at home, also Anedra from Regional Infant Hearing Program... OMGosh...all these people AND MORE, have helped us go through the first 3 years with Kenny and how to deal with the death of Nick. Simply amazing! So for those that are just new to the journey of either losing a child and/or having a micro preemie...PLEASE use all your resources! There are people out there that will help you get through this new lifestyle that is ahead of you!

I just cant believe that Kenny (and Nick) will be 3 tomorrow!

This week is the hardest for me

For the next few days, I am going to be writing some thing to honor Nick and Kenny's birthday and Nick's passing. For me, this week is a tough one. Every year for the last 3 years and for the rest of my life, on May 2nd I will always remember...more than just a normal delivery of a child full term child. I gave birth to my twins at 23 weeks gestation (17 weeks early). 1 pound 7 ounces.

It made me fall to my knees. It will always make me wonder. It is a time of excitement and fear.

It is Kenny and it was Nick.

Three Years Ago...

3 years ago seems like yesterday.

I can remember each moment...

I can remember each second.

praying so hard,

not knowing what else to do.

How could this be happening?

What was our future shaping into?

The feeling of life...

every movement,

every kick, was so wonderful.

The reality of it all was just so against us.

God, it was happening...

we were going to see you both.

The uncertainty of what was going to be...

The unknown...

was so numbingly real.

To be so excited and happy about having you both...

yet knowing that the odds of survival were so, so low.

What were we to do?

I cried,

cried until there was just nothing left.

I prayed,

prayed but was so sure God abandoned me.

Five months of praying,

it came down to this very day...

This very moment.

The cut left a scar more than just physical,

much deeper than that.

Taking you both from me,

knowing that it wasn't in my hands now...

you were in Gods hands...

you always were.

To get excited like other new parents of twins,

it didn't happen.

In recovery, I sat there

numb...just numb.

Do I pray for your forgiveness?

What else was there to do?

What else was there to feel?

Laying my eyes on you for the first time,

God you both were perfect.

So shockingly small, but so perfect.

Couldn't touch you,

couldn't hold you,

didn't know if you'd make it through the night.

Brave little boys, my brave little boys...

God blessed me with two perfect babies

that were just born too early.

What was the reason?

Show me why God.

Then He did.

He showed me,

he showed us all.

No matter how small,

He makes no mistakes.

Through triumph and tragedy,

tears, pain, laughter and happiness...

He makes no mistakes.

Three years...

Three years He has shown

how beautiful life can be

and also how delicate it is.

We celebrate life.

We celebrate our twins,

One in Heaven and one on Earth.

We celebrate the smallest of miracles.

We celebrate the accomplishments, the struggles,

the smiles and the painful tears.

Life is a struggle.

Its not easy

not knowing...

not knowing what tomorrow or even the next hour will bring.

Still searching for the reason,

but understanding

its all in the hands and plans of God.

Three years ago

Three years ago you made my life forever better.

harder than most,

but so much better.

To see things from another view.

To have helped and to be helped.

Been hurt and scared.

Hurt by seeing you helpless, sick and struggle...

and scared of losing you

and scared for our family

your brother and sisters.

Scared that they now understand heartache.

Heartache of loosing a sibling

Heartache of watching you sick so much.

Scared for what tomorrow holds.

The people...

The people that have walked this journey with us

amazing to say the least.

I would never have known this life,

the people,

the caring loving people...

the true value of life,

the true value of family and friends.

Others that are struggling with illness and disabilities,

disabilities and illnesses that could change life in an instant.

The loving smiles,

kind gestures

and knowing we're not the only ones.

We're not alone.

Seeing that there is more in life.

more than just

trips, money, and materialistic things

Our big family has love, understanding, acceptance and faith.

We are also gaining courage.

No matter what tomorrow holds

for you and your brother and sisters...

I will hold your hands.

Help you through each day.

I will laugh with you,

cry with you...

wipe away your tears.

I will push you to do your best,

and pick you up when you fall.

I will be stern in your daily medical needs

but also let you be a little boy.

I will not let you forget you are a twin,

but let you move on as an individual.

Be proud of who and what you are here for.

Three years it has been, three years in our lives and hearts.

Immunology and Pulmonology

OK, so latest update on the Ken-man. We went to the pulmonologist/immunologist yesterday...very good appointment! Great doctor. We are taking him this afternoon for blood work and a urine sample to test him for EVERYTHING...from Cystic Fibrosis to allergies, We are leaving no stone unturned as to why he gets sick all the time with upper respiratory infections and sepsis. He is setting up an appt for Kenny to see a cardiologist because he said that it was 3 years too long that he has been seen last by one. He had a PDA ligation at 7 days old to close it, but he has also had a heart murmur...and with all his symptoms, he feels it best that he gets his heart checked out because it just to make sure it's still closed and that there are no underlying heart problems...I have been worried about this for about a year now...I guess it is mothers intuition or something.

He also is putting in an order for Kenny to get his eyes fixed! He had ROP stages 2 & 3 while in the NICU and had laser eye surgery to correct it. But now his eyes are starting to cross and stay crossed more and more.
So overall, a great doctors appointment!

And while I was there, I was asking him questions about me. The ER diagnosed me with and upper respiratory infection (acute bronchitis) and Pleurisy...well, I've been on 3 rounds of antibiotics and nothing. He wants ME to see a pulmonologist...so that is what I'll be setting up later on today. They are leaning towards the pneumonia side of it, but the one hospital that I took the latest x-ray at, lost my x-rays...LOL. I am hoping its not Pneumonia and its just this stupid pleurisy and infection, but I really feel the worst I've felt in all my life...I did get my voice back (for the most part). I don't have time to be sick, I really don't. Waaay to much to do and people to take care of.
We are headed to the time of year that I dread. April 21, 2007 I went into the hospital on total bed rest...for 2 weeks I was scared to death, prayed and begged God to keep my twins safe. May 2nd, I had them...2 days later, Nick died and then on May 11th, we buried him. Here I am, 3 years later, I wish those weeks never happened. This used to be the most beautiful time of year for me, flowers are out, warm weather after a bad Cleveland winter, Mother's Day, Communions...I loved it...now it is all just a bad reminder of what I never wanted to happen to me. I am sure, in time, these feelings will not be as strong. My Kenny is here, alive and that is all that matters. And my precious angel Nick, I just wish I had the opportunity to see him grow, like Kenny...get hugs from him, see him smile, open his eyes...I know everyone says that God only gives you what you can handle....I wish he would have had a little more confidence in me to be able to care for Nick. But on the other hand, he is with my brother and all of the other family and friends who have gone before us and from what I heard, its supposed to be a kick-butt place to hang...so at least I have my beautiful memories of him, holding him, talking to him. I know Nick is totally watching over Kenny and helping him through all the tough times that have happened and will happen to him...that brings me comfort.

another update on LL Cool K

He is home! He came home on Sunday afternoon. His fever broke and he was starting to drink his bottles. What a very scary couple of days! We thought for sure that he had sepsis again...but nope! Basically he had an infection and virus that caused a very high fever which triggered his epileptic seizure. So from this point on, I am going to be a nervous wreck every time he gets sick. Our saving grace is that he was allowed visitors this time around. They upped his Trileptal dosage a little bit and that is pretty much it.

I can only hold my breath and pray that his next seizure will be easier on me. It really took a lot out of me, especially since I have been sick with this horrible upper respiratory infection/pleurisy thing. I am exhausted beyond belief, I have no voice and am in pain...but hey, if my little fighter can pull through what he has gone through...and still smile, I can too! The housework is slowly getting done, the laundry too. We have doc appts after doc appts to start going to just because he and I have been so sick.

Which brings me to another point...

We need donations for the March of Dimes walk this Sunday! I know there is only 4 days left, so any amount would do! This is going to be our second walk and we are all very excited about it. So anyone out there that wants to donate...it would be greatly appreciated! :)

http://www.marchforbabies.org/personal_page.asp?pp=1886866&ct=4&w=4032059&u=mtomecko&bt=11

And on to other news...Gina is babbling, very cute I might add! I kinda missed this part of toddler hood. Kenny hasn't gotten to this point yet, so its so cute to see this.

And finally, on the Extreme Makeover Home Edition news...nothing yet, but even if there was, we couldn't say anything...(so if any of you readers out there want to send them an e-mail or regular mail...please do so)...we moved out broken dishwasher out to find this...

See, looks don't mean everything...its what is hidden behind the nice cabinets...UGH~

I can just imagine what is under the sink part (on the left). Not only is there rotted wood, mildew and mold, but we have ants galore! niiiiiiiice

Thanks for reading my blog. I really, really appreciate it. Sometimes I need a place to write out my vents. Thanks for listening to my rants and rave.

Heaven's Very Special Child

This was given to my husband from someone he met with today who also has a special needs child...I just wanted to share. It brought tears to our eyes...

Heaven's Very Special Child

A meeting was held quite far from Earth
it was time again for another birth.
Said the angels to the Lord above...
"this special child will need much love.
His progress may be very slow,
accomplishments he may not show.
And he'll require extra care,
from the folks he meets down there.
He may not run or laugh or play,
his thoughts may seem quite far away.
So many times he will be labeled...
different, helpless and disabled.
So lets be careful where he is sent,
we want his life to be content.
Please Lord find the parents who
will do a special job for you.
They will not realize right away,
the leading role they are asked to play.
But with this child sent from above,
comes a stronger faith, and richer love.
And soon they'll know the privilege given,
in caring for their gift from heaven.
Their precious charge, so meek and mild
is heaven's very special child."

Will this nightmare every end?

There is a reason why this blog has been so dead for the past week...a whole lot has happened. I've been feeling kinda crummy, so on Sunday I went to the ER because...well...when you cant catch your breath, get dizzy trying to breath, pain in the lungs and laryngitis...I figured I'd better get looked at. Come to find out that I have an upper respiratory infection, acute bronchitis and pleurisy. Ouch. So finally they gave me antibiotics and pain meds and sent me home. Its been a looong week. I have been exhausted. All I want to do is sleep, but laying down hurts my lungs. I have so much to do, that if I do rest, I am afraid I wont get up...really! I've also been worried that Kenny was coming down with something, even as far back as last Friday. I brought him in for his weight check and I mentioned to the doctor that it seemed like he was coming down with something. He was doing the post nasal drip gag sounds he makes (when he gets sick) and had a cough every once in a while. So fast forward to Tuesday night. He started this coughing at night...nothing major, just a little cough. By Wednesday morning, his nose was running like crazy. I put a call into the doctors at his Comprehensive Care and told them that I was concerned and that he was shaking like crazy, wasn't sure if it was small seizures or not...but then I decided to take his temp and it was 102. Ahhh...duh....THATS why he was shaking...fever!!! So they told me to switch off giving him Tylenol/Motrin, which I did. It broke the fever and he went outside(on the deck) to play...he was feeling pretty good. He didn't want to lay around or anything. About 7:30 pm, he wanted me to hold him. I changed him into his pj's and gave him a bottle, rocked him on the rocking chair where he fell sleep. My sister Andrea and her son, Dominic came over around this time...which she never does on a school night...I laid him on the couch to sleep (still no fever). Now, keep in mind, Tony, my husband was at the school in a meeting...phone not working there. At about 8-ish, we both(my sister and I) happen to walk into the living room and looked at Kenny on the couch where he was staring upwards. We both looked at each other and Andrea asked if he was alright...I wasn't sure until I went over to him and tried to snap him out of it. Then at that point, I knew he was having a seizure. He was burning up and just staring. I walked around holding him upright for a while (i was panicking, crying...not very brave)...we had little Tony and Dominic call 911 and I then gave him his Diastat, which I honestly never thought I'd have to administer to him. I stripped him down of his clothes and Andrea threw me a bag of peas to put on his head...it was horrible. The ambulance came and I ran him out to them instead of waiting for them to come in. The paramedics were the same ones from when Kenny had his seizure in November...they remembered everything! I just have to say that they were Awesome! I sent Tony and Dominic up to the school on their bikes to get my husband because he had no clue what was going on. I was trying to stay calm and remember all the meds...of which I know now to type something up (which I am doing today) that has ALL of his meds on it and All of his diagnoses on it. I was trying to remember everything and some things just came up blank! UGH!

Anyhow, he is now at his 2nd home, MetroHealth. On his favorite floor with his favorite nurses. When they wheeled him up from the ER (he was still really out of it) all the nurses were welcoming him back. It was cute.

They took tons of blood and swabs to culture to see what type of infection there is and where. His fever has been coming and going...as of last night, it was 102 and steady. So that is where we are at this point. His lungs sound and look clear...thank God, so its just a matter of trying to figure out what is going on with him. One thing is for sure, we now know one of his epilepsy triggers...a fever/virus.

I haven't been able to sleep there because I am so sick, so leaving him is just killing us! This whole thing...very overwhelming. I know that there is a reason for this...not sure what, but there is. Tony and I are becoming very tough skinned when it comes to things. Heck, I even hold Kenny's arm when they need to put an IV in him! LOL. We don't need anything but if you could just say a prayer for Kenny, that would be very deeply appreciated. The poor kid has been through more in his almost 3 years of life than any adult I know. We could also use some prayers as well (Tony and I). There are people in this world that have no clue. No clue as to what having a chronically ill child with disabilities is like. The terror in when he gets sick...not knowing if he will die (this time) or not. The countless nightmares, the being torn between hospital and having to work and take care of the other kids and the house. My sister Andrea finally saw what we go through...I feel bad that she had to see Kenny have a seizure...its very very scary. It's like looking at my precious little gift from God and seeing him being taken from me. We are exhausted. Emotionally and physically drained but wont let this get us down. I am very grateful to her for being here when it did happen. I was so scared.

Easter 2010

So I sit here unable to sleep. The thoughts of Nick and his dying in front of me keep haunting me. The thoughts of Kenny needing more, the other kids needing more...is just so badly weighing on me. I know that at this point, I need to get respite in to help. To ask for outside help is so hard. I keep trying to think that I can do it all...I mean, I am the mom, I should be able to handle all my kids...including one that has special needs, but I have come to the realization that I cant. I am not supermom. I am a human being that has been through he** and back...and not to my doing. All circumstantial...isn't that so typical? We have been approved for well over a year now for respite care and I fluffed it off like...yeah...we need it. ha....well...who would have thought, we really do. Kenny IS learning. He IS doing more and more each day. But, I have also noticed that he is different. The other day, I sat and watched him for a good 15 minutes taking socks and putting them in one pile...then taking them and making another pile...and then taking them and making yet another pile....it was very cute to see...he was so, so busy making pile after pile...but so not normal. Then the next day, he had pieces of paper and was doing the same thing! So that is where his Autism is rearing its ugly head. Makes me so sad. On another note, he has been eating a lot more. Well, today he only wanted 1 jar of baby food...but for the last 3 days he's been eating about 4-5 jars (6 oz) each of stage 3 baby food! HUGE STEP!! He also learned how to show "1" with his hands...very cute I might add. Still banging his head when he gets irritated and still throws his fits during the day...but I have learned to just hold him and rock him in the rocking chair or try to redirect him to something else...seems to work most of the time. To take that first step to getting respite care...to me....is a kick in the gut. But in order for myself, my husband and my other kids to be happy and healthy, we have to have some sort of help. Even if it is for just a few hours while I help the other kids with their homework or take them somewhere special or to have time for myself. Like I said on Facebook...I am feeling a little defeated in this aspect. I am a mom of 7 living children, I should be able to handle it...but I cant.

Never in a million year did I ever think I'd/we'd be in this situation. I am grateful that God thinks we are strong enough to handle it...and I guess, in a way, we are...I am up for any challenge...but a break would be nice every once in a while.

I had a few people on my FB acct. send me some pretty bad e-mails...I wont go into detail, but it was because we helped a few neighbor families that needed help...and we WANTED to help them...well, these people decided that just because we had so many kids and couldn't afford the better things in life for our kids, including food, why should we be helping others. And another was that we shouldn't of had so many kids if we couldn't care for them the way they should be cared for...well...lets see... the last time I checked, Do unto others as you would have them do unto you, was one of life's greatest sayings. If you just reach out to others...OMG it is such a good feeling! Yeah...we don't have tons, but...we have enough to live and love...to help others that are struggling more than us! Tony's slow season is over...things are picking up (thank God). So we ARE in a position....not great yet, but we can always help our neighbors or strangers down the street. We had people help us, still help us...we want to just pass the good will, the kindness on, that's all. And to all of my FB friends and family, thank you so much for your support. It really makes Tony and I feel so much better that we know we have backing by all of you!

OK...so enough of my wallowing in self pity....on to our Easter and other stuff...

Easter was pretty good. We made a couple of Easter baskets for the family down the street...the kids and parents were very grateful...and we loved helping them out! The Easter Bunny did good this year...not too much candy, just enough! H also didn't put the trail of candy from the bedrooms to the downstairs this year either, which is a family tradition, but because of a slight ant problem, that I was squeamish about, we asked the good ol' Easter B to hold off on the trail this year. LOL).

We did eggs...8 dozen to be exact. And it was very fun! I really miss the swirl eggs that we had when we were growing up, but I guess they don't make them anymore...bummer!

Each kid got a dozen plus, and STILL wanted to dye more! LOL!

As of today (Friday), we still have about 3 dozen left...God I hate hard boiled eggs lol! One can only eat so many before getting sick of them....yep, hit that point...thanks for asking! LOL!

I have also come to the realization that I really need a restaurant style oven...I have no cook top space! I made stuffed artichokes...my family's favorite and sausage and sauerkraut with an Italian flair of Gnocchis!

(This picture of the sausage/sauerkraut is it only halfway cooked)Tony took the older kids to church while I stayed home with Kenny and Gina (I cant have Kenny getting sick from close contact of tons of people). We then ate our huge dinner, went to the cemetery to visit Nick and then to another cemetery to visit our neighbor "uncle Jerry" to the kids, and then over to Tony's sisters house. It was a beautiful day out. Warm and sunny with all the spring flowers all in bloom!

And finally, This beautiful quilt was made for Kenny by the loving, caring people of Love Quilts. They have people from all over make a square then they are put together and made into a very beautiful quilt for children with life threatening or life long illnesses. May God bless them! One of my favorite squares is of an angel holding up a little boy on skates!

An Easter understanding

I for some reason, feel very at peace this Easter with Nick dying after watching this video! I feel very blessed and kind of honored, to have felt the pain, sadness and helplessness of which the Blessed Mother felt when her son, Jesus suffered and died. Knowing that there is something more (well at least, hoping and praying) beyond this life. Holding my son as he was dying and telling him that it was OK, that Mommy and Daddy loved him so much that he should go be with Uncle John. I at least got to tell him that I loved him and got a chance to hold him. Jesus died for me so I can experience that very moment with my son Nick. If there is anything to gain from the death of a child, no matter what age, is that the Blessed Mother felt the same way. There is life after death...for us living and for the loved ones that have passed on.

We plan on going to the cemetery to bring a basket and flowers to my son who was to precious to be here on earth with us and was chosen to be with God in everlasting life!

May your Easter be filled with many blessings and small miracles.

Never forget those that have gone on before us... they are miracles that made up us as...us as caring and loving human beings! God bless you all!

Happy Easter! Pictures of the Tomecko Family Easter to come!