The Rainbow after the storm

A rainbow is a gift, a sign all will be good...

It's that joy after a storm, that is sometimes misunderstood.

God gave us a rainbow for our family to cherish...

One when all hope and faith was ready to perish.

These last two years have been such a blessing,

They have healed the wounds, really has been the dressing.

Thinking back on everything and what this has meant...

The walking, the talking, and encouragement.

You were given to us for a reason we see,

And only God really knows...he holds the key.

God gave you to us because he felt all our pain...

The sadness, the emptiness....its hard to explain.

Losing a child and then, another so sick,

Hoping and praying...nothing did the trick.

When out of the blue, a test came back...yes

Mommy sat and cried, I didn't want this mess.

I lost a child, why didn't God keep him here...

Why give me another, it seemed so severe.

The thoughts of replacing him was scary and sad,

But God showed me something, I stopped being mad.

I thank God every day that he felt we cope,

A loss and a sick one...we were at the end of our rope.

I wasn't replacing him, I was gaining a child...

Who is strong and resilient yet sweet, caring and mild.

You have help your brother and family to heal...

Our hearts and hope you have quickly come to steal.

Kenny needed someone, his twin couldn't be,

The bond that you created is so special, you see.

Teaching him to walk, to play and to act like the rest...

Honey you simply are truly the best.

Yes we miss our Nick, and nothing will replace him,

But being here with us, has lightened the dim.

Some said we shouldn't have had any more,

But look at our life, its amazing...top score!

You have opened our eyes that God in in charge,

Our lives are worth living, his miracles...quite large.

So Happy Birthday to you, our gift from above,

You have given us pride, hope, joy and love.

written my me (michele)

Happy 2nd Birthday Gina. Mommy and Daddy love you more than words can say.

Recovery of another loss

I am so grateful for all the well wishes that so many of my readers have written to me. That really makes me feel so much better. Makes me feel like I am writing this blog to help others get through their own sadness, bad times, tragedy, and/or losses. Because you CAN get through them...My husband and I are living proof to that.

You know, every time there was something that was happening traumatic (my brother dying, Nick dying and also the previous miscarriages), I wanted it to turn out the way I wanted it to...so I'd be sitting there pleading and begging to God to make things OK...to let them live, be alright...but with with pregnancy, I figured all the pleading and begging wont change what God already had a plan for...so I changed MY way of thinking. I did a lot of praying, but this time, it was for God to give me strength for whatever was going to happen. I wanted Him to show me the way to go with this. And I feel that I had so many signs thrown at me throughout the whole 2.5 months of this pregnancy. I had the rainbows, the baby deer, and especially the little voice inside me telling me that this pregnancy was not going to last long. I got to see our baby's heart beating and it moving around. It was an amazing experience. I have 3 pictures (ultrasounds) of the little one and for that, I am thankful to God. I ended up having a D&C on Wednesday because I just chickened out of having a miscarriage naturally. I know my body knows what to do, but my mind and emotional state couldn't handle it. I am sore today but I am glad that its over with. I can move on and focus on my kids. I can start to heal from yet another loss.

God had given me this life and each day I am learning something a little more...about people and how they react to different situations. This is why my I have this blog. I want people to know that anything could happen at anytime in your life, but it wont keep you down unless you want it to. Sure, I've had my days...lol, actually many days that I just wanted to crawl into bed and just give up. When I was pregnant with Kenny and Nick, I begged and begged for God to spare my babies an early death. Then watching Nick die in front of our eyes..I never thought that I'd have a child that I would have to bury. We thought we were out of the woods with "bad things" happening to us...I mean, what ELSE could go wrong? right? As Kenny started to develop and grow, we had no idea of what was to come. He has a lot of medical and physical problems which he is always in and out of the hospital. The epilepsy, mod.-severe hearing loss, his chronic lung disease, his eyes that will eventually need to have surgery to correct, the muscle tone issues, the developmental delays, and now...to top it all off, Kenny's doctor just called us this week and told us that he will be getting a g-tube put in on July 12...oh yeah...add failure to thrive to the list. Our fears of the unknown is starting up once again. So with all the other meds and special needs for our miracle, we are adding the care of a g-tube. I know it is the right thing to do for him. He will be healthier, he will gain weight and develop better (we are hoping). I am just scared.

Here's a little story of just how bad things are getting....We went to a friends house to see fireworks the other night...and we never got a chance to just sit and talk to anyone. Kenny was going everywhere. I never realized how much watching over Kenny needs. He didn't want to watch the fireworks, wouldn't just sit and chill...he wanted to walk...walk wherever his little feet could take him. Now...grant it, I am beyond grateful that he is actually walking! That is a miracle in itself. But his autistic side is really starting to show. The gathering and throwing of silverware, slamming doors, head banging...well, you get the point. He had meltdown twice while we were at the party...once in the backyard...the only thing that helped was him sitting on my lap and swinging on the swing. The other time was when the fireworks were going on...Tony and I tag teamed watching him. We had to put a glow bracelet on him because he didn't want us to hold him, he just wanted to just go...not good when there are 6 other kids to keep an eye on and a busy street with crowds of people everywhere. Overall, I loved getting out and seeing our friends. We did have a great time, it was just draining.

We gladly welcomed every one of our children...even the miscarriages. We see that Kenny's disabilities and medical problems as a part of everyday for us now. We don't like it, but we are used to everything...the breathing treatment every night, the different meds every day, the issues that have arose and ones that we will be facing in the future. God gave him to us for a reason...and we intend to make the best of it and help Kenny (and the rest of our kids) grow up happy and as healthy as possible.

Sure, I cry a lot for our kids...for Kenny because of what he has and will continue to go through...and for our other kids for what they had to experience in their lives already. I cry because I am mad and hurt...scared because of what the future holds...but after a good cry and a great hug from my husband (and phone calls to my parents and sisters), I feel much better. It's a great release of emotions (and so is my therapeutic writing on my blog).

I am looking at the situation as the glass half full...I love being a stay at home mommy to my kids. I will find time to dig out my jewelry and headpiece making stuff, drawing and painting stuff out from my closet and attic and one day get back into the swing of things...eventually. But until then, my kids need me. The years are sneaking up quickly...I have an 11 year old and almost 13 year old all the way down to a 2 year old...not to mention, a child with special needs. I want to make the kids lives happy and fun. Its hard to not make it all about hospitals, meds, watching out for Kenny, and sadness of what has happened or is happening...so that is why I am trying to make it about what we have. The house, well...we make it work (come on EMHE) for the time being. We've never known anything else, so its just our way of life. Sure the house is small, but (again...glass half full) it's easy to keep clean. We are trying to make the most of this life that God has given us...no matter how stressful it is...no matter what the future holds, no matter how opposite it has turned out from what we expected. God has given us strength, family and true friends who understand and are there for us...and for that, I am beyond grateful. It IS (for the most part) a wonderful life...and if it isn't, God, family and friends will get us through.

Apologizing for this post being all over the place...its just the way I'm feeling today.

BTW...God Bless America! Happy Independence Day.

I'm trying to figure out where to begin...

You know, you plan your life...think that the way you plan it is the way that its going to happen when out of the blue, life throws you a wrench or two. It our job to stand back up, wipe the dirt off of our butts and take it from there. Take what happened and move forward... and honestly, I think I am doing a pretty good job at taking what life has thrown at me and made the most of it. I have learned to be a stronger, tougher yet more loving and understanding person. The losses from miscarriages and Nicks death have made me realize that we should never take for granted the miracle of a life. There was a time...2 miscarriages ago that I was a basket case. I mean, I was devastated at the fact that I lost a baby. Some may argue that an eight week fetus or even a twelve week fetus is not a child, but when you see the heart beating on that ultrasound...or should I say, the first pregnancy test, you start to plan and dream of what your life is going to be like with a new baby. You figure out the due date. Look online at all the milestone weeks to come. Think of what your baby will look like and how you will be feeling, and also names. Even after all the kids we have...it never changed. Two and a half months ago, Tony and I were taken back and caught off guard. Oh my Goodness. Us? Expecting another baby? We already got slack at the mere mention of being pregnant with Gina. What would people think? Careless? Selfish? Didn't we learn from the last few pregnancies? Don't you have enough kids? You don't have room, so how dare you two! Those were some of the milder comments that we were hit with last time, and dreading this time. Not to mention...wow, you're kinda old. LOL. But honestly, we sat in a state of shock...then mad that it happened...then...all of a sudden, it was reality. We were at peace with the fact that we were expecting another. God was blessing us with another baby...wow. We didn't tell barely anyone just because we (I) had a feeling that something just wasn't right. I've been pregnant enough times to know when something is wrong....and my intuition was right. When my doctor told me that the baby was on the left side of my heart shaped uterus, a red flag immediately went up. I mentioned it to my doc that I was concerned because the 2 other times that I had a pregnancy on that side, they both ended in miscarriages...an then there was Nick...he was on the left side too.

I now have 4 babies in heaven...my Nick and the 3 miscarriages that I've had. I understand and have come to a calming reality that I am alright with this. I am alright with the what ifs, the seeing the strong heartbeat one day then nothing the next (a little disheartened, but alright). I'm alright with the ending of this pregnancy. If this was 4 years ago...I'd be a crying mess...but today, I am alright. God has given me some of the greatest gifts of all...to feel...to understand...to accept that He is in total control of my life. Sure, I do things the way I want (the Italian in me)but overall, there is a plan for me...for all my losses, for all that Tony and I are going through. And...we are really alright with it. The hardest part for me is the physical pain that I must endure. I have always had D&C's, so this natural process is all new to me. But I have total faith in my doctor. He knows me and I know him. He feels this is the best for me. I will get through this...Tony and I will get through this.

Everyone just needs to know, that because Tony and I have a deep love for one another and a faith that is just as strong, we accept children into our lives lovingly, just like our vows said. It has nothing to do with having a child with special needs...or even losing a child. It's not about how many kids we try/or try not to have. Its about the love and dedication we have for each other and for our 7 living children. We wanted a big family. We know that it meant giving up on many things (new house, vacations, and many extras in life), but we choose this life. We provide for our kids, teach them right from wrong, pay all our bills, and don't expect any help. Yes, we are "one of those...BIG families" that gets the looks at the supermarket (and everywhere else we go) but we choose this life, and wouldn't want it any other way. We weren't going to tell anyone but we figured that we owe it to ourselves that we acknowledge that for 10+ weeks, we were going to have baby #9, and to let friends and family know what was/is going on.

Thank you.

Over the rainbow...somewhere...somehow

Yesterday, Kenny started his first day of preschool. He is going to the summer program for first step. The day started off...well, let me back track a little...all night, I kept having these thought of what happens when I put him on that bus and something bad happens to him? What if the bus is involved in an accident? What happens if the bus driver forgets him on the bus? I know...these thoughts are a little over the top, in terms of "what ifs", but really, what if? He is only 3. He is ACTUALLY not fully three until his due date...August 25th. He is non-verbal, so he cant talk to the bus driver. He has epilepsy...what happens if he has a seizure on the bus or at school? I feel so bad thinking these thoughts, but he has fought a loooong battle. He beat the odds (0-17% chance of survival for a 23 weeker) I have worried for 3 years if he was going to make it through the whole 129 days in the NICU, next cold/virus or seizure. He has surprised us all...but I still worry for him. So, back to my story, I wake up at 6 am, mind wandering, lay in bed for an hour trying with all my might to sleep through the whirlwind of thoughts...even if it was just for an hour...didn't happen. Jumped from bed, went downstairs and onto the computer. The typical news online...the horrible oil crisis, murderers, the new build that Extreme Makeover Home Edition has started (still hoping and fingers crossed for us this season.)...then onto Facebook. Hmmm...not much activity, everyone must be on vacation...ahhh...yes...white sandy beaches, the crashing of the waves, the smell that is a combination of fish, salt and suntan lotion....one day...one day Tony and I will take all of our kids there for the first time, just like my parents did with us. SCREEECH...back to reality. Sorry I got sidetracked. lol.

So I went upstairs to get little man up and ready for the bus. Got him dressed without a temper tantrum, hearing aids in...check. school bag with diapers, formula, Diastat (in case he has a seizure) and his bottle...Check, check, check and check....waiting for the bus...should be here at 8:21...it is now 8:40. I wait a little longer...now its 8:45! I called the transportation dept and asked them what time Kenny's bus should be here and they proceeded to tell me that the driver just didn't stop here because he didn't get picked up all last week. Ha. Well I proceeded to tell them that all last week, Kenny had a bad ear infection and strep...I called in every day to tell them not to come pick him up...why the H*ll would they just assume that he wasn't going today...He was ready and waiting...I never called to say otherwise! So...I ended up driving him, which was fine by me...I wanted to see the class and who his classmates were going to be. And that is exactly what I did. I walked in with him and took one look and thought to myself...uh...nope...this isn't going to happen. These kids are so much bigger and more advanced than Kenny. The teachers reassured me that he was going to be fine...and I left...with tears in my eyes.

11:30, I go to pick him up. I go meet him and his teachers at the door of the school. He was fine! The teacher told me that he had a really good day. He stopped crying as soon as I left (which I knew he'd do), and was actually playing with the play kitchen they have there. I am so relieved that his day went well. The teacher wanted to reassure me that because it is the summer program, they have 3, 4 & 5 year old kids in his class and that Kenny has a lot of one on one time with the OT, PT and Speech therapist. I felt better about that. I know that because we have such a large family that he is very well socialized with kids of all ages, so its not that aspect that I was concerned with. It's more along the lines of how do I know what to do with him. Yes, he is behind, but is it because he cant hear, express himself with speech, or see very well? Not to mention that his coordination is off and that his fine motor skills are limited. No one has come out and told us that he will be mentally disabled all of his life. But on the other hand, the doctors have said he is extremely delayed.

For all of you that have had a child like Kenny, what would/did you do? I don't want to baby him but in the same token, I don't want to put him in a situation where he doesn't know any better. I don't know what his brain is capable of. His mental capacity. I plan on going to his Comprehensive care appt. today and have a heart to heart talk with his doctors. I just need to know what we are faced with. I am so sick of hearing, "because he is such an extreme premature child, we are just not sure what to expect." I know it is what it is, but someone has to have some idea of what we are looking at. Is he just a boy with a normal mental capacity that is trapped in a body that cant express himself? If that is the case, what do we do? Sending him to school, will it build up his immunity (unlike this past school year) eventually, or harm him more?

So you see, this is where I am at. This is where my mind has been. So if any of you have any ideas or stories that you would like to share...please comment...I think I just need some reassurance that we ARE doing the right things with Kenny. It's such a different world than having a normal, healthy child...and again, I thank God for letting me have him and this new world. It is so exhausting and challenging, but I love a good challenge and it has opened my eyes, my husbands, and my kids eyes to what and who really matters in life. Somewhere over our rainbow big things are happening...even if they are the smallest.

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."