Monday, June 28, 2010

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 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, 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 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 then there was Nick...he was on the left side too.

I now have 4 babies in 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 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.

Tuesday, June 22, 2010

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 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 is now 8:40. I wait a little 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.

Sunday, June 13, 2010

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 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 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 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 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 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!

Saturday, June 12, 2010

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.

Thursday, June 10, 2010

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 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 favorites!

Sunday, June 6, 2010

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.