God is Amazing

With everything that life threw at us these last 6 years (I'm including the time I was pregnant with Kenny and Nick and even before that when I lost a baby) I have finally come to the peaceful place I am at (at this moment anyways) right now...I feel very blessed. The realization hit me like a ton of bricks after dropping Kenny and Gina off at preschool today.

 Oh, that's right...I forgot to post that Gina started preschool at the same school as Kenny. She is going as a peer model student. A peer model student is one who has normal development that is in the classroom with kids with delays or special needs. She is there to help the kids learn social skills for kindergarten. Anyhow, she loves it! It was one of the best decisions we've made. Yeah, its crazy for me to make sure all 7 kids up and ready for school every morning, but...hey...I'm one to live for craziness...I had 8 kids!
OK...so, anyhow...back to my revelation...
as I pulled up to the door to drop off Kenny and Gina for school (Gina has been going there for 3 days at this point), the drop off lady (I don't know what they are called) opened our van door and helped Kenny and Gina out of the van...all of a sudden, Kenny grabbed Gina's hand and they walked in to the school together. I asked the lady if she told them to do that and she said no.

OK, so as I am pulling away, I can see the two of them walking through the gym holding hands. It brought a tear...no...I cried like a big baby on the way home. I thanked God that he gave me such miracles...one..for all the kids I have, two...for Kenny because he honestly shouldn't even be here. For all the odds were against him...but he made it. And three...for Gina. God gave us Gina to help Kenny. To be the close sibling that he missed with Nick being in Heaven. Its hard to explain. I feel blessed in so many, many ways. Yes, I went through so much pain and suffering...and I still hurt...a lot, but I feel extremely blessed knowing that Kenny will grow and thrive, that Gina has a special place in her heart for her best friend and buddy, Kenny and I know Nick is looking down and watching over us.

My niece is married...oh what a party it was!

Nothing better than a long weekend wedding with a huge family! Yep, my niece got married to the love of her life on August 12th. I cant believe that not to long ago, we were taking her to go see The Little Mermaid at the theater and making her communion headpiece...and now, I had the honor or making her bridal headpiece. She is all grown up, beautiful and married! After a year of planning, everything fell into place and was simply beautiful! My twin sister and her family came in. My parents, who came in from Arizona...and whom I haven't seen in 4 very long years, looked the best they've looked in years (who would think they are both in their 70's...try late 50's!!!) Gosh I really missed my parents, sister & her family and my uncle and cousins!

My sister & her husband (parents of the bride) looks AMAZING! Her dress was stunning and brought me back to when I was little and she was going to prom...or was it homecoming...well, whichever it was...the color she picked out for her dress was perfect for her! They were radiating happiness!

Kenny and Gina were the Flower Girl and Ring Bearer. How did they do? ummm..well...pretty good for having stage fright! They did fine at the rehearsal, but when they saw all the people sitting on both sides of the isle...they both wanted to hold my hand and wouldn't walk down the isle without me.But they did walk down! tee hee

My niece looked like a beautiful princess walking down the isle. Yeah...I have to admit that I had flashbacks of when she was little, and it brought a few tears to my eyes. OK...OK...I cried like a big baby when I saw her in the back room of the church...with her veil and gown on...I mean....I just make her communion veil a few years back...and now she is all grown up and getting married! Where does the time go? I'll tell you one thing...our family knows how to party through the weekend! My uncle and cousins whom I haven't seen in...oh gosh...15+ years came and it was like we never missed a beat! There was tons of dancing by all...my parents (who are in their 70's) were dancing up a storm much of the night!

The cake was beautiful...Tony and I walked the kids onto the dance floor when they announced the bridal party...Look at my handsome guy...The father/daughter dance again...brought tears to our eyes. My husband even got choked up during this...It was because he

It was so nice to just get away from the every day life we live. One thing that I didn't care for was all the packing of all the medical equipment/medicines, etc...that we had to bring. I didn't realize how much stuff we actually use for Kenny. And also the consumption of time that Kenny takes up. I barely had a chance to talk to family because I was so busy running around after him.

The only thing I wish I would have done was taken a family picture of all my kids and husband. We all, believe it or not, cleaned up pretty well that night! tee hee.

What a great weekend! I am so blessed to have an amazing and large family!

An Everlasting love...

This week, my head was spinning from everything that had gone on within these last three and a half years...I vowed that I would not look back at it all, but sometimes it just hits me...today is one of them. I am missing my baby . In a perfect world, I should be giving my twins hugs and kisses, dressing them up alike for certain things, and being a mommy to two 3.5 year old little boys who are healthy, walking and talking up a storm and getting into everything. But this isn't a perfect world. My Nick is in Heaven enjoying all the glory being with the Lord, my brother John, Grandparents and my three babies that were miscarried. THEY have the perfect world...we are still here for a reason. Still learning and doing what our purpose is. Instead, I have a heavy heart that will always have a piece missing. I have a little boy who is the love of my life but he cant tell me that he loves me, can only tell me by a huge smile, a hug, or the intense loving look in his beautiful brown eyes when he looks at me. I have a child who is in the hospital at least once a month for one thing or another. A child who has and will continue to have to struggle with so much...breathing, hearing, talking, walking, learning, being able to communicate...how frustrating that must be to not be able to express what you want, feel, say or do. When a doctor tells a pregnant mom to be, "lets just make it one more week" or, "every week inside you makes a big difference", they know what they are saying. A 24 weeker is so much more viable than a 23 weeker...and so on and so forth...If I could have just kept them in for another week or two...If only. To think, I was hoping and praying that we'd come out of this mess unscathed. We really did. We thought, "well, he's home from the NICU, he is healthy and there is nothing wrong." Then the floppy muscle tone mixed with the tight muscles started...the developmental delays, the RSV, pneumonia, the hearing loss diagnosis, Autism, the eating problems, seizures and now his eyes...what more? Uhhh...no...I don't want to know the answer to that. LOL. I guess that is the question on everyone's minds...including the doctors. See, Kenny is more like an experiment in the making...sort of. Even doctors are not quite sure of all the things that can and will happen to a 23 weeker. We all are pretty much waiting for something else...praying for nothing to happen but ready when it does.

After all this...all this nightmare that Tony and I (and the kids) have been through, God has given us something very special...He has given us strength, faith, and love. Strength to face ANY problem. You know, after burying Nick and having to take a second plot right next to him as a "just in case" for Kenny, because it was THAT serious of a situation when they were born. Every day we go there to visit Nick we are reminded how much of a miracle Kenny is...and how much of a blessing that the 2 days of having Nick with us, was. It reminds us how close we came to losing Kenny...many times. God has big plans for him, I just know it.

Our trials and tribulations have brought Tony and I closer than ever (to some peoples disappointment..LOL) We have learned to talk, cry, express ourselves to each other. We don't take anything for granted anymore. God has blessed us with 8 beautiful kids and the opportunity of being pregnant three additional times, but were cut short by miscarriages. Each one, each loss...each trial and triumph, has showed us just how fragile life is. How God is in charge and we are here to just do the best we can with what is given to us. It is up to us to make the most of it. And that is what we are doing. We sometimes just hold one another and just thank God that we have each other. We really are soul mates with an everlasting love.

We, as a family, are stronger and better from all this. We have learned to not take cr@p from people that wants to bring us down. We have learned to not point fingers at people when we don't know the full details of the situation. We have come to respect ALL walks of life and how people act. We have become more devoted and giving from all of this. My kids are loving, caring kids who will go out of their way to help any kid/person that no one talks to or picks on, or has a physical or developmental handicap. It is so beautiful to see my kids interacting with kids that many kids would be scared to even try to talk to. We have learned that FAMILY and friends are extremely important. We have learned that life is too short to bother ourselves with negativity, because we have to stay positive with all that has gone on. Sure, I have my days of just wanting to lay down in bed and just wish this nightmare away and wonder why us, why Kenny, why put our kids through all of this...losing a brother and having a brother that has so much going against him...but then I realize that there are so many people out there that are going through the same things (and worse) than what we are dealing with. My kids will turn out just fine. We will just keep showing them the love and support that we have been giving them since the day they were each born. It is what it is and God wants us to make the most of what is given to us. WE were chosen to experience all that we have gone through and will go through.

So I will go on and continue to take it day by day...to try not to look back at what had happened...but still try to not forget Nick. I want him to live on in my thoughts and mind, like any mom who has lost a child...no matter what age that child was. I want to not have to worry about leaving Kenny with a babysitter. I want to not have to worry about if kids will make fun of him when he gets older. I want to not have to worry if this next cold he gets that he will pass away. I want to just enjoy what God has blessed me with. I will do my best to do that...it will be hard, but not impossible.

Fortunate Friday...g-tube and all

Yesterday was one of those days...those kind of days that you think everything is going a little too perfect. Yeah...I let my guard down. I should have realized that I can never get too relaxed, too "OK" with everything. I actually was writing a "Thankful Thursday" post last evening (in between doing this and that for the kids). I was writing about how I am thankful for how good the kids were being yesterday. I mean...they were actually getting along...not one fight! It was very, very nice. I went on to write how I was thankful for how good Kenny did on his third day of school. After getting the 5 other kids to school...without any problems...and we even got there early, Gina and I drove Kenny to school. We parked and his teacher opened the van door. I got him out of his car seat, put his backpack on...then I waited for him to start with the crying thing that he usually does...NOPE! He walked over to the open van door and put his arms up for his teacher to hold him...and that was it! Not a tear shed (from him anyways)! The feeling I was experiencing was such a great, joy. I mean, my little boy is able to break away from me now without crying. He gets to do fun stuff. He is learning and getting therapies. I am so grateful for this.


Fast forward to picking the kids up from school...They all got home and did their homework. Sydnie and Kayleigh, Taylor and Morgan...and even Tony. Kenny was actually drinking from a sippy cup...he grabbed one of the girls cup and just was walking around drinking it...AND...it was filled with juice which is another big step.
So, as you see...it was a very nice day. A day to be very thankful for...until around 8:00 pm. that is. Dun dun dun...

Why does everything have to happen when my husband has to go to, or is at a job? He was at the school putting up names on the banner for the PTU when my son, Tony calls him to get home...why you ask? HA...Kenny's G-tube came out! Talk about a mom trying to say calm but slowly losing it...yep...that would be me! Backtracking just a few...

Kenny was very sitting in his highchair and I figured...ok...well, its almost 8:00, so I am just going to start his night time continuous feed while he is awake. Got him all hooked up and it was going just great when he ended up falling asleep in his highchair. I unhooked the long tube that is connected to the bag but left the smaller tube that locks and disconnects one piece to the other...I figured I'm just going to carry him up and re-hook him up to the pump. Tony (little) was carrying the pole with the pump and bag attached to it, upstairs., when I pulled out the tray of the highchair and then proceeded to lift Kenny out...and THAT'S when I felt a lot of fluid pouring out onto my hand and all over him! He started screaming, I looked down and his tube was laying there...balloon inflated and all! I thought...ok, ok...I can do this. They told me when he first got the tube in that if it came out, to put the tube back in (balloon deflated) and get him to the ER within 2 hours so the hole doesn't close up. I didn't know which way to turn. Kenny was crying, I was standing there holding this tube that was once inside his stomach and I couldn't for the life of me figure out how to deflate that stupid saline filled balloon to put the tube back in! Talk about panic setting in! UGH! Then...I took one look at his g-tube site on his stomach and it was bleeding! UGH!!!! I was just going to drive him but I wasn't sure it it was safe...I mean, he had a hole in his stomach...and not to mention I was just too upset. Tony came home at this time (thanks to the kids calling him to tell him) and we decided to just call 911 because they probably would know what to do. Talk about feeling like a newbie to all of this feeding tube issues...it sucks! I mean...its a great thing...I have to say that. I can see the difference in Kenny since he's had it...but between the infections and this popping out... I am becoming a very strong stomached person. LOL. Our days are definitely not boring that's for sure!

So we (Kenny and I) went to the ER again...with our two favorite paramedics, who happen to be working every single time Kenny needed the ambulance. We were there for about 3 hours...they put a new one in...yes, Kenny screamed, but its in and all is good.

This morning he woke up with the other kids and got on the school bus for the first time this school year...again...without tears...from him anyhow.


So my Thankful Thursday post is now a Fortunate Friday post.

I am so fortunate to have a great support system of family and friends...those friends that have BTDT (been there, done that) with issues that we are dealing with with Kenny have been a God send to me. I sometimes feel like Tony and I are very alone with the struggles of having a micro preemie who now has special needs...not just developmental, but medically. It can take a tole on a person...with all that it entails. Tony and I have learned to go with the punches and not let our guard down (except for last night), and to hold every moment very near and dear to us because, honestly...we just don't know what tomorrow will bring. We have been knocked down time and time again with one thing or another...we thought that the NICU stay was the worst that could/would happen...boy were we wrong. Not saying that having the g-tube pop out is a horrible thing...It is actually one of the easier things that we have faced. It just so much that this little guy...our family...has gone through in a short 3 years...sometimes its just overwhelming to think of everything we have been through (as a family) and yet, we are still here and still going strong (even though we are very exhausted from it all and could use a break...this testing us is getting old...tee hee).
I am so fortunate to have everything that I have no matter how hard it has been.
Now I must end this post because I have cleaning to do and setting up for a Camp Rock 2 viewing party that I promised the kids we'd have. They have invited some friends from their classes over so...this should be a fun time. You know me...I love throwing parties!