Six years in the making...err...uh..make that 15 years!

Today marks the day that after 15 years of having a child home...I am FREE! All the kids...yes, you years me right...all 7 kids are officially in school...all.day.long. No more 2 hour days..nope! The younger kids started last Thursday, my two high schoolers started Tuesday and Kenny started today! Am I sad? NOPE! I am nervous for Kenny because I'm the one that has been his primary caregiver throughout the day but now the teachers, the school has him for 6 hours. He will be in a class with other kids with multiple disabilities. I am sad at the fact that reality hit and I DO have a multiple special needs child. My new job is to make sure the school follows his IEP and help him with any issues that arise. So I'm holding my breath and letting go...which is very hard for me considering the fact that we almost lost him several times throughout his six years here on earth.

Gina? Well, I know she can hold her own. I am just a little sad that I missed these 5 years with her because of Kenny's needs. I am going to miss watching PBS kids and Nick Jr. with Gina, but I love the fact that she is making friends and has her older sisters with her at school.

My high schoolers? Well...my only hope for them is that they do awesome in school and are not overwhelmed with anything...life, school or grades. 

So...in this day of celebration...15 years in the making....what am I going to do? ABSOLUTELY NOTHING (and worry about Kenny)!

I am feeling very proud right now.

Another thoughtful Thursday (more produce stickers)!

This goes back to my never ending post of produce stickers. I must be the only household where I find them anywhere and everywhere! 

Perfect examples taken within the last few days:

Not to mention the one that's been stuck to my dining room floor for weeks because I'm trying to see if anyone but myself will scrape it up...so far...no one!!! 

Even with company coming over and visiting! I'm sure this darn sticker was like a neon sign blinking in the midnight darkness to anyone that has come to visit...for that...I'm sorry.

I'm so glad harvest time is right around the corner from us and I won't be finding many more of these hanging around. Heh...who am I kidding! There peaches today...but apples, oranges and even pomegranates...tomorrow (or...within the next few months).

...no cats were hurt in taking the sticker off. I swear ;)

Kenny has a surprise for us...

Kenny came over to me with his bag. I thought he had it filled with his usual stuff...everything small in his toy box....only for him to show me this surprise he had in there!!!

It's been five years....

I can't believe it's been five years since our last child...wow. Where has the time gone!! This year marks a milestone...all five kids in school all day long!! Woot woot! 

Today also is my last child's birthday..HAPPY BIRTHDAY to our sweet Gina! She is truly a one of a kind! She loves army stuff, guns, army guys, baseball, wrestling and dressing p in boy clothes....she also loves nail polish, kittens, fancy dresses, and cuddles! My little Tom boy who is a very sweet hearted, smart beyond her years little cutie pie! 

So, here is a poem I wrote for her....I love you my rainbow baby!!!

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 five 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 could 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 close, 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 loved, youre 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 5th Birthday Gina. Mommy and Daddy love you more than words can say.

Well...I did it!!!!

 I got my tattoo of Nicks footprint with a crooked halo (boys will be boys) with the bible verse 5:4 Blessed are those who mourn, for they shall be comforted...it just so happens at my son also died on 5/4...so it was meant. his footprint is on my left foot because that was the side he was on inside of me and I wanted him to always be walking with me :)

I have a few things I need touched up on it..like I want the halo to be brighter yellow/white and not so much orange..and I'm thinking I want to add a shadow to make it look almost like he's slightly lifted off of me. 

I love it, I love it...and Ron at Gen X tattoos is one amazing artist!!

Wondering about wandering

No one told me how hard a child with autism along with developmental issues, lung issues, brain issues and feeding issues, hearing issues and nonverbal would be. Yesterday I heard chopping I the kitchen...Kenny has a huge butchers knife chopping a cucumber! He is non stop running/wondering...the other day, he was ten houses down the street...i just went to the bathroom!!! now...I'm really scared and feel like a failure as a mommy. We are trying to get a fence put p but the idiots next door wont sign the consent...and we don't have $600. for a survey....(our washer broke, our basement is flooding and we need a new driveway). We've asked the city to help and their hands are tied. so all day everyday I'm chasing him into the front yard or in the backyards of neighbors thatdon't  keep their backyards cleaned up. I'm not super mommy. I just can't....
It's getting harder and harder and we have absolutely no help...sure, people say they want to help, but no one does. I have lost close contacts with good friends because of the stress I have and no time to escape for a few hours...and I'm truly sad over this.
It's a very isolated, high stress and no way out lifestyle. I love my children with heart and soul...but I'm so scared and exhausted.
We can't go anywhere without a meltdown, the beach, the city pool the playground, a restaurant, shopping...everything is off limits.. I don't need the stress and the dirty looks from strangers.
Sometimes I really wish....no...no I don't..but I just hate this never ending stressful everything. And no...please don't say you understand...because no one understands. I pray, and pray for guidance and compassion...and nothing. I do unto other as I would want for myself and I truly feel that God forgot about us.. I'm not expecting ANYTHING, nor do I feel entitled...at all. I am just throwing my feelings out there. 

So if there are other parents out there that have no help whatsoever...please let me know that it will be alright...because I am seriously at my lowest.

Summer is upon us...please be careful.

While driving, please keep a careful watch on motorcyclists. Yesterday while I was waiting in a doctor. Office...ok...a podiatrist..aka..foot doctor...#gettingoldwitharthritissucks, who's office is on the ground floor with windows and door right by the street, I saw a white work van cut off a motorcycle and kept going...while the cycle lost control, spun and slid on the street. The waiting room I was in was full, there was a lot of traffic...and I was the ONLY person that ran to help him. Thank god he only had a bad scrap on his whole forearm (not even the nurses came out with bandages or anything...i had to go in and ask for some!!) and had a couple of things broken on his new bike, but he was able to ride I home. It could have been a whole lot worse!!! 

I just can't get over that

1) the van never stopped.

2) no one helped this stunned/hurt guy

And 3) he wasn't wearing his helmet which was still strapped to the back of the bike as he left!

End of the school year...beginning a new...

So yeah...it's hitting me hard that as of tomorrow, I will have 2 kids in high school. 

My oldest daughter, Taylor is graduating middle school along with her peers whom we've known since kindergarten!

 Us parents became great friends sharing the joys and pains of our kids growing up...right before our eyes, yet...how did this happen so fast?! There were field trips, concerts, sleepovers, holidays, class parties and fish fries...didnt we just celebrate their communion...oh wait...that was 4 of my children's  communions ago! I tried "taking it all in", being a hands on mom like everyone said, and yet...it still haunts me that I somehow missed her getting from a little girl just starting kindergarten...to here...graduating from 8th grade!

I am so proud of my daughter for becoming such a great kid (minus he talking back and the messy room and the grades...well...lets not talk about that...but I hear that is very normal). She has really turned into a blessing to us. I can't wait to see what these years ahead will bring (oh God, please be gentle).

As she takes this next step in her journey called life, I will be there for her cheering her on! I want to thank her for giving me a little...well...A mini me. Thank her for being the sweet, friendly little blonde girl that loved everyone and hated nothing (ok...so I'm talking about her BEFORE the onset of hormonal crankiness).

I want to thank her for making me laugh, having a great mom/daughter relationship and being a test tube type of daughter...you know...she's the oldest girl so I'm using her as what works and what doesn't...my test tube daughter. LoL. If it wasn't for her, I wouldn't of met such wonderful friends whom we shared turning 40 together, girls nights out, them visiting me and cheering me up when I was in the hospital on bedrest with Kenny and Nick, and watching our babies become young adults! I will always cherish each and every one of them! 

So tomorrow we will watch as our second child graduates out of St. Francis. Such bittersweet feelings along with only the best of luck to all of them as they go off to high school. And for the teachers who have been there for them all these years...a huge THANK YOU, THANK YOU and THANK YOU!

In My Mind

In my mind, you are perfect,

With your missing little tooth that all eyes are drawn to.

Big brown eyes that say a million words that you may never say.

Your smile melts my heart, warms my soul and makes me giggle

Just knowing you know.

In my mind, you are healthy,

You run, laugh, play and sleep.

You can hear a bird chirp and the wind rustling the leaves

The meds are just routine,

The feeds...a peace of mind.

There are no diagnosis's and there are no labels...just you.

In my mind, you are brilliant,

Chasing you out the door because you want to explore...

Lining things up ever so perfect,

Grouping things that are somehow connected...

Knowing but unable to voice an opinion, a request...a want.

A world of knowledge hidden behind a seemingly locked door.

In my mind, you are invincible,

Surviving under dire odds

Being feisty enough to pull through illness after illness...

Your pain tolerance is though the roof with everything you've been through.

Strong enough to try to do things on your own...wanting no one but needing someone

And yet...when you're around...I am scared.

Scared of losing you...

Scared of losing me...

Scared of losing life.

In my mind, I am scared.

Toothless Tuesday!

It's been 6 years in the making and we finally reached a huge milestone! 

I didnt think I'd get so emotional over "just a lost tooth", but i did. you would think that after all these kids and all the lost teeth throughout the years that I'd be a seasoned pro, well...this seasoned pro broke down. There was a tear shed...a tear of joy that my little guy who was given an extremely small chance of survival has lost his first tooth. While he was in the nicu, I prayed to the heavens that he would live to experience all that life had to offer. Then again, while he was hospitalized all those times when he got so sick with the seizures, the sepsis, the pneumonia, infections and chronic lung disease flair ups that landed him in the picu on oxygen, I was hoping and praying for him to just have a normal life however long or short God chose...to experience all the firsts of childhood...his first steps, first words (be it words, sounds, signing or gestures), the first pee pee on the potty...(yeah, still waiting on that)...and his first lost tooth. Words can't describe the emotions of teetering on the brink...being told things a parent never wants to hear...yet getting the chance to play out these youthful firsts. We are so blessed!

  I also shed a tear for the fact that Nick would never experience a lost tooth. It brought me to another level of my grieving or my son. The "why's" (even though we shouldn't question things), the wondering of what Nick would have looked like, done...just everything. The raw empty feeling of missing him so much it hurts. This feeling comes and goes...I just wish that with every milestone, every first...it wouldn't be so painful yet so happy at the same time (if that makes any sense). 

I'm so excited and proud of my little man who never cried and it didn't even bleed very much. The tooth fairy will be making a special stop at our house tonight!!! Yay!!!!

May 1st...6 years ago

...6 years ago I was laying in my hospital bed crying because I was only 22 weeks and 6 days pregnant. I knew something was happening with my body even though there were no contractions showing up on the monitor. The nicu doctor came in and told me all the statistics of a micro preemie...the odds were really against them...in all aspects. My hormones were all wacky and I just had a feeling that I was going into labor. The doctor told me that if I went into labor that night, they would only give comfort care...but if I held off till the next day, they would try everything we'd want them to do to save them. that night, i remember feeling them move all around inside of me...kenny on my right and nick in my ribs on my left. i told them that i loved them very much and to PLEASE stay put for awhile longer. i prayed to God to help protect them. i fell asleep holding my belly like i was hugging my babies. at least while they were in my womb, i was protecting them. to be continued...

What does "stable" actually mean?

Kenny had his comprehensive care appointment today. They check his weight, height, lungs, BP, and nutrition. It all went fairly well. He hasn't lost or gained weight but the doctor noticed that he looked a little sunken in in the cheeks. I noticed it too, but didn't want to sound like a worry wart of a mom. We decided to start back up on his duo cal to see I'd that will add some weight to his body. Their main concern is that his body will start sitting down if he isn't getting enough calories...so were going to bring on as many calories as possible.
She asked me I'd I had any questions to which I said no, then she asked me how I was doing. Ok...well...you don't ask someone who has been going through he** these last 6 years, how I'm doing. I bawled my eyes out! It just sort of happened, ewps. I told her the honest truth...I wasn't good. I have horrible flashbacks of when nick was dying and every time Kenny was so sick, I thought he was going to die. I have anxiety over what to,or row will bring and...well...pretty much...I'm a mess. The PTSD and high anxiety that I've been facing has gotten me to the point where I keep asking what more? Waiting for the other shoe to drop. I said I was afraid of losing Kenny and she completely agreed that that was a very valid fear. She told me she love Kenny and is so sorry that were going through all this with him. I've been so strong for so long, that everything has finally caught up to me. The doctor reassured me that as of today, Kenny is stable. His lungs sound a little sluggish, but attributes it to a cold starting.
This whole life is something that I NEVER in a million years, thought I would be experiencing. It's very hard, actually...it's very painful. I did mention to his doctors about a make a wish for him and we all are looking into that. We don't know what the future holds for him...and I get physically sick just thinking about it. I want him (and the rest of my kids around until they are old and have to bury my 100 year old a$$). There is just so much on our shoulders and it weighing very heavy. Some say its our cross that we bare...but no..it's just so very much.
So...our Kenny is "stable" his is ok and for now, I will take that with a smile...but deep inside I just wish he was just healthy.


This picture is one of him sleeping with his favorite baby...buddy.

I've been busy with baking...

So it's the Lenten season and again, I am giving my services to help others. I've been baking cupcake...not just any cupcakes...gourmet cupcakes to sell at our church fish fry. I'm loving it. All day Thursday I bake and around midnight, when my legs are killing me, I pass out in bed only to wake up the next morning to get all the kids off to school and start making the frosting and decorate! Now, were not talking about a few dozen cupcakes...it's more like...50+ dozen!
I've added and tried so many new flavors...it's so fun to see what sells and what doesn't.