I am updating this post.

Tomorrow, March 8, is Gracie’s 11th birthday,there is a lot to celebrate, and reflect on.

Gastroschisis is currently “trending” on Facebook thanks to a new article that was published just a few days ago.

“In a report published Friday, the public health agency said that it found 30 percent more cases of the disease between 2006 and 2012 than it did from 1995 to 2005.”

In laymen’s terms, gastroschisis is a when a baby is born with his or her intestines (or other organs) outside their body.

My daughter, Gracie, was born with gastroschisis, and in April of 2015 she was diagnosed with autism.

Just like many stories, Gracie’s story does not start where you may think it would.

March 8, 2004 changed me.

Some parts of me were changed for the good. Some parts of me remained bitter.

I was 16 weeks along in my pregnancy.  A pregnancy that I did not see coming, but we were so happy to welcome. My husband and I had heard the heartbeat, my belly was growing thanks to a healthy baby and perhaps one too many Big Mac’s. Of course there was the usual morning sickness, I was always tired, and maybe a little bit more moody than usual.

This was not my first rodeo. I had two older sons. This pregnancy should have been a piece of cake. In my mind I was a pro by now, except I was not. Nothing could prepare me for what was right around the corner.

It started with a cramp. As the day progressed so did the pain, and then the bleeding. I remember standing up and blood just came gushing out of me. It was not good, and if I were to be honest with myself, I knew what was about to happen.

I was rushed to the hospital. There was so much blood loss there was talk of possibly needing a transfusion. I was weak, I could not sit up without assistance, I knew I was losing my baby, along with my sanity.

A D and C was ordered, and it was horrible. I mean even in the best of circumstances D and C’s are not the most pleasant thing to happen, but mine was-there are no words to describe it. I not only lost a baby that day, I lost a piece of me.

My husband and I were told the usual “Oh, these things just happen” “Don’t worry, you can try again.” “It was nothing you did.” Many of you reading this, you know the drill. You have heard the same words I have.

I did not want to try again.

Ever.

Four months later, I found out I was pregnant. “Are you freakin’ kidding me?” I did everything to make sure I did not get pregnant, well, everything except for that one important thing.

Being pregnant after a miscarriage is not easy. Because you know what happens? Every little ache, every little cramp, every time you throw up you just KNOW “This is it, I am having another miscarriage.” I hated it. I felt as if I was just passing the day just waiting for “IT” to happen.

When I had hit my 20th week, it was only then that I started to feel a tad bit better. I was well past my first trimester. The baby was kicking, and I thought “Okay, maybe this is it, maybe I really can do this.”

Except, I can’t.

I had my ultrasound. Again, I was a pro at this by now. I knew when the ultrasound tech would not answer my question “How does everything look?” that something was wrong. I am smart like that.

She played the ole “Let me get the Doctor in here to take a second look.” while assuring me “Everything will be okay.”

Did you notice what she said. She said everything WILL be okay, not everything IS okay.

The Doctor came in. Not my usual Doctor, he was off delivering a baby. Of course.

This new Doctor told my husband and I to go ahead and head over to my Doctors office which just happened to be next door, as my Doctor was on his way back to the office.

I cannot go through this again. It will break me. I am already broken. I cannot go through this again.

We made it to my Doctor’s office where we were quickly ushered into a secluded back room. My Doctor came in, wearing a very brave face, and then told us.

“Your baby has gastroschisis.”

and that is when everything changed, once again.

“What does that mean?”

“Will the baby survive?”

“How did this happen?”

“What do we do?”

I had about 500 questions, one after the other, not giving my Doctor a chance to respond.

“You will continue to see me, along with a specialist.”

“You will deliver at Mary Bridge as they have a NICU.”

“What the hell is a NICU?”

“I will monitor you every week, do not worry.”

“Of course I am going to worry!”

“You are my first patient with a gastro baby.”

“Kill me now!”

The next few months were complete hell. I was on bed rest. I had to count the kicks. I had to lay on my left side. I did not want to plan for anything, I did not want a baby shower, because I had no idea if this baby was going to make it. I did not want to talk about names, I just wanted to fast forward to April 8, my due date.

It was an almost perfect chilly Spring night in March. My older boys were doing their homework, my husband was in the kitchen cooking dinner, and I was laying on the sofa trying to count the baby’s kicks. Except…..there were no kicks. There had not been any kicks for a good few hours. I had done all the tricks. Orange juice, chocolate, changing sides, there were no freaking kicks, and once again, I knew, I knew this was it.

I had to go to the hospital. My best friend was gracious enough to take my older boys. I had no family here, no one to help me other than her. My husband and I made the 10 minute drive to the hospital. Of course he is driving like a maniac. I am looking out the window. Wondering, how I will be able to make this drive again without a baby. We past Jack N the Box, Taco Bell, Fred Meyer. All places I knew I would never be able to go to again because I was going to lose this baby, just like I did the last.

They had a room ready for me. I was immediately connected to all these machines. I was told to “try to get some rest.” Okay, really?!?!?! I cannot sleep, the last thing I want to do is sleep. I just need to know this baby is okay. A baby girl. A baby girl that I could not even name because I did not think she was going to make it. They want me to sleep? Well I want a million dollars and I say the odds are just about the same.

There was no movement. I had to be prepped for an emergency c-section. I was not even in the hospital I was suppose to deliver at. That hospital, the with the NICU was too far away. When I could not feel any movement, we just went to our local hospital-the hospital where my doctor worked out of.

I remember asking the nurse if I was going to die. I told her I had two older boys who need a mom. All I knew was I had, or the baby had, or someone had Sepsis, and that was not any good. So, I asked the nurse if I was going to die. She started to cry. She told me under no certain terms will I die. I asked her if my baby was going to die. She could not answer me.

My doctor comes in to check on me. He assures me that even though he has never delivered a baby with gastroschisis, he will have my specialist on the phone talking him through it. Okay really? Am I on an episode of Grey’s Anatomy?? Why am I even in this hospital? Why not transfer me to the hospital that is better equipped for these “gastro babies?”

There is not enough time.

“As soon as I get the baby out, she will be transferred by medic to Mary Bridge, your husband can follow them, you will be here recovering. I have the medic team outside, would you like to meet them?”

I cannot do this. I do not have the strength to do this. I just want to close my eyes and everything will be okay.

The medic team was a team of eight. These eight people, people whom I have never met. I have to trust these strangers to get my baby to Mary Bridge in time. To save her life.

“I just want you to know that our number one priority is your baby. We will do what it takes, your baby is in good hands.”

And then, I was taken to surgery.

I could not even see her when she came out. My Doctor had her in his arms, and the other Doctor had her intestines in her arms. She was placed in a body bag, to protect her intestines, and that was it. My husband was on his way. That was the plan, no matter what, she cannot leave our sight.

I woke up in recovery about two hours later. My husband was back. He had a picture of the baby. Of Gracie. Because, by the Grace of God, she survived. I survived. He showed me the picture and I did not know what I was looking at. All I saw was her intestines-but she was alive.

Gracie was born on March 8, 2005.

One year to the day of my miscarriage.

March 8, 2005 changed me.

And now, the journey had just begun.

Tomorrow, March 8, Gracie will be 11 years old. In six months she will begin middle school, which I am sure will bring on a whole new set of problems,concerns,and most importantly victories.

As a mother, I have guilt. I will always have guilt. I do not know why this happened, and I most likely never will, but the biggest thing I have learned on this journey is I cannot expect Gracie to be something she is not,she will learn differently than other kids, and it is up to me as her advocate, as her mother, to find her the best team out there that is willing to teach her, that is willing to fight for her just as much as I am.

Gracie, if one day you come across this post, just know that your dad and I loved you from day, and we will fight for you to the end.

No matter what.

It was our usual Sunday afternoon chat.

This has been our routine for many years. Distance separates us all geographically, but that has has never stopped us. I do not not remember when the weekly Sunday phone calls began. Most likely when we all grew up, moved around, and started our own families.

For many years now, Sunday afternoon, anywhere from 2:30-3:30 the phone calls would come. It is our chance to catch up, see where everyone is at, and just basically have a good talk.

No matter where I am or what I am doing, I make sure to always answer the phone. A few times I have been in the grocery store, chatting away on the coffee aisle. Sometimes, I am at my in laws house. I always excuse myself to take the call. No matter what.
This Sunday was no different.

I was home, arguing with my kids. Their grandchildren. I took the call.

We are eleven days out from Christmas Eve. Christmas Eve is going to be different this year.

Our usual routine of going to the in laws house, having some drinks, good food, a little bit of singing, a little bit of prayer, watching my kids and their cousins open presents, well, that is not happening this year.

There seems to be some ridiculous family feud going on. I would not even know where to begin to start to explain this. All I can safely say is my husband and I seem to be caught in the middle.

Therefore, this Christmas Eve is going to be different.

When the Sunday phone call came, I was explaining to Them how I want my children to have the Christmas magic. I want to plan things to hopefully make them not miss our usual routine. I need to have a new plan.

Weeks ago, I bought the movie Polar Express when it was on sale. I have never seen the movie, but He has. He gets choked up just talking about it, so I am going to assume it is a good movie. She likes it, but does not get choked up. Not because She does not like the movie, only because She has a few other favorites.

Christmas Vacation. She will watch it every year, and pretty much knows the entire movie by heart.

They were playfully arguing on the phone regarding if Polar Express was the best Christmas movie ever…..or not.

It was fun, it got me curious, because, remember, I still have not seen it.

Then He said something along the lines of “It is the magic of Christmas!”
I am sure I will better understand this once I see the movie.

Then, She said something that left both Him and I speechless.

“Well, I never had the magic. Never had the magic of Christmas growing up. I created the magic for my kids.”

And….that She did.

As a little girl, I saw Rudolph’s paw prints in the snow. I saw the remnants of Santa eating his carrot, and gobbling up one too many cookies.

I opened all the presents he left for me. I watched my brother and sister open theirs. We always had the same amount, because Santa had no favorites.

While at Coleman’s Nursery, I saw Them sneak away to have their private moment in front of The Savior on the cross, while us kids were distracted by hot apple cider.

He would always read to us on Christmas Eve while She would silently sit back in the corner taking it all in.

There was the one time when They had the their bright idea of stringing popcorn to the Christmas tree.

That only lasted a year, then we went back to our usual tradition of clear lights and red bows.

I heard Santa and his sleigh on our roof.

As a little girl, while spending Christmas in New York, Santa always remembered to leave the presents in Va, Beach.

When I grew up, I had my two month old son at Their house for Christmas. He was on the floor with him. A little two month old baby, trying his hardest to wiggle. He was amused, She was taking it all in, and I was thankful for not only a break, but for the Christmas magic.

She did not have the best childhood. Her childhood was very sad, and hurtful, and if it had happened to anyone else, it may have ruined them.

Not Her.

She Is the magic of Christmas.

I need anyone who is reading this, to go back and re read what I just wrote.

SHE is the magic of Christmas.

She made sure her children had the Christmas magic, and maybe, with a little bit of assistance from Santa too.

 

 

I love to blog. I love to write. I also seem to love to procrastinate. Every week my favorite blogger has some writing prompts for us bloggers to write about. It is usually a list of five prompts. We pick one and write a blog. Easier said then done. Doing these weekly writing prompts helps me to write, and, that is all I really want to do. Write. It would be really great if I could actually get paid to write, but all in due time. Right??

One of the prompts for this week is to write a blog inspired by the word “mistake.” For some reason, this particular prompt caught my eye. I just knew I had to write about it. Problem. I did not know what to write about, because, well, I am pretty much perfect.

I called my niece. I asked her “So, what should I write about, because you know, I cannot think of a mistake I made?” After she got her laughter under control, and after we spent a good twenty minutes going over my mistakes for this week alone, it hit me. I knew what I was going to write about.

My biggest mistake. The mistake that if I could go back in time and slap some sense into my younger self, the mistake that had control over me for way too long.

“Do not base your self-worth by a number on the scale.”

I know I am not the only one who has done this. Show of hands please!!

There have been too many times in my life when I gave the number on the scale the power to dictate my mood. Or, I would not allow my picture to be taken because I did not like the way my nose looked. Or, the fact I look four months pregnant, or, the way my shirt was bunching up in the middle. The list goes on.

Many mornings, I would wake up feeling great. Yet, as soon as I stepped on the spawn of Satan, I would be in a bad mood. Many mornings I would think “Oh yeah, this is the day my jeans will finally fit and I no longer have to wear spanx!” Only to realize I had to go up a size in jeans and needed my spanx more than ever. This, my friend, is a mistake.

Many times I would watch a movie,or see a commercial, and ask myself “How come I do not look like her?” “What is wrong with me?” “How can my husband even be attracted to me?” This my friend, is a mistake.

When I had school functions with my older sons, I would always compare myself to the other moms there. “She is so much prettier than I am.” “Wow, she is so put together.” “I wonder if my kids are embarrassed by me?” Again, this is a mistake.

I remember when I was about 10 or 11. I took ballet classes. The girls would always make fun of me because I was fat. They even asked if I was pregnant. I would love to go back in time and punch them in the face, but that would not be very productive, or would it?

Now, let me tell you what ends up happening. Life goes on. Life goes on whether you are secure in yourself or not. Life goes on whether you can fit into a size 6, 16 or 26 jeans. Life does not care what size you are. There will always be bills that need to be paid. There will be struggles whether you are married or single. There will be struggles if you have children or not.

The number on the scale. That is something that should never ever give your power.

Because one day, something really hard will going to hit you. A death in the family, a sickness, a divorce, an accident. Something will happen to shake things up a little. Something will happen that will kind of force you to take a step back and realize that there are so many more important things to worry about other than a number on a scale. Or how your nose looks in pictures, or how your shirt bunches in the wrong place.

So yes, my mistake was not only giving the scale power, but also giving others the power to make me feel less than. What I needed to do was to just embrace myself. The good and the weird.

I am a wife, a mother, a daughter, a sister, a niece, an aunt, a writer, a drinker. On any give day I have about 15 pounds that I probably should lose, but there is so much more to me than that.

I keep Christmas decorations up all year round, I prefer tacky decor over traditional/modern. I pretend I am organized when I really am not, but I know how to fake it.

And, I have learned from the mistakes I have made. This does not mean I will not make more, because, hello, have we just met? What I can promise though, is I will never again give the spawn of Satan the power over me, because, life really is too short.

I would like to encourage anyone who is interested in blogging to visit http://www.mamakatslosinit.com/2015/10/writing-prompts-for-10-22/ for the weekly writing prompts.

Three of my four children start school on September 2. This is usually the time of year where I feel I have to write-up an apology letter to their teachers because, well, if I were to be totally honest I am not the easiest parent to deal with. I have visions that these poor teachers, when seeing their new class list, and my child’s name sticks out, they will try to pawn them (meaning me) off to another teacher…But hey, at least I own it!! (and I would not blame them)

Dear Sofia’s Teacher,
You have the pleasure of teaching my youngest child. This is my baby, which will make me even more crazier and overprotective than usual.
Please be patient with me when I walk her into class the first day of school. No matter how many times I have done it (and I have done it a lot) the “good-byes” are so hard. Granted, they are hard for me, Sofia will not care. If I over stay my welcome, please feel free to literally push me out the door. Because odds are that is what you will have to do to kick me out of your classroom.
Also, if I hunt you down when the school day is over, it is only because I need that reassurance that Sofia had a good first day of school. First days are so important. This is my formal apology that should last the entire year….god willing.

Dear Gracie’s Teacher,
Oh boy do I feel for you! You have the pleasure of teaching my daughter in her last year of elementary school. I am counting on you as a teacher to make sure Gracie is ready for middle school. Of course I will do my part at home, but this is an important year for her. She has autism, she struggles. I am putting so much trust into someone I have never met to make sure Gracie is ready for middle school. Please forgive me when I ask you on a weekly basis “How is she doing, do you have any concerns, is there anything I need to do better?” I am not trying to be a nag, I am just trying to find that happy medium between giving Gracie her own independence while putting my own mind at ease. Please be patient with me. I have come a long way, just ask her first grade teacher.

Dear Teachers to Vinnie,
Oh boy are you going to have your hands full with Vinnie. He is a good kid, who tends to speak his mind. Often time there is a fine line with him. He thinks he is “debating” when in reality he needs to work on his tone. Vinnie is so driven though. So, when you call me because he has been sent to the Principal’s office (and trust me, you will call.) please be patient me. I will ask you all the facts. I will ask Vinnie all the facts, I will need to get all my facts in order before deciding on the appropriate punishment for him. You just need to find the best way to get through to him…..and myself.

~~~~~
I adore teachers. They have one of the hardest and most important jobs out there, at a measly pay. It is hard for me to turn over my kids for seven hours a day to someone I do not know. I have issues.

My children and I are looking forward to a new and exciting school year. Of course that will most likely last about two weeks before I start counting down to Christmas vacation.

I do not know how these teachers do it, especially when you have a crazy neurotic parent to deal with (me?) But trust me, I will do whatever I can to support both the teachers and my child.

Here is to the new 2015-2016 school year!

(Now where is the vodka because I am already having an anxiety attack.)

Gracie, my 10 year old daughter, wanted to make herself a hot pocket for a snack. I am trying very hard to help make her more independent, to give her the skills and confidence she needs to get through every day tasks.  Baby steps.

I cooked the hot pocket for her. When the microwave “beeped”, I knew this moment would be an important one.

Gracie heard the beep, came to the kitchen and just stood there looking at the microwave. She had a blank stare on her face. Like, she knew what she had to do, but something was not registering. I said a quick “God, please help me through this” prayer and made my way to the kitchen.

“Okay Gracie, first we are going to get a plate.”

“Where?”

“Well, I do not know, can you tell me where there is a plate?”

(She looks around for about three minutes.)

“There”

(She points to the plate I had laid out for her)

“Perfect, so that will be the plate you use.”

(She looks at the empty plate, looks at the microwave, then looks at me. This is a pattern for the next five minutes.)

“Now what?”

“We need to get  the hot pocket out of the microwave.”

(Very long pause as she is looking around, not quite focusing on anything.)

“How?”

(At this point I feel like a pretty crappy mother. How can my daughter not know how to open the microwave. I suck,I totally suck at this)

“See that button right there? Push it and see what happens.”

(Very slowly she goes to push the microwave button. Gently at first. It takes her a good five tries before she has the strength to open the microwave door.)

“That scared the crap out of me.”

(I do not care about language, I am thankful she was able to push the button.)

“Good job. Now, go ahead and grab the plate.”

(Again, long pause. Looking at her hot pocket in the microwave, then looking at the plate she needs to transport the hot pocket on to.)

“Okay”

(I think she is ready. She looks ready. Right? Please let her be ready.)

“Very carefully, take the hot pocket and put it on the plate.”

(Maybe not. She is second guessing herself. If only she knew what I can see. She can do this.)

“Why do I have to do this?”

(She is standing there. I can tell she does not know what she should do, but she knows she has to do something. Please, she knows this. She has to know this.)

“Because you are hungry and want to eat.”

(She is getting annoyed. I do not care. Let her get annoyed with me, I can take it. Just let her make the move.)

“Fine.”

(It took Gracie about five minutes to work herself up to grab the hot pocket. She did it.)

“Okay, can I eat now.”

(Huge sigh of relief)

“You sure can, you did good kid, you did good!”

(And there comes the eye roll.)

“Whatever.”

Autism is hard.

I am so new into this journey. Half the time I do not know if I am doing more harm than good to her.

I worry for her and her future.

Maybe because I am getting “older” or maybe because I am currently reading an amazing book “My Descent into Death (By Howard Storm) but I find myself thinking a lot about dying lately. Specifically me dying.

Look, I know sooner or later it will happen. I just need to know that whenever it does happen, Gracie will be okay. I pray to God every day not to take me before Gracie is ready.

I know that sounds morbid. I know to the non believers out there I sound like a basket case (perhaps even to the believers too?)

I just need Gracie to be okay. Whether I am here or not.

This is not an easy life. We were not promised an easy life. I know this.

I just need to have the daily strength and guidance to see Gracie through this life. To get her ready. To teach her the everyday skills one needs to get through life.

Some days I know I suck.

Some days I know I totally have this.

Most days, well, most days, I worry.

And at the end of the day, when I am in bed trying to fall asleep, I recap my day and try to learn from it. What can I do better tomorrow that I maybe did not do so well at today?

It’s hard.

Life is hard.

Autism is hard.