Preacakes

It is Saturday morning and I have just woken up. Daddy is still sleeping beside me as he has had a long week at work in the recruiting office. They usually are. It is about 10:15 in the morning. I have awoken to the sound of our eight year old little angel singing her heart out through the monitor. She is singing one of her very favorite song, “Rescue pack, comin’ to the rescue …” It is from one of her favorite shows Diego, the Animal Rescuer. I lay in bed awhile longer trying to just rest before my day begins. Once my day starts it is an all day affair with no rest for the weary.

I finally decide to get up and out of bed around 10:30 because Mari is now saying, “Let’s go potty.” Now typically if Mari says “Let’s go potty” it is only to get out of doing something she no longer wants to do and not that she really needs to go potty. So I am pretty skeptical. The only drawback is you just never know when she actually has to use the potty. So I decide I had better go downstairs to get her out of her room to put her on the potty.

As I get closer to the door, you can just hear her saying over and over again, “Let’s go potty, let’s go potty, let’s go potty, let’s go potty.” I know it will NEVER stop until I get her out of her room as she is one persistent and stubborn little thing due to her autism. It’s kind of like we are at Burger King all the time, it ALWAYS has to be Mari’s way.

I take her out of her bedroom, put her hand in mine and take her to the bathroom across from her room. I unzip her blanket sleeper, pull down her Goodnight, and she sits down on the potty. Now, a typical, average, everyday person once they have woken up in the morning would sit on the toilet and go to the bathroom RIGHT AWAY. Not Mari. We sit, and sit, and sit, and then sit some more. Twenty minutes have now gone by and still no pee-pee on the potty for our little Mari. Boy does she have some good bladder control. Now Mari is saying, “All done.” I know that we could sit there for the next hour or two and she probably will still not have gone. So, I stand her up. She pulls up her goodnight. I take her blanket sleeper all the way off now because it is time to get dressed for the day.

We go back into her room to find an outfit. I am so organized with all of her clothes. If there is a top there is an exact bottom that matches it. If daddy or someone else tries to dress her and put the wrong items together, I have to go back and put the appropriate outfit on her. I pull out one of my favorite outfits for her. It is from the Mary Kate and Ashley line. I love almost all of the outfits they have come out with.

The top has long sleeves. The sleeves and the bodice are different because they are crocheted with a thin burnt orange yarn. The bottom half of the top is a cream t-shirt type material. Because the bodice is crocheted, the t-shirt type material goes up underneath it kind of like a tank top so the bodice is not see-through this way. There are two embroidered flowers, one of the left and one on the right, on the crocheted bodice. Towards the bottom right (if you are looking at the top) is another embroidered flower attached to the t-shirt material. The pants are jeans. They have an acid wash, wrinkled look to them. The jeans have double stitching on each seam and one thread is daisy yellow while the second thread is burnt orange. Towards the top of the pants have a special patterns that sort of looks like a big upside down crown where they attached the pants and used a zigzag stitch with burnt orange for the thread and a straight stitch with daisy yellow for the thread. On the front right jeans pocket (if you are looking at the jeans) has several embroidered flowers with an embroidered butterfly in many different colors. On both of her back pockets, the top half on the left pocket and the bottom right side on the right pocket, are multi-colored embroidered flowers as well. When this outfit is worn it just looks so feminine while at the same time it looks so incredibly cute.

I hand her the pants and she sits on the floor to put them on. I then hand her the shirt. She struggles a little so I help her put it on. We are all dressed now and Mari says, “Preacakes! Preacakes! Preacakes!” I stop her and say, “Mama, I want some preacakes please” while I sign to her the words. Mari then repeats back to me, “Mama, I want preacakes please.” I figure it is close enough so we are off to the kitchen to make us some preacakes.

So the first think I do is to pull out the griddle so it can start heating up. Mari starts to flap her arms in excitement because she knows she is getting her preacakes. I then pull out a bowl to mix the ingredients in. I pull over the step ladder so she can help me at the countertop. I ask Mari to go and get the Bisquick. She goes to the pantry, pulls out the big heavy box of Bisquick and places it on the countertop. I then pull out a 1/3 measuring cup. I measure the first cup full of Bisquick and she dumps it in the bowl. We do this five more times until we have two cups of Bisquick in the bowl. Then I ask Mari, “Ok, what is next?” So she steps down off the ladder, she opens the refrigerator and pulls out two eggs. She brings them over to me, steps back up on the ladder. I break the shells and put the eggs in. Then I ask Mari, “Ok, what is next?” She then steps back down, goes back to the refrigerator and pulls out the gallon of milk. She brings it over to me and she is back up on her ladder. I pull out a Pyrex two cup measuring cup and pour about one and a quarter cups of milk into it. I hand it to Mari and she pours it in. She then goes to the utensil draw and pulls out a whisk. She gets back up on her ladder and starts to stir the batter. She does a pretty good job but it is not quite all stirred so I finish mixing it until it is completely stirred.
So now I pour about a third of a cup of batter onto the griddle. I place four more round circles of batter onto the griddle and we watch them as they start to cook. Mari is just so excited. She starts to flap her “wings” again. The preacakes take about 3 to 4 minutes to cook and then they are done.

Mari goes and puts herself into her highchair that she has had since the day she was born. I close the lid. I place the three preacakes on a plate, butter them, cut them up into easy to eat squares, and then add syrup. I bring the plate and a fork over to Mari. She immediately digs in. Mari tries so hard to use a fork but ultimately gives up and just uses her hands. By the time she is done eating you ask yourself, “Did she get any of it in her mouth?” as it is all over her face, hands, and the clothes we had just put her in for the day.

So I take her out of her high chair, get her all cleaned up and Mari is off to play for the rest of the day.

Thoughts...

I have a friend from my high school youth group that has a blog. I have her blog listed in my "blog list". She wrote something on December 3, 2008 that I felt was really profound and I made a comment on her blog. I hope she does not mind but I not only wanted to share what she wrote but I thought those that read my posts might want to read the comment I had made.

This is the link to her post:
http://hvoeltner.wordpress.com/2008/12/03/thoughts/
And this is what her post said:
Wow, as I sit here I am reminded that this year is almost over. What a year it has been. I sit here totally and completely blessed and am reminded how absolutely precious our lives are and that we need to treasure every moment. I am reminded of two friends who are going to be spending their first Christmas without their beloved children, those who have lost others close to them, have been diagnosed with life altering diseases, those who have lost their jobs, lost their faith. We have so many things that we complain about, or wish were different about our lives.

I sit here and realize I have all I could ever dream of! I have two beautiful and precious children, a husband who loves me, a relationship with my heavenly father, a roof over my head, friends, heat, food, life….and the list goes on. It is so easy to grumble about what we wish was different, or what we wish we had, etc. But this time of year I am reminded that those little things don’t matter, most of the time they are insignificant. I am so blessed, I am challenged to spend the next few weeks praying for those mentioned above, the childless, the homeless, the motherless, the fatherless and more. I challenge you to take your eyes off YOUR circumstances, and begin to pray for those around you, and don’t let those silly little insignificant things of life steal your joy, or make you forget the precious blessings in our lives.

This was my comment:

Heather,

Thank you for writing such a beautiful post. As you know I am one of the people you were talking about. My husband Keith and I lost our only child this past July. Her name was Mariana (pronounced Mar-e-an-na). She was 8 ½ years old.

I used to get so caught up in how upset I would get because she was difficult at times to take care of. She was diagnosed at the age of 3 with severe autism. In the last couple of years she was getting incredibly difficult to take care of that we were starting to seriously consider that within the next year or two she would probably have to be put in some type of home for safety reason.

Mari, as we like to call her, did not understand that safety was just as important as doing what we wanted. She did not understand that is was not ok to go through the family room window to go outside so she could go dancing in the street or to go through mommy and daddy’s bedroom window on the second floor so she could go dancing on the roof (fortunately the roof was basically flat) or go through the living room window to go to our next door neighbor’s backyard to play in their sandbox even though she had her own in our own backyard. All Mari knew is she wanted to do what she wanted to do but did not understand the safety consequences for what she did in that she could have been seriously hurt, or worse, she could have even been kidnapped or something. There was no talking to her because she lived in her own world; we called if Mari’s world. In her world there was nothing she could not do.

To have all the worry back and frustration would be such a gift; it is something I long for now. I miss it because that means she would be back. I would much rather have to worry about all these things that not to have her at all. I do not that if she had been able to live that life would be so different for us now.

All I know is now she is gone for the rest of our lives. There are so many people that miss her. I was on my way to the dentist today driving on I-80 (in Chicago area) when I saw this hearse with the funeral line behind it. When I looked back there were a total of 3 other vehicles (to include the limo) following behind the hearse. What amazes me, and I have seen it several times since my daughter’s funeral, is that for the funeral line from the funeral home for the 45 minute drive on the way to the cemetery my daughter had over 20 vehicles that followed. This was an 8 ½ year old little girl that had no idea just how many people truly loved her. I immediately started to fall apart with my friend on the phone. My daughter was such a special little girl and she will be so missed.

I guess ultimately what I am trying to say as I feel I am just rambling on is thank you for what you wrote today. Losing my daughter has put so much into perspective in that you never know what each day will bring and we all need to live it to the fullest.

Kristena

Remembering Mari, how sweet it really is!!

I sit here today actually feeling ok for the moment. It seems like most days are either ok or they are just sad and lonely.

I was sitting here in my house yesterday and feeling utterly lonely. I was looking at Mari’s photos up on my mantel for her dedication wall. I sat here on my couch taking a break from my new website I have been trying to get up and running and was just looking. I thought about how it feels like just yesterday she was here. It feels like sometimes that she should be FLYING around the corner with her Backyardigans stuffed animals, and don’t forget the book, and sitting in what she considered to be “her” chair (which really is mommy and daddy’s very comfortable reclining chair in the living room). She would also bring along her favorite blanket. And then she would just sit there entertaining herself for hours. Sometimes to just watch her could put a smile on your face. And if you try to move her, give her some time and she will be right back where she started. She had such a stubborn streak about her. It seemed it was like we were at Burger King all the time because it had to me “Mari’s Way” or you definitely heard about it.

I look at her pictures now and I can still see her. If I start to think about her too much I then start to cry and sometime (it seems like a lot of times) it turns into sobbing.

I talked to my grandpa the other day. He is a person you would never have considered to be a very emotional person, another words he definitely did not carry his emotions on his sleeve. Over 60 years ago he and my granny had a 10 day old baby they lost. I asked him how long it took him before he was able to start living life somewhat normally again. He said it had been at least a year and a half. He said that he and my granny would just sit there and cry sometimes. He also said that you will never fully get over the loss of a child as it will stay with you for the rest of your life.

I started a new semester in college. I am taking three classes; one of which is a nonfiction creative writing class. I think it will be good for me. My first assignment is to write out my life story in just two to three pages. Well, I sat down the other day, took about 40 minutes and came up with six. It’s Hard to condense a WHOLE life of chaos and confusion into less than three pages. What I wrote is very graphic and could not be posted on here as there are people I love that it may hurt. But what is good about writing it is it felt very therapeutic for me.

Mari’s memory I know will go on for years to come but it’s through all of those who knew her at all as to how she goes on living now and each day forward.

Suddenly and Out of the Blue, It Hits You

Tonight happens to be a hard night for me. It just literally came out the blue.

Today seemed to be going fine. I have been working on my new website I hope to have up and running within the next month. I was watching my third movie for the day. All of the movies I watched today have been all happy, feel good movies.

Keith and I were having a DiGiorno Garlic Bread Pepperoni pizza. I had just taken it out of the oven. And then I started thinking about when we lived in the house just previous to where we live now. I was thinking back the time when I would call up Keith’s mom and see if she wanted to go grocery shopping with me at Super Wal-Mart. It was down by her but it was the only Super Wal-Mart by us. She usually said yes. I would always go when Mari was in school as it was just easier to go when she was not around.

Mari always had to have her way. If we went by the book section, she had to get a book. If we went by the DVD section, she always had to get a DVD. If we went by the toy section, she always had to get a toy; whether it was a Dora toy, Diego toy, Backyardigans toy, or whatever suited her that day. She had to have her way or else you heard about it LOUD AND CLEAR. Sometimes her temper tantrums were overwhelming.

This is what I was thinking about as I was taking the pizza out of the oven tonight. And all of a sudden it was just completely overwhelming. I was overthrown with the tears that came out of me. My dog Cody heard me sobbingly crying in the kitchen and came up to my feet. I decided to sit down right then and there and just have him sit on my lap while I sat there crying. It was just so overwhelming the emotions of how suddenly I was missing her, and just how utterly empty I feel inside without her here. The sadness I feel is indescribable and yet I sit here trying to understand it myself how I feel. I just can’t and yet it is still there. It is hard to describe the emptiness a parent feels once they have lost a child. It does not matter who is around you or what people do or say, you still feel completely lonely without them.

I love you Mari and miss you so much. Just know I think about every day. You are and will forever be a very important part of my life and someday soon, only God knows when, we will see each other again. I love you baby girl. Mommy

Sitting Here Dazed and Confused

I sit here in a complete and utter daze right now. To think that it has been 6 months seems so overwhelming in the scope of things.

I have gotten pretty bad about checking my mail. My husband went and got the mail from the mailbox today and brought in a huge stack. In that stack was a big manila envelope. It was from Mari’s teacher that she had from February 15, 2005 until December, 2007 right before Christmas break. Because I fought so hard for my precious baby girl I was able to get her into Julie Ahlbach’s class. We were living in DeKalb, IL at the time. Julie taught the Mentally Handicapped classroom. The grades were from Kindergarten until 5th grade. Mari was technically not supposed to be able to be in this class until the following year as she was still in the early childhood department. Julie accepted her right into her classroom and embraced her like no one else could have. And I cannot forget the aides that were in her classroom that year. Everyone in this classroom was and will always continue to be very special to Keith and I.

Mari grew so much in her classroom. She became more than I ever could have imagined at the beginning when she started in this classroom. I am forever thankful for that.

Back to the manila envelope I mentioned before. Of all the days I received this envelope, I received on the 6th month mark of Mari being gone. I opened up the envelope and to my surprise were pictures of Mari (and some with others from her classroom, or aides, or pictures of her in a group photo of her class with all the aides, and even a couple of pictures of her in her Halloween costume (which I do not have a single one of). I was so thankful to have received these, more than even words can say, but at the same time made me incredibly sad. I just started to cry. And then later I just sobbed. And as I sit here typing this and trying not to cry.

Missing Mari is harder than any one person could ever imagine. I am so thankful to have had her in my life but just so utterly sad at the same time to have her gone now. I love you MarMar and hope to see you soon.

6 months have come and gone

It is hard to believe that as I sit here typing this that 6 months have gone by since Mariana passed away.

Sometimes I just sit here and wonder how this could be. I mean a year ago at this time we had just moved into our new home. Keith had finally gotten his orders for the Oak Lawn recruiting station to become a station commander there. We were getting ready to have both Keith's and Mari's 8th birthday party together here in the next couple of weeks. She was in her new school and she was acclimating quite well.

We were all just so happy but did not even realize just how truly happy we were back then. I mean, we used to complain about what seems so small now. About how cold it is. About how hard Mari was being. About Keith’s long hours (I mean don’t get me wrong, his hours are still ridiculously long, but that is another story ). Life in general, looking back, seems to have been so much simpler while at the very same time being harder in some ways.

Dealing with Mari was a day to day challenge sometimes. We can look back now and smile about all the things that used to drive us crazy when she did them. We can now look at them as things we so much miss and wish we could still have those issues back because ultimately it would mean that she is still here.

My life, the one that I have now, has become so much easier; so much simpler. But to have Mari back, I would take complicated and hard any day of the week. I would take all of those trials and tribulations that Mari gave us. I would just take it all back to have her here right now.

For our first year without Mari, Keith and I still have another 6 months to go. In the next 6 months Keith will have his first birthday without Mari since having her, we will have Valentine’s day without her, Our 15 year anniversary, St. Patrick’s Day, Easter (which every year, just like Christmas, I went shopping for that special Easter dress just for her), My first Mother’s day without her, Keith’s first Father’s day without her, and the 4th of July (which will probably be one of the hardest because last year’s 4th of July was spent in the hospital with her when we had no clue what was ahead of us at that point). Those are the holidays up ahead. Some may not seem that significant compared to others but none the less they are still all of our first holidays without Mari.

I dread any holiday coming because it is just one more reminder that Mari is no longer here with us. Her smile, her laughter, you can hear her and she just makes you smile. She brings excitement into your life while at the same time brings you to utter frustration. Ultimately, I can say, she was half of my everything. Keith is my other half. My everything will be put back together someday when we all meet up in heaven together again someday. We miss you MarMar and will see you again someday soon.

What do you say to someone who has lost a child?

It seems no one really know what to say to someone when that person has lost a child. You can tell that everyone around you is uncomfortable to talk about the child you have lost.It seems that they are always afraid of saying the wrong thing.

I was listening to the radio this morning and there happened to be a small segment on how to cope with the loss of a child. For the most part, it did not apply to me because it was dealing with the loss of a child when you know that your child is supposed to die because it has a terminal illness. Mari was not like this. She was not supposed to die. Her illness came suddenly and took her just as suddenly as it came. So I could not relate to the expected loss of a child because mine was TOTALLY unexpected.

The fact remains that when Mari passed away, we had almost everyone we knew and loved there beside us at both her funeral and her wake. It seems like everyone had come out of the woodwork to give us their love and support on the terrible loss we had suffered. Mari was gone and it made sense to no one. We had so much love and support that it was just so comforting to know they were there for us. To know we could count on those around us.

6 months have passed by (as of tomorrow, January 16) since Mari passed away. It still makes no sense. We still wonder why she was taken from us and I am sure that we will never know while we are here on this earth. As a matter of fact, I have not met one person yet that it actually makes sense to. Life has continued on for everyone. Sometimes I wonder if people have forgotten about us or they are just too afraid to talk to us because they MIGHT say the wrong thing. In reality, they just don’t know what to say. I don’t know why people just don’t talk to us. I never get any calls, even just for 5 minutes, or even just 2 minutes, just to see how we are doing. To make sure we are ok. No one stops by our house. I don’t even receive any emails. As far as the telephone, I will be honest, I really don’t like to talk on the phone anymore, and for the most part, I actually get incredibly impatient when people do talk on the phone for a long time. But just to have a call once in a while to find out how we are doing would be wonderful. My hope is that people will not be so afraid of saying the wrong thing but instead just are there for us. Whether it is a phone call to say hi, they stop by for a short visit, or just a simply email to say, “Hey, I was thinking about you,” would be wonderful. Please do not be so afraid to say the wrong thing that you end up saying nothing at all. We need to hear from those we love and care about. We just need to know that you care.

Thank you for reading and listening...

Today was a day of contemplation. I have been going to school on and office since 1995. I have slowly but surely trying to obtain a college degree. Sometimes I am seeking an associate degree and then others I just go straight for the gusto and try seeking a bachelor’s degree. At this point I have well over 90 credit hours but some are things I don’t need. I am literally two classes away from finally getting my associate degree in business and graduating in May 2009. So I am finally going to do it.

My semester this spring I am taking American Literature II (where I have to read The Road and read The Great Gatsby, plus three different volumes for the 20th century literature; kind of reminds me of high school in a way but I think this time around I will get a whole lot more out of it). I am also taking General Education Biology and then Creative Writing. I am actually taking Creative Writing because I want to. It is not a required class but I have been enjoying myself so much writing here recently I thought it would actually be fun to take this class. Never in a millions years before would I have ever thought this. I have always thought what I wrote was quite boring. I am pleasantly surprised to learn that people do not think my writing sucks but instead actually like what I have to say. Sometimes some (mostly it seems) and sometimes it puts a smile on your face but overall I feel like I am putting my feelings to paper to help people to understand how I am feeling. It is so therapeutic for me. I thank everyone for just listening to what I have been writing. Please don’t hesitate to leave your comments as I read every single one that is posted. They mean the world to me.

Thank you,
Kristena

Watching Movie, It's not supposed to be sad

It seems like in life it does not matter what we do or what we say we can always be reminded of what we don’t want to be reminded of at all. Keith and I went to see a movie last night. I wanted to see a comedy because I needed something to pick me up and help me to laugh. So we looked at the preview for “Marley and Me”. The previews they show for this movie are hilarious and I will tell you that most of the movie will keep you in stitches laughing. It is such a cute movie. I do not want to ruin the movie for anyone so I will not go into too much detail but the end just made me sob in the movie theater. I was not expecting what happened to happen. The crying I did is not like what you would do in a normal movie where you cry over something sad. I did not just cry; I sobbed. I was sad for the rest of the night. Keith and I talked on the way home and he said this, “I guess it does not matter what movie we watch we will always be reminded of Mari.” And he is just so right.

Before we left for Hawaii, at the beginning of December, we went to see “Four Christmases” with Reece Witherspoon and Vince Vaughn. This was another comedy, it is highly recommendable. The whole premise behind the movie is the characters of Reece and Vince as that both of their sets of parents were divorced and so they had to go and visit each one of their parents houses for Christmas, hence Four Christmases. Well, the first house they visit is Vince’s character’s dad’s house. We are sitting watching the movie and one of the brother’s 9 month old daughter’s is wearing a beautiful Christmas dress. What is unbelievable about this beautiful Christmas dress is the fact that it is the same exact dress I got for Mari last year and what she wore and Christmas day. I mean what are the odds. So Keith and I think we may not see many new movies for awhile and only watch those that we know will not be such a reminder of our beautiful baby girl.

Our Angel In Heaven

Our angel in heaven
How quick she must be
If you can imagine
She flew like a bee

As soon as she arrived
In heaven that first day
You can just imagine
How she wanted to play

Can you just see her
Dancing and singing
While everyone around her
Is laughing and swinging

The clouds are no match
As she wanted to paint
So she took out her markers
Just like a saint

The clouds are her canvas,
I know it’s hard to imagine
But somehow she did it
Like no one could fathom

She wrote out in marker
Her favorite words in the sky
BLUE, CLUE, TOYS, CARS
And nobody wondered why

To have known her is to see
How she loved her TV
To watch what she wants
Is all that can be

Dora, Diego, and
Backyardigans too
Don’t forget Nemo,
Wonder Pets, and Blue

These are her favorites
No one can forget
As I am sure she is flying
While she watches I’ll bet

Oh my there’s a lake
How could we forget
Because she found that water
And she gets soaking wet

She suddenly stops and realizes
During her playing and fun
That those down on earth who love her
Are sad and undone

As she is standing there still
All grown up in heaven
She sends down this message
To those who are grievin’

“Please don’t be sad
And miss me you see
Because I am ok
And happy as can be”

“Jesus took me in
It is plain to see
Because he loved all of us
And died on a tree”

“I am his child
And he took me in
Like no other would have
Because of my autism”

“I am waiting here for you
When it’s your time to come
So let that give you peace
So you don’t feel so glum”

“I know you miss me
Because I miss you too
But knowing I’m up here
Can give you peace and help you through”

“So one final thing
As I say good bye for now
Please live life to the fullest
With plenty of ‘wow’”

“I love you mommy, daddy,
And everyone who loves me
Because, you see,
I will be reunited soon with thee”