A tribute from a very special teacher

This tribute was written by a very special teacher. She was not Mari's first teacher but she was the first teach to truly help my daughter like no other teacher had. Her name is Julie Ahlbach. Before Mari came to her classroom I don't believe she had a lot of experience with children who had autism, let alone as severe as my daughter’s autism. I was always the advocate for Mari and I fought to get my daughter into and all day program before most children were aloud. Mari's teacher before Julie told me one time that she really did not know how to teach Mari. I appreciated her honesty but that also concerned me because that told me Mari was not in the right environment to get the appropriate education she needed or deserved. We ended up having a meeting with the special education director, the current classroom staff that was teaching her and a new set of people from a classroom she could possibly go to. The current program she was in did not have all day for the Early Childhood department. So they were thinking about putting her in the Multi-handicapped program the district had. She would have ended up going into this classroom for Kindergarten anyway but the Special Ed director thought we could give it a try now. This program was a very special program and she would remain in this program until we moved this past December [2007] (we actually moved on Mari’s birthday). The teacher of the program was Julie Ahlbach. Mari was allowed to attend all day everyday she was in this program. Julie implemented things into her program that I introduced her to. Julie is and will continue to be a wonderful teacher that I believe truly helps all of her students no matter how disabled they are.

Because Mari had been such a vibrant part of this school for 3 years they did a memorial/tree planting service in her honor. This is what her teacher wrote. The love she has for all of her children is special. I want to share this with all of you since most of you either could not or were not able to be at the memorial. I hope it touches your heart like it has mine.

I had the privilege of being Mari’s teacher for three years. She touched the lives of all of us in the program.

This summer one of my assistants asked how the children were chosen for my program. I am looked her straight in the eye and told her we got the cutest and most special of the children in the district. And Mari fit both of those criteria. She was very cute and very special. I remember the day Andrea Weinger, one of my assistants, went to observe Mari in the Early Childhood Program shortly before she was to come to our program. Andrea came back to school and said Mari was really, really cute and really, really, really busy!

We knew we needed the perfect assistant for Mari, so we enlisted our friend Laverna Grady to help us. Back then it took Laverna’s two hands and my two hands to watch Mari’s two hands! We had a functional program and worked with Mari on making peanut butter and jelly sandwiches for her lunch. If Laverna and I were not fast enough that peanut butter and jelly sandwich would find a way to get Mari’s face awfully messy. But, three years later, the same little girl who used to smear peanut butter on her face, could eat her peanut butter and jelly sandwich that Mom or Dad cut into fourths very appropriately. We were so proud of her!

She learned to read. She could write her numbers and letters and loved counting the touchpoints on the numbers. She loved our songs and poems and knew our routine quite well. I would often say if I was absent that Mari could run the class.

Mari loved music and responded so well. We had a little away song that we would sing to get her to put away whatever it was she needed to put away. We used it during transitions, at the store when she was playing with the giant Dora doll and it was time to go, when it was time to leave the playground, or simply clean up her pencil box. It worked like a charm whenever we needed her to be done with something.

Yes, we could modify her behavior, but, she could modify ours too. She would look at us with those sparkly blue eyes and utter those three powerful words, “Let’s go potty!” She knew she could get out doing any activity she did not want to do with that phrase. Don’t get me wrong – sometimes she did need to go potty. But, sometimes she simply needed a break from table work. We would take her to the bathroom and she would sing, and count, and recite our poems. We loved hearing her talk – even when we knew she had conned us.

Mari loved her Dora fruit snacks. Sometimes she wanted them so badly that she could say fruit snacks in one syllable. We used to buy extra fruit snacks on our Wal-Mart trips so we would never run out.

She enjoyed our community trips, especially swimming. She loved swimming so much and could not understand if some of the children were not happy in the water. The chilly water at the YMCA did not seem to bother her at all.

Mari thrived with routine and structure. Most of the time we could provide that in the classroom, but we could not control the bus. If her bus was not out on time it was hard for her. When the bus was late, Frankie, the last assistant she had before she moved, would sit with her outside and sing, “Where, oh where is Mari’s yellow bus?”

When I told my family that Mari had pass away, my eleven year old son Austin said, “Now Austin Lee has a friend to play with in Heaven.” Austin Lee was another of our very cute and very special students. He passed away on Mother’s Day [May 11, 2008]. Austin had significant physical limitations. His shoes always stayed too clean because he could not run around and get them muddy. We like to think of Autism jumping in puddles in Heaven and getting his shoes dirty. And anyone who knows Mari knows that she was Queen of the Puddles. That girl could find and jump in a puddle before her assistant had a clue she was gone. I am sure Autism and Mari are having a great time getting their shoes dirty in those puddles. And Austin was not able to eat by mouth so we like to think of him as being able to eat whatever he wants in Heaven. My guess is that Mari has introduced him to the Dora fruit snacks!!

I have pictures of both of these children on a bookcase in our classroom. I see their beautiful faces as I teach. I pray they are now watching over me as I watched over them. They both will remain in our hearts forever!

Letter from Heaven

This poem was first introduced to me by a friend. He created the dedication video of Mari's pictures that were put to music and then at the end he had a neat surprise for us. He had his daughter say this poem at the end of the show with Mari's' picture there. His daughter was going to read the poem at her funeral but it was just too hard for her to do because the reality was a little girl about her age had died and just too much for her. So her daddy read the poem. This poem meant so much to me as you will read. I hope this poem means as much to all of you as it has to us and our family.

To my dearest family, some things I'd like to say...
but first of all, to let you know, that I arrived okay.
I'm writing this from heaven. Here I dwell with God above.
Here, there's no more tears of sadness; here is just eternal love.

Please do not be unhappy just because I'm out of sight.
Remember that I'm with you every morning, noon and night.
That day I had to leave you when my life on earth was through,
God picked me up and hugged me and He said, "I welcome you."

It's good to have you back again; you were missed while you were gone.
As for your dearest family, they'll be here later on.
I need you here badly; you're part of my plan.
There's so much that we have to do, to help our mortal man."

God gave me a list of things, that he wished for me to do.
And foremost on the list, was to watch and care for you.
And when you lie in bed at night, the day's chores put to flight.
God and I are closest to you....in the middle of the night.

When you think of my life on earth, and all those loving years
because you are only human, they are bound to bring you tears.
But do not be afraid to cry; it does relieve the pain.
Remember there would be no flowers, unless there was some rain.

I wish that I could tell you all that God has planned.
But if I were to tell you, you wouldn't understand.
But one thing is for certain, though my life on earth is o'er.
I'm closer to you now, than I ever was before.

There are many rocky roads ahead of you and many hills to climb;
but together we can do it by taking one day at a time.
It was always my philosophy and I'd like it for you too...
that as you give unto the world, the world will give to you.

If you can help somebody who's in sorrow and pain,
then you can say to God at night......"My day was not in vain."
And now I am contented....that my life has been worthwhile,
knowing as I passed along the way, I made somebody smile.

So if you meet somebody who is sad and feeling low,
just lend a hand to pick him up, as on your way you go.
When you're walking down the street, and you've got me on your mind;
I'm walking in your footsteps only half a step behind.

And when it's time for you to go.... from that body to be free,
remember you're not going.....you're coming here to me.

I went online and googled the lady who wrote this poem. On her site all she asks is to have a link back to her poem. Author: Ruth Ann Mahaffey, ©Copyright 1998. Her website is http://ruthann1.com/LetterFromHeaven.htm

What if I could have what I wanted

What would tomorrow bring if life could be the way we want it.

First, Mari would be here. She would never have gotten sick to begin with. She would have stayed perfectly healthy.

She would be laughing, and playing, and simply being Mari. She would watch one of her favorite shows or one of her favorite movies and then start to flap her arms in excitement because she is just so darn excited she doesn’t know what to do with herself.

She would still be here to let us know when she is hungry by saying “Eat Please” or when she was thirsty for strawberry milk and say “Milk Please” or if she was just plain flat thirsty by saying “Juice Please”. If she wanted to have a snack she was say “Cookie Please” or “Ice Cream Please” or “Cracker Please”. She just had so many different ways to let us know that she wanted something to eat to even just grabbing your hand and DRAGGING you to the pantry or the refrigerator to take you to what she wanted NOW!! I sit here thinking of her doing that and it puts a smile on my face.

If life was the way we want it Mari would be here to tuck her in bed every night and her to say “Bear, Bear” and will not stop until you get her favorite white bear that lights up to sleep with at night. Or she knows that it is bedtime and we are trying to put her in her bedroom and she goes running off to the family room with us chasing after her and yelling at her to get back here because what she was playing with in the family room and wants to continue to play with it in bed.

If things were the way we want it then she would be in school right now. I would forget most mornings to put her harness on her for her school bus to go to school. She would be gone during the day but would be back home by 3pm every day. She would be there with smiles on. She would be so excited to be home. The bus driver would tell me how they got stuck in traffic and Mari would throw a fit because the bus was not moving. She would do this if Keith or I would get stuck in a traffic jam and she felt she was done sitting in the car. She wanted the vehicle to be moving at all times. Or if we forgot something at home and had to temporarily turn back around to go back and get it. Boy you would think that Mari’s world just came to a crashing halt because she thought we were not going bye bye after all. She just loved her outings away from home.

We would go into a store and pass something that she wanted, like a Dora toy, or a Cars toy, or a Backyardigans toy, and if we did not let her have it, boy we did not hear the end of it. She knew exactly where the video section or the book in the store was as well. If we did not stop and let her pick out a video or book then she let us know at the top of her lungs. The amazing thing is that if she had her way, we would have at least 30 copies of the exact same book or the exact same video. All she knew is that each time she saw one of her favorite things in the store she wanted it each and every time no matter what that she already had it at home. To her it was already hers and wanted to play with it now. We were always so sneaky when it came to checkout time because we always told the cashier to hide it behind the counter as we were not going to buy the same things over and over again.

There are just so many things that would continue to happen if things were the way we wanted because ultimately that would mean that Mari would still be here with us.

I remember my mom used to always ask me as a little girl, “Does it hurt to want?” I am sure all of your parents have said this to you at one time or another. My answer had almost always been no because it doesn’t hurt to want. For the first time in my life I can now answer that it really does hurt. When I was a kid she would have said, “Well, I would quit wanting then if it hurts.” Today would be different. Even though it hurts to want, I keep wanting anyway because I just love her so much even though I know what I want will never happen.

Items on the left side

I wanted to make sure everyone knew about the items I have put on the left side of this website.

On the top left is where you can see who is following the blog and also those that would like to sign up to follow.

Next is something I added just a few days ago. Something I have been thinking about is that many of you knew Mari and I am sure that you would have a lot to say. So what I want to offer to all of you is if you would like to write something about her or if you want to dedicate something to her, please let me know.

Next are those individuals that have contributed personally to the site that have author privileges. Please let me know if you would like to contribute this way.

Next is about her Care Pages. Most of you know about her Care Page but for those of you who do not this give instructions on how to go and read her Care Page to find out what happened and how we lost our baby girl.

Next is the new group of created that is apart of Google groups. I named it Grieving Parents. I want anyone to be able to go on there and use this as a tool to help us either grieve for Mari or grieve for the loss of a child or those that knew someone that has lost a child.

Next is simply my thank you for visiting our site.

Next is the blog archieve for this site. Only the last 10 posts are shown on the front page. To read either mine or other previous posts they would be listed in here.

Next is a slideshow of pictures of Mari

Next is a slideshow of Mari's drawing all over our walls in the house we used to live in.

Next are pictures of Mari grave marker and a message from her daddy. There is also a poll to see if you can actually see the message her daddy wrote her in the dirt.

Next is the Army Drill team performing at a function Keith and I went to. There is also a poll to see what you thought of the Army Drill team performance.

The next several pictures are of your newest family members, along with a video at the top of the two chasing a lazer light which is hilarious.

Then last pictures shown are of what people have either given to Keith and I or things I have purchased to remember Mari by.

Finally, I have the only videos I have ever taken of Mari on my camera shown here. Two are actually of her. One you can see her somewhat at the begining and mostly her legs but you can hear here. And the other one you can only hear her voice as she is singing and talking.

The very last item on the bottom left is a counter showing how many people have actually visited this site.

I truly hope this site has been beneficial to all who have visited it. I know this site has been such a blessing for me. I am able to write down how I am feeling and then share it with all of you.

Kristena

Today...

Today is a day I have been dreading
Today is a day that sucks
Today is a day that I wish had never come
Today is just hard
Today is just painful
Today makes me think too much
Today makes me relive the past

I wish I could go back somehow
I wish I could go back any way possible
I wish there was a time machine to take me back
I wish there was a way
I just simply wish

Today is a day that makes me sad
Today is a day that makes me cry
Today is a day that brings deep sorrow
Today is a day that has no joy
Today is the day most of us have been dreading

What is today you may ask
Today is Thanksgiving with our beautiful Mari
Today is a day that was not ever supposed to happen without her
Yet here we are today anyway
Without any choice
Without any say in the matter

Time just kept moving forward
Time just keeps ticking
Time can be your friend
Time can be your enemy
I wish time would just take me back to where I was on July 1 and she never got sick

We love her so much
We miss her so much
We care for her so much
We adore her so much
We admire her so much
We just simply think about her all the time

To relive the past would be beautiful if somehow it would change the present
Today just sucks

Stop and Think

I wish sometimes people would really think before they say something.

It seems like I hear more times than not, “She’s in a better place.” I wonder if people HONESTLY think this makes us feel better. Yes, logically they are right. But to be blunt, WHO CARES. I am human and selfish by nature. I want my daughter back. I want her right here. It does not matter than she is technically in a better place. I miss her so much and now there is a whole in my heart that will never heal. It will never become whole again.

A couple of days ago there was a contractor that came to our house to fix some things that needed to be corrected for the village home inspection for us to be able to rent and live in the house we rented. A long story short I told him about Mari. He of course was curious and asked some questions as to what happened. I told him an extremely abbreviated version of the story because as I am sure you can well imagine it is not an easy story to tell. Then he ACTUALLY asked this question: “Do you miss her?” I could not believe the stupidity of the question. I kind of snapped at him. I said, “You know what, that was a STUPID question. WHAT DO YOU THINK?” Then I just started to cry. I could not believe he even thought to ask that question. I definitely think he talked before he really thought about what he was about to ask. I felt bad afterwards and apologized several times for snapping at him. He told me that if he the same thing had happened to him he might have said even worse. He told me not to worry about it.

I hope that all of our family, friends and those that care know how much we so appreciate you being there for us. And please know that we know you guys care for us and have been there for us more than we could have ever even imagined. Just know that what we really need from everyone is to just be there for us and to just listen when we need to talk. We love you all.

The holidays...

Everyone talks about how the holidays are so hard that first year. I can honestly say that you just do not even look forward to them what so ever.

Thanksgiving is literally right around the corner; only three days away. When I think of Thanksgiving I always think about how you are supposed to be thankful for what has happened in your life in the last year.

I am sure there are things that I should be thankful for in the last year but they are so overshadowed by the obvious. How can I be thankful for anything when I have lost my beautiful little angel? It is hard for me to even say “I am thankful for ….” I just don’t feel very thankful. I mean, let me explain. I am grateful that I have Keith. He is my love. He is my life. He is the love of my life. He is my stability. He is the one that is there for me no matter what happens in this life. He loves me no matter what.

I know that I am grateful that we both of our families that are there for us. We have friends that are there for us. Keith Army family is there for us. They are working with Keith and being very understanding through everything. They are being patient with him as he is struggling through this oh so difficult time.

To so that I am thankful thought, I just can’t. To me being grateful is just not the same thing. So I do not look forward to Thanksgiving this year as Mari is not here. She is missing from our family.

I can remember her from just last year to where she would not eat anything from Thanks giving dinner. We had to feed her a peanut butter and jelly sandwich which was a daily feeding for her. I don’t think there were too many days that went by without her having at least one PB&J sandwich. It was a staple for her. There will be no PB&J served this year at Thanksgiving dinner. Just the usual. I will miss this so much. Something that used to drive me nuts because she literally had less than 10 items she would eat and yet I miss it so much now.

I think ultimately everything that I used to take for granted and would have been thankful for now if Mari could have stayed alive is now all replaced by how much I miss her and the things we used to do and give her. So now I am not thankful very often. However, I can be grateful for certain things.

Army Drill Team

I thought it would be neat to share this with everyone. There are not a lot of things that put a smile on my face here recently but I thought this was pretty neat. I wanted to share it with everyone so you can all enjoy it as much as I did in person. I hope you enjoy. I took the video while we were at Keith's annual training conference last weekend. Please post your comments and tell me what you think.

Also, towards the very beginning there is a small 2 to 3 second section where the sound becomes fuzzy, please just wait it out and then the video will go back to normal. Again I hope everyone enjoys.

True Friendship

It amazes me how you find out who your true friends really are.

While she was in the hospital we asked people to pray for Mari to get better. And from there it became a snowball effect. We had people praying for her and us all across the country. I would not be surprised at all if there were over a half a million people who were praying for Mari and Keith and I during this time.

When Mari died there were tons of people who were there to support Keith and me. Anyone from family, to close friends, to people from Mari’s school (both past and present), to people from summer day camp (both past and present), to our military family, to our church family, plus many others we did not even know. Some came only to the wake, and some came only to the funeral, while others came to both. There were over 20 vehicles that went from the funeral home to the Abraham Lincoln National Cemetery near Joliet which was about 45 minutes to an hour away. And the vehicles did not just have one or two people in them either. Each and every vehicle was packed. It amazed me to see just how many people loved that 8 year old little girl and yet she did not even know it because she had such severe autism.

Before Mari died I had a friend whom I called my best friend. I have been there for him/her through just about everything you can imagine. When she/he got a call from one of Keith's sisters to let him/her know that Mari died I never heard from him/her. I did not even receive a card from him/her to let me know he/she was even thinking about Keith and I. My friend did not call to find out how I was. She/He did not call to find out where the funeral was. Just nothing. I finally called my friend about a month after. I left a message and then she/he called me back later. I received a ton of excuses as to why he/she never called. I was incredibly hurt. A month later I still had not heard from my friend again so this time I left a message asking if Mari’s death was just too much for my friend to handle and that my friend just could not talk to me. It might have just been too hard for her/him to handle. I did not understand how this could be since I have always been there for him/her. I get a call back from my friend and he/she says this is just not the case. She/He, again, gave me tons of excuses as to why she/he did not call. I got off the phone with her/him and realized that the person whom I have called my best friend for years was never really my best friend to begin with. A true friend would be there for you no matter how difficult or hard the situation is. A true friend is supposed to be there for you in the best of times and in the worst of times. This would definitely be considered "the worst of times." It now has been about 2 months since the last time I talk with this person. I have been incredibly hurt to know that someone I loved and cared about so much could just abandon me like this when I needed my close friends and family to be there for me the most. There is nothing else out there that compares to the loss of a child.

I am happy to say that there are other people who have been there for me beyond anything I could have imagined. Shelly is one friend that has been a privilege to know. She has been there for me through so much in the last couple of years that I have known her. She was there at the hospital on a Saturday when it was one of the worst days. They cleared out Mari’s room of everyone except me and I asked Shelly to stay behind with me. She just sat there rubbing my back as I fell asleep beside Mari in her bed. Thank you Shelly. Even my best friend from high school Sofia has been there for me even though she is 2,000 miles away from me back in California where I grew up. Thank you Sofia. Plus the many others that have been there for Keith and myself. You are so loved and appreciated more than you could ever know or even imagine. Just thank you.

4 Months...

It’s been 4 months since the loss of our beloved baby girl. 4 MONTHS!!! How can that be? It does not seem possible that just 4 short months ago we had made a decision to permanently take our daughter off of life support and let her go. Who would have ever thought that something in this life could ever be THIS hard. No one can ever imagine what it is like because we are not capable. As parents, it would drive us nuts. It would hurt everyday over something that probably will never even happen to them. I know this is how I was.

I hate it when people said or say that we were brave. Everyone needs to understand that our decision had nothing to do with bravery. It had to do with making the right choice for someone you love more than yourself. I can honestly say that there really are not too many, if any, that people love more than themselves. For me, I would have to say that I love my husband more than myself and my daughter was right there with him.

To lose her is almost impossible to describe. There really are no words that can be said that would ultimately describe how we feel. Honestly, only another parent who has lost a child can even remotely understand what we are going through. I guess the best way to describe it is that it is a club you join the moment your child is gone. It is club you never EVER wanted to join but had no choice in this matter. You would rather have gone your whole life without joining the club than to join it. But none the less, here we are where Keith and I have joined it anyway. Against our wishes. Against our will. Against everything we had ever even hoped or dreamed for. We are now members. The one thing I can say is since I had to join this terrible club at least there are others before us that can help us and those that inevitably will be joining someday that we may be able to help them some day.

It seems like as we near the next month about a week before I start to get extremely emotional up to about a week after. Then the day of comes and I am just a complete wreck.

To miss her is to love her. She will always be in my heart and in my thoughts. There will not be a day that I don’t think about her. She was half of my everything and Keith is the other half. Half of my everything is missing so there is a big whole but I am so glad that the other half is still here with me. I know that we will get through this life together as we grieve for the rest of our lives for our precious baby girl.

We love you Mari and one day we will be reunited again.

Love Mommy and Daddy

Communication, How Hard Is It Really?

I wish I understood the secret to good communication. It does not matter whether it is verbal communication, silent communication, or through someone’s body language.

In marriage it is vital. Without good communication you basically have nothing. You basically have a lifeless marriage. The only way a marriage will survive is through good communication.

When you are grieving for the loss of your daughter you find out just how hard it can become to communicate between a husband and wife when the two are grieving so incredibly differently. One wants to talk about her all the time while the other never does. One wants to watch any video clips that either show her or you can just hear her voice and the other is just depresses them too much. One cries and the other never does. One’s way of coping is to talk and the other’s is to be intimate with one another.

They both love to sleep with the quilt that mommy made her on their bed everyone night or to bring it with them if they leave town as it helps them to feel a little closer to her. Mommy needs to have her favorite white bear that has different colors that light up when you push its paw.

It amazes me how two people who love each other as much as they do can grieve so incredibly differently. Trying to communicate to each other what the other one needs to grieve seems like it might be a simple task to do but that could not be further from the truth. Ultimately the love they have for each other does go deep and that in the end is what will bring the two back together in a common place so that both of them can live the rest of their lives in loving memory of their precious baby girl.

Mari's Spirit

I sit here looking at Mari’s picture. I see her school picture from last October. It has only been a little over a year since her last fall school picture. I still have most of our pictures that had been up on the wall in our other house still in boxes from the move but her school picture that was taken on the Wednesday before Easter this past year is in there too. Just think, right now it is like she is still growing up. They are recent. They still seem new. Yet think about how it will be in 5 years from now. 10 years. Even 20 years from now. They will eventually become a distant memory. It will be like she never grows up and will forever remain 8 ½ years old. My brain cannot grasp this concept that my daughter will never grow up. She will never be will us again. I look at our fireplace mantel and just wish she could be here again. I miss her so much.

Her smile is unforgettable. Her laugher is infectious. Her hugs are immeasurable. And her presence is forever with us. Mari will always be with us but only in spirit. It is her special spirit. It is the one that makes you smile when you see something that reminds you of her. It is the one that makes you cry when you realize how much you truly miss her being her on this earth with us. Her spirit lives on while our hearts are broken and long to be with her again someday.

Thank you Mari for teaching us so much. We love you and miss you more than you could ever know.

My Thoughts

Recently I was approached and asked if I would like to put my feelings and thoughts about Mari into words here on this blog.
I guess the best place to start is at the beginning. Mari's mother and i met over 2 yrs ago and created an instant bond because my son Brian (who is 9 now) has autism also.
So as our friendship grew we would rely on each other for support by comparing our experiences no matter what time of day or night regardless of the different time zones. You see I live here in Buffalo, NY.
July 3 started out like any other summer day. My youngest son Nicky and I went outside to play and swim, Brian was in summer school and my husband was at work. Later in the day, my husband Brian came out of the house and said that I had a phone call. I was in the pool with the kids and i told him to tell the caller that I would call them back later. Now as we all know life sometimes can get pretty hectic and ours did here and I forgot to return the phone call. Little did I know that it was as serious as it was , had I realized that it was a seriuos situation I would have returned the phone call right away - I thought Mari's mom was just calling to chat.
Two days went by and Mari's mom called again and this time i picked up the phone. I was then told that Mari was in the hospital because she had gotten sick at school 2 days before and the doctors were trying to figure out what was wrong with her and what treatment would be most effective.
I told Mari's mom to keep me posted and call anytime she needed to talk. We were kept in the loop as promised and there was even one day where I was making dinner and I got a call from Illinois and the out of breath running voice on the other end said that Mari was now experiencing seizures. WHAT !! OMG I thought ... what and why is this happening.... she is only 8yrs old. I immediately called my husband and told him of this change... you know even though our families have never met we talked so often that it is like we were truly blood relatives. As the days moved on I would call the hospital in the morning to gat an update and also would read the Care Pages that had been created on Mari's behalf. Everyday we would continue to pray for Mari's speedy recovery but each day brought a new obsticle to overcome.
And then on an average summer day I got a call once again from the hospital. The family spokesperson told me that the family had decided to take Mari off life support later that evening and that it was only a matter of time before the worst happened. We as you can imagine I was standing there after hanging up the phone feeling deflated, I felt as though I was hit by a truck. I immediately hugged Brian and Nicky like I never had before. I did not know what was real anymore and no energy to do anything.
My husband and I went through the motions the rest of the night for the sake of the kids, but jumped every time the phone rang. Then about 11pm EST the call that we had dreaded all night came. Mari's aunt called to say that she had passed about 1/2 hr ago.
We again just sat on the couch together in disbelief, sorrow and an overwhelming feeling of emptiness. This is NOT how life is supposed to be.
Mari, thank you - thank you for enriching my life and teaching me NOT to take anything no matter how small for granted. To take delight in the small accomplishments that the boys make.
I LOVE YOU and will never forget you. Watch over your Mommy and Daddy little angel they need you now.
Love,
Your second family in Buffalo

Loneliness, how it must feel

The loneliness I feel is like nothing else I have ever experience in my life. It does not matter what I do or who I talk to it is always there. There are times when I can keep myself busy enough not to have to think about the true loneliness I feel but it always comes back.

I sit here in my house all alone. I have my puppy sitting on my lap because he does not like to be alone. I have my kitten at my feet because he does not like to be alone. I am glad I have them because they at least keep me company. But they are not exactly the best conversationalists.

I have friends I could call or even family members but I just don’t like to talk on the phone anymore like I used to. What am I supposed to talk about? Am I supposed to pretend that life is all honky dory and to just go on living my life as before? That is just impossible to do. Quite frankly no one really treats me the same. No one really knows what to say. It seems like the first question out of anyone’s mouth is always, “How are you?” or “How have you been?” I feel like telling them, “How do you THINK I am?” but I don’t. My standard answer is almost always, “Just dandy.” I know that the only reason why they ask is that they truly care and are just concerned about me. I love everyone for their concern as well. It is just so painful to be here without Mari.

A few days ago I got up and walked down our hallway to walk to the bathroom to get ready for bed. As I am walking down the hallway I started to ask Keith, “Have you put Mari” and then I stop in mid-sentence and finished it in my head “to bed yet?” I could not believe what I was asking. I don’t even think Keith heard me. He and I have asked each other that for years almost every night. I know that she is gone but it seems like such a habit still. Like how am I not supposed to ask that because she is still supposed to be here? Then the innate loneliness kicks in again because she is gone.

To know she is gone brings such sadness to my heart. No one can truly describe this whole in the bottom of my stomach. No one can understand the whole that has now appeared in my heart. It is just there. It will never go away. There are no words to help. There are no actions that can be done. It is the way it is and will never be the same again. We can never go back no matter how much we hope or we pray. She is just gone. If you can just imagine how utterly hopeless and lonely one can feel know this.

To have her back is just a dream. To not have her here is just a living nightmare every single day.

I sit here looking at our puppy and kitty play together. They are just so oblivious to anything that goes on around them. They seem to never be lonely. But what is amazing is that the puppy plays for a little while by himself and then comes to my feet and starts to wine because it wants to be picked up and cuddle. I think he must feel lonely and just needs that cuddle time. The kitty will jump up and put himself right up on my chest below my head and just nuzzles in. He does not like to be by himself either once he is done playing. To watch them is to know somewhat the truly loneliness I feel. But it is so different because it just goes so much deeper for me.

I try to keep myself busy with lots of different things. I will sit here and watch a movie. I will do either my statistics or American music homework and study. I will talk briefly on the phone. I will go shopping. I will write my thoughts down. I will workout. But they are all short lived and then I am where I started off, just being by myself and feeling lonely all over again.

Ultimately feeling lonely almost always brings me back to thinking about Mari. I miss her so. Mari has been and will continue to always be that light in my life. I live for each and every day I am still here on this earth. One day we will be reunited and I will finally no longer be lonely.

I love you MarMar with all my heart.

Mommy

Keith's Retirement

I posted the other day what I would like to call a film script. Typically when you think of a film script you think of a movie on the big screen or a made for TV movie. That is not what this is. What I mean by a film script is something that give you purpose, something that motivates you to do something important in your own live, I call it my "why". I made this film script of Keith's retirement from the Army. As you will read, this was written a couple of years ago. This was the dream that I had for our family one day that will never come true but I thought I would share this special dream with you. I hope you enjoy it.

It is August 22, 2014. Mariana is now 14 years old. The black stretch limousine pulls up to the house to pick up Keith, myself, Mariana, and Keith’s mom and dad. We are smiling and laughing from ear to ear. The night is special; one that will be remembered for years to come.

Keith is wearing an Armani black tux with a bow tie. I am wearing a bright Christmassy red dress. The entire dress has an overlay fabric that is an iridescent red color that almost looks like sparkles or glitter is sewn throughout the fabric and when the light hits it just right it sparkles so beautifully. The bodice of the dress is form fitting with thin straps. It has hand tacked on tiny beads all over the bodice. Then starting about the waistline the skirt of the dress starts to flow out. It is a full skirt. It reminds you of when you are a little girl twirling in a dress. I am wearing red satin strappy shoes and gloves that go up the entire length of my arms that match the color of my dress.

Mariana is in a brilliant purple floor length dress that looks just like mine. She has on purple satin strappy shoes and gloves just like mine in the color of her dress. We both have on shawls that match the color of our dresses. Keith’s dad is in the same tux as Keith. Keith’s mom has on a shimmering gold dress. It is a top and a skirt. The top buttons up the back. It has off the shoulder, made of chiffon, scrunched up type straps. The skirt is not form fitting but is not really full either. It has a slight train on the bottom. The skirt and top have hand tacked on beads and sequence. She has on a beautifully designed jacket to match.

The limousine driver comes up to the door and escorts us out to the limo. We all get into this beautiful limo. We start reminiscing about how Keith has gotten to where he is today. We are on our way to the Palmer House Hilton in downtown Chicago. We open our bottle of Cristal Champagne. We all toast Keith and how well he has done. The drive takes about an hour.

We finally get to the hotel and the limo driver gets out and opens the door. We are then escorted into the ballroom where there are over 200 people waiting on us. All of our family, friends, people from my business, and those that Keith has worked with over the years are all there to celebrate with us.

The orchestra starts to play a song for the celebration we are having. The big banner in the back of the room says, “Congratulations Keith on Your Retirement!” Keith is only 43 years old. There is dancing, dinner and many toasts that happen this night. The night never seemed to end. We all went home with such a memory that will last for years to come.

Friendship at its best

I have a dear friend that I used to work with that I had not talked to in several months who recently just find out about what happened with Mari. I have truly missed talking to her. We both have our own lives and we had both become so busy with our own lives that we didn’t talk like we used to.

I sent her an email the other day telling her among many others that I know that I had created this website in dedication to Mari. When she found out she decided to call me right away but you could hear the utter disbelief, sadness, and heartache in her voice as she heard me talk about what had happened to Mari and how she is in heaven now. She finally got to the point where she just could not talk anymore because the reality of hearing about what happened to Mari was just too unbelievable and very hard for her to hear. We all just miss her so much and to know someone with a child that has died is more than most of us can bear to think about.

She then sent me something unexpected in the mail. She had asked me for my address but I just figured I would receive a card but I never imagined that she would have sent me what she did. She gave me a Willow Tree figurine. The angel she sent me was the Angel of Remembrance. What is neat about all of this is I have a very close personal friend who is like a sister to me. She has had a collection of these in her house since before I met her. I have always thought they were so special in what their meaning for each piece symbolizes.

She was the first to give me one. She had initially purchased one for Mari while she was in the hospital. It was called the Angel of Healing. Unfortunately she was never able to give Mari that angel because Mari passed away before she had the chance to. So she gave that angel to Keith and me. I know that Keith and I have so much healing to do as it will take us the rest of our lives to heal from the loss of our beloved angel who is now in heaven.

This angel my other friend gave to us is so precious to me because the meaning of its significance is so important for all of us. Who would ever have thought that the collection my friend had that I truly admired would one day be started for me in such a special way: to help us heal from the loss of our beautiful little angel Mari. Here is a picture of both of the angels:


I have another family friend whom I have known since I was five years old. She has always been there for my family throughout the years. She herself lost a son almost two years ago and she happens to be one of the few people I go to in my most lonely and sad times.

She also sent Keith and me a very special angel. It was hard for me to read what the angel says on the front of her but she signifies Mari and all that she has meant to all of us. She sits on my fireplace mantel along with the other two Willow Tree angels and her pictures. The hearts on the chain represent Mari in the middle with her birthstone and then Keith and I on both sides of her representing how we have always loved her and we have our arms wrapped around her for eternity.


Here are some other pictures that I have put on our fireplace mantel or on the wall dedicated to her:






Mari is so missed and the day we are reunited will be one special day.

We love you Mari and cannot wait to see you one day in heaven again.

Love Mommy and Daddy