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

Mari's World - Can You Just Imagine

Today is a day without our baby girl. It seems like just yesterday that she went to be in heaven. It seem like I just said good bye. I remember that last day with longing before she went to the doctor. I felt so inconvenienced when the school called to tell me that she had a diarrhea. I felt they were making a big deal out of nothing. Who would have ever thought that what seemed like a day of inconvenience at the time would be a day I would take back in a heartbeat. Who would ever have thought that the final time I would ever put her into her own bed would have been that night. The last time she would ever say “Bear”, “Bear” and become indignant when I did not get it fast enough for her. I would take it all back to have those moments every night again.

I remember when I felt just overwhelmed with the fact of her escaping out of the house. To have that back again seems so minuet comparatively to having her just gone forever. I know that the love will go on forever but to just have what seemed like at one time to be so overwhelming that I could not handle it would be wonderful to have that back again. To be able to look at it as being thankful I have those things to worry about because then she would be here.

I know that MarMar has permanently turned her mommy into a better person. I am a person who had little to no patience before having her and she helped me to have better patience than I ever thought possible. She helped me to learn for the first time in my life what true unconditional love is really supposed to be or mean. Mari loved me no matter what I said or what I did. Whether she was in trouble for creating “Lake Mari” again in the sink in the bathroom or just spending time with her in her room while she watched one of her favorite episodes of the Backyardigans, she loved me no matter what. Even when she got in trouble she just loved me. I mean she knew when she was in trouble but she loved me no matter what.

You could say, “MarMar, hug please” and she would run up to you and give you a big hug. Then you could ask for a kiss and she would give you a big kiss with a great big smile on her face. She would be sitting in her high chair after she was done eating and then all of a sudden you could hear this little girl just burst out laughing. The thing was, to us she was laughing at absolutely nothing but her world must have been one special place because she seemed to always be happy there.

She saw thing so differently than the rest of us. There were no consequences for anything she did. She saw things so uniquely and so utterly innocent. She could sing and dance her little heart out and never get tired of her own voice. It was just precious. She had just the softest, little voice you could imagine.

She loved her bath time. She could play in the bathtub for what seemed like forever but to her she was having the time of her life. I think if she could if had her way she would have lived in the water. It was like it was her second home. And it did not matter where the water was because she loved it. It could be the puddle outside, to the water in the toilet. To her it was just water and it was a place she could have fun and just play in her world.

The room must have had some appeal to her because she used to just sing and dance and flap those arms of her in so much excitement. The world she lived in had no danger, it had no fear. She was indestructible in whatever she did. In her world she could live forever.

In her world she could eat and make the biggest messes because it was so much fun. The bigger the mess the more fun it must have been. I don’t think there was a single food she could not make a mess of and make it become art on her face and her clothes. It was just Mari.

Mari had such an innocence about her like no one else I knew. There was no danger. There were no consequences. It was just plain and simple in her world to where whatever she did or who she did it with it all boiled down to having fun and laughing her little heart out.

To miss her is to have known her and none of us will be the same without Mari’s world on this earth because that means we don’t have her.

We love you MarMar and miss you more than live itself.

Love Mommy and all those that love and miss you Baby Girl.