The story of Mary Rose…..

This is the story of Mary Rose – a journal of sorts from birth to her untimely  death…..you will laugh, cry, smile, think and hopefully in the end come to know Mary the way we know her…..

Our daughter was born two days before Thanksgiving in 2004.  She was first diagnosed as having seizures just short of being 24 hours old. From that very day when our pediatrician came into our hospital room and closed the door behind him, nothing has ever been the same. We had started that day off like any excited new parent would. I was busy getting our other daughter ready to go meet her new sister at the hospital and my wife was recovering from a long labor. There was an excitement in the air, we were now a family of four and the hopes of life, happiness and dreams all hung around us like the sweet smell of a fresh bouquet, only better.

My older daughter Grace was very excited to meet her new sister and just had to stop by the gift shop to get her a stuffed animal. She must have searched for just the right one for around a half an hour. On the way up the hospital room Grace was asking me when her new sister would be able to play with her or when they would be able to run outside together. The innocence of my daughter as well as both my wife and I were quite naive given what we were about to encounter. Grace and I walked into the hospital room filled with the anticipation of seeing our yet to be named daughter. This is when Dr. Roo (his real name is Dr. Lameroux, but we call him Dr. Roo) came into the room and closed the door behind him. What he said, and what we felt, sort of felt like a dream, but this was no dream, this was no fairy tale, this was life. He came in to tell us that our new baby was having something called “dusky episodes” where she would turn blue and was having trouble breathing.  Dr. Roo informed us that she had a series of tubes connected to her and had been moved to the ICU unit for newborns. Still we waited for the dream to end but no luck there. Dr. Roo left the room, we shed a few tears, but were optimistic about our hopes of a normal life. Gracie never did get to meet her sister that day, in fact it was nearly 3 weeks before our new daughter was to come home from the hospital.Normal life as it turns out is all relative in the grand scheme of things. Normal is something that many people take for granted in life. Normal is far from where we were or where we were going to be. Normal is almost forgotten now, just a faint memory of a distant time in our lives that was carefree, fun and exciting. After a series of tests our new daughter continued to have problems, many of which occurred during the testing process. Every time she went for a test we would hear things like “it was difficult to bring her back” or “we almost lost her there”. Things in life you never want to hear when it refers to your own child or loved one. On an especially hard test they were wheeling our daughter away and both my wife and I said “wait a minute, she doesn’t have a name, and if something happens to her in this test we need to give her a name”. And so it happened, in the middle of a long scary hallway, our new daughter was given the name of Mary Rose Faith. Mary Rose is one tough kid. She has seen the inside of more hospitals, ambulances and doctors offices than most people see in their entire life. Yet she is still a spunky, hilariously funny and dare I say a happy person. She has been tested for everything and medically, nothing is wrong with her brain, blood or nervous system. On paper Mary Rose is normal. There is that word again “normal”. Technically Mary has idiopathic epilepsy meaning there is no medical reason for her condition. She has partial onset epilepsy that becomes generalized throughout her entire brain. Mary Rose, who is seven years old now most likely doesn’t realize that something is wrong in her life. She often wakes up in a strange hospital room but her mommy and daddy are there to greet her each time. She is loved more than anyone can imagine and she knows it. To her, life may be normal, like I said it is all relative.

 

On the medical aspect Mary has baffled many of her doctors and continues to baffle us. Seizures come and go without much warning.  They can happen anywhere.  In some cases we have gone a full year without a seizure, then for no apparent reason she starts having a lot of them again.  Mary is usually on anywhere from 3-6 different meds to try to control her seizures. In addition to this she has been diagnosed with autism, and a severe learning disability.  Developmentally, she is at or around a 2 year old with regard to her communication skills. She understands everything but can barely speak more than a few words, at least ones that are understandable to everyone else.  She attends first grade at the Plainville schools system and is in the developmental classroom where she receives special education daily.  She also receives speech, physical and occupational therapy as well a host of other specialized therapy sessions from both the Plainville school system and I.A.N (Innovative Autism Network) several times a week.  Mary has come a long way in the past couple of years and has made a lot of progress.  She has a huge support network from family, to friends, to the school itself and even her own therapists.  Everyone has Mary’s best interest in their hearts and for this we are very grateful.

My wife and I love each other very much and we both know that we will not be given anything more than we can handle in life. Having a child with epilepsy or any disease/illness has a great affect on everything.  When you have children you expect the storybook childhood with them.  Our story just has a few different characters than most with a few more twists and turns in the plot.  It is exciting, scary, worrisome and wonderful, all wrapped into one story.   No aspect of our life will ever be the same. Normal is over rated. I am happy that my wife and I get to experience this as I know we are obviously handpicked for the job. It may be tough, but between my wife and I and our 3 beautiful daughters Grace, Mary Rose and Annie, we can bare this and hopefully, be able to help others in the same situation.

Fast forward to December 10, 2011 today marks the 7 year anniversary that we brought Mary home from the hospital.  No parent should ever have to leave the hospital without their baby and both my wife and I did it for what seemed like an eternity.  I look at her some times and see just how far she has progressed over the years and yet at other times I look at her and just see how much she needs to learn and grow.  Her little voice saying “help me” for even the littlest things sometimes can literally tear my heart to pieces.  Sometimes I wonder just how much is actually there, inside of her.  That breaks my heart too.   It is especially hard when I think of her growing up and both my wife and I no longer able to care for her.  Will she have two loving sisters and a family that will support her?  Of course she will.  Will most of our town know exactly who she is and keep a watchful eye over her? Of course she will.  But what kills me, is the fact that no one will be able to tuck her in at night like I can or hold her hand when she is scared like I can (like we can) or know just the right way to get her to go to sleep at night, or the secrets we share.  I said earlier I wonder just how much is “there”.  For Mary I think she understands everything we say, and I know she understands love and most of all she understands happiness and is able to feel them on a daily basis. With Mary, and our whole family, we have love and light and no matter what happens in life, no matter where we end up, Grace, Annie, myself and Sheila will always have that.

January 2012 started off with a bang and Mary obviously wanted a party.  This time she did not end up in a hospital for seizures thank God!.  But, to add to her growing list of things that baffle doctors she ended up having something called tetany which is a stiffening of the lower joints and muscle spasms throughout most of the body.  I won’t go into details here but needless to say Mary was not the most comfortable person in the world for a while.  Yet as she always does, she remained “Mary” – she was funny, she was smiling, she was making up funny words, as only Mary can, to songs during the whole process.  Here is the thing about Mary – no matter what she has endured or continues to go through she has always remained “Mary”.  Her face and eyes light up the world when she smiles.  So even in the toughest of times she seems to find happiness (now that is a motto for life if I have ever heard of one).

As I sit here and type this I hear Mary running behind me “sneaking” soda off of the table in the kitchen, and she is playing with her younger sister Annie having a blast, basically the two of them are running up the down the hallway laughing and screaming . Normal – it’s a relative term and right now at this moment she is just a normal kid with an exceptional gift….

January 2013 – a time we will never forget.  For the past year Mary has had several more seizures all due to sickness of some kind or other.   During this past year however, she had made great progress at school with communication, growth and development.  Despite the added seizure activity we were having a pretty good year until December.  Mary had become sick just before Christmas with some sort of virus, and, as in typical fashion, every test under the sun came out negative or were not 100% accurate.  Seizures started to become more frequent and we ended up in the hospital again 4 days after Christmas.   Within 24 hours she had one large cluster seizure (several seizures in a row that could not be stopped) and ended up in the Pediatric Intensive Care Unit at CCMC in Hartford.   She was there for two days and then was released to a normal room.  At this point we hoped to be on the road to recovery but she would not wake up.  We thought it was due to the heavy medications to make the seizures stop plus the mystery virus, plus her just being tired from having all those seizures.  This lasted nearly 3 days and she was still not waking up.  We knew in our hearts that something was wrong but Mary had always been the pillar of strength when it came to recovering so we were not overly concerned.

Then on Thursday January 3 she started to have one of those cluster seizures again that would not stop.  The doctors worked on her for what seemed like days while we waited anxiously outside of her room, hoping, praying, and crying for the seizures to stop.   Within minutes we knew something bad was happening, this one was different and much worse than ever before.  After about a half an hour a doctor came out of her room and spoke to us.  Once again, what we heard and what he said was kind of like a dream but very, very real.  He informed us that Mary’s heart had stopped beating and that she was without proper oxygen for around 25-30 minutes.   As we wept and tried to remain strong we told him that we wanted to go in and say goodbye as it was evident that we were losing our baby girl.  As we walked in the room, her heart started again on its own and a ray of hope came across our hearts and minds.   Mary, the pillar of strength, had returned and we were going to be okay.  They took her to the PICU again and we hoped and prayed that everything would be okay.

Mary our pillar of strength, our earthly angel, our LOVE and our LIGHT was just not strong enough to recover from this one.  On January 4^th 2013 around 2:15 in the afternoon Mary left this earth very peacefully, and entered into heaven.  She was surrounded by her mom and dad and the hearts and spirits of countless people who were praying for her.  She left this earth hearing the words I LOVE YOU over and over again as well as listening to her favorite movie in the world, “High School Musical”.

Please do not cry or be upset, for Mary is now going to touch everyone’s life from above.  She was here for only 8 years, yet taught us all so much about life, love, overcoming struggles and happiness.   No matter what happened to Mary she was always putting a smile on someone’s face with her infectious personality, spunk and sense of humor.

We laid Mary to rest today (January 8, 2013) and she was literally surrounded by a thousands of people, family, friends and supporters both in person and in spirit.  She has touched the lives of so many people and should be an inspiration for everyone.

“Be a pillar of strength, make people laugh, smile and do your best to keep enjoying life and living it to its fullest.  If Mary has taught us anything, it is to keep fighting to the very end and to spread love and good will.  How lucky are we that we get to have someone like her looking over us, now and forever”

 

Nothing more than you can handle….The “Gifts” we receive

My wife and I have often said that God will never give more than you can handle in life. And when it comes to the things that have been thrown at us with regard to our daughter Mary Rose and her long list of disabilities, struggles, etc – we say that we were hand picked for the job. Well I actually take this and all of life’s troubles one step further. For me, each struggle in life is a gift in a way. Yes, I know many of you are sort of scratching your head saying that I have lost my mind, but, I am serious. In one way or another every struggle is a gift of sorts whether we like it or not. This gift is not returnable, we can’t exchange it for a different color or size, and we must keep it and deal with it, and in some cases forever.

When it comes to children who have to deal with life’s struggles, we unfortunately have to take that burden on for them as well. This may not seem like a gift to them or to you, and believe me finding any good in that is very difficult, however, what makes their struggle a gift is how we deal with it. We can hide, bury our head in the sand, deny that it exists, get angry, feel overwhelmed, feel alone, feel as though our world is about to end….or we can turn around and accept it and take it head on and just say thank you.

Thank you that we were the ones who were chosen and the ones who were found to be strong enough to take care of this new struggle in life and the ones who were brave enough and love enough to care for our child in their time of need. After all, no one can love our children like we can when they are sick. Trust me, we would never wish for any child to be sick, get diagnosed with any disease, be born with a disability or have anything go wrong ever…but that is not reality, all I am saying is that if they ever get stricken with anything I would hope that we as parents would be the ones who would be there to help and guide them and protect them as no one else can, and what a GIFT that is.

We can also take this one step further with regard to the concept of the gift and being thankful. See in life we all have our cross to bear. For some, that cross is a child being diagnosed with diabetes , for others it’s a child going through depression or having suicidal thoughts. For others it may be a child being bound to a wheel chair, going deaf, blind, paralyzed, or worse. Again, there is room for thanks. Thank you, that you got to wake up next to your child, hold their hand, see them smile, know that they loved you, know that they were loved and knew it themselves, or that you got to spend those few precious moments with them before they passed. Thank you, that all you and your child had to deal with was…..(insert blank)…..after all it could have been worse…….remember, there is always someone out there who has it worse off……

I guess I just look at things differently now. I could look at our life and say “poor us”, “poor Mary” etc….but if I did that I would miss out on so much in life, like her wonderful smiles not to mention my 3 wonderful women in my life, my wife Sheila, and my two girls Gracie and Annie who bring sheer joy to our lives. So again I say thank you for all of the gifts that we have.

I hope this sparks some thoughts and not quick criticism. What I am trying to say in a nutshell is that for each person their problems or issues could be all consuming to them, they may feel alone and feel as though nothing in life could be worse. And for them they may be right because for each one of us it is all relative. It’s all a matter of how they move forward and know that they are not alone.

After writing this in March of 2012 I had no idea that our lives would change so much this year. Mary Rose Faith passed on January 4th 2013 and yet amongst all of this I still say thank you. Thank you to the thousands of people who support us, thank you for giving us 8 great years with the most beautiful girl in the world. Thank you for blessing us with family, friends and Grace and Annie our two wonderful daughters. Thank you for giving us an angel in heaven to watch over us in more ways than we can ever imagine.

Thank you sometimes isn’t enough but when words fail a heart and your faith takes over.

For other blog posts see – https://kevindiminno.wordpress.com

Missing you…Life after the death of a child

Mary Rose Faith
May you Rest in Peace

Our house is not the same without you.  We are not the same without you.  Our world crumbled when you left this world.  “Mary Rose Faith DiMinno- that is quite a name”, that is what I used to say to you every night before you went to sleep.  I also told you, how you were so strong and brave and how proud I was of you.  I told you to always remember that you were loved no matter what, no matter where we were, that we would always love you, in person or in spirit.

Well, now it is you that comforts us, watches over us and makes us laugh, cry and celebrate your life.  Your spirit is what carries us when we are down, it heals our hearts when we want to just hold you one more time or hear your laughter ringing throughout our house.  We find ourselves watching your old videos just to hear your voice, just to feel your spirit for life, to laugh out loud or to just have a good cry. You are missed beyond words, yet we know that your spirit is very close to everyone.

There is also a great sense of love and support from all of the people who you touched while you were with us, and continue to touch in spirit. We continue to get cards, letters, gestures, and overall kindness from people every day. We are very grateful to everyone for this. Your spirit is very powerful, “Mary Rosie” and we love you very much….and I think you always knew that and you always will.  (February 4, 2013)

Some times all of the writing, comments, memorials and WORDS are just that, ‘words”. Words on a page that are, at times, disconnected from life.
It seems as if we have become so engrossed in keeping busy or occupied that the meaning of the words get lost or are put aside from any “real” feeling. They are, after all, just words on a page. It is as though the words are not connected to our life or we are reading about a tragic story that belongs to someone else.

Then, without any warning, “real life” rears its ugly head and slaps you right across your face. It rips at your heart and literally tears you apart. It is days like that, when the flood of emotion comes over you and takes control, that are the hardest. We know this is all part of the healing process and it is something that everyone has to deal with in one way or another in their lives. Yet it is these very words that are such a comfort to all of us. And for this we are truly grateful. Thank you isn’t enough when it comes to the love and support that each of you give our family. But please know that every word, gesture, prayer or thought is helpful. Thank you…..(February 12, 2013)

Valentines day 2013 – well, what can I say, today was tough.  Usually I surprise my girls with a stuffed animal for Valentines day.  How it killed me to walk up to that register and not have 3 bears in my hand.   We still have Mary’s first bear, the one with the smiley face sticker on it, put on ages ago to make her smile.  (Annie sleeps with that bear now).  Of course Mary always hated stuffed animals and would much prefer to just throw them on the ground with that spunky attitude of hers.  But, none the less, I would still buy Grace, Mary and Annie a stuffed animal each year.  It was a tradition that I will most likely carry out as long as they let me.   Today was different though – something was missing, a bear that she would hate, or throw, or just sit on a shelf was not there and I feel as though a part of me was missing too.   I guess this is just a small step in the long journey of firsts that we must all face in the coming months and years.

We have already had lots of firsts without Mary and each one seems to get harder.  Going to dinner that first time as a family of four instead five, a first snowfall and pig pile as my girls try to tackle me.  A first visit to a family member or friends house, simply driving in the car as a family, something is missing.  Then there are the firsts to come, like birthdays, holidays, picnics, and even firsts we have never done before like going on a vacation. Each one is going to have something missing, yet I know that her spirit is with us always, loving, protecting and holding us up when we are down.  I know this, but, it doesn’t make it any easier.

So many people have said, “I don’t know how you are both handling this so well” or “you are so strong”  and for the most part, they are right.  We are handling this, and we are strong, but that doesn’t mean it is easy.  Like I said there will be many new firsts, many new “normals” that we have to adjust to. A first step of many, Happy Valentines day Mary Rose…..(February 14, 2013)

Photo taken December 26, 2012

2012 – A Letter to Santa – this is what I found today when looking in my top drawer.  A single letter with all of our requests that we would hope for from Santa.  Of course we had Grace’s one and only request, an IPOD5, our normal request to live happy, healthy, long lives (yes we actually ask for that from Santa each year) and then a small list of things for Mary Rose and Annie.  Each year Grace helps write the letter to Santa and this year she sat for around 25 minutes working with Mary and Annie coming up with the perfect list of things they would like.  For Mary it was things like – a CD of the Fresh Beat band, educational toys, Puzzles, Balls, anything Big Time Rush.  For Annie she wanted a doll and some clothes for them.  Simple little requests that under any other circumstance, would be cute.  These simple requests from Santa will now live forever as the last letter that is from a family of 5.  This simple little letter, this piece of paper, with words scribbled on them, has had the most profound effect on me so far.  It killed me to find it yet I am glad we saved a copy.  It is really hard to think of what the coming months are going to bring, what hidden treasure, or photo or memory will be found that will trigger a flood of emotion stronger than the one before.  Just a small step on the path of our journey I guess.  I think I will tuck that letter away in a safe place so we can remember how things were back in 2012.  A time of innocence, a time of peace and a time when we were truly a “party of five”  (February 25, 2013)

Today was one of those days when I just needed to take on a fear and deal with it.  Since Mary’s passing I have not been able to drive by her school let alone visit other than one time back in January.  This was true until today, when I went in to be LINDY  (the dolphin mascot for Mary’s school) in honor of Dr Seuss’s birthday and the Read Across America campaign.  I have played the part of the mascot several times before but this would be the first without Mary Rose.  Today, Annie and I would go in together, alone.   I dreaded the drive in, the familiar route I had taken so many times to bring Mary to school.  Today it was sadly absent of the sounds of Mary and Annie singing the alphabet song or some other crazy version of a song where we would insert all of names of Mary’s teachers into a familiar tune, just to get her to laugh.  The drive in was quiet, too quiet. I dreaded to see the crossing guard who would wave every day as we would drive in.  I dreaded not hearing Mary say “school” or “Santiago” or “Kowski” or any other word that she might yell as we drove in the parking lot. I dreaded not driving up to the front of the building to drop Mary off, only to find out that she had taken off both shoes and would be laughing hysterically as I tried to put them on before she got out of the car. I dreaded the building, the people, just about everything.  But today was the day that I needed to conquer my fear and just do it.

I held my breath as I walked up with Annie holding my hand to the front door only to be be greeted by two familiar faces standing in the doorway who were very happy to see us.  A parent that I had gotten to know over the years and the school psychologist.  Okay, step one, we are in the door.  Now on to the office for step two.  Here we were greeted as well by all of the familiar faces who knew us or knew Mary.  Step two down.

After a while I escorted Annie to a classroom where she would stay while I was playing the part of the mascot.  The hall way seemed colder than I had remembered, and the walk to the classroom (Mary’s first grade classroom from last year) seemed like it was a mile away.   We knocked on the door and were greeted by more smiles, not to mention a whole classroom of kids who were excited that Annie was coming in to visit.  Most of these kids did not know Mary personally so other than the physical place nothing was really hard about being there.  Annie was now safe in a classroom where she would be spoiled like crazy.  Step three down.

Within a few minutes I was dressed and ready to go in the mascot outfit.  Yes, I became a six foot tall dolphin in a professional costume that was already beyond hot.  The battery to the fan in the head was missing so no “cool breeze” for me.  (Not that it would make a difference – hot air being blown at you is still hot).  Now, me along with someone else who was dressed as  the “Cat in the Hat”,  were off to visit every classroom.  The heat was building and I was not even there yet.  My vision was blurred as I only had three small spaces to see out of.   Within a minute or so we entered our first classroom where we were greeted by laughing, smiling, and happy children nearly every step we took.  They were yelling out loud with excitement as we walked in.  “LINDY is here, LINDY, LINDY LINDY” is all I heard.

From this point forward my time was filled with children running up and giving me a hug, or giving me a high five or just saying HI.  Everyone wanted a picture with me.  As the flashes went off on the cameras I found myself trying to smile at each photo and look right into the camera.  This was about the time that I realized that they couldn’t see me smiling so why the heck was I doing it?  My cheeks were getting sore from smiling so much and I didn’t need to move a muscle because no one would ever see my face.  More pictures, more smiles, more classes, more stairs, MORE HEAT (did I mention HEAT?) Okay now this is fun.

Oh no – the biggest dread of all was about to come my way.  I was about to enter Mary’s second grade classroom, the room where she sat just two short months ago, right before Christmas break. I held my breath again as I walked in and saw all the familiar faces, her friends, her classmates, her teacher.  This was not going to be easy, how was I going to get through this part………..well it must have been the HEAT or my lack of ability to see or hear all that much that made this part of the day really nice.  Even though the kids didn’t know who I was, I knew who they were and they were all smiling, happy and enjoying themselves as only Mary would have wanted it.   I posed for pictures got hugs from all of them and took it all in.  The room was not vacant or sad or missing anything.  The spirit of Mary is all around that school, as it is all around our family, friends and supporters.  Her spirit was with me, helping me through, making me “SMILE” for pictures.  Yes, behind the mask I was still smiling for pictures, I was smiling because I was not alone, I had the spirit of Mary and the entire school with me, and all was good. Before I knew it, it was time to leave and move on to the next classroom, and then the next and so on.

This was taken in 2010 during one of my previous visits as LINDY

My day of dread turned out to be a very good one.  A day filled with smiles, love, happiness and unity.  All was good, all was good indeed.  (March 1, 2013)

You were the glue that held us together and made us strong. These last few months only seem to be getting harder each day. We keep ourselves busy, maybe too busy, to mask the pain and void that is now so present in our lives. We still watch your videos just to hear your voice and to smile. It is comforting yet sad at the same time. The outpouring of generosity and kindness from people are still unbelievable. In fact our entire neighborhood seems to hold us under their wing as do our family and friends and countless strangers. It’s a great feeling, knowing that you had and have this effect on people.

Your swing set is used daily but your laughter and scary acrobatics are missing. We now go out in the Jeep (something we could never do as a family of five before) and the absence of having your arms catching and floating on the breeze, not to mention your constant laughing, screaming and our famous “1 2 3 weeeeeee” is numbing.

We know that it will get easier over time and we know that the love and support that is all around will get us through…..Love You! (April 29, 2013)

It has been so long since I have written anything, perhaps because I am just so numb to everything or everything has already been said in this ongoing letter.   Life is flying by faster now than ever before.   Days turn into weeks, which turn into months and every day seems like a blur.   I have said before, that maybe I keep myself too busy…..too busy to feel…..to busy to think……..to busy for reality to set in.  Don’t get me wrong I still have days where I feel everything, but lately I am in such a fog that it is almost as if nothing ever happened.  It is nearly five months since you left this world and it still doesn’t seem real……

On the other hand we have made so many changes and so many plans, yet there are still constant reminders that come out or events that trigger a flood of memories.    It still hurts when we go out in the car and we are reminded how we are a family of four now…..not five as it should be.   Both your mom and I still listen to the CD that we made for the car when driving alone, of music that you liked.  Big Time Rushhhhhhhhhh! – singing “if I ruled the world” always gets me.  Do you know how hard it is to cry like a baby and be driving yourself in a car………YIKES?  Or we will stumble across something that you use to play with, like the plastic balls from the ball pit.  The ones with teeth marks are especially difficult to see, yet I still save every one or put them back where I found them only so we can stumble upon them again someday……  Seeing an ad for your favorite movie also gets me – High School Musical will forever be your movie.  It was the movie you heard as your left this world, it was the movie that had comforted you so many times in the hospitals or kept you busy on the long trips to Boston to see your doctor.   Constant reminders that are always around us……flooding us with good memories of you as well as bringing everything to the surface that is buried behind all that “busyness”.

I have not yet become angry with everything (one of the so called phases of dealing with a loss)  Believe it or not I still thank God every day for the gifts that we have received in life (https://kevindiminno.wordpress.com/2013/01/08/nothing-more-than-you-can-handle-the-gifts-we-receive/ )  However, it is wrong that you are not hear with us, bouncing up and down in the back seat to your favorite songs or using my Jeep as your personal jungle gym.  Or throwing one of those silly plastic balls at someone with near perfect aim every time…….The Memorial day parade was really hard this year, as is every event that you used to attend with us when we were a “party of five”…….it is wrong that you were not there….yet I know that you are with us always in spirit.  I truly believe that you are literally a breathe away from us at any given moment……but sometimes that breathe seems so distant.

As I have mentioned before we also have plans for the future,, but they are plans without you and it feels sad.  We also have plans to honor and remember you with Chinese lanterns that will be launched on the 6 month anniversary of your passing.  July 4th or thereabouts we will be setting off several of these lanterns into the sky,  small bits of light flown up in memory of you.

We all miss you Mary Rose…..you were literally the glue that held us all together……..(June 3, 2013)

In just days it will be six months since you left this world and became an angel up in heaven. The pain of you not being here is actually getting worse instead of better. Yes, there are times during the day that life goes on, just as if, nothing had ever happened. Then the harsh reality sets in…..you are gone. We are the parents who lost a child way to short in life, and we are the ones, as well as everyone else who misses you, have to deal with the heartache. Time heals all wounds……perhaps, but at this point the more time that passes the harder this is becoming. Then there are the horrible visions that we can’t seem to shake from our minds. Those memories from the hospital haunt us, and I am literally to the point where I say out loud, the word “NO” in the hopes that the memory will fade or the sounds we heard will leave our minds. I have several happy memories that I can use to bring myself back into focus and I am thankful for that. Even good memories from the hospital, like when you smiled and tried to open your eyes when you heard Grace come in and lay next to you. Or, one of the happiest memories I have as your dad is when I would hold you in my arms and spin you around in our kitchen, dancing to some music on the radio or some crazy song we made up. I still see your gleaming face and feel your touch from those happy days. I have other memories or “happy thoughts” that I can go to as well. Each one is a special heartfelt memory that fills my heart with pride that I was able to share those moments with you. We all have memories like this, that we can turn too…..and for this we remain thankful…… if only those bad memories and sounds would go away forever……..one can only hope. Love you Mary Rose……keep watching over us.

December 2013 – it has been a long time since I have written in here but it is time to begin again.  As we head into 2014 and go through these last few days of December, I am reminded constantly of your last week on earth.  On December 28th of last year you headed to the hospital for what would be the last time ever.  I pray and wish that those last few days on earth were peaceful and you did not feel any pain.  Each second of those days are etched into my mind and are really coming to the surface now.  Every moment, every action, reaction, feeling and emotion is hitting me all at once and I am finding it hard to breathe.  A weight lies over my chest and only brings the heaviness in my heart more into focus.  What can I say other than we miss you beyond words.  It hurts literally…..

This has been a year of firsts for us.  We went on vacation for the first time ever to honor your birthday.  Grace, Annie, myself and Mommy all smiled, laughed  and had fun the entire time.   We ate cake with our hands as only you could and we watched fireworks from the top off our hotel for a very private and special showing.   We had a party to thank our neighbors for all of their help and support as well as some really close and thoughtful friends and loved ones.  We celebrated life at that party…..we celebrated you……  To end the party we set off over 20 sky lanterns into the night sky, each carrying a thought and a prayer for you.  I feel you around us and appreciate the signs that you give us, to let us know that you are there.  The butterflies around your swing set, the magnificent clouds and sky views are breathtaking.  Not to mention the countless other signs that you give us all each and every day.   There have been other firsts this year as well and many of them are very hard.  Holidays, birthdays, the beginning and end of the school year.  Way too many firsts to list but all were very hard and very lonely.   We still miss you Mary Rose Faith DiMinno, the girl with the extraordinary name.  We love you more than words or actions could ever show.

As the next few days unravel and the feelings of loss and heartache come up to the surface I will try and keep a smile on my face and just know that I will keep you close at heart as I always do.

February 22nd 2014 – Happy Birthday to me! I can’t believe how time is flying by and so many things are going on. This will be my second birthday without our Mary Rose singing to me, as only she could, her best rendition of Happy Birthday. Here is a video of Mary and Annie singing happy birthday just because they liked singing it. http://youtu.be/klKDv7aXTGw Watching this video as well as so many others just brings tears to my eyes. I can’t believe you are gone, it seems as if only yesterday I was chasing you around the house, or being tackled by you and your sisters. Life has changed so much in these past two years. Tonight we went to a birthday party for Sally and had a wonderful time. This is something we would never have done when you were around for various reasons. As nice as it is being able to do new things it is still very hard when the reality of you not being here sets in. I know I have said this before but you are missed more than words can ever describe, yet our life still goes on. We laugh, smile and for the most part, have a good time with each other. Today also marked a special event. Grace played her last basketball game in her league. Now the only basketball we will see is if she tries out for the middle school team or travel team. An end of an era. You would have been so proud of your sister because she played her heart out and made everyone proud. Of course you have the best seat in the house looking down on us from heaven. In any case, it was a great day and a bittersweet day on so many occasions. We miss you Mary Rose, keep watching over us all. I love you my friend.

March 5, 2014 Today was just one of those days when the memories of the past are haunting me. Perhaps it was the ambulance we pulled up next to last night with an elderly woman in the back wearing an oxygen mask. You know it still bothers me to see an ambulance, especially the ones parked down in the Shop Rite plaza near our house. Those are the ones you rode in so many times before including your last ride, it was after a snow fall just after Christmas. I remember that ride and those next few days so vividly. It’s as if the entire world went into slow motion, every detail, every sound, every single second is just burned into my mind. I try to forget, I try to smile but the memories just take over. We all still laugh and have really good days, don’t get me wrong, but days like this are just so hard, so real, so emotional. As I sit here in our nightly routine of life I am so thankful that we were blessed with you. We truly were hand picked for the job. You were an angel on earth and now one in heaven. Blessings come in the strangest ways sometime……We love you Mary Rosie.

Happy Saint PATRICK’S day Mary Rose. Now that the snow is finally cleared I came to visit your grave today. Yes another one of those days, a day where your glasses get fogged up. It seems that so many people are thinking of you lately. We have been told by friends, family members, neighbors, and even strangers who know about you from reading this blog, that you have been on their minds lately. We were told the other day that the words in this blog are healing to others and are a wonderful tribute to your memory. It seems you are still having a wonderful impact on others even though you are not physically with us any longer. Your spirit, your spunk, your happiness, your laughter and your overall strength are still making people smile today. And for this, we are all thankful. Thank you my “mini me” for giving us the precious gifts that mean so much to so many people. Continue to paint the sky as only an angel could. Love you.

Well here it is September 18th 2014.  It has been a long time since I have written here.  It is days like this that the emptiness and sadness really come over you.  Today is Annie’s birthday and also your mommies.  Annie turned 5 today, I can’t believe our little girl is getting so big.  Mommy is only 34 but she is still older than me (ha ha ha).   Life continues to pass by at lightning speed.  The last time I wrote in here it was early spring and here it is almost the end of summer.  You would be so proud of everyone and their accomplishments over the past few months.  Grace played softball for a the Plainville Little League and also made the All Star team.  She did so great out on that field, we are so very proud of her.  Grace also made honor roll at school.  She also passed her swimming lessons and will be starting junior life guarding next.  She may even join the flag football team and would like to be on the swim team again too.  Crazy stuff for sure.    Annie on the other hand is now a “whole handful” – she is five years old and like we always say about Annie – “everything she does in life is like going to Disney world to her”.  She gets so excited about everything, and I mean everything.   The other day she told us that she loved us from above heaven and back.  She really is a good kid and so is Grace.  We still talk about you, we still ask Annie to do the “Mary shake” dance and she does her best impression of you.  We still laugh and have good times and your name comes up quite a bit.

As I sit here and write this a thought occurred to me, it is a thought I have been thinking of for many weeks now.  In fact I may even start a new post on the very subject.  In any case I am finding it very difficult to lose things that you used to be connected to.  I know it sounds weird but I like to say Mary’s DNA is still here or there.  Maybe a better word is Mary’s presence is still here.  The couches that you and your sister used to play on are still there, my Jeep, so many little pieces of you scattered through our lives.  Yet when we lose something that you were connected with it is almost as if we are losing a part of you.  I know I am not making any sense here but here is an example.  People from our past who knew you can relate and understand what we are feeling, yet we have met so many new people who never knew you that it is hard.  Our lives have moved on and now there are new things coming into our life that you were not a part of.  I know you are with us always, I get that, I understand that but something as stupid as getting rid of a couch hurts because it is something that you were a part of.  I guess another way to say this is, Joey and Bailey, our dogs that knew you.  Someday we are going to get a new dog or pet and they will never have known you and that is sad.  Some day we are going to lose Joey and Bailey and another part of something you were a part of will be gone.  It’s like pieces of you are being chipped away from our lives and I really have a hard time it.  ( I am not thinking straight so I will leave this post unfinished for now)

 

To be continued………………

Read about the life of Mary Rose here – https://kevindiminno.wordpress.com and another post about being thankful.  https://kevindiminno.wordpress.com/2013/01/08/nothing-more-than-you-can-handle-the-gifts-we-receive/

 

Routines in life and how they change

Routines, we all have them.  Whether it is the way we drive to work, get ready for our day, interact with the people around us or even something as simple as cooking. One way or another everyone has a routine in their life.

Routines are great because we really don’t have to “think” too much, because the action we are doing is just that, “routine”.   If anything, having a routine allows us to focus on other things in our lives.  Think about the last time you drove somewhere familiar and forgot the entire trip. Your mind was on auto pilot mode, which allowed you the necessary time to deal or think of other things in your life, or to just allow you to have a break and give you a little peace and quiet. In some ways this is a good thing because we all have things we need to sort out or deal with in life. However, there is a bad side to routines as well.  And no, I am not going to talk about how routines can get in the way of living or seeing the world around you or how they can lead to a boring life (though these are important as well).  The bad part of having all of these routines is when several of them are taken away from you in a short period of time.

For example, I have lost several routines in my life over the past few years.  For 12 years I drove back and forth to work, with an hour commute in each direction. Other than a minor back road or two I would drive the exact same route every day. Route 9, to I-95, back and forth over and over and over again.  During my hour long commute I would listen to the same radio stations at certain times, so I could hear my favorite segments, or hear the news and weather reports or favorite talk show host.  Yes, I was an AM radio junkie for two hours a day for 12 years.   During the day my job itself was a series of routines as well, whether it was checking email, voicemails, daily work etc, each day was filled with routines that were either created or were just part of my day.   Don’t get me wrong I loved my little routines, all kept tidy in little boxes inside my mind.  I was in control and I knew what was coming because it was all part of a daily routine.  Then one October morning in 2010 my entire world was changed when I lost my job.  This would literally be the first time since I was 13 years old that I did not work in some capacity or another. I had never gone without a job and the thought of not being able to do my “routines” was daunting.  I was no longer in control and everything in my life changed.  However, this change also affected my entire family unit.  All of a sudden it was my wife who had to go to work and I stayed home with our kids. So, in a sense one set of routines were lost and rippled through everyone in our household.  Everyone’s routines were changed and it was not easy on any of us, even today nearly 3 years later, the rippled effect of this change can be felt by everyone.  Of course in this case there was at least “some good” about the changes, because I was able to spend more time with my family, be closer to home and I was able to create a successful business of my own which has been open literally every day since November 2010 (not a single day off in that entire time due to the nature of the business itself.)  Plus, a great benefit was that I was no longer driving two hours a day on dangerous roads during my commute. (something everyone in my family was glad to see leave the equation).

Another example of changes in routines was the loss of our daughter Mary Rose.  As most of you know, Mary passed away at an early age of 8 years old (you can read about her life here https://kevindiminno.wordpress.com/2013/01/09/the-story-of-mary-rose/) and her loss has rocked our world in so many ways that nothing else even compares to anything we have ever dealt with in life.  Our world had many routines with Mary.  Whether it was making her favorite scrambled eggs every day for breakfast, a sandwich or Mac N Cheese for lunch, giving her the medications she needed at precise times during the day, driving her to school or to therapy. (Singing the alphabet song or making up words to familiar songs by inserting her teachers names into the tune – which only led to Mary laughing hysterically the entire way)  We had hundreds of routines that were all part of our daily life.  Even our night time had routines.  Bedtime was always the same, after brushing her teeth and having a song sung to her by her mom (with words made up or changed to make Mary laugh out loud).  We would then settle down and have her say in her own special way that she loved Gracie, “Gae Kee”, Annie “EE EE”, “Mommy” and “Da” or “Daaa Dee”.  Then she would hold her arms up over her head when we asked her how much she loved any one of us. She, along with Grace, would be read a story each night in Mary’s room.  Then we would watch her for about an hour to make sure that she fell asleep and did not have a seizure or any other issue.  Every night the same routine done over and over again.

Routines……..broken routines that are so ingrained in us that we find ourselves still trying to do them months or years after they are taken away from us.  How many times have we looked at the clock and said “hey did you make her three o’clock meds” ?  Or, how many times have we tried to sing a funny song or look for Annie to do her “Mary shake” dance.  How many times have we longed for our old routines, our old way of life?

People say change is good, and in some cases it is, but changes like this are very hard habits to break.  Today we find ourselves looking for new routines or learning new ones as we struggle to maintain some semblance of normalcy.  There are times when we all wished that we had more routines to “keep our minds occupied” or have more “busy work” to keep us focused, but, it is the lack of routines and the down times that are the hardest of all.   The down times in our lives bring everything painful to the surface.  No matter how “busy” we make ourselves, the harsh reality sets in from time to time and literally takes our breath away.  People also say that life goes on, and it does.  We enjoy our lives and take nothing for granted, yet we still hold onto the past….hoping, wishing and praying to bring it all back to a routine that we were all familiar with.

Routines in life – yes, they certainly do change.

Happy Mothers Day!

Just wanted to wish everyone a very Happy Mother’s Day.

 

 

 

 

 

 

 

 

 

 

https://kevindiminno.wordpress.com/2013/01/09/the-story-of-mary-rose/

 

To be or not to be…….that, is the decision.

Many of you may not know this but, for many years I have always dreamed of writing a book or series of children’s books.  The ideas are constantly running through my head, I can see the pages and how they should look, the art work, the overall feel of the books themselves, everything.  Writing to me is a great outlet for feelings, beliefs, words of encouragement and tributes to life.  This passion or dream really started when I was very young (most likely highschool).  It was during this time that I really started to become aware that I was creating a certain VOICE for my writings.  A voice that was comforting to others and was more of a conversation than a story itself .  I was writing as if I was giving a speech or talking to a large group of people.

Early in my high school career I was asked to write a short story in an English class. I still have that story in my head to this day.  I took the parts of the words from a song by U2. “We take the staircase to the first floor, We turn the key and slowly unlock the door, And through the walls we hear the city groan, Outside it’s America – outside it’s America” (Lyrics by U2) Basically, I expanded them to be a story of life after a nuclear war, we were under ground and were about to come up and see what was left, we were scared and did not know what was out there, yet we knew we had to face it.  At the time, I just thought I was writing about a song, when in reality I was writing what every young high school student was feeling and thinking.  We were all scared, we didn’t know where we were going, yet we all had to face the challenges that the coming years would bring.

In addition to this I would write letters to the editor of our local news paper, several of which per published. One letter in particular was in memory of a friend that had died during the school year.  As it turns out he was my first childhood friend.  Literally, his mom and my mom would walk together when we were still in strollers.  Though we had drifted apart during our school years I always remembered him.  Then he was diagnosed with cancer shortly before entering high school and ended up losing the battle much too soon in life.  In fact the yearbook that year was dedicated to him.  “In memory of Paul Walko”, along with his picture.  The words just came to me, probably because they were from the heart.

     “Last year at this time, Paul Walko, a friend of mine and a student at Aquinas High School died of cancer.
      I also went to Aquinas and remember him well, I remember his great personality and loving spirit but what I remember most is that Paul was my first friend.  We were friends from infancy, even fighting over each other’s toys.
Though a lot of things have happened since Paul’s passing, his memory still lives on, touching the hearts of many.  This year my graduating class at Aquinas dedicated our yearbook to Paul’s memory.
I’ll never forget Paul Walko, my first friend. “What is essential is invisible to the eye”” (Originally Printed and Written in 1986)

Pretty profound, in my opinion, for a high school student.

One of my first writings ever, that I can remember, was a letter to the editor about Christmas and some of the hardships people were facing.  Again, the words just came to me.  This time it was not driven by any event or persons that I knew, in this case the words were just there and I had to get them down on paper.  Here is that first writing.

The Meaning of Christmas (Originally Printed and Written – Date unknown)

“A mother yells “shut up” to her child….Merry Christmas
How many presents and I getting this year?…Merry Christma
A father doesn’t come home …Merry Christm
As far as I’m concerned she doesn’t exist…Merry Christ
Get a job you bum…Merry Chris
This tree isn’t as big as last year’s…Merry Chri
Fighting over a parking spot…Merry Chr
Don’t display that nativity scene in public…Merry Ch
I hate you…Merry C
A child cries because they are alone….Merry
Sit down and be good or Santa isn’t coming…Merr
Do we have to invite them…Mer
A mother slaps her child for crying….Me
A mother slaps her child…..
Have we forgotten the meaning of CHRISTmas?”

As far as having the “words” just come to me this was true for all of my writings during school, college and as they are today.  All I really need is that first “word” and everything just opens up and starts pouring out.  This trait used to drive my professors crazy.  For every essay I had to write I needed to write an outline first.  Outlines meant that you had to have a plan for what you were about to say.  This was not my style at all.  I needed to just sit down and start writing, so in most of the cases, I would write the essay out in full then would go back and “create” an outline that I could use if needed.

I have written several more letters to the editor over the past 18 years but the one that really stands out for me is when I began to write about my daughter Mary Rose  in 2004 who was diagnosed with epilepsy among other things.  You can read her life story here https://kevindiminno.wordpress.com/2013/01/09/the-story-of-mary-rose .   Granted it had been a long time since I had written anything from the heart but, in this particular case, I needed an outlet for my feelings.  Somewhere to store my thoughts, to tell the story to others and a place to keep an ongoing record of life itself.  The story of Mary Rose has actually been used in several ways over the years, including being sent to Washington D.C. through the national Epilepsy Foundation as well as being read on the house floor of the CT state assembly supporting a bill requiring the use of brand name medications for epilepsy patients.  Of course it was also a log of her life, a life which ended way too soon.

Over the years I have enjoyed writing and continue to use it as an outlet for and about life today.  So the questions remains – Do I pursue writing as my next career move?  Like I said…to be or not to be…..that, is the decision.

Friends of Mary Rose Faith Facebook Page

Friends of Mary Rose Faith Facebook Page

This page is dedicated Mary Rose Faith DiMinno – feel free to share your stories about her, pictures, memories or just about anything that will inspire you, make you smile and think about life and how to live it better. Though non of us will ever forget her, this page will hopefully give you comfort that she is watching over all of us.

Missing an old love

Missing an old love can be very painful, bittersweet or heartbreaking.  This love was always a comfort to me, always there for me, never asking for anything in return,  Lunches were rarely spent apart and on occasion I would even sneak away to see this love during the day, even for a few minutes. The love that was there, had never been spoken, because it was not that kind of love. This love, a love I still think about every day, is missed beyond words and I regret losing it and everything that happend to cause it.

This past weekend I saw my old love again and felt more alive than I had felt in a very long time. The smells, the sounds, every aspect was filled with renewal, hope and peace.   But then it was also filled with a deep sadness because I knew I could never have what I had, ever again. 

My life has changed, I have tried to move on and forget but that last part is the hardest ever.  But the good news is that my life has changed in a way I never imagined.  I am closer to my family now, I even started my own business.  I am a social media consultant now.  The other good news is that I know my love will always be there, it will just take a little longer to get there, that’s all. 

My love  –  The Ocean, The Sea, The Salt Air – never far from reach and no longer hidden from my view. 

 

My Little Town of….

I live in a small town – like most Americans who do not live in a big city, I am from a small community or town.  And yes, right now I have the song from John Mellencamp ringing in my ears.  Anyway, my small town is not unlike the hundreds of other small towns that scatter this great country of ours.

We have a dozen or so pizza shops, bakeries, florists, jewelry shops and other small places where people gather on any given day of the week.  People who have lived in this town for generations in some cases, whereas others may have just moved here, in either case we all share one common thing.  We all love this place.   We love the fact that we have a single post office, where you are usually greeted by “the man with the deepest voice in the world” at least that is what my children refer to him as.  We also all love the volunteer fire department that still hosts the greatest hot air balloon festival this town or Connecticut has ever known each summer at Norton park.  We are a town that still only has one high school and one middle school and one police station.  We are a town of “townies” where people old and young seem to know just about everyone in this town, or know someone who knows everyone.   People who move here, seem to stay here for most of their lives.  As is evident by my very own neighborhood, only one house on my entire street as ever gone up for sale in the 17 years that I have lived here.    We really are the Hotel California but in this case no one wants to leave.

As a local business owner/consultant my plan has always been to focus my efforts on “the little” guy or the local business, mom and pop shop and this is still true, because as I look around my little town, I see a lot of generations of families struggling to recover in this tough economic time.  I wrote a post a while back called “save the little guy”, well it’s true, we all need to do our part to save the little guy, but it really goes beyond that.  We need to save the community as well.  Towns around America are built by the families that live in it.  And in this case the town we live in has many businesses that are family owned and run by families that still live right here in this town.  So as a local “townie” I want to do my part and support my local businesses by promoting them whether they are clients of mine or not.  See it’s not all about “making a sale” for me.  Right now, I would much rather see a business stay open and be successful than to close its doors.  And if I can help them using social media through, guidance, training, or even doing it for them for a while then so be it.  To me, we all come out ahead if we can keep our community running strong and our businesses doors open for business.

As I always say – shop locally, stay local and support your community businesses as they are what keep our economy rolling.

Breakthroughs

Usually this word would be a good thing right? Well, after tonight, not in our lives apparently. It appears as if Mary is having breakthrough seizures now which means they are now happening for no apparent reason at all, as opposed to before, when she was sick or had a fever. Today’s makes 3 unexplained in the past few weeks. This is bad on so many levels but the main one is that her current meds are no longer doing the job so now we need to find a new mix of meds that work. Here’s the “kicker”, this could mean months of trial and error of getting the right mix of meds. All the while she is sort of stuck in limbo as a human test case having more and more seizures until they get it right.

Excuse my ENGLISH here but THIS FREAKIN’ SUCKS……

Okay….ranting and raving is over – back to an all night vigil of watching Mary sleep to make sure she doesn’t have any more seizures tonight.

And a partridge in a pear tree….my overrun world

Okay something has to give here – my life has suddenly become consumed with the caring of all things living but this time in a virtual world…..it’s bad enough we have two live fish tanks with around 25 fish, two hamsters, a lizard, two dogs and 3 aquatic frogs. Now I have a virtual world of pets to feed as well. There is Talking Gina on the IPAD, if you don’t feed her or talk to her daily she gets sad, if you accidentally tap her in the head she gets sad too and you lose points (tap tap tap tap tap tap tap tap – take that Gina……ooops we are down to 47.3% now). Oh yeah we have 7 tanks with 50 fish in each in Tap Fish 2 now on the IPAD. They need to be cleaned, loved, feed, and bred in order to win “valuable” prizes to add to your tanks. Oh did I mention that we also have an IPOD touch that also has 7 or 8 tanks of fish as well that need the same thing. And if you don’t feed them for 48 hours they die.

So, what do I do each night before I go to sleep – yep you guessed it. I feed, or care for countless virtual animals, so they won’t die (ahh the power I have)

I swore if one more pet came into our house I was moving to Key West – somehow I think they found a loophole, either that or I just found a really good excuse….. HA HA HA….(who am I kidding I’m more addicted to the IPAD and the games than anyone)……”Gina, Ben, and the Talking Parrot it’s time for your nightly beating….I mean feeding…..” 😉

Life hits you

Sometimes you wake up and life smacks you right in the face.  Today I woke up another year older and I had this pessimistic attitude wondering just how many people would forget my “special” day.   See a few months ago I decided to take my birthday off of Facebook for several reasons which I won’t get into here, but other than my family, no one really knew it was my birthday. 

Poor me – who was going to remember my day?  After all I remember everyones birthday.   Well, I do, usually around a month after they happen because even with a Facebook reminder I still get wrapped up in life and just forget, despite my best intentions. 

Well, my day started with a beautiful serenade by my 3 daughters singing to me this morning.  Priceless.  Followed by repeated Happy Birthdays from Mary Rose and Annie who seemed to be stuck on the phrase for a good half hour. 

Families are great for this.  Making your day great….but what about everyone else.  Well as the day went on I realized that I have some really good people in my life. 

A call from a childhood friend, someone who has always been there for me, even though I have not done the same for him over the years.

A message from someone I grew up with, another family and childhood friend, again someone I lost touch with.

A family friend who is more like a relative than a friend…she knows who she is.

An old friend from the past who never went away despite the time and separate paths that we have gone down over the years….how he even remembered amazes me

The daughter of an old friend who has passed on.  I was lucky enough to share my birthday with him, work with him and be his friend.

Some others as well from my past, my present as well as my own family.

I guess my point is that I was looking for the negative and instead got the positive…..yet my motto to others is to always look at the positive…. I seem to have forgotten my own advice.

I said earlier that I remember everyones birthday.  I do, or at least have intentions to.  I also have intentions to be a better friend to everyone as well….

Call this a New Years resolution of sorts…..but it’s time to start being a better me towards my true friends because believe it or not I seem to have a lot of them right under my nose.

Life’s Journey

Sheila and I have a saying that we are never given more than we can handle in life and it is something that I live by, or at least try to live by no matter how hard life may seem.   Everything in life happens for a reason and with love, a little bit hope and patience it will all work out.  I am a firm believer that life will work things out in the end,  even though it may be a bumpy ride along the way.  Tonight, I was thinking of Mary’s theme song – Natalie Merchant’s Wonder, which was written for children who are disabled, and how they overcame their “disability” and “make their way”.  I think the lyrics below apply to more than just children who are disabled.  If you think about it, this really could apply to life itself.  “With love, with patience, with faith “you’ll make your way”….  

I know it’s a stretch but if you look at life through the eyes of a child sometimes every “boo-boo” can really be fixed with a hug……and why not a song.

“Wonder”

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing

They say I must be one of the wonders
Of god’s own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god’s own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

People see me
I’m a challenge to your balance
I’m over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god’s own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

Original Lyrics written by Natalie Merchant 1995 (Tigerlilly)

Is there an instruction manual for this….

I am sure every parent will appreciate this. And anyone thinking of having or expecting a child soon you should read this as well.  It was a hot June day, the sun was shining bright and I was putting the finishing touches on a white bookshelf that was to go into our soon to be newborns room. I remember thinking how cool it was that I was home from work and how I was able to enjoy the day before my wife and I went to her checkup at the doctors office, this would be her last checkup before the baby would arrive, so we both decided to go. The time came, and we headed up to the doctors office for the appointment. At the end of the visit when we sat down to talk with the doctor, he picked up the phone and said I have someone coming up, she should be there soon. He hung up and said, “you need to go to the hospital now it’s time”. We sort of looked at each other and said “WHAT????? What do you mean now, the baby isn’t due for another week, we aren’t ready (in my head I was saying, come on it’s a perfect day outside can’t this wait a bit)…we left the TV on at home, we didn’t bring our travel bags”.  After some explaining, and understanding we decided that the doctor was right and we drove up to the hospital, it was a Monday afternoon and IT WAS TIME.

After my wife got settled in the hospital I went home (scratch that FLEW HOME AS FAST AS I POSSIBLY COULD) to get our bags, shut the TV off, put the car seat in our car and get anything else we would need because after all IT WAS TIME.


While I was home the phone rang and I nearly lost my lunch…. It was my wife saying it was going to be a while and told me not to rush, she also reminded me to stop at the police station to get the car seat checked to make sure it was installed right in the car. Phew….what a relief….this gives me a few moments to breathe (future dads use this time wisely). With my new found time I took a quick shower and decided I would shave, after all I wanted to look good for my new baby I guess. Well shaving and being nervous does not work well, yep, you guessed it, I put a nice slice right in my left cheek. I am such a dork. After the bleeding stopped, nearly a box of tissues later, and I was all packed with the car seat secured, I headed out for the police station in town, because they would make sure that I installed the car seat correctly (um, keep in mind the title of this post). I park at the station and walk up to the building and there are two doors. One is the public public entrance and another door has a huge sign on it that says PLEASE SECURE YOUR GUNS. Yep, you guessed it again, I went into the door with the big sign about guns which just happened to be the entrance for police officers only. Here I stand with a huge slash on my face, I am nervous to begin with, in the wrong door, with four already nerved up cops looking at me as I ask for help in securing my baby seat in my car. Several weird looks and nervous glances later I left the building unharmed but slightly humiliated and headed for the hospital. It was now Monday around 5pm the baby must be coming soon.

Forgot to mention that my wife was induced around 1pm on Monday (new dads keep note if this). Speaking of the dads here. A word of advice. Your wife can’t eat when she is in the hospital, at this point, so it is my strong suggestion to you, to keep a roll of LIFE SAVERS in your pocket for her. Trust me this roll of LIFE SAVERS could be a literal term for you and her….  The next 24 hours are sort of a blur and yes you are reading that right 24 hours. My wife and I just smile now when first time parents who are going in and are being induced say “oh this will be quick”. Trust me, it’s not. It is now 8pm Tuesday night and the Scrubs TV marathon is on (still one of the best shows around in my opinion at the time). We are watching and laughing and not quite sure how our world is about to change forever.  This will be our last hour of LBC. LIFE BEFORE CHILDREN that we will ever know. Around 9:15 or so the doctor comes in and finally says “it’s time to have this baby” (this time he meant it because he was, oddly enough, wearing SCRUBS…the irony). At 9:38pm two lives changed forever, as we both got to meet our new baby daughter. Within a few minutes they brought her over to us and there she lay in moms arms looking back at us, eyes wide open, and I swear she had an expression of “hey so you are the faces behind all those bedtime stories that were read to me”. (We would read stories at night to her before she was born, okay we are both dorks) And for us, it was like looking into the eyes of every family member both past and present that we ever knew. Trust me, one of the best feelings in life you will ever know.  How this the little 4 pound 11 ounce sack of sugar could change our entire lives the moment we met her is unimaginable, but from that moment on, nothing will ever be the same and it was wonderful.  After a few minutes one of the nurses asks me if I would like to hold her, and quickly handed her over to me all wrapped up in a blanket. (Soon to be dads, please take note that you should sit down for this, because the world of emotion that will come over you will be too much to bear the first time you hold your newborn in your arms).  Despite being a bit nervous and feeling like I would drop her, let’s just say, she fit just right, she knew she was safe.

It is now 2am and everyone is tired and in a few short days we will be going home to start a new life as a family of three.  The next few days seem to be filled with visitors followed by training followed by visitors followed by more training followed by every doctor visit in the world.  I guess when you have a newborn they need to make sure that you know how to change a diaper,  feed the baby, and even how to wrap them in a blanket.  Well, I guess we passed the test because before we knew it we were making our way out of the hospital toward our car. Holding our baby, carrying our bags, some flowers, gifts, and two huge smiles, we must have looked like the proudest people on earth, and let me tell you, we were.

After I secured our little person in the back (in our police certified, nearly arrested for it, car seat) my wife and I sat there in front of the hospital for a few moments before we drove off in our car and both had the same thought. “They are going to let us keep her, can you believe that we get to go home with her”. We were amazed at the fact that we were actually parents. The ride home seemed like we were floating on air, full of excitement, nerves, sleepless energy, whatever the case, we got home and became a family of three. We left as a couple, and came home as a family. A husband and a wife, now a mom and a dad. When we got home we introduced our new little one to our dog who basically licked her on her forehead and walked away, as if to say, you touch my food kid and your out. Then we brought her up to her crib and laid her down in it for the first time. The crib seemed so big compared to her little body. All was peaceful, all was quiet, and to this day it is one of the most relaxed I have ever been. A couple of hours had passed and she was due for her first feeding and changing. I swear, all that training at the hospital went right out the window, we sort of looked at each other and wondered what to do, and here we are nine years later and I am still searching for that instruction manual…..maybe, someday I’ll find it….until then we’re winging it.

Crazy life….

What a year it has been. I want a redo. Between Mary getting sick with a weird case of tetany that is still unexplainable to the tummy bug that has gotten two of us so far, this year has just been one hot mess. Then tonight Mary out of the blue had a couple of seizures, not sure if they are because her meds are off or if she is getting sick again. Then add to that my left arm feels like it is going to fall off, tennis elbow from he$$ and then my right shoulder which has always been a thorn in my side is acting up again…..and I am getting old….the grey hair monster has hit me and I am just plain old crabby…. Okay maybe not crabby but I want a redo for 2012….a new start. Who’s with me…..

This isn’t Kansas anymore……

Welcome to my official blog of my life – this is where I will rant, rave, laugh, sometimes cry and for the most part just speak from the heart about me, my experiences and my journey on this wonderful ride we call LIFE.  So join me as I begin typing madly into the ether for all to see……ENJOY! 

Mary Rose Faith DiMinno Memorial Sundial Plainville Connecticut

It took nearly two years of committee work, presentations, planning and patience to be able to honor the memory of Mary Rose as we are going to do on August 20, 2017 at 1:00pm. We are so thankful, that we were granted permission to place this beautiful tribute to our daughter at the former site of her old elementary school. As everyone knows Mary Rose loved school. She loved her teachers, her friends and she especially loved singing. On any given day Mary could be heard singing joyfully, as only Mary could, throughout the halls of the school. Whether it was her own version of the ICarly theme song, or making up words to Hannah Montana songs, Mary loved to sing. We also remember Mary Rose singing at home or in the car, as she sang “me, me, me” to her favorite song “You Belong with Me” by Taylor Swift or “Baby, Baby Baby Oh” to Justin Bieber. Of course, who could forget her love of “Big Time Rush” or “One Direction”. So many people remember Mary Rose and how she made everyone she came in contact with, laugh, or smile. Her personality was so infectious. Thoughts of Mary are still in the hearts of so many people, we are often told how someone was “just thinking of Mary Rose the other day” or remembering her laugh. As a tribute to how Mary lived her life and how she touched the lives of so many people we are honored to be able to unveil the sundial that will forever memorialize our beloved daughter and sister, Mary Rose Faith DiMinno who passed away January 4, 2013 at the early age of 8.

The armillary sundial was built by world renowned artist David Harber of England. David, who has been recognized with many honors and awards including the Queens Award for International Trade, has been building custom built pieces for people and places throughout the world for over 20 years. The armillary sundial purchased by the family was donated to the town of Plainville, CT and has been built to the exact specifications of the DiMinno Family including all of the engravings which adorn the piece. This working timepiece was specially calibrated to its location using the Longitude and Latitude coordinates. The sundial is made out of marine grade stainless steel and has been polished to a mirror like appearance.

Engravings – below are some of the engravings that were chosen, each one holds a special place in the hearts of anyone who knew Mary Rose.

Some of her favorite TV shows and where they took place.

Special sayings that describe Mary and how she lived her life by laughing, loving and making others smile.

Each year on Mary’s birthday the shadow will cross this date in remembrance of Mary Rose.

We would like to thank the following people for all of their help in making this memorial sundial a reality for everyone to enjoy and share.

• Old Linden Street School Site Committee, especially Janice Eisenhauer for her vision and guidance.
• Robert Lee – Town Manager of Plainville, for his patience and understanding.
• The Plainville Town Council who approved the creation of the sundial and it’s permanent location.
• Steve Busel, for his help each time we visited the site and his expertise.
• David Valentine of Valentine Construction for his help in installing the granite pedestal.
• Raymond Roux from Connecticut Solid Surface for his help in attaching the sundial to the granite pedestal.
• Fred West Photography
• The Plainville Historical Society for hosting the reception after the unveiling.
• David Harber, the artist and his team who made this vision a true piece of art and who were there for us each and every step of the way.
• To the hundreds of people who sent well wishes to us as we created this memorial.
• And finally Our Family, for their support, love and inspiration.

Thank you all from the bottom of our hearts.

Kevin, Sheila, Grace and Annie DiMinno

 

To visit the site click here: Mary Rose Faith Memorial Sundial

Photos added August 21, 2017

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Pokemon Go – the Hidden Dangers

Watch your children for predators and also your data plan! Attention parents, friends, and fellow players. POKÉMON GO is a crazy new game that sets people out in search of collectible Pokémon. There are locations everywhere. The idea is to get people to get out of the house and get them searching their surroundings. Landmarks, churches, parks, statues. Pretty much a giant exploration game. Here is where the problem lies. We took a bunch of my daughters friends out last night and drove them around town. Everywhere we went we saw people walking around the areas with their cell phones out, all in search of Pokémon. By the end of the night nearly everyone in the car started to get warnings about data usage not to mention an extreme drain on their batteries. Being a bit of a computer geek myself, I came home and searched the web and it turns out that this game uses a tremendous amount of data. Somewhere in the area of 2 to 8 megabytes per hour. Here is a link showing how to lower your data usage from the game maker.  10 Best Ways to Reduce Usage . So to me this is a huge problem as extra data charges will certainly apply especially with younger people who do not understand that extra data means extra money coming out of their parents pockets. The concept of the game is great because it gets people out exploring their surroundings and seeing places in their own town that they may have never visited or noticed. However, after last night’s experience, you could see a whole bunch of people walking around aimlessly with their heads buried in their cell phones as they search for these items. It was oddly strange to see so many people out last night just walking around. But we must be aware of the huge amount of data that is going to be used and should keep an eye on our plans as the popularity of this game grows.

The biggest concern however is safety. There have been reports coming in from all over the country of people being robbed, attacked and possibly even assaulted while playing this game.  A predator of children or just about anyone can easily stalk out the various locations found on this game.  I can’t tell you how many sites we visited last night where young people were by themselves just after dusk.  Many sites are warning people of the dangers of this game such as http://www.ibtimes.com/pokemon-go-safe-app-brings-unexpected-reality-robbery-injury-death-2390453 or http://www.nbcphiladelphia.com/news/tech/Pokemon-Go-App-Craze-Comes-to-Philadelphia-386218321.html but much more can be done.  Like it or hate it Pokémon Go is here. As parents, or even as friends we need to keep our eyes open and pay attention to where our loved ones are not to mention your cell phone bill.  For my family, this game will always be played under adult supervision and a careful eye on our phone bill.

 

 

A group on Flickr remembering Mary Rose

This is a group I created on Flickr – feel free to share any comments, posts or pics of Mary Rose Faith.

Flickr Grouphttps://flic.kr/g/jSaAQ

 

 

Random pictures

A Special Thank You to the Montana Family for Honoring the Memory of Our Daughter

To the Montana family – we would like to extend our sincere gratitude and appreciation for allowing us to be a part of this wonderful cause. After seeing the amount of work and effort that you and everyone else put in, we are truly honored to be a part of this tournament. You can count on us for help now and in all future years. We are so blessed that you honored our Mary Rose in such a way. Her work here on earth was to make others smile and have the strength and courage to handle any situation no matter how difficult. She made us laugh even in her darkest days. Now that she has left us that work continues through her spirit.

We have mentioned this before but the outpouring of generosity, kindness and support from everyone has been overwhelming regarding the loss of Mary Rose. It still amazes us how many people she touched and continues to touch today. Words can not describe the emotions we feel, the thanks that we give to everyone. “Thank you” isn’t quite enough when it comes to how we really feel. From the countless cards that we still receive today, to the messages of kindness or simply someone saying “we are thinking of you” means so much. But it doesn’t stop there – the memory of Mary is being kept alive by so many people, not just through words but also actions, this is astounding and very heartfelt by all of us. Peter, what you and your family did as well as everyone who participated in the event in any way at all is remarkable.

Sometimes the words “thank you” are never enough to express how we feel, but just know that every action by all of you is beyond appreciated and loved.

If you would like information as to how to donate to the Memorial Golf Outing or help out for future events please contact me directly, I will provide you with the contact info for the organizer of the event.   All proceeds from the 2015 Golf Tournament go directly to St. Jude Children’s Research Medical Hospital in the name of Mary Rose Faith DiMinno.

Kevin, Sheila, Grace and Annie DiMinno
Read the story of Mary Rose here:
https://kevindiminno.wordpress.com/2013/06/01/the-story-of-mary-rose/

It’s the Silence That Hurts the Most

Images flash through your mind, in an instant you are right there reliving a time from your past.  The images, the sounds, the feeling of helplessness, the pain, the sense of loss, are all right there at the surface. Time itself seems to stand still and every second runs through your mind as if it was happening at that very moment. You feel as if you can’t breathe as the memories flood your mind. Your heart races, your muscles become tense and your surroundings seem to almost fade.   At times the tears begin to well up, other times they just flow, while other times you are able to focus on something else and bring your mind back to a better place.

For many of you, I am sure this occurrence has happened at least once in your life.  No matter what the memory is from the past, there are instances when you find yourself reliving a moment or series of moments from a traumatic time in your life.  Whether the event involved you directly or you were witnessing the event, no matter what, you are reliving something in your mind.

There are thousands of events in your life, yet it is these tragic moments that seem to stick out at times. Each person has their own memories, their own tragic events, their own horror that they have to relive as the memory takes over their mind.  For some, the past memories could be the loss of a beloved pet as you watched them in their final moments. While others it could be a car accident, where you can still hear the crunching of the metal, or the window shattering. There are literally thousands if not millions of memories that could come to the surface.  Other examples could be a fire, a theft, an attack or anything that you either witnessed or were directly involved in. It could even involve witnessing something in the news such as the events of 9/11, or the shootings in Newtown, or any other event, as you watched them unfold on TV.   No matter what the memory is, you find yourself right there back in that moment even if it is for a very short period of time.

For me it is the silence within my mind……that moment when I turn the TV off and roll over to go to sleep.   Those few seconds of silence are what hurts the most.  That is when I see the images which are haunting, they are etched into my brain with every little detail included.  The sounds are haunting as well, the struggle, the fight, the person suffering in front of my very eyes.  It is in those few seconds, before sleep comes, that I relive this nearly every night. In addition to the silence, at times, I find my mind drifting when I am doing menial tasks like mowing the lawn, watering the garden, driving home or even seeing an ambulance.  The thoughts can come at pretty much any time.  

There are other incidents that occurred just after this tragic event and believe it or not, those don’t haunt me nearly as much.  There are memories of a crowded hallway and the sounds of the events that played out.  There is even witnessing the most tragic event of having someone lose their life in your arms.  For me, they were almost peaceful.  There were a lot of tears, a lot of prayers and a lot of love in that time but I was not alone.  By my side, during those most tragic events, was my wife, who has the strength of a thousand bulls and a heart of million angels. With her by my side, we were a team, we were there for each other, we held each other up, we were surrounded by LOVE and LIGHT and this still remains so today.  

There are other things that really stick out in my mind that haunt me but those only come during my lowest of times  The ones that seem to come to the surface the most are the reactions of people to the news of a death of a loved one.  I can still hear my father’s voice over the phone after hearing the news.   His voice, his reaction, his raw emotion still rings in my ears. I also hear my daughter Grace, hers is probably the most vivid but again during both of these times and so many others I had my wife by my side.

I think we all have memories of events and like I said before everyone reacts or handles these things very differently.  For me, I immerse myself in keeping busy.   Whether it’s working, playing, writing or going on adventures in life, I keep my mind occupied and try to live as normal a life as possible.

Like I said it is the silence that hurts the most.

      

Summer 2014

To be continued……..

The guilt, the freedom, the happiness, and the mixed emotions

Since the passing of Mary Rose, life has certainly taken a lot of turns with many ups, downs, new experiences, a new normal, among many other changes. I am continuing to notice tremendous guilt over the sense of freedom that we have now, freedoms that we never really understood were gone until they came back into our lives. For example the freedom to go on vacation, or a friends house or a party or a whole host of other things that we really couldn’t do before.  Granted most of these are great times that we share with our family and friends and are new experiences that we cherish every day. But then the dreaded guilt comes in, as well as the sadness, because with all of these new freedoms we are reminded of the great loss that we all had.   Life is so busy and running so fast that we hardly have time to breathe, between real estate taking over my life, softball which seems to take on a whole life of its own, to just trying to keep up in the yard, everything in life has changed. The underlying guilt over everything is overwhelming at times. It seems in the past we were so busy worrying, or taking care of, or stressing, or sheltering, whatever you may call it, that we never really had time to do all of these other things that we can now.  The guilt and happiness over the new freedoms, it’s like a tug of war between your heart and your mind.  Trust me I would go back to the way things were before in a heartbeat, if we could, but that is not reality.

The times of guilt are there, but it is the times of silence and times of being alone that are probably the hardest to keep out of my mind. I think one of the main reasons we keep ourselves so busy is so we don’t have to experience those “alone times” or “moments of silence”.  It is during these times that the guilt is taken over by the horror of the events leading to Mary’s passing.  I still literally say out loud the word “no” everytime I see those images pop into my mind or hear those sounds. It is during these times when the horror overwhelms you in such a way that you really can’t think of anything else. I know for me, I keep myself busy doing all sorts of things just so I don’t have to think about those terrible things.   I have even gone so far as to become slightly addicted to the game “Disney Infinity” where you can create worlds of your own.  I find myself up sometimes at one in the morning still building these imaginary places just to keep my mind occupied. But then just before I go to sleep at night the silence comes in and the pictures come back into my mind. I hate those times.  Thankfully, I have been able to go to a happy place in my mind where I get a huge hug from our angel above. I find myself going to that happy place more and more these days. But I am thankful that I have all of the good memories to cherish as well as all of the good times and new experiences we are having now.

So everyday is a new day and we remember the good times of the past, enjoy the good times of today and look forward to the good times of tomorrow. Eventually the guilt will fade.  Eventually the silence will no longer be taken over by snapshots in time. Eventually, life will continue to run its course as it does for everyone.

Live life to its fullest, enjoy every moment that you can, no matter how small and most of all…smile.

A few pics of Mary Rose posted on Tumblr

http://kevindrealtor.tumblr.com/post/77033468468/missing-our-mary-rose-a-little-more-each-day

Good bye 2013

What a roller coaster year it has been.  2013 has been one heck of a year for so many people that I think it is fair to say that we are all looking forward to 2014. There has been so much heartache this year and it has involved so many people, whether it be from family, loved ones, friends, neighbors, a family pet, a co-worker and people we don’t even know that it is almost impossible to comprehend and wrap our hands around it.  Everywhere we look it seems as though bad news is around the corner. We have all had to mourn the loss of a loved one this year in one way or another. Death brings on so many feelings such as sadness, heartache, loss, emptiness, anger, loneliness, disparity and even in some cases relief.  Relief is one of the hardest feelings to overcome because with relief you also feel guilt.  And that guilt eats away at you all of the time, in all aspects of your life.  Relief is often not talked about when it comes to death because it brings with it so many negative feelings and thoughts.  For some, relief can come in many ways, such as when you know that your loved one no longer has to suffer at the hands of whatever fate has brought them, they no longer have to endure the pain of whatever it is that they are dealing with.  They are no longer tied to this earth in an unhappy or unpleasant way.  Relief and guilt are really tied hand in hand, and they both revolve around you when it comes to death.  You feel guilty for being relieved, you feel guilty for thinking such thoughts, you feel guilty because, perhaps, you “think” you could have done more.  Maybe if you had just done something different, the outcome might have changed.  You feel guilty that you have so much “free time” all of a sudden or maybe you feel guilty because you wished it could have been you instead of them.   Whatever it is that you are feeling when it comes to death there are no wrong answers.  Emotions run different for everyone and we all handle death in our own way.

As the last few days and hours of 2013 ring on, the memories of the past year are quickly flying by.   This time of year is especially hard on us because it was right around this time last year that Mary ended up in the hospital for the last time.  2012 ended bad and 2013 started off even worse.   Through it all there has been so much sadness with so many people that we know that the hours can’t go by fast enough. However, on the other hand 2013 has had it’s fair share of happiness.  We have seen and experienced a lot of joy throughout this year as have many other people that we know.  The joy of a new baby for many of our friends, the joy of a first Christmas for them, the joy of a new pet, the joy of a new friend, a new house, a new beginning for so many people that we know.  The joy of going to Disney World with our family for the first time.  The joy of truly being surrounded by love by so many people.  For many 2013 was truly a joyous year and that should be celebrated.   But, in the end, at least in my opinion, I can’t wait for a new start, and a new beginning in 2014.

Happy New Year everyone and may you find happiness, comfort and joy in your life.

Life and Death and the planning that goes on….

Everyone has to plan for things during the course of their lives, Planning is part of life itself and encompasses nearly every aspect of it.   Whether it be planning for a vacation, a trip to the grocery store, planning on having a baby, a career, or even simple things like planning to paint a room in your house, planning is everywhere. We plan visits with friends and relatives, we plan our day, we even plan on what we are going to wear.  Some even plan on what they are going to eat for dinner for the week.

For the past few weeks I have been planning on writing in this blog but couldn’t really nail down my topic.  I had plans of writing about how time flies and how every second in life is so important. I had other plans of writing about life itself and how things go right for some and bad for others.   I had plans for a lot of things, none of which got done.   See, we all have plans in life, big or small, wanted or not we have to plan for things.  Some will say that they do not plan anything and literally live in a world of spontaneous impulses, but I can guarantee that there is some aspect of their life that they plan, even if it is a plan to be happy or a plan to be spontaneous, lose weight, be a better person, live life itself, _____________________ (you fill in the blank that applies to you.)  Bottom line is that everyone has plans in life.

Today is one of those days that I have to plan for something that I do not want to think about.  The mere thought of this plan nearly makes me sick.  This is a plan that must be done yet I am so scared to do it.  This is a plan that I have no control over no matter how hard I try or pray.  No matter what, this plan will come to fruition one day.   The plan that I fear the most is the planning for death itself.  Depending on your age, death is most likely not one of your top thoughts throughout the day, especially when it comes to thinking about your own death and mortality itself.   We have all had to deal with death in our lives, whether it be regarding the deaths of family members, friends. co-workers, neighbors or just someone we know. However, when it comes to dealing with our own death that is a different story.  At least in my opinion, it is something I do not like to think about.

When preparing for your own death or in our case planning for our funeral, all of the fears, anxiety, dread and emotions hit you all at once.  Today,  my wife and I purchased a cemetery plot for ourselves.  The plot is located at the same place where our Mary Rose is buried along with her grand parents and uncle which is very comforting, yet at the same time awfully scary. Having to face or deal with death at any age is very hard as I am sure you all know.   Having to deal with your own death some day brings a daunting feeling and a constant reminder that our time here on earth is limited.

Life is short – get out there and enjoy every last breath.  Soak up the sun, live your life to the fullest, make lemonade when you are handed lemons in life.  Live, Love, Hope, Pray and most of all enjoy this short time we all have here on this earth.   I hope that this plot will not be needed for at least another 100 years……..well one can hope right?

Kevin DIMinno

Read my other blog entries such as:

https://kevindiminno.wordpress.com/

https://kevindiminno.wordpress.com/2013/09/02/the-end-of-the-beginning-or-is-it-the-beginning-of-the-end/

https://kevindiminno.wordpress.com/2013/06/27/when-words-arent-enough/

The End of the Beginning or is it the Beginning of the End :-)

Tomorrow is the day that most of us send our children off to school.  The end of the summer and the beginning of a new year.  So many changes, emotions, and things to do and remember.   Many parents will feel a sense of freedom, thinking “finally they are going back to school and now I get my house back”.  While still others will be sad to see their little ones off to school, whether it is the first day of kindergarten or the first day of high school, all of the “babies” of these parents will be leaving for school, getting on that scary bus and being away from home (even if it is only for a few hours).

Okay, so you can tell, just from my writing, that I am one of those parents who hate to see them go.  After all, they are so young and innocent and now they are going somewhere that we as parents, do not have any real control.  We have to trust that everything we taught them will stay in their heads.  Don’t do drugs, don’t go off with strangers, never take “medicine” that someone is offering you, no fighting, no bullying, be respectful, BE SAFE  etc etc etc.

A good friend of mine who is no longer with us, told me once that he disliked sending his kids to school because he and his wife had to undo all of the “stuff” the school did to them during the year.  (No I am not bashing teachers or schools or anything like that, believe me I respect teachers).  My friend, was basically saying that we teach our children right from wrong, good from evil etc.  And then they go to school and they lose some of that innocence, some of that freedom, some of that care free life.  They are slowly becoming adults.

Yes, tomorrow we will send our kids off to school and they will be influenced by thousands of outside factors.  They will meet new people, see old friends, laugh, cry, bite their finger nails, be nervous – you name it. The world of emotions will surround them.  Just as the world of emotions from being a parent will be present as well. Some of us will laugh, cry, be nervous and yes, even some will bite their fingernails.

This is the new beginning, a new journey, a new adventure.  No matter what emotion you or your child may feel tomorrow, do me a favor and embrace it.  We are all very lucky that we get to feel these emotions and be a part of this LIFE.

The Beginning of the End, or is it the End of the Beginning…

 

 

Read more of my posts like:

https://kevindiminno.wordpress.com/2013/06/01/the-story-of-mary-rose/

https://kevindiminno.wordpress.com/2013/06/01/missing-you/

https://kevindiminno.wordpress.com/2013/06/27/when-words-arent-enough/

https://kevindiminno.wordpress.com/2013/05/31/routines-in-life-and-how-they-change/

 

Transitions and Stress

Life is full of changes, experiences, adventures, emotions, and so much more.  Even the most boring, mundane or monotonous day involves many, if not all, of life’s experiences.  Whether small, large or even unnoticed, life is full of just that….LIFE. Lately, our family is in the midst of transitions in life.  These transitions encompass so many facets of our lives that it is nearly impossible to keep track of them all. Whether it is the move to middle school of our oldest child, or the beginning of a new career, or starting a new year teaching at school to the start of pre-school for our youngest child, literally every aspect of our life is changing in some way.

There are so many transitions that we must now get used to and they all seem to be happening at the same time.  Life is busy that is for sure. Like any other family we are all moving through life, with it’s ups and downs, happiness, joy and sadness.  We are all going through this process together.  Our immediate family unit of four along with our beautiful angel in heaven are literally one single unit, and we are all there for each other. We’re all in this together (now singing the high school musical theme.). Good, bad, dark, light, we are all family no matter what, and we should all stick together.

Just a quick thank you!

Just wanted to say thank you to anyone who has read my blog in the last few months.  Today the blog hit 6200 views.  Thanks again for your support, comfort, and caring words.

Next goal is 10k views so share share share this link http://kevindiminno.WordPress.com
Thanks again

Kevin

Time

When words aren’t enough….

It has been a roller coaster of emotion the past few months for all of us.  Life is flying by so fast now that we hardly have a moment to reflect on everything.  Between our oldest daughter Grace leaving Elementary School this summer and moving on to Middle School this coming fall, to Annie who will be starting preschool this fall, not to mention the loss of our daughter Mary Rose, this has been one heck of a ride.

On June 26th we went to Grace’s school and watched the slide show that included pictures of the fifth grade class starting when they were in kindergarten all the way up to today,  Our “little babies” are turning into young adults and starting a new chapter in their lives. Not to mention all of the other children at the school who will also begin a new chapter.  We saw lots of happy faces over the years.  Lots of happy, young, innocent faces all enjoying life. The emotion of watching the slide show not to mention the music they played to go along with the slides didn’t leave too many dry eyes in the house.  Mental note – bring tissues if you ever go to one of these for your kids. The greatest sense of pride came over many of us as we watched the lives of our children pass before us in a myriad of events, achievements, and good times.  We are so grateful for the experiences that all of the children had at the elementary school, each experience helped shape their lives for the future.  This summer will certainly be a season of change for many of them as well, as they grow and change into young adults and begin to find out who they are as a person, what will define them and perhaps lead them to a future career or interest.

Mere thank yous are not enough when we think of the gratitude that we have towards the school system of Plainville.  They have nurtured our children, guided them and hopefully prepared them for the future.   A future filled with happiness, joy, wonder and peace. On the emotional side it is hard to see them moving forward into the unknown, hard to watch them grow up so fast, yet with all of this there is a great sense of happiness, pride and love that we all feel towards them.

As one child leaves elementary school we have another who will start her career as a student this coming fall in preschool.  The fear of the unknown is daunting, after all, this is our youngest child and she is about to embark on a new chapter in her life.  New friends, new rules, new expectations and new experiences all of which will shape her as she starts her ascent to being a young adult.  She seems so young right now and the urge to keep her under our wing forever is a constant thought.  If only we really could put a “book on her head” to keep her small forever. She has so much to learn and experience, so many new life events, memories to create and fears to overcome.  After all she is our “littlest baby” and she too is growing and changing.  As we sat there at the slide show for Grace, my wife and I held hands, we both smiled, cried, were heart broken, were happy, were proud, scared and even sad, all at the same time.  Our oldest was growing up and moving on, our youngest was at the beginning of a new journey and our middle child was up in heaven looking over all of us.  We are truly blessed and still remain thankful for all of the gifts we receive as was written in a previous entry here – . (https://kevindiminno.wordpress.com/2013/01/08/nothing-more-than-you-can-handle-the-gifts-we-receive/).

We have mentioned this before but the outpouring of generosity, kindness and support from everyone has been overwhelming regarding the loss of Mary Rose.  It still amazes us how many people she touched and continues to touch today.  Words can not describe the emotions we feel, the thanks that we give to everyone.  “Thank you” isn’t quite enough when it comes to how we really feel.  From the countless cards that we still receive today, to the messages of kindness or simply someone saying “we are thinking of you” means so much.  But it doesn’t stop there – the memory of Mary is being kept alive by so many people, not just through words but also actions, this is astounding and very heartfelt by all of us.

I know I said the words “thank you” are never enough to express how we feel, but just know that every action by all of you is beyond appreciated and loved. The following are just a small sample of the wonderful things people have done in memory of Mary.

Thank you – to the New Britain school system that gives out a scholarship in Mary’s name each year to a former Lincoln School alum who is graduating high school and is going to college preferably in the field of education or special ed.

Thank you – to our wonderful neighborhood that gave us a beautiful tree in memory of Mary that will bloom each spring with beautiful pink flowers.  The tree has been planted in our front yard so everyone who see’s it will remember Mary.

Thank you – to Mary’s school who honored her with a page in the year book and who will give an award each year to a second grader who excels in music.  The recipient will receive a recorder instrument and a copy of a music CD.  The recipient this year is one of Mary’s best friends name Paige.

Thank you – to the Huntington Lighthouse in NY who is engraving a piece of granite that will forever be a part of the lighthouse, bearing Mary’s name

Thank you – to the people who continue to leave flowers, gifts and mementos at Mary’s grave. 

Thank you – to everyone, for the love, support and kindness that is given and showed to all of us.

Thank you isn’t enough nor are there words to describe how we feel during this roller coaster of emotion.

We are all having a very difficult and hard time this year but the kindness, love and support that is shown to us, for all aspects of our lives is literally beyond words…….

Flickr pics

Flickr pics

Images of Mary Rose (Flickr)

Images of Mary Rose (Flickr)

Hello everyone – here is the link to many of the pictures we have of Mary on Flickr