It’s been a while

It’s been a while but truth be told, I kind of forgot about this blog for a while and when I did remember and wanted to write, well, life got in the way. I think I need to get back to writing to get rid of the angst (anger) I still deal with on a daily basis.

Catch up  time (to the best of my ability)

The last 4 years have been trying to say the least. When Michael died (coming up on 8 years in 2 days), it took over 15 months for the doctors to figure out what was wrong with me. It seems I have an auto immune disease called Mast Cell Activation Disease. I am on more meds than I can even mention, liquid meds as well as capsules. I now see a specialist in Boston every 6 months (I graduated from every 3 months to 6). I found out after he died that be believed I was dying and  didn’t tell him.  Suffice it to say, it was a horrible 15 months. I was so sick I even got state disability the first time I applied. 

Things were relatively quiet from after Michaels death till his birthday on Feb 5, 2016. That was the day hell reached up laughing and took us on on yet another rocky road to hell and back. We found out that day my sisters husband was going to lose his toes on one foot if not the whole foot. He never took care of his diabetes. They did take his toes and he just wasn’t right after that, he died in March of 2016. The same day, Feb 5, my youngest brother found out he had stage 5 lung and brain cancer, which went to his bones later on.  He never smoked a day in his life, yet he had lung cancer. They attribute it to 9/11, the hell that just keeps taking. He worked downtown in the financial district and breathed in all that crap every day. He fought valiantly, never lost his sense of humor and never ever asked why me. He died one month after he turned 52 on July 29 2018.  I forgot another one, my father had died when he was 42 and left my mom to raise 6 kids. After a while she found her second love, he died Oct 2015. So in an eight year period, we buried 6 immediate members of our family.

While at the repast for my brother, my daughter found out she was pregnant and more than likely she was going to lose the baby. My sister in law is a nurse and works for an OBGYN, her daughter is also a nurse and works in the labor and delivery. They didn’t like what they were hearing and after the repast, they had us drive to S. I. to see my sister in laws doctor. She told her the same thing, the pregnancy wasn’t viable and she would lose it.

We actually went to Ireland a few days later, expecting a miscarriage, it never happened. Two weeks later when we got home, she had had another ultra sound and there was the most amazing sound, loud and clear there was a heartbeat. She was pregnant, she just messed up her birth control and conceived later than she thought.

God does make in mysterious ways !!!

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My Mikey, Feb 5 1988 – Nov 30 2012

Four years ago as far as I am concerned, you left us and joined Christopher in Heaven and left this world a little less brighter, less funny and a whole lot sadder. There isn’t a day that my thoughts and heart don’t drift to thoughts of you.

I wish everyone could have known you for the person you kept hidden. But that wasn’t important to you was it? You only cared about what the people who loved and knew you best thought about you. You had your own code and you followed it regardless if what others thought.

You were like Christopher in so many ways,  when you were friends with someone, you were all in, you never left anyone down if they needed a hand. You would drop anything if a friend needed you, or your brothers or sister for that matter.  You loved deeply and with all you heart you just went about it quietly, with no fanfare.

After your death, I received so many messages from some of your friends telling me how you were always there for them, no matter what time it was, if they called needing help, you were there. One person who had only met you recently told me how she wanted to die, she called everyone she knew but didn’t get any to answer her cry for help. As a last resort, she called you, someone she knew for less than a week and you went and sat with her all night. You saved her life! You never spoke about what you did.

I miss you so much, your crazy laugh and und unassuming manner. I’d give anything to hear you tell me once more, “It is what it is, so don’t worry Mom”.

While Christopher was my fellow lover of all left turns and taking the road less traveled, you were the watcher, the silent one who stood guard over all of us, making sure we were protected and safe to the best of your ability.

With Christopher it was all about noise and chaos. You were the one whom I could be quiet with and just BE in the moment with.  There was no noise and drama, just blissful peace and quiet. It is a gift to be perfectly content in the sounds of silence and we were good at it.

One of the things you did perfectly was surrounding yourself with the best of friends who are now a part of our family.  They NEVER forget Michael, NEVER, not you or Christopher.  They are always there for us, in spirit and body. Last year on the anniversary of Christopher’s death, they came over, made brunch for us, cleaned up and bought flowers for me.  Michael, the very best gift you left us are your friends.  They are, bar none, the BEST!

You took a piece of my heart with you when you left us Michael and I will never be completely whole, but I know you will keep it safe for me until we meet again. When I join you and Christopher we are going to find us a mountain and just sit in peace and blissful silence, content in simply being together again.

I love you and miss you more than words can express. Keep watch over and protect us Michael cause sometimes, it gets really hard to take that next step and breath. Keep safe all those who are in need, just as you did when you were here physically, especially Brittany, she misses and needs her big brothers, show her that you are always near.

Love you to the moon and back my quiet man!

Until we meet again, I will forever be missing you.

GUILTY HEARTACHE

So many times in the past few weeks, I find myself missing Christopher so much, longing for our conversations and the way we laughed, at everything and nothing at all. We had so much joy when we were together, our conversations were amazing and I miss those moments so much right now. And then, BAM, the guilt hits. How could I, at one moment miss one child so much but not the other? Shouldn’t I miss them both equally? Yes, there are times when all I want is to hear Michael’s maniacal laugh and his “go to” words of wisdom, “It is what it is Mom”. But right now at this moment in time, it is Christopher I am missing.

WE had our last (for now or forever, I am not really sure, but I never say never), fundraiser for the Memorial Foundation. It was getting to be too much work for me as not many people were helping that much and most of his friends didn’t come anymore. It is also a constant reminder that he is dead and I live with that and relive his death from Sept when I start getting getting ready for the event until the day of and beyond. It takes its toll to live with that kind of anguish every day.

It also doesn’t help that some of Christopher’s friends have been posting some old pictures of him or a song that reminds them of him (You Should Be Here) as they are looking for songs to play at there wedding and came across this one that got them to wishing he would be at the wedding to share in there joyous day.

There is a picture one of his best friends posted recently on Facebook and he is standing underneath this giant rainbow and looking at it, all I could think of was, “look Christopher went with him”. Crazy, maybe but Christopher and I had a rainbow thing. Every time he saw a rainbow he would stop, take a picture and send it to me. They are the sign I look for when I am at my lowest point and truth be told, I usually get one. Either I see one myself or a friend will post one for me.

SO yes, at this moment in time, I am missing Christopher so much it hurts to breathe and the physical pain in my heart is as real as this keyboard I am typing on. And yes, there is some guilt that Christopher is my focal point right now, but that is something I have to live with. There are no handbooks on how to deal with the death of two children in two years, so I will make it up as I go along and do the best I can at any given moment in time.

I am sorry Mikey, I miss you more than words or feelings and I know that at any given moment in time, you will be my focal point and I will be apologizing to Christopher.

But like Mikey always said, “it is what it is”.

Love you both to the moon and back and as long as I’m living, my babies you’ll be.

One of my favorite pictures

This is one of my favorite pictures of “The Boys”. It was taken (by me) at the Jersey shore, probable Seaside and I have no idea what year. I would think the boys were 6, 4 and 2 give or take. Brittany was probable 2 but not sure of all the sand and the ocean at this point. So Christopher ran to the waters edge with such exuberance and joy, he wanted to see, do and experience everything (in hind sight, it’s almost as if he knew he had to crowd a lot of living into such a small amount of time), Stephen followed albeit with some reluctance, but the funny thing was Michael who always would march into everything and anything full steam ahead,  grabbed gold of Greg’s hand and they brought up the rear. I can’t say what Michael was thinking at the time, we never talked about it and now I wish we had. Was he afraid? I doubt it. Was he just amazed at the magnitude of the ocean and how the waves crashed upon the shore? Maybe. All I know for sure is I wish I had found this picture before he died so I could ask him if he remembers that day. More than likely he would respond with his potty mouth F… No!

Many years ago, I came across a little booklet called Thought Conditioners by Norman Vincent Peale. This is is description if how and why the book came about:  Over the years, I had noticed that certain passages
from the Scriptures had a particularly potent effect on
human beings. I began, therefore, to list the life-creating
words from the Scriptures that had done me the most
good. 

He later went on to say this about why there were 40 in his booklet:

The booklet contains 40 creative and vital passages.
Why 40? Perhaps because in His own deepest spiritual
experience, Jesus spent 40 days in the desert
withstanding temptation. There is no magic to the
number 40, but it so happened that when I finished my
list it totaled 40.

One of these thought conditioners was a phrase from —Isaiah 28:12,  This is the refreshing. —

I have been waiting for that moment in time when I could sit back with a deep contented sigh and say ……This IS the refreshing……. Now, as I look at this picture of my beautiful boys and there father, I realize I let one moment in time that WAS the refreshing go without even seeing it for what it was.

Under each of the 40 conditioners he wrote a little bit about how to use this phrase to open our eyes to all the possibilities  and the way to see them

 These few words remind us of a spring of cool water
because of their renewing quality. The frequent use of
today’s text has an invigorating effect.
Sometimes, after a busy day or even in the midst of
exacting activities, stop and say these words over to
yourself and note how they dissipate weariness and
refresh the body, mind, and spirit.
The best method for using these words is to say
them slowly, emphasizing their soft quiet melody. At the
same time conceive of peace, rest, and renewal as
coming to you. 

In my quest to find my new normal, to find that balance within and to deal with the loss of my 2 precious sons, I need to remember these lessons Norman Vincent Peale so eloquently shared.

Grief….

it comes in waves like the ocean, pulling you under into its deep dark abyss without any warning. One moment you’re standing there, knee deep in water, you turn around and a wave crashes over you and brings you down and out into deeper water. With no idea what’s up or down or where you are in relation to the shore, you flounder.

It comes in like a thief in the night to steal the only sanctuary you have left, which is sleep. It plays a slide show in your mind of pictures, memories and snippets of conversations you’ve had and those you wish you’ve had.

It comes at you like a fist to the heart when you finally gather the courage to look at pictures or watch home movies. That moment in time when they were so alive so vibrant and you wake you silently screaming for one more …..moment, conversation, one more I love you and you realize that all your moments are in the past, there is no future or someday or one day.

It steals your breath away when you watch a friend of your child marry, or have a baby and you try to be brave and fight to keep the tears at bay as you smile and wish them well. And you truly do wish them well, it’s just that your mind play games on you and a litany of all the things you’ll never have or see run through your mind like a broken record. You’ll never be the mother of the groom and dance with him at his wedding, he’ll never come to me and tell me about the love of his life, he’ll never know the joy of fatherhood, they’ll never be anymore memories to be made and he will forever more be 24.

And then, you lift your head and straighten your spine because you know, deep in your heart and soul that grief cannot take your memories and you KNOW deep in your bones this one truth, LOVE IS THE ONLY THING WE CAN TAKE WITH US WHEN WE DIE. IT IS ETERNAL

 

The nightmare keeps on coming back!

Oh my! I have been quite remiss about writing here. Somedays, it takes all that’s in me to curtail all the anger, angst, pain and loss I am feeling. Sometimes, there are just no words to even describe the feelings and emotions that are coursing through me.

Have I moved past this horrible nightmare that my life became when my oldest child died? Hell no! Not even close, not by a long shot.

Life couldn’t/wouldn’t be that simple or easy for me. Five months and a day after my child died, my mother died. I think I was so numb with my grief at the time that to this day, I have still not mourned her passing. How could I when life was just going to start throwing me under the bus. After Mom died in March of 2011 my “new normal” life continued on. The real fun didn’t start until Jan of 2012. That was when I started experiencing some weird medical issues that left my doctors baffled and confused. Prednisone became my constant drug which was oh so kind to add so much more weight than I actually needed. Michael, my second son was also going through his own health issues resulting from the accident he was involved in way back in 2006 where he crushed the right side of his face.  It seems seizure activity was increasing but he also decided to self medicate as well.  Long story short we found out in Aug he was having 6 to 10 breakthrough seizures daily and was on the highest dose allowed for triliptal and then out on other medicines. He found in Nov. (2012) , the last week that he wouldn’t be getting his license back anytime soon. He lost is ability to go to school, to concentrate and to do one of the things he loved most, drive his precious truck. He felt despair and hopeless. And who could blame him? BUT, he also didn’t really try that hard to get better, he thought he knew more than the doctors and he didn’t believe them when he was told to exercise and eat all his meals and sleep at a normal time every night and wake up in the morning. He said the tremors kept him from sleeping, but the doctors wanted him to go to bed and wake up at the same time every night and day. They said his body would get used to the routine, he said that was garbage, so he didn’t try. His friends thinking they were protecting him, did not tell us othere things were afoot. But they were and they were bad. On the Monday that he found out he wouldn’t get his drivers license back, he lost all hope. He gave up and gave in. He decided that since the doctors weren’t/couldn’t help him, he would go back to smoking weed. On Friday the 30th, I went out to my car to start it and put the heat on and when I turned back towards the house, I saw him in the garage with his friend standing over him like a grim reaper. Truly that was what he looked like, his hood was over his head and covering most of his face and he was leaning down low to Michael who was sitting in a chair, not moving, just standing over him. Michael was on the phone and I went ballastic on him. I could see he hadn’t been to bed at all and it was 8 AM. I yelled and screamed at him that he was killing himself and making me have to watch it, that I couldn’t bury another child and I needed him to start being a participant in his recovery, I told him I couldn’t do this all alone and he needed to want to live. There were other things said but I forget most of it. I remember telling him he was making me watch him die and it was killing me.

For some reason, I didn’t want to leave the house that day. I had a feeling something was going on but didn’t know what. I was just so uneasy and upset and couldn’t place why. I finally realized I was going to be late for work, so I woke up my daughter and asked her to check on Michael in 10 minutes becasue I felt he and his friend were going to leave. She tried, but he did leave.

AT about 11:30 I received a call from my younger son (he had gotten out of the Marines the month before to help us with Michael’s health issues as well as mine), he said he went out to the garage and found Michael sitting in a chair in the garage and he wasn’t breathing. He tried CPR for 10 – 15 minutes until the police arrived, they tried to revive him as well. It wasn’t until the paramedics arrivied that they were finally able to get a heartbeat. That was the beginning of our nightmare, part one. I got home while the paramedics were working on him but they wouldn’t let me near my house or in my house, to say I was freaking out is an understatement. So off we go to sit vigil at yet another hospital bed where our child is lying in a coma. His body is breaking down and yet they won’t take him off life support because they started the protocol to save him.    There was no grey or white matter in his brain, only water. He body was shutting down but still they tried to “save” him. They told us the “BEST CASE” scenerio would be if they got him to where he could breathe on his own, then he would be a vegetable for the rest of his life. WHAT????? did they really think that was best? WE left the hospital about 1 AM only to receive a call about 2:15 that they were losing him. My husband and I ran to the hopsital and finally they told us they would bring his body temp back up and take him out of the coma they put him in and that once they acheived this, he would, well,  die. The night before there had to be about 40  –   50 friends in and out of his room, we wanted to give everyone a chance to say goodbye. But on this morning Dec 1 2012, the only people we called were out other kids, we asked the hospital staff to wait until they got there before they unplugged the machines that were keeping him alive. They agreed. They said that once he was unplugged he would be able to hear us (he couldn’t when he was in the induced coma) and we could talk to him. They said that once they pulled the plug, he would be gone in about a half hour.  We waited outside while they did what they had to do and then they called us in, we stood around him, talking to him and crying and telling him to go home to God. Within 10 minutes my second child was dead.

Elusive Happiness

How do you explain happiness? How do you find this elusive fleeting most important part of our everyday lives? Or at least, most of us think this is the most important.

There are so many quotes about happiness, finding it, keeping it and just being….well, happy.

Often people attempt to live their lives backwards; they try to have more things, or more money, in order to do more of what they want, so they will be happier.  The way it actually works is the reverse.  You must first be who you really are, then do what you need to do, in order to have what you want.  ~Margaret Young

This could be true when you think about it, we work hard for something we may have one day in the distant future when we are finished accumulating all that we think we need to achieve the ultimate goal, the great destination of being HAPPY. Here’s another quote about that as well:

Happiness is like a butterfly which, when pursued, is always beyond our grasp, but, if you will sit down quietly, may alight upon you.  ~Nathaniel Hawthorne

I have heard this quote pretty much my whole life. I even believed it. I don’t anymore. I can’t. I just don’t believe. and there lies the crux of the problem. I want to believe. I need to believe. I yearn to put those rose colored glasses of mine on again, but “IT”, whatever it was that let me see the goodness and kindness in people and life is gone. How do you find something that was second nature to you and something that came as naturally as breathing. I didn’t set out to see the good, I just did. And now I am lost and adrift in a sea of sadness and grief that knows no bounds. And I just don’t know what to do about it.

I am missing, wanting, yearning for something, someone, that I can never have again. And NO, memories are no solace for this grief, this pain. It is as unrelenting as the sea crashing against the shore. It can’t be stopped, it doesn’t yield, it just comes at me in waves and waves of crushing pain.

 

 

A Journey

They say that any journey starts with a single step. I am now on a journey that I never thought or imagined I would be on, a path not of my choosing. One that was thrust upon me by the death of my child. I still, 7 months later, cannot fathom that I am a mother of a child who died…..it is incomprehensibile to me. This just can’t be my life. I don;t know HOW to be a mother to a child that is no longer with me. I still look to wake up from the nightmare that has become my life.  This is hard and I have no idea if I am really as strong as everyone thinks I am …….I have no idea how to do this, how to live this, how to be this person.