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I am never more inspired than when I am in the air. I could do without all of the airport bullshit ( w hich, I know is necessary to keep us safe but is, nonetheless, a pain in the ass.) I don’t know why; is it the tidy little way I can be sure my flight attendant will be down the aisle with my drink, come hell or high water, whether it’s the fact that I can have some hours of uninterrupted sleep (which, to be honest I rarely do on a plane but, still – its nice to know that I could if I wanted to), Is it the beautiful sky I see when I look out that window? The fact that I can watch a full movie, play my candy crush, work on a blog post – you get the idea. Now that my children are older. Air time is MY time. 

I think, however , that the biggest draw for me when I travel is the fact, although I know in my heart that all of my problems will still be there at home when I get back, I have taught myself to shelve them while I am away. This may seem like a simple concept to many of you but, it’s been a long process for me. You see, for someone my type of personality; A Type, controlling, perfectionist to a fault person with more than a little touch of OCD, it hasn’t been easy.
I have been through so very much the last three (has it been three already?) months. Between the loss of my cousin, who I was so very close to and then my dad passing not even 2 days later, on top of the almost constant pain due to this nasty weather and now, my late cousins wife – who I have known for so long has become my cousin by osmosis, is gravely ill with Stage IV cancer and nothing seems to be working. She needs a miracle. I am in constant touch with her because we are so very close and because, due to the fact that I am a breast cancer survivor, I understand certain terms, action plans, side effects and a fraction of what she is feeling mentally and emotionally. 

It is an honor for me to be one of Amy’s go-to people, believe me. It also, however, gives me anxiety. Anxiety about her future, about the small but always there chance that I myself, could recur at ANY time (cancer is a tricky fucker), my family has not even really been able to properly grieve my late cousin and my dad because Amy was admitted to the hospital a few days after both of them passed away. It has just been another one of those periods where my family can’t help but have a little pity party because, damn, we seriously have not had a break from serious trauma (and I’m not over-stating, as my faithful readers know) for more than three months at a time without another piano dropping on our heads.

Despite all of this- we go on. I have certainly had my days, which I’ve been told by a therapist is normal and right. I am currently on my way to Las Vegas with two of my closest friends to meet up with more of my closest friends, to celebrate the marriage of a wonderful couple who means a lot to me and whom I love very much. 

These are the things that keep me going. Despite being sad about my recent losses, despite my physical discomfort, despite the fact that I was hesitant to leave New York because of Amy, despite the work I left on my desk – I refuse to let the bad times prevent me from celebrating the happy ones. And, as I mentioned earlier, I have always gone away to do fun and happy things with my family and friends but, many times it was out of guilt for missing an important event or for making my husband and children miss them. I would have a good time but, I was, without a doubt, only really half there. The other half of me was worrying about some scan or test (for both myself and both of my parents), trying not to be terribly sad because of a recent loss (as I said – the hits have kept coming for the last decade), worrying about some friend or even just acquaintance, who I had been helping through their diagnosis, whether it just be to explain terms, give my opinion on a certain proposed action plan, accompanying them to the wig store or just listening to them cry and scream and rail at God. It has taken me a lot of therapy as well as a lot of practice to get to the point where I am now. 

Now, I am In the present. Now, I am where I am and with who I am with. In a real emergency, I can be reached. I try to live life in the moment – which seems so simple but, is a very hard concept for certain personalities, like mine, to grasp and implement in their own lives. I will land, and my friends and loved ones will have my full attention for the duration of the trip. I will not only be there but, I will be present. They will have all of me.
And, here’s the upside to getting away for a few days without bringing your mental baggage with you- the problems and issues you come back won’t feel so insurmountable, because you have taken the time that you need to recharge and realize how much you really love yourself and how strong you really are. 

So, if you are kind enough to still be reading my work, I think that the message in this one is pretty clear. I pray that all is well with you and your loved ones.The truth is though, that we all get a turn at batting in this here world that can seem so cruel. Some may have years without major incident and some may be called up to bat much more often than others. 
So, again, I implore you to be in the present, to learn not to sweat the small stuff, to choose your battles wisely with spouses, children and other loved ones and to generally try to live as happy a life as you can in the short time we have here. Amy is not even 45 yet- put that into perspective. You may need a self help book, a friend to chat with or even therapy.  

I assure you – it’s worth every penny.

In the words of Mr. Timberlake; “yesterday is history, tomorrow is a mystery.”

All we have is the here and now. Go out there and grab some!

 

I want to thank you all for coming out to honor my father, Robert Taub. Most of you know him by Bob, although he was also known as Daddy, Papa, Robbie, Uncle Bob, Mr. Bob, Big Bob and, most recently, Slim Daddy. Whatever it is that you called him, the fact that you are here today means that he touched your life in some way.

My dad was born on January 27, 1949 in the Bronx to Harry and Dinah. He grew up in Hicksville, NY and was always regaling us with stories of the Cloister Street Gang. Just to name a few, Joe B, Dale, Walter, Richie, The DeGuilios and the Zeigs. So many tight childhood friends, who he kept in touch with pretty much right until his death. I feel that that says something very special about a person. It speaks to loyalty, generosity and commitment.

Daddy played Little League for years and then, football in High School. If I must say, he was quite a fox. When he was 18, he traveled across the country to California where he rode motorcycles, went to Woodstock, had many adventures and was quite the hippie. I know that this time in his life – just having far out experiences with his buddies, was a very special and happy time in his life.

Being a true New Yorker at heart, though, he eventually made his way home. He ended up earning a degree from Nassau Community College and after numerous jobs – he was always telling us he went to Whopper College! – he ultimately discovered that his love for photography was what he was meant to do. In the early 80s, he started his own photography business and named it “Chris Cole” after me and my sister, Chrissy. We were so proud! He had an amazing eye and took gorgeous pictures. Although he later switched careers to computers (he would be mad if I didn’t say Apples, NOT PCs), he never got over his love of photography. For his entire life, he was always there, at every event, with a camera in his hand, capturing every joyful moment.

As soon as personal computers became popular, he was hooked. Mostly self- taught, he went on to have a very successful career as a Macintosh consultant. Some of the places he worked were Sony, Viacom, MTV and CBS. He was so generous with his knowledge and helped so many people learn to navigate this new technology. I know he’s helped many of you here, whether it be which computer to buy, how to use the newest versions, or which programs would best fit your needs. He was always on the cutting edge of technology and loved his gadgets. We were always the first family on the block with a video camera, a VCR, Disc Player, Blu Ray player, TIVO. You get the idea.

These were passions of his. And, I’m happy for him that he got to make a living doing things he loved. But, as everyone in this room knows, his real passion was his family.

He met my mother, Elizabeth, a single mother when I was very young. They met out with friends at a bar. He ran over to light a cigarette for her. Of course, the way he told the story was that she saw him from across the room, whistled through her fingers and yelled, “Yo, Sailor!” They fell in love quickly and soon, he asked her to be his wife. He was a man strong enough, and brave enough, to marry my mother despite her having two very young (and let’s face it – we’re talking about me and Chrissy), somewhat wild little girls. They married in 1980 and gave us our beautiful baby sister Lori in 1981. Finally, after all of the turmoil Mommy, Chrissy and I had been through, we had a loving and stable home. Daddy, at NO time, made Chrissy or I feel as though we were any less of his daughters than Lori was. This is truly a beautiful and rare thing.

And, come on, you have to give the man credit. He lived in a house with 4 females and 1 bathroom. He lived with mood swings, emotional outbursts, snotty teenage attitudes and, it was almost impossible for him to EVER get his hand on a phone that wasn’t being used, the cord stretched to the breaking point around the corner from the kitchen into our bedrooms. In the early 90s, my parents changed their phone number. A couple of years later, I was selling sporting goods at Sears when I was ringing up a middle aged couple. When they asked for their phone number, and they told me it was 499-0103, I excitedly told them that that was MY old phone number. Their faces changed immediately from good natured to something else. The woman said to me, “Oh, Lord. Are you Nicole or Chrissy?” Apparently, they were still getting calls – lots of calls – looking for Chrissy and I at our old number. It was an expensive treadmill and I was on commission so, thank God I did not lose the sale, although it was clear that they weren’t happy!

Despite raising us three girls, who could drive him absolutely nuts, we had a very happy home. We celebrated holidays in a huge way, for every birthday, the house was decorated and filled to the brim with presents and loved ones. We took trips, we went to see movies, we wanted for nothing.

Daddy was also such a loving husband to my mother. They were different in so many ways but, something about them just worked. He would go to the moon and back for her and she knew it. When we went through Mommy’s things after she passed away in 2013, we found some love notes that he had written her over the years. Some were sweet and, some scarred us for life. Really, there are certain things children do NOT want to know about their parents private lives.  However, the one thing that was clear in each letter was how very much he loved her. She was his “toots”. I am so happy that they found each other and believe that theirs was a true love story. Daddy was heartbroken when Mommy passed away. He was never the same. The only thing that got him through it was his children and grandchildren so, let’s go there.

He called me #1. Although I was so happy to have a dad who loved me, boy did I give him a run for his money. My mom had been extremely laid back and I was NOT happy when he first came into our lives and tried to add some discipline. Bedtime? What’s that? What do you mean I have to wear a hat in 20 degree weather? I just did my hair! I’m punished? What the heck does that mean? Eventually, though, we found our groove and, once we did, it was magical. He put up with my boy crazy phase, he allowed my friends to practically live at my house – especially Jill, who he affectionately called his fourth daughter. He was proud of my scholastic achievements, beamed when I graduated from college and felt like I took after him when I became a small business owner. He was tough but fair and taught me life lessons that helped make me into the person I am today. When I married Al, he couldn’t have been happier. He loved Al like his own. They had a very special relationship. I know that Al was always there for him but, after he got sick, Al became his rock. My entire family is grateful to him for this – and will never forget that kindness that he showed Daddy and the wonderful way he took care of him these past few months.

Chrissy was #2. If I gave Daddy a run for his money, she gave him an Iron Man race. We all know Chrissy, and the teenager she was – up for anything to have a good time. A memory that comes to mind is when she traumatized Daddy by basically totalling her car in the city, coming home, parking the car right in front of the house and going to sleep. You can imagine his reaction when he woke up and looked out the front window and saw the car. After ascertaining that she was not hurt – I was seriously concerned that HE would hurt her. Despite many other stories like these, she could also make him laugh like no one else. He used to love to tell the story of when they went to the supermarket and he told her to go to the next aisle and get a 5 pound bag of sugar. He almost peed his pants when she called out to him “Daddy, do you mean the bag that says 5 libs?” As she got older, all of the values he instilled in her came to fruition. He was so very proud of her work ethic and her extremely huge heart. He also used to say that she was the most like Mommy – she would do anything for anyone – always. He really depended on her after Mommy died. She was the one who would run errands for him and check on him every day. He was also thrilled when she married Jay, the love of her life. He knew how much he loved her and that he would be able to be there to comfort her in times of need. You see, when people have hearts as big as my sisters – empathic people – they don’t only feel pain that is their own, they also feel the pain of others around them. It can be a heavy burden to bear.

And then #3, Lori. His baby girl. The greatest day of his life was the day she was born. I remember he was deliriously happy holding her – she couldn’t have been more than a few minutes old – when she farted – loudly! He was stunned. My mother leaned over to him and said, “You know that they do that, right Hun?” Again, he couldn’t stop laughing. So much that he was almost crying. Since the photography studio was in our garage at the time, my mom went outside of the house to work and he was a stay at home dad before it was in vogue. Because he took care of the day to day caring of her, there is no question that they shared a special bond. They did everything together. Wherever he went, she went. When he rented space for the photography studio, he took her with him every day. She would sit at the front desk and, as the customers would come in, she would say, “You can give me the money and then go talk to him”. She was four. He was also incredibly proud of her athletic ability. She was a phenomenal soccer player – a star, really – and, he did not miss ONE game. Ever. There he was, on the sidelines, cheering her on with that big booming voice of his. He was also thrilled with Lori’s choice of a husband. He couldn’t love and respect Chris more. My sister, as I’ve said before, can be a little high maintenance. He always knew that Chris would be able to keep her happy without giving into her every whim and landing them in the poor house.

And, then came the grandchildren.

First was Michael, who was special just for the very fact that he was the first one to make Daddy a Papa. He was so proud of his smarts and kind heart. I am so very happy that not only was he around to hear that Michael got into every college that he applied to but, also that he got academic scholarships.

Then, Jack, who was raised by a village since I was diagnosed with cancer just four months after he was born. Daddy was amazed at his resilience and kindness. He made mention, many times, about how special he thought it was that not only did Jack spend time with his baby cousins but, that he did it with a smile on his face, with patience and with love. He was also proud of his skills both on the basketball court and the football field. All the while maintaining grades high enough to land him on the honor roll every quarter since middle school.

Then Gavin, Lori and Chris’s first baby. All you have to do is look at a picture of him holding Gavin to see how much joy he brought him. Gavin is smart, kind, funny, loving and a real “Papa’s Boy”. He could put together a puzzle of the entire United States by the time he was a year and a half. You know how much Daddy loved him also, because he forgave him for being a diehard Mets fan! Daddy’s favorite sport to play, and to watch, was baseball. He was so proud and happy that Gavin shares this passion!

And, finally, Baby Mason. Daddy’s doppelganger. His zest for life, humor and spunk was a joy for Daddy to witness. Mason was the blessing that God gave to Daddy after he lost my mom. It gave him so much happiness to watch him run around with unbridled joy. Thank God for Mason – because of his incredible resemblance, it will be impossible not to think of Daddy every time we see him.

So, Daddy loved many things; photography, gadgets, computers, his friends, poker, his koi pond, all of the dogs and birds that we had throughout the years, Bob Dylan, playing his numbers, motorcycles, the Yankees, his hippie days – but, there was nothing he loved more than his family. Not for one second. Ever.

I can’t neglect to mention just how incredibly strong Daddy was. Despite many health issues in the past, he always pushed through to fight another day. Although this last illness finally took him from us, he was positive and looking towards the future right up until the very day that he passed.

Daddy, Papa, Mr. Bob, Mr. Taub, Uncle Bob, Big Bob, Slim Daddy

  • We will miss you at every milestone
  • We will miss you at every holiday
  • We will miss you at every birthday
  • We will miss you on a random Tuesday afternoon when there is nothing going on

However, we are happy that you are with Mommy. We are happy that you are with all of those who you loved and who passed before you. We are happy you are with God.

We will take care of each other because that’s what you taught us to do. We will live life to the fullest, in your honor; no matter how hard it is, because we love you that much.

And, lastly, please take care of Little Neal. He just got there a day before you. We know how very much you loved him. Please watch over him until his parents are reunited with him again. 

Love you always,

Number 1

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After all of the things I’ve had to do to get through my breast cancer diagnosis in 2002, I would be lying if I said that I was not getting tired. Especially since just when I thought I was done with all of the surgeries (I had twenty since my diagnosis), I found out that I would have to have three more this year. Two are pretty simple medical procedures but, I am scheduled for a double hernia and an old-fashioned (not laparoscopic) total hysterectomy in January.

I had the first of the two smaller medical procedures yesterday and, because I’m “special”, although we didn’t expect to find anything but a thickened uterine wall that would have to be dealt with, there were three large polyps that will have to be removed in the hospital in the next few weeks. Now, luckily, I had a biopsy of the uterine wall the day the sonogram showed the thickening because my kind doctor took pity on me when I started crying, so the chances of those polyps and the rest of the tissue that was taken yesterday being malignant is small since the original biopsy of part of the wall that was removed was benign. But, it led me to have to have another procedure to remove them. In addition, it caused me to have to set up the total hysterectomy because one of the side effects of the only medication I can be on while I am pre-menopausal to prevent the cancer I had from ever coming back is an increased risk of uterine cancer.

As it is, I have already been on the drug three years over the standard of care because, despite the chemo, radiation, Lupron and the drug I’ve been on (tamoxifen), my body refuses to go into menopause. Many women lose their periods after the rigorous chemotherapy I had and, if not, they lost it after being on tamoxifen for two or three years. I believe I am the only woman my oncologist has had who has had to deal with a patient who was still getting regular periods even after ten years of Tamoxafin. After much discussion at my check up after I had been on the drug for ten years, we decided I would stay on it rather than put myself into surgical menopause at only 43 since the only side effect I had ever had was a fifteen pound weight gain. The other effects are much worse; blood clots and, as I mentioned, an increased risk of getting uterine cancer. From years one to ten, the increased risk is small but, there is no data on whether the risk increases after ten years hence, the yearly sonogram that found the uterine wall thickening.

Now, although I hate the fact that I have to take this medication every day (with a baby aspirin to prevent the blood clotting risk referred to above), there was no way I was not going to do anything to be proactive in my cancer not returning. Especially since, like I said, I seem to be “special” and many times, my body does things that go against the “norm”. I wasn’t thrilled about the weight gain, either, which happened just as they said it would (think of it as being permanently in a state of “period bloat”) but, fifteen pounds, to me, was certainly worth my life. There are many women who don’t take the tamoxifen solely due to the weight gain and, I’m sorry to say that I personally know one of those women who is no longer with us. After ten years, you are technically considered “cured” and many people then go about their lives without any treatment but, I’m not taking any chances. I’m so blessed to have so many people in my life who love me and I would never want to be taken from their lives, on top of the fact that I have way too much living, and laughing, to do. Trust me, though, every morning, when I put those little pills in my mouth, it is a reminder that I had cancer. How nice it would be if I could just put it all behind me. Sigh.

So, I am having the surgery to remove the polyps soon and then, will have the total hysterectomy in January. On top of that, due to the cancer reconstruction surgeries I had, I have developed two hernias that need to be removed before they are able to do damage to other organs. I’ve already had to have one hernia surgery for the same reason, back in 2005 and, although it was not one of my longest (12 hours took that record) or even one of the hardest (one time I came home with 8 drains and had I don’t even know how many stitches – how many hundreds), it was the surgery with the hardest recovery. You see, where the hernias are happen to be the very center of my gravity so, I cannot shower, drive, lift, laugh hard, sit up without pain, etcetera for ten to twelve weeks. If you know me, you know that I am fiercely independent and having to have someone drive me anywhere I have to go, having to have my sisters help me wash my hair, having to sit at the edge of the bathtub and wash myself (which takes an excruciating amount of time) and having to have people help me with my work just sucks. However, it is something, for my health, that I will do.

So, I am getting tired, for sure. I’m tired in my heart, I’m tired in my mind and I’m tired in my body.  I’m sick of being afraid of anesthesia (how long will my luck hold out) and I’m sick of feeling fat and unattractive. I’m sick of being scared of test results (because I’m “special” – remember?) Just last summer, I had some symptoms that caused me to have a colonoscopy. Everyone said that at my age, I would be fine. They wouldn’t find anything. Well, they did. Six polyps, all different in size, that is very unusual for a woman in their forties. Now, I’m so glad I had it (and will have to have one once a year for a while) because I will probably not die of colon cancer. They will find the polyps early and remove them before they become cancerous. But, still – really?? On top of it, because of the fact that I have a recurrent staph infection because of one of the surgeries (that one caused me to have a blood transfusion and sepsis), I am unable to do any type of strenuous exercise. It causes my immune system to dip and the staph infection to rear its ugly head. Because of this, I also feel weak.

I was feeling sorry for myself yesterday when I woke up from the procedure and was told that because the polyps were big and “broad based”, I would have to have another procedure in the hospital, and soon. It couldn’t have just been a thickening of the wall that could be cleaned up. No. Because it’s me. And, I know that the doctor told me that she is not worried about malignancy because of the prior biopsy she did but, come on, it’s always there, in the back of your mind, once you have a cancer diagnosis. And, I know I’m beating a dead horse here but, things that doctors don’t expect from other patients seem to happen with me.

I came home and was crampy and exhausted. I texted the people who had been texting me, or who knew I was having the procedure and then, collapsed into bed. I slept pretty much twenty-four hours between the procedure and now. Unfortunately, I had to take a shower and now, doubt I will be able to sleep at all tonight. The cramping has gotten better, though so, that’s good. Paulie Walnuts is with me and we will just stay up cuddling and probably watching “The Sopranos”.

I know that this blog has been pretty technical up to this point and, it was necessary. It was necessary because of what I’m about to say next.

Yes, I’m tired but, I’m still here and going strong. I had a Fourth of July party with sixty of my closest family and friends there and we had such a great time. We laughed so much that my belly hurt the next day. I will go to Florida in October with old friends for our annual Halloween Horror Nights get together. Again, we will laugh and laugh and take so much joy in being together. I am taking a second trip to Aruba with my very best friend in December. We will just lay on floats in the water all day, watch the sunset, and then, go party in the small town. We will laugh, and dance, and talk about old times. We have forty-three years of memories so, we never run out of things to talk about.  We fall into bed, very late, tan, rested, slightly inebriated and completely happy. Then, in April, two of my favorite people in the world are getting married in Vegas and I wouldn’t miss it for the world. A Disney/Universal Family vacation will take place soon after. I can’t wait to see the looks on my nephew’s faces when I see them meet Mickey and Minnie and the Minions. I can’t wait to be on the corniest ride in the world “It’s a Small World” and I can’t wait to go on the roller coasters with my sons and brother in-laws. I always put my head back on those rides, and let the wind whip my hair around and breathe in the air and think “I am living.”

You see, there are lots of scary and hard things in my life but, I try to fill the other space, when those scary things are not happening, with as much love, laughter and joy as I possibly can. I think it’s very important to always have things to look forward to. That’s why I have so many parties; game nights, Rangers parties, holiday parties, BBQs. Sure, my core group is BIG and it’s a lot of work but, I wouldn’t change it for the world. People tell me I’m crazy but, they just don’t understand. These are the moments that keep me going. These are the things that turn the exhaustion into happiness and, most importantly, hope.

Unfortunately, I have a couple of friends who were recently diagnosed with cancer and they have long roads ahead of them but, I’m hoping they read this. Cry when you have to, it’s normal to be scared, it’s perfectly okay to feel like it’s not fair that this is happening to you but, be sure to remember that the reason you are going through all the treatment to make you well so that you can LIVE and not just exist. If you can survive this – and you can – I feel that it is not only a good thing to be happy for your soul but, that it is your responsibility to be happy. God kept you around for a reason. For me, I feel that one of those reasons is to try to inspire others who are going through really tough times to be grateful when you get through those times. To show others that although life is hard, there is so much joy to be had.

My mom used to say , when someone famous would die suddenly, that she never thought she’d outlive them since she had been dealing with cancer since she was in her twenties. But, my mom was sure to live her life to the fullest. She was happy. Sure, she was scared and tired, too but, all in all, she lived in such a way that she didn’t waste a moment of the good times. Anyone who knew her knows this is true. I guess that’s where I get it. The apple doesn’t fall far from the tree, after all.

So, when I’m surrounded by my friends and family and we are all eating, dancing,  drinking, laughing and having a good time, I’m often laughing the most. That’s when I’ve had people tell me “your always so happy”. That always makes me feel so wonderful. For me, it feels like Victory!

I know it is easy to feel despair and sadness in this life, especially with all of the horrible things going on in the world but, take it from me, you can feel empathy and sadness for the people who are affected but, then, try to get away from the news and the T.V. and go and do something that makes you happy. You won’t ever regret it.

xoxo

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For the past few weeks I’ve been having a very hard time grieving over my mother. I know why. I wasn’t feeling great for about three weeks. Not the ordinary pain from the scar tissue or charlie horses from the “phantom limb” like syndrome I have under my left breast, which was operated on over 15 times. Bad as in I felt like I could not get out of bed, I would get exhausted very easily and couldn’t focus. At first I chalked it up to coming off the holidays and just being tired from all of the work that entails. I had just been to the oncologist so, I wasn’t really worried about the cancer (although to say it didn’t cross my mind once or twice would be lying). Finally, I woke up on a Saturday morning with a terrible sore throat. Okay, now I knew, I was just fighting off getting sick and now I was so, it would just run its course (I’m thinking a week or two of just taking it easy and I would be feeling better).

By Wednesday, when I still felt like crap, my husband took me to the doctor. Turns out I had pneumonia. I was prescribed antibiotics, steroids and a cough medicine with codeine in it. By this time, my sore throat had moved into my nose and was dripping down into my chest, although I wasn’t really coughing that much. However, I was still extremely tired. My orders were, because of my health issues, rest, rest and more rest. Luckily, I had caught the pneumonia early.

And rest I did. I worked more after each of my twenty surgeries. I couldn’t work because all I could do was sleep and, when I couldn’t sleep at night (because of those damn steroids), I was loopy on the cough medicine. When I didn’t feel better a week later, I went back to the doctor. Another x-ray was taken and the pneumonia was getting better. I was a bit wheezy, though, so was told to use the cough medicine as needed and use am inhaler and continue to rest. When you have pneumonia (and I never had), it can take a long time to get better, apparently. So, I rested Wednesday, Thursday, Friday and Saturday. I was feeling better by Sunday so decided to go to my nieces birthday party at a roller rink and then to Jack’s basketball game.

When I was a teenager, I could literally roller skate like Dorothy Hamill could ice skate. I could do double sow cows, I could skate forward, backwards, with a partner, with my right leg all the way up and straight, well – you get the idea. I was excited to get on the floor and do my thing. Well, let me all give you a heads up. If you were like me (and, if you are in my age group, you probably were – we spent almost every weekend at the Commack Roller Rink), unless you have kept up with it, or have learned to roller blade in between, roller skating is NOT like riding a bike! I was okay on the carpet. The second my skate hit the wood, I went down like a lead balloon on my right side. Thank God, since I was the first one out there from my family, no one I knew saw me but, about two hundred other people did. They were probably taping it on their cell phones (I’m surprised I haven’t seen it pop up on You Tube or Face Book). With the wind knocked out of me, I lay there for a moment, told myself “I can do this”, got up and, again, went down like a ton of bricks. Now, I couldn’t even get up if I tried. Finally, some guy said “hey, do you need help?” At that point, being so embarrassed and pissed that no one tried to help me up the first time I answered, “No, I’ll just wait for the guy with the striped shirt.” Picture me on the floor with kids and adults skating around me – having to move out of the way to not skate on top of me and no one asks if I need help? Nice.

When the guy with the striped shirt came around (I forget what we used to call them), he asks me, “Do you need help?” By now I am pissed. “Um. Yeah. Clearly I can’t get up. Do you think you can help me up and bring me to the wall?” Geez. Rocket Scientist.

When I got to the wall, I was able to easily get back to the chairs and take off my skates (it’s a lot easier to skate on carpet, believe me). I was so devastated. Convinced that the reason I couldn’t do it was because I haven’t been active in these past fifteen years and so, didn’t have the strength or the balance to stay up. How much more can this cancer take from me?

mama

So, getting back to the point, that I have been really missing my mommy. I miss her most when I am not feeling well. I would have called her, and she I, at least two or three times a day while I was sick. She always had a way of making me feel better – of putting things into perspective. She would have said things like, “Okay, so it’s pneumonia. You beat cancer – you’ll be fine.” Or, when I was stressing about missing work, “Okay, so you have to miss a couple of weeks – the work will be there when you get back, believe me.” She just knew me like no one else and knew exactly what I needed to hear when I needed to hear it. She didn’t get pissed if I snapped at her because of any of the things she said. She just chalked it up to me being stressed and sick.

I also miss her the most when I can’t call her ( I probably would have been crying outside on my cell phone) and tell her about things that happened like what I went through at the roller rink. I really was devastated that not only wasn’t I like Dorothy Hamill anymore but, I couldn’t even take one step on the wood floor. She would have made me laugh when I told her that people were skating around me and NO ONE stopped to help. She would have laughed when I sent her pictures of the grapefruit sized bruise on my ass and the apple sized bruise on my thigh. (For the record, I also scraped my left elbow, had pain in my left arm and couldn’t turn my neck for about three days).

Most of all, I missed my mommy these past few weeks because I knew my dad was going in for a big surgery and, so as not to worry my sisters, there are things I don’t say to them that I was personally worried about, having been through what I have in my own life, I shouldered most of the worry alone. Also, the fact that the last time my dad had surgery, they were not able to remove the tube and he couldn’t breathe on his own. It was done at a surgery center and he had to be transferred to a hospital. They really couldn’t give us answers there except we would have to take a wait and see approach. I’ll never forget Al, Chrissy, Lori and I leaving the hospital that night, all heads down, thinking, “could this really be happening again?” It had not even been a year since we had lost our mother. Luckily, they were able to get the tube out the next day. But, I would have been on the phone with my mom all night, and we would have said things to each other to make each other feel better.

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I just miss her, damn it, and the last few weeks have been a downward spiral into a place I was in the grieving process about a year ago. I was told, though, that grieving is not linear. You will move forward two feet and then, wake up and feel like you stepped back four. This is always the advice that I give my family and friends when they lose loved ones because for me, it really helped. I didn’t question, “why am I feeling so shitty today when I had a good day yesterday?” Because that’s just the way it goes.

As for the perspective part of the piece. Daddy had his surgery yesterday. It was supposed to be Monday but, that’s a long and shitty story that I’ve told at least ten times today and don’t want to get into. It was over six hours long and, originally was scheduled to be done laparoscopically. Unfortunately, that wasn’t able to happen so, that’s why it took longer than anticipated. They actually had to collapse his lung, on purpose, to get where they needed to get to make sure that they got all of the cancer that was left. Now, the surgery went well. They got it all out. But, they had to leave the tube in so that he wouldn’t wake up and be in pain trying to breathe through one lung. This is what made me nervous. I wanted to make sure that that tube would come out with no problem. That was my main worry about this surgery. But, it was staying in for the night. I was told that they would take it out tomorrow.

On so on to the 11:11 part of the story. Since my mother had basically battled cancer three times while I was a kid (the first time when I was an infant), ANY time there was something to wish on; a dandelion before I blew on it, a blow out the birthday candle wish, an eyebrow that had fallen out and needed to be blown wish, and most importantly every time I saw 11:11 on a clock (which happened every once in a while), my wish was always the same “Please make my mommy be okay”. Well, after she passed, I think the day after was the first time I saw 11:11 on a clock and actually, out loud, cursed it. Fuck you, 11:11, you and the rest of those superstitions I grew up with don’t work worth a shit, or something to that effect. After that, my sisters and I started to  see 11:11 constantly. I know I see it at least 10 times a week. It’s not “normal”. Everyone who knows me knows I am a skeptic about those kinds of things but, I am sure, that every time I see it, it’s my mommy letting me know it’s okay, she’s okay, or whatever I’m going through will be fine and work out.

So, after I got off the phone with my sisters (my brother in law, Chris, took him for the surgery.) I said a prayer to God, my grandparents and, of course, my Mommy. I went into the kitchen to get myself something to drink and got cozy on the couch, praying that the night would go quickly so that that freaking tube could come out. I got a text from someone and, when I picked up my phone – you guessed it – 11:11. Needless to say, I felt like a weight was lifted off of my shoulders. I just knew that when they went to take the tube out, it would be fine.

I waited up for Michael and then when up to sleep at around 1AM. I slept well, even though I am dad’s healthcare proxy and if I hadn’t seen the 11:11 I would have had a restless sleep, if I slept at all, waiting for that damn phone to ring. When I woke up, my sisters were already at the hospital (I have to wait to get the okay to go, having just gotten over pneumonia). They told me that the tube was out and he was groggy from the medications but, other than that, talking to them, making jokes with the nurse, etc. He was doing really well.

So, I miss mommy but, not like I have in the last few weeks. I am on a high because my daddy is okay. And, isn’t that the way of it? Perspective. Today, I could have been mourning both of my parents. Even my ass, which has killed to sit on the last week, is not as painful. And, the deadlines I have been worrying about at work seem doable now.

And 11:11. Say what you will but, I am a believer. It’s how my mommy communicates with me and, although I’d obviously much rather have her here with me on earth, it comforts me to know that she is still looking out for me and letting me know that not only is she there, she’s watching out for all of us.

Blog 1

They say that you always remember your first love – there’s something so special about it – something that can never be reproduced.

My first love loved me before I was even a being. She loved the very thought of me. She dreamed about me before I even came to be. Dreams of how I would look, what gender I would and what my personality would be like.

My first love loved me even more after she laid eyes on me. My blue eyes gazing into her kind brown eyes. It was love at first sight. She has told me that there was nothing like it. The euphoria, the feelings that you never thought you could feel. The love that is so all encompassing, bigger than you ever thought it could be. Once we fell in love, our love was the center of both of our worlds.

They say that you experience real intimacy for the first time with your first love. No truer words have ever been spoken. The affection, the warmth, the thousand sweet kisses that covered me like a warm blanket. She tickled my back to put me to sleep, she hugged me and kissed my “boo boos”, she climbed into my home made living room tents and got under the covers with me to watch “Sesame Street” through the afghan holes. I will never forget the smell of her, or her face when she looked at me with so much love.
You take so much pride in your first love. I was, for sure, her pride and joy. Your first love is always trying to make you be the best version of yourself. Mine was always teaching me, encouraging me, pushing me to do my best and be the best me I could be.

In a good relationship, you learn from your first love. Mine taught me about perseverance – I would have to work hard to get what I wanted and needed and if I worked hard enough, and wanted it badly enough, I could get it. Mine taught me to be self reliant. No matter how many people I have in my life who love me, she told me, your best friend is always in the mirror. She taught me that it is ok to stumble and make bad decisions, as long as you pull yourself up by your bootstraps, dust yourself off, and keep going.

A first love gives you the confidence to feel like you are good enough for someone to love you as much as they do. I could not have felt more loved. No matter what struggles we had, we stuck by each other and weathered them together. We knew that we were there for each other, no matter what. And that we would go to the ends of the earth for each other.
Most importantly, your first love should teach you about unconditional love. Mine did. There is nothing I could have done that would make her not love me. Ever. And vice versa.

And so, for all of the reasons above, you never forget your first love. I think it’s clear by now that my first love was my mother, Elizabeth. She was the best first love I could ever have hoped for. And, on the one year anniversary of her passing, it becomes even more clear to me that all of the Hallmark “First Love” sentiments work well for me and mommy. The way she treated me was actually a wonderful model for the loves I had, subsequently, in my life. And, the love that I ultimately ended up with and created my family with.
Unfortunately, losing your first love is one of the most difficult things in the world. I have to say, this has been the hardest year of my life. However, because of the things my first love taught me, I kept on living. I went to work, celebrated holidays, nights out with friends and spent lots of time with my family, as she instilled in me how important that is. I feel such pride and happiness when people tell me how lucky we are as a family that we are so close. I don’t take it for granted.  I’ve tried to conduct myself in a way that would make her proud. I try to treat people with respect and love, as she did. She empathized with me, and I carry on that trait and empathize with others.She taught me about fairness and justice and, although it is not always easy, I try to always do the just thing.

I thank you, my mother, my first love. You have helped to shape me into a person who I really like. When I look in the mirror, I do see my best friend. As a bonus, I have many friends that love and care about me. I give you all of the credit.

I know that you are no longer with me on this earth however, I feel you in my soul. Just like the literature says you do feel about a first love. You will always be my first love and you will always be more special to me than you can ever even imagine.
Please continue to shower us with your love and wisdom. So many of us still need it. I like to think that you are even more powerful there than you were down here with us. You have a special place with God, because of the person you are. Even the way you passed, so peacefully and without suffering, makes me think that you are one of God’s favorites. To have Stage IV cancer and be told before by your oncologist before you are put under anesthesia that your numbers are down (which obviously made you happy), only to never “wake up” from that anesthesia, is a true gift from God. You never had to have that dreaded conversation that most cancer patients have to have about “how long you have”. You were never told to “get your affairs in order”. You never had to wither away in a bed/hospice while we watched by your bedside. It was fast, it was relatively painless, it was what you deserved.
The outpouring of love that your family received today is also a testament to how much you were loved and are missed. You really had no idea while you were on this earth how loved you were – I know that you feel it now. So many people were thinking of you today, my love, and wish you could have stayed with us a little bit longer.
So, you will always be my first love, as I was yours. I will always remember you and you will have the most special place in my heart carved out for you, always. I love you, of course, but, it is so much more than that. I’m going to  keep some of  those feelings to myself because if there is another thing that first loves have, it’s some secrets. Our are good ones, Mommy.

Until we meet again, I hope your are playing Bingo Bash and winning every hand, I hope that there is a casino that you can go to, I hope that you can see Big Brother (its’ such a good season!), I hope that they have an endless supply of Merit 100s and a nice glass of red wine for you at night, Knowing how much you loved to work, I hope God gave you a great assignment up there.  I know you are visiting us each day, I hope that you are catching up with your family, and most of all, I hope that you are remembering your first love, as I remember mine.

.
Forever,
Nicole

Me and Mom

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You were with us this Christmas. All around us.

You were present in the way we decorated and the food we ordered.

You were present in the way we opened our gifts – one at a time so everyone could see what everyone else got.

You were present while we were eating the clam dip, and the appetizers and the special bruschetta that you buy for Chris.

You were present when we got our bags full of fun “surprises” and you were present when the only one that really needed to open them was the first one to go since they were the same for all three of us girls and all three of the guys.

You were present in the kitchen, when we laid the desserts out on the big table and when I made coffee in the urn you have used since my Christening.

You were present in the way Uncle Mike and I did a shot as soon as he came in and you were there when we all sat around talking and laughing and remembering you.

Most of all, though, you were present in the boys laughter, in their joy when they opened their gifts and when they cried after, when we got home, because they miss you so much.

You were present when I looked at my sister, Lori, and how she interacts with Gavin. She is such an amazing mother. She wore your Christmas bell earrings and your Christmas socks. She is so much more like you than I ever thought she was. She is so strong. So loyal. We have always been close but, your passing has made us even closer. You are definitely present in that.

You were present last night when Chrissy handed out the bags of of “surprises”. See, she bought them. And her face lit up when each one was opened. She is SO like you. She is so generous, so loving and so good. And, I swear she looks more like you since you passed than she did before. You are present in her every day.

You are present when Daddy takes a picture of every present we open, when he laughs and when he cries and when he lets us love him to help him heal. He is more open and more demonstrative with his love than he has ever been. You are so very present in that.

And, finally, you were present in my heart. As you are every second, every minute of every day. And so, as much as we missed you – and believe me we did – you were there.

 

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Me and Mom

Thank you all so much for coming out to honor my mother. Whether you called her Mom, Liz, Elizabeth, Betty Ann, Aunt Betty, Miss Betty or “Toots”, like my dad, you are all here because she touched you in some way.

People often talk about my strength and I am quick to tell them, “Well, if you were in my shoes you would do the same thing, too. You do what you have to in order to survive.” In all honesty, though, I’m not sure if that is entirely true.  a huge part of the reason I am the way I am is because of my mother.

Mommy tried to shield Chrissy and me from the crappy stuff that was going on at home when we were very small. She was a mama bear with her cubs and we were her first priority, no matter how traumatic her own situation was, whether it be the collapse of her first marriage or her first serious bout with cancer when I was just an infant.

My mom knew when we were hurting and needed extra TLC. It was okay to cuddle in her bed to watch Rocky on the little black and white television. Bed times were not a priority – making sure we felt loved and secure was. It was also important to her that we loved each other with all our hearts. Anyone who knows us knows that we are referred to as NicoleandChrissy, as if it is one word. We are as close as two sisters can be. Mom taught us to stick together, and we have all of these years.

My mom picked a stepfather that treated us as though we were her children, every bit as much as his own. Poor Daddy, a single man suddenly had not only a wife but, two ready-made children who, as I mentioned earlier, had been through a lot and were a little lacking in the strict discipline department. He is our dad. We love him as though he is a our natural father. She picked a good man, a solid man and she loved him. That would be my father, Bob. When it didn’t look like Mommy was going to make it, Daddy as assuring her that he would look after his girls, all three of them. He loves us all the same. His heart is breaking for us and ours for him. Daddy and Mommy were soul mates. They just fit, like two pieces of a puzzle. Daddy would go to the moon if he had to get her a soda or a pack of butts. He would do anything in the world for her.

In addition to giving us a wonderful father, together they gave us a beautiful baby sister – go ahead and ask her – she’ll tell you how beautiful she is. We adored her! With her shock of black hair and adorable little smile, always making us laugh, always making us smile. Lori got older. Chrissy and I unclasped our hands for a moment and took hers. Since then, we’ve been a circle of three.

We had a fun mom We were allowed to mess up the house to build forts. We were allowed to pull up the basement rug to roller skate. our kitchen became a Lego Land, with no less than a thousand Legos in every corner of the room. We could make a mess painting. We could have friends over at the house whenever we wanted, and my mom made everyone feel welcome. We certainly didn’t have the biggest house but, there were always kids there. It was a warm and welcoming place.

We would spend lots and lots of time together with mom. And, she was PRESENT.  During the times that she was struggling to get by as a single mother, worrying about things we had no concept of, she was LISTENING when we talked, PAYING attention when we put on our plays and CONCENTRATING when she read to us for hours. Again, she was not just there but PRESENT. I can’t stress how important this was.

My mom always had an awesome ability to make the best out of every situation. Chrissy and I loved to watch her get ready to go out with friends while she blasted her Donna Summer music in the house. I remember how pretty she was with her dancing clothes on. I was so proud that I Had a mother that didn’t just sit and cry in a corner when she got divorced. She refused to settle for the fact that she was going to be sad for the rest of her life. She was young, she was beautiful and she was entitled to be happy. What a wonderful thing to show your little girls. What a beautiful example to set.

My mom was also fair. When we messed up, we paid for it but , she picked her battles wisely. She was, after all, so wise. She really tried to think about how whatever we were going through was affecting us and cut us slack accordingly. I always felt like she had our backs. We came first, no matter what.

My mom also taught us to have a wonderful work ethic. I can’t remember a time when she wasn’t working hard to make sure that her family was provided for. I remember helping her address envelopes at the kitchen table when I was just a kid. She would get us ready for school, work all day, help us with our homework, get dinner made and everything prepared for the next day. After that, she would take all of her paperwork out and work at the kitchen table until all hours of the night. I was truly in awe of her. She seemed to never tire. She worked her way up from the mail room to a professional position due to sheer will, hard work and determination.

Anyone who knows my mom, all of you here, knows she was a true patriot. WE would make fun of her because almost everything she owned had some sort of flag or red, white and blue on it. Her dad served at Iwo Jima and she had a special affinity for the Marines. She was especially proud of my husband, Al, who followed in my grandpa’s footsteps. She loved all of her son-in-laws deeply. She loved to sit on the front deck that Jay built her and enjoy the beautiful trees that Al planted for her. Chris and Mommy loved their talks about finances (LOL) and their trips to Mohegan Sun. She treated them as if they were her own, and she loved them all very much.

My parents sacrificed so that we could have. I found out as I got older, and by accident, things that they had done that I hadn’t even known about so that I could have something I wanted, so that I coud go to the college I wanted to, to that we always felt financially secure. They sacrificed and did for us . And not only did they not expect anything in return except for our best efforts, they never even let us know the sacrifices they made. They truly were an awesome team and wonderful parents.

My mom taught me strength. The first time she was sick, I was too little to understand how bad it was. We were so blessed that she survived and that she was able to be there for me and my sisters. The second time she got sick, I was in college and just devastated. We all were. Despite the fact that it was happening to her, she comforted us. Now I know. I know how scared she was, how she probably felt like screaming and yelling and crying and railing at God but, she stayed calm, and she comforted us. And, then, when she recurred right after I was diagnosed, she took care of me. She was in so much pain but, she cleaned my house and she watched my babies and she talked to me and loved me. She handled the loss of her own parents with grace and class. I hope that I can do the same now.

My mother was selfless. She would give you her last dime if you needed it. She was a wonderful grandparent to her grandkids. She would think nothing of breaking out into a full clog dance in the middle of a store, singing a song at the top of her lungs, if it would make one of her beloved grandchildren laugh. My oldest son told me just the other day that he will have his kids in his twenties just so that his kids can know his “Mimi”. They love her so much. It’s palpable when she is in a room with them. I am so sorry for him that his wish will not come true.

As much as she loved us, her grandchildren were the real loves of her life. She was so proud of all of them and each of them had their own special relationship with her Michael was her first grandson. They loved to talk about anything and everything under the son. They had such a special bond. Jack she called her “comfort baby”. He was the only thing that could make her happy when I was sick. And Gavin, her baby. She taught him everything. She used to say that the kids were so smart because of their Mimi. None of us had anything to do with it.

I always think “What would my mother do?” when I am faced with a situation where I am unsure. It’s a true gift.

My mother’s story of strength and courage has helped to make the lives of other people who were diagnosed with cancer a little easier. She gave them hope and courage. She was a tremendous example of how to live life with a serious disease. For mom, it was not about just going through the motions. My mommy lived, as you all know.

Mom used to say that Chrissy, Lori and I were so different and that each of us had some of her in us. WE have every intention of sticking together and hope that together we can be half the woman she was on her own.

IN addition to her trials and tribulations, she was blessed with a wonderful family, a loving husband, children who adored her and grandchildren that idolized her. I am not sure how we will navigate through this life without her, but I am confident that the strength and courage she has passed to us will not end with the physical loss of her on this earth but, will live on in us through her spirit.

IN the end, Mommy didn’t suffer. She was at peace. I have no doubt that we will meet again. She will be as beautiful and loving as always. Until then, I am saying goodbye to her from Daddy, Al and me, Michael and Jack, Chrissy and Jay, Lori and Chris and Gavin. And, of course, from Hope, Barkley and Brody.

We love you, Mimi, and we always will.

I’m unsure of the author of this poem, but my cousin Cathy sent it to me today, and I think it will bring us all a little comfort:

“I am standing upon the seashore.

A ship at my side spreads her white sails to the morning breeze and starts

For the blue ocean.

She is an object of beauty and strength.

I stand and watch her until at length

She hangs like a speck of white cloud

Just where the sea and sky come

To mingle with each other.

Then someone at my side says:

“There, she is gone!”

Gone where?

Gone from my sight. That is all.

She is just as large in mast and hull

And spar as she was when she left my side

And she is just as able to bear  her

Load of living freight to her destined port.

Her diminished size is in me, not in her.

And just at the moment when someone

At my side says, “There, she is gone!”

There are other eyes watching her coming

And other voices ready to take up the glad

Shout;

“Here she comes!”

And that is dying.

Mommy, go in pace. Your parents, your friends, cousins and everyone that you have loved who have gone before you are waiting. They will keep you until we meet again.

My mom’s favorite expression was “county your blessings”. She certainly did. To honor her memory, I ask that you all go home tonight and do just that.

I love you, Mommy. And I always will.

All of Us

They were just kids. And a mad man entered, just before Christmas, with an arsenal of guns, and he killed them. Well, at least some of them. And, their beloved principal, and their school psychologist and teachers, who died trying to protect them.

I am flip-flopping between crying and being unbelievably angry. Between feeling antsy and helpless and like I could literally throw up. I am nauseous, I am weepy, I am so very, very sad.

And, as is my way, I am thinking. I am again going back to my karma is bullshit theory. What did these children do to deserve what happened to them? The pain and grief that has only just started to hit these poor people, will not be limited to the parents but, will expand outward exponentially.

I am thinking, what kind of world do we live in that something like this could happen? I watch my president crying, kids no older than nine being interviewed on television. My ten-year old doesn’t know what to say. He is trying to talk to me but, I can see him struggling with the questions to ask. It is so beyond the scope of anything I can imagine, how can I expect him to? My older child is avoiding, which is what teenagers tend to do. We have told him that we are here for him, to talk, if he needs to. I hope they don’t have bad dreams tonight.

I can’t help thinking about the wrapped Christmas presents. The presents that those poor parents bought, probably just a week or two ago, and probably have either wrapped by now or have been stressing about wrapping  before next week. I don’t know why. I just keep thinking about those presents.

I wonder why we fight so hard to stay alive when this is the world we live in? I wonder why our every instinct is to stay on this earth, when things like this seem to be happening with frightening regularity? I wonder and wonder.

But, I know the answer. As I sit here and watch the news, and see the stories coming out as the day goes on. I know as I see the teacher who saw two children out in the hallway and risked her own life to open her classroom door and pull them in to save them. I know as I see pictures of the little kids hugging and comforting each other. I know as I see the President cry and the police running into the school, with looks of determination of their faces, to save as many of those babies as they possibly can. I know when I see the picture of the principal, a beautiful young woman, with five kids of her own at home, who was sitting in a meeting when she heard the shots and, instead of crawling under a desk, ran out to help her “other” kids, her students.

I know when I see the thousands of people at the vigil in the neighborhood church tonight. When a teacher interviewed says that she told her kids, even though she was certain that they would die, that they would be ok and that they were so very loved, lest that be the very last thing they ever heard in their lives. She held it together for the sake of her students.

I am so very sad but, as is often the case with me, I am trying to look for any glimmer of hope (a recurring theme on this blog, as my faithful readers know) and I am not disappointed tonight. Although I can never even imagine the pain, the heartbreak and the devastation that those who lost loved ones in this tragedy will have to endure in the coming days, weeks and years, I already see the spirit of the people in that town. They will help their neighbors, their friends. They will shower them with love, they will watch their surviving children, they will cook for them, they will hug them, they will attempt to help them get through this, at any cost.

And that, my friends, is what we have to try, try, try to focus on. The good in the human spirit.

Please do not focus on the evil and misguided actions of the shooter.

It is normal for us to mourn. It is normal for us to be angry and sad. I am. I will be for quite some time.

But it is important to remember that God has already welcomed all of those little angels into heaven, and has thanked and guided the heroes of today in, as well.

If today teaches us anything, it is once again the lesson that life is a very, very fragile condition.  Please remember to try to see the best in people, to remember to count your blessings every single day, and to hug your loved ones often, with passion, and with a love so big it can crush you.

May God Bless and Keep all who perished today.

As many of you know, I have been researching how to turn this blog into a book (or a “blook”, if you will). One of the suggestions was to get ‘guest bloggers” on your site, to increase awareness of your blog and to keep people interested. The guest blogger should have a similar subject matter to talk about, and have a similar tone as what you have been writing.

I immediately thought of Trish, a girl I went to school with and who inspires me every day. Both she and her two children have helped my soul in more ways than you can imagine. Their story touches my heart and I am happy to share this with you now. I hope it makes you feel and think as much as it does for me.

Nic and I went to the same high school but did not run in the same circle.  We didn’t even know each other.  It took a little girl by the name of Olivia to have us connect on Facebook.

Olivia and her brother Mikey were born with a very rare and terminal metabolic storage disorder called I-Cell.  They were both born missing the lysosomal enzyme which breaks down the complex carbohydrates in the cell.  Without this enzyme, the “junk” in the cells has nowhere to go and eventually destroys the cells and the organs.

Olivia and Mikey became Facebook sensations because of the videos and the pictures and you could tell that these two kids, despite their disabilities (can’t walk and very small in size) – it wasn’t about what they couldn’t do – it was about what they COULD do!  People would look at the videos and the photos and just get a chuckle at the zest for life these kids have.

Olivia died in my arms on December 11, 2009 – 10 days before her 5th birthday.  Below is my last picture with Olivia – she died a few hours later.  I had such hope on this day – they were going to get her off the ventilator and I could hold her in my arms again with no tubes or wires and she could talk to me again, I could hear “Mommy” and “Love you Mommy”.    Instead, she left my arms to fly to Heaven to do her work up there – to guide us all, to help us realize that life is too short, to not take things for granted.  To live – and not just exist.

After Olivia (a.k.a. “Cookie) passed, the outpouring of support was overwhelming.   Family, friends, friends of friends, strangers  — reached out to me with support, sympathy and just to let me know that they were there for me – and Nicole was one of them.    It took me a week to get through all the emails and voice mails.  People didn’t know what to say to me – I was avoided by quite a few because they didn’t know how to address me (and just as an FYI – if someone loses a child, all you need to say is “I’m sorry and I care” – acknowledge it and don’t avoid it – -it just makes it worse!).  Nicole, despite the animosity that she faces, the pain and the unknown, she was there for me and I will forever be grateful.  A year and half later, we still have not physically met (I am in Florida and she is in New York) but she and I have this bond like we have known each other all our lives.  Our situations are bit different – she has a disease that SUCKS and I have lost a child and will have to address this again when it is time for Mikey to earn his angel wings.  But what is not different?  The two of us are SURVIVORS!  We don’t dwell in the negative.   You can’t dwell in it – it will pull you down and yes, the both of us have our pity parties and wish that we could have a day like any other “normal” person.  However, our worlds our different from others and below is a story written by a mom of a child with disabilities – and this was the eulogy I read at Olivia’s funeral:

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Nicole and I are both on a trip we did not plan.   But on this trip, wonderful things have happened.  We have met each other, we have realized the strength that we have, we realized our true friends, and we realized how absolutely blessed we are.  Holland isn’t that bad of a place after all.

Olivia Grace Armand

12/21/2004-12/11/2009

http://www.OliviasCookieJar.org

Someone died a couple of weeks ago. He was here, working and living his life, and then he wasn’t. I had spoken to him about a month ago, and just gotten an e-mail from him a few days before he passed. I had no idea that he would die.  I mean, I knew one day it would happen but, not that day.

It messed me up. He was someone who I had gotten closer to recently, when he was diagnosed with cancer.  I knew him through work and had always liked him but, didn’t know all that much about his personal life; his likes, dislikes, what his home looked like, what kind of music he liked. I knew just that he was married and had children and we were in the same industry.

When he told me that he had cancer, I tried to help. I told him that he would get through it, that he would come out “on the other side”. His treatments were especially brutal, and I know that he was exhausted and emotionally drained. His sister actually wrote a comment on this very blog while he was having his last treatment. She was kind enough to tell me that my blog had helped to give him a “boost’ before treatment.

He was diagnosed in September. That was in January. His last treatment, he wrote to me in an e-mail. He was so excited and I could picture the smile on his face.

He e-mailed me in March that his scans looked good.  He had a follow-up scan scheduled for May but, he was positive. He thought he had beaten this thing.

And then, I got the word a couple of weeks ago that he passed. I had no clue. Again, I had gotten an e-mail from him a few days before and he did not mention that he was sick. I found out later that the cancer had, indeed, come back and that he had undergone more horrendous treatment, only to get an infection and pass away.

And, so, I don’t know how to feel. I cried. I got scared. If his could come back, so could mine, right? I felt guilty for even thinking about myself when it was someone else who died. I felt that thing they call “survivor’s guilt” – why did he die while I got to live? Being honest, and that is what I am here, for better or for worse, I think that’s bullshit. I don’t feel guilty that I lived. I feel extremely blessed and grateful and in awe and other feelings that I don’t even know how to put into words.  And, I felt extreme sadness for his wife and for his kids and for his friends. And, I felt angry when I heard someone say he “lost his battle” with cancer. That’s bullshit, too! I refuse to give that horrible black hole of a disease any sort of victory.

I was glad, though, that he read my blog and it made him feel good and hopeful. I was glad that every time we spoke I asked him how he was and told he to hang in there and to stay positive and to not give up. I hope that he enjoyed the “space between” his good scan and his crappy one, even though that time was short. I hope that he hugged his wife more and told his kids more often that he loved them.

I hope you do the same, even if you are healthy as a horse.  ESPECIALLY if you are healthy as a horse.

Someone died a couple of weeks ago. I’ll miss him. I hope he is not hurting anymore.

And, life goes on……..

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