Wednesday, June 8, 2016

An important race track. On so many levels.

"🎼 🎧 🎹 🎻 🎤", the music played the background. 

It was faint. Also blended into the muffled sound of other shoppers, beeps and buzzers. 

"that's a stupid song", I mumbled to myself. I took a deep breath. 

"🎤 🎻 🎹 🎧 🎼", the music played in the background. 


Its no longer faint. I can't here the other people anymore. The Isle smells like a mixture between molded rubber and pet food. This music is incredibly sad. Its cold in here. Should be warm.

"why the fuck would a grocery store play such fucked up sad music!", I mumbled loudly, trying to fight back... 

I was searching deep .. Trying to focus on the dog food. The price. Color of the bag. Then I thought of Fallon and how she hasn't had regular dog food since breakfast on tuesday. She ate, and she loved it. It wasn't the regular. But I thought about how unfair this all is to Fallon. I felt as if I had let her down by not giving her dog food for a couple of meals. 

TO FALLON?  I let Fallon down? 


I can't hold it back. 
No Mike. 
Fight it. 
We are in a grocery store. 
Keep it together. 

Deep Breath.

Ug. I need to get out of her. 

"ok. ok. ok.", I said out loud hopping no one else was in the isle. They will think Im crazy. I haven't shaved, or had a hair cut in a week. I smell. I need a shower.

When will I have time for a shower. 


In through the nose. Out through the mouth. 

Stupid sad songs. I hate them. 

Then it came. It overpowered me like the ebb during a bad tide. ??
I could not stop it. 

Thats OK... :)
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Crying is good. 

The above happened this morning at the Market Basket. Kezia and I were on our way back home from Kezia's yoga class. She was in the car. 

This is my reality, however Not a common occurrence. Most of the time I can make it out of the store, or where ever I am at the time. 

Its part of our exclusive dues. These dues may or may not be due every day. But on the days they are due.. there is little or no warning. 

Positive self talk. Many counts to 5. Sometimes 20. Sometimes to a 100. Deep breathing and visual realization exercises. 

Thinking things through logically. Talking.. or for me, venting to others.

A lot. To much I think sometimes. I do fear I wear out my welcome to my buddies when I need to vent. 

Just an excuse to avoid. So I push and keep asking. 

They keep listening. 

I have an extremely large amount of pressure on me right now. I am the caretaker of my family, business & home. With one of my family members sick. The other dead. 

By the way.. we are coming off of Saoirse's birthday week. Its been an excruciating amount of pain this year. 

I put so much into other people that its easy to neglect myself. 

This afternoon I was sitting at my computer working and waiting for Kristina to bring Lochlan home from a morning of fun and adventure at Grammy & Grampa camp. 

I was overwhelmed by the fact that we will need inventory soon. And we need the cash for it. ORRRR all of the medical facilities that owe us money can pay us on time. Or not in 45 days. We will make it. 

Customers. Inventory. Get more customers. Clinical trials. Kezia. Saoirse. Lochlan. Fallon. The house. The camper.

WE need to sell that thing. Now. We need the money. 

Its a tremendous amount of stress managing a start up in the medical industry. Its a constant uphill battle. However there are great roads on the horizon. Its a far horizon. 

I was feeling very stressed and Lochlan would be home soon. 
I had to get it together. 
Then I received a text message out of the blue from Emily. It changed my day. 

"You need to take 10 minutes a day strictly for yourself. It's not optional -- you need to mentally have something to look forward to and a chance, even a small chance, to reset every single day. As a caregiver you are taking care of everyones needs and it's easy to say your 10 minutes a day can be skipped bc there are "more important things" to do but you have to fight that instinct. Im insisting that you do. I know that 10 minutes a day isnt enough obviously but it's something and it's consistent and it's mandatory. If you get sick or you burn out youre no help to anyone -- to put it bluntly -- so you cant allow that to happen if for no other reason than that. And taking care of yourself -- including taking a shower and getting dressed every day whether you feel like it or not -- is part of that insurance that you can keep going and keep being there for the people who need you. I know youre putting you last bc they need you but if you neglect yourself youre not helping them either. Esp L who's watching you you know. Please trust me on this even though it goes against what youre feeling right now..................

Your 10 minutes can be a walk by yourself or a shower or a beer or whatever you want -- whatever makes you happy in that moment.........."

I let her know that she made not only my day, but also my blog. 

I felt it was important to share this because everyone needs a friend  like Emily in their lives.

Its important for me to let people in. To humble myself and step back for a moment and say "wait what?" - (thank you Dean Ryan from Harvard Graduate School - Ill write about this later and no I am not a Harvard grad, but would love to get my MBA there. Or Doctorate. I saw this online)

Sometimes these people are already in our lives and we just don't know it.. 

or want to see it. Or accept it. 

For me this happens when I put blinders on and get so focused on projects. This creates more stress and then that stress comes out sideways. Usually frustration and anger. Yelling. 

Emily politely, yet bluntly told me to remove my blinders. 

I agreed. My day went on. We had a great intake meeting for work with the NEPDC. 

I am still behind in EVERYTHING. I am still stressed. I am still deeply, very deeply sad. 

However my perspective has been a bit different today and that has greatly helped my emotional self and allowed me to stabilize my day. 

And so are my expectations on myself. 

Thank you Emily. 

Tomorrow I start all over again. But I will take that 10 minutes. Ill tell you about it. 

Lochlan and I had a great art filled afternoon building a race track out of construction paper for his new matchbox jeep. I video'd the entire time and will edit the video and put it up this weekend sometime. Until then here is a small blurb to end the night. 

I want to start off by saying that our life does have a lot of positive. I will write about it I promise. I am working on finding my writing balance. I know what I want to say, but sometimes I don't know how. I have a lot to say.

Its all part of our club

I also need to mention that I am, and can be pretty forward in my writing. Sometimes blunt. Yesterday I wrote about support. Let me say that there are some people who go above and beyond to be with and to help Kezia and our family. You know who you are. We know who you are.  I am not speaking to you in some situations I write about.

I do not, nor will I apologize for what I write. This is my life and I'm writing from my perspective.

Also. I am communicating how I feel and on what I see, and hear about from Kezia and our life in general. She tells me her needs and wants. We do communicate - sometimes not very well, however we make the effort with each other.

I want to write dialog about something that happened a few years ago. But I'm a bit thrown off on writing today. I am not sure if its a "self-conscience" think or what. I started to think last night that no-one will read what Im writing, and if they do; they will think its stupid and just "another cancer blog about a family that lost a kid to cancer".


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Ug.. Tuesday mornings are now the most stressful day of the week for me. It use to be Tuesday & Wednesday. So things are getting better. My anxiety races and my heart pounds hard. Its bad sometimes.

Kezia has treatment on Tuesday mornings. When she could drive, she would drive and meet her mom up in Haverhill and her mom would take Lochlan to her house, or shopping, or the studio, or park. Kezia would go on to treatment.

This gave me a whole morning from 7am to noon or 1pm alone. No one home but me and the pup. Work Time.

Time for the daily dues for our club.

That sounds like a normal morning for most, or some. Wife or hubby takes kids to school, daycare, nanny, granny, shopping, etc.. A car is involved. ..

Here it comes.

For me, when my family gets in a car without me and I am not driving, I panic. I fear something is going to happen. I can not protect my family if I am not with them. Its overwhelming sometimes.

Its scary enough when my child drives in the car with a family member. It gets even worse when my child and/or wife gets in a car with a non-family member. I feel scared and vulnerable in that moment.

Deep breath.

Plus. I do not trust other drivers. Not anymore. It wasn't long before Saoirse was borne that texting became a big thing. This added another distraction on top of tuning the radio, talking to others in the car, thinking, looking for that perfect song on the portable music device, reading a book, grading papers, reading the newspaper, drinking, smoking, smoking pot, reading a map (paper and phone), putting on makeup (seen both men and women do this on highway), etc.

I have done a lot of commuting in my life. I'm sure you have too. I've seen some scary messed up stuff that people do while driving.

Now texting.

Yes, I have tuned my radio while driving, talked to others, I think while driving and have eaten while driving.
Yes I go to the extreme sometimes. Its part of the club. Its a constant fear. Its getting more manageable though.

Monday, June 6, 2016

An Important PB & J and a Smile Post #3

"Daddy.................. Daddy.", said the determined little voice.
"DADDYYYYYYYYYYYYYY. ...............DAAAAAAADDDDDDDYYYYYYYYYY. AN YOU LEAAAAASE UM UP EARRRR", screamed the more determined little voice in perfect toddler language.

I just put him down for bed. Its 7:45pm and Lochlan has been up since 7am. He missed his nap. I kinda did that on purpose (its not wrong).  I really needed hi to go to bed and go to sleep. Lochlan sometimes gets out of bed 2 or 3 times before he settles. Usually he needs a "sip" of water; or he has to "all of the sudden" poop. Or he wants  to talk. Or he wants me to rock him in the rocker just "one more time". Or he wants me to sing to him. Usually muffin man on drurey lane.

Ug. I am so tired and hungry and I have some great momentum going on putting stuff away and cleanup up our clutter. I feel pretty good about what I have done today and better yet, its going to make Kezia feel good. Something about a non-cluttered house. More importantly, a non-cluttered entranceway.  I still have about 2 hours worth of work to do and I still have not eaten dinner. Its going to be ok; Ill get it done and he will go to sleep. Ill be ok.

Deep breath.

"DADDYYYYYYYYYYYYYY. ...............DAAAAAAADDDDDDDYYYYYYYYYY. AN YOU LEAAAAASE UM UP EARRRR PLEASE. please um up earrrr leasssseeee", he yelled and sadly whispered all in the same sentence.

I need to let him cry it out a bit. I can be strong. I kept working - I did "8" loads of laundry yesterday. I shifed some wet clothes to the dryer and then focused on the broom. I needed to sweep.


Crying baby. Broom. Need a clean floor. My mind shifted to a night in the hospital with Saoirse. Many nights actually. Crying. I need to sweep. She threw cherrios and french fries on the floor and I need to clean it up. She won't stop crying because her scar hurts her. Its healing. But it still hurts her. I can't help her. I can't take the pain away...........


Sorry. I digress.

The crying baby is not Saoirse. Its Lochlan. I quickly snapped back and shook my head and took a deep breath. By the way.. its difficult to describe this but the type of digression is the kind that forces me to stop everything and just stand there. I feel the breath leave me. Yes, it knocks the wind out of me.

Its part of my club

Anyway, back to the story. Lochlan kept yelling for me to come up. I gave him 5 minutes and then answered him.

"Why are you out of bed Lochlan?", I firmly asked him.
"I need a sip leaaassssseeeeee!". He firmly stated to me.

OOPS I forgot to give him a sip. Oh well..

"ok sorry bud. I forgot too!", I said as I walked up the stairs. There are some dust bunnies on the stairs, I need to vacuum. Tomorrow Ill start pulling stuff out of the bedroom; when will I have time to prime the room before everyone gets here on Sunday to paint it.  I wonder how Kezia is doing. Is she eating? I hope she is sleeping and getting rest.....shit that office needs a lot of work.. I need to get that done.... oops.

"ok thats ok", my toddler said in an understanding voice.

He had is sip and went to bed.

------------      ---------------      ----------------      ------------------

Doing that much laundry is good.. However it creates this: and there is more in the dryer now and an overflowing basket waiting to be dryer. I have my work cut out for me :) Life. 

This morning I am stressing on a few different things. 

One: Lochlan. 
Two: Kezia
Three: CareAline: Our business
Four: Mortgage: we are on the verge of foreclosure

With being a single parent right now: let me clarify, I am not single. Currently I am single parenting due to Kezia's treatment, time management is key. Wish I was better at it. 

I stress that Lochlan isn't getting enough exercise and learning time. So Monday's are one of the only days I do not have any help at all. So I have gotten into the habit of plopping him in front of the TV with his favorite learning shows - Bob the Builder; Thomas; The Hive; Learning Math. Or Before the Land of Time. It depends on his "mood". This is no longer acceptable. So starting next Monday we will do something completely different and no more morning TV. 

You will see.. and read about it. 

Then its Cherio time while I cook him an egg and toast, or Oatmeal with peanut butter. Sometimes pancakes.

He eats and watches, I make sure he has plenty of water and I get caught up on Emails for our business CareAline - 

Then I think about Kezia. I worry about her. Yes because she is sick. But more now because she is not getting the kind of support, both emotionally and mentally, that she needs. She desperately needs this. 

Kezia decided to do non-conventional treatment for her relapsed Hodgkins Lymphoma. (see her blog:

This seems to have changed the course of her support after making this decision. This is complicated. Very complicated. Saoirse is mixed up in this somehow. So is Lochlan. 

She is still a human being. 

Type of support. I am angry at a lot of people for basically shitting all over Kezia. Here we go. I am off and running now........

Ok... Soairse. Her birthday was on June 1st, 2016. She would have been 6. 

While there were a couple of text messages and posts on Facebook to Kezia and myself - no one called us. Apparently it states on the internet somewhere that your not suppose to contact the family who lost a child on the said lost child's birthdays because it will remind them of their child. 



This was an excuse from someone once on why they don't call Kezia. 

You are not that special. You do not have the power to "make us remember", or "trigger" memories of our daughter. 

It is part of our exclusive club's daily dues. Oh, these particular dues are "Due" as soon as I wake up. No exceptions. Although the dues get easier to accept and cope with as time goes by. 

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.......... I had to stop writing and walk away. Its been a few hours since I wrote the above. 
I was starting to get really pissed over some things I have no control over. First I discussed kezia getting Shat on by some (a lot of) people for her Tx choice; then I touched the surface of people not calling on Saoirse's bd. I felt an immediate intervention was necessary. (Please note: If you did send a note on Facebook or by Text then I am not talking about you)

Yes, I will let it all loose at some point. Because I need to tell you about it all. Its important. But not today. 

I need to be there for Lochlan and me sitting on the computer potentially writing something I may regret, only to fuel my frustration and anger, was silly and not fair to him. Nor do I need that added stress. I asked him if he wanted to go for a walk and he immediately said, "YES PLEASEEEEEEEEEE". He is so cute. 

Call. It helps. Not every day. Once and A while goes a long way. Don't be emotionally restrained. We are not. I assure you. 

I accept very few excuses. As a matter of fact, I don't want to hear excuses. At all. Or justifications. All of that does not matter. I am not discounting your feelings; or the fact that you may not know how to handle the emotional part of it.. I get that. I don't have time to hear it. Neither does Kezia. 

She needs to hear "I love you". "I am here for you". Or a simple "Hi". 

My business needs to be tended to.  I'm glancing over at Lochlan's PB & J and I am guessing I have about 10 more minutes of keyboard time before its time to wash hands and go back outside to play Frisbee. Oh, he heard me. To late, he is rushing to eat so we can go out :) 

Until Tomorrow. 


Saturday, June 4, 2016


"Hi, I need to find organic rated pesticide to get rid of flea Beatle and slugs on my tomato plants.  Which way to the safe spray soaps?" I asked the the guy in orange.

My PawLaw told me what was wrong with my tomato plants. I needed to fix them right away.

Wait, wait. Should I be doing this? Why am I here asking for this. Will my kid get cancer because I spay our veggies? fuck. What do I do? What if I spray it and Lochlan develops a lump after eating the tomatoes. Let me read this label again. Fuck. Fuck it its rated for "organic gardening". Apparently I can eat my veggies and fruit right away after spaying. Whew.. that makes me feel better.

No it does not.

"Isle 3 sir, follow me", said the ever to happy to help me guy.
"I'm good", I quickly said.
"I'm going to take a quick look at these riding lawn motors first, thank you".

I hate it sometimes when I'm escorted to the isle and area that I need. I feel like I am obligated to rush. They always walk fast.

Walk fast. fast.

Sorry... my mind wonders sometimes. Its part of my exclusive clubs daily dues.

I have a rare night tonight. I planned this because I needed this.

You have no idea how much I look forward to a night where I can do what I want and not have to stress on when Lochlan is going to stop getting up out of bed and actually go to sleep. Or worry about if Kezia has had enough food. She is with Emily and I know she loves that. She needs that get away too.  Or need to plan Lochlans morning. This freedom for just a few short hours is refreshing.

Sort of.

Kezia is at Emily's and Lochlan is Grammy and Grampa's for the night. I am by myself tonight. rare. I planned it because Kezia is very sick. She need to be with Emily this weekend. Ill go more into this later.

The dialogue above happened tonight at the the Home Depot in Danvers. The one my side. Yes.... Danvers has an abundance of home improvement and garden centers. I told myself that I was going to take this rare opportunity to relax. Sit and eat. Sit and watch something with out stressing.

What did I do? I worked in the garden. I added string to my pea stalks so they have something to grab onto . I listened to music in my garage. (my man cave). I stressed about Kezia. Hard. I think about her all the time. I worry. I am angry. She shouldn't be sick. Fuck. This is happening all over again. I need to clean the house. I need to vacuum and clean our bedroom. She can't breath dust and mold. I need to change sheets. Shit I forgot I need to get lochlan's laundry started. Wait should I do towels. Let me take a look at the bathrooms. I think I should clean and vacuum. Wait wait. I need to slow down and focus. ..... Wait wait wait. Lets focus. NO NO NO NO NO

Don't think about it. NO NO NO NO NO.


I can't tell you about the images or situations that cause me to scream NO NO NO NO. Not yet. It will scare the shit out of you. Get to know me more.

This happens. I ramble think. Its part of the dues.

I am going to make my nachos. My teeth hurt ( I need 2 root canals). I wonder if Saoirse's teeth hurt. Did she ..

NO NO NO ... I see the team around her. They are trying to incubate......


I say "No no no" out loud. It helps to rid of it. (Only people in the club will get this.. Sorry)

Ok.. in the morning I can finish planting. Where are those pumpkin seeds?

No.. I am not going there tonight. Does Kezia's teeth hurt? Do her tumors hurt? I wonder how her hear and breathing are tonight.. Wait wait.. I can't.

I am suppose to be relaxing and decompressing. I am going to find a movie to watch. I told myself that I should watch a movie. It will help to slow my mind down. My wife is sick.

Sometimes having time alone isn't what its cracked up to be. There is only a few places that I have had total peace since .. Well, since Saoirse died. Ill write about that later.

Lets give it a go. I'll write tomorrow about the movie. I have no Idea what I'm going to watch. But you will hear about it. Ill also write more about Kezia. I need to. Fucking cancer.


Friday, June 3, 2016

I belong to an exclusive club. You can not join.

"What can I get ya?" Muffled the lady
A few seconds passed.
"Hello? Do you want a drink and can I get you a menu?"

I was in space. I knew someone was talking to me and I knew why I was there, but I just couldn't comprehend what she was asking me.

I can do this. Deep breath............

A few more long seconds passed while I fumbled through the drink menu pretending to look. I knew what I wanted, but I just needed a few short micro seconds to compose myself. 

I forced myself to look at her and speak. 

"Pint of Guinness", I said with a smile.

Then I sat and did everything I could to focus on the Red Sox game on the many TV's above the bar. Focusing in on the batters stance; swing; facial expressions. Then I focus on the pitcher. His eyes; stance; shoulder placement - the crowd looked very red. Lots of people - I wonder what their lives are like. Then I focused on all the people in the bar and wondered how many people were playing trivia. Then back to the TV. 
Whew. I made it. I think. I can do this. Deep breath. 

My heart rate was up and pounding. The kind of pounding that made my chest bounce. I recognize the pounding. It's a familiar friend - or foe. I'm not sure yet. I forced myself to close my eyes and take a deep breath and release it slowly.

My drink showed up. I was a bit out of my fog now and I said with a smile, "Thank you, can I see a menu please?" 

She grabbed one and gave it to me. 

My heart pounded harder and my anxiety was high. My sadness and grief came over me and I just put my head down. Deep breath

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Ok now lets back it out a bit and take a larger look at this from a different perspective. 

The story I wrote about above is real. It happened on June 1st 2016 at the Sylvan Street Grill in Danvers, MA. It was Saoirse's birthday and she would have been 6 years old.  She died of #neuroblastoma. I go there every year on her birthday and do the same thing. I sit and order a pint of Guinnes, take a picture of Saoirse's ashes with the pint and then I sit and think about her smile and talk to her in my mind. Then I drown myself in the baseball game and decompress. 

Once I finish my beer - usually take about an hour to drink the pint of Guinness,  I go home and work. Ill tell you why Guiness and Sylven Street later. Its important. 

I am a dad and a husband. My name is Mike. My wife is battling relapsed Hodgkins Lymhoma and our daughter Saiorse died on December 13th, 2011 at the age of one and a half. We also have a 3 year old son who is amazing and healthy. My wife and I own a start up that is focused in the health care sector; vascular access and medical product innovation. 

This rekindling of my blog is a necessity for me. I need a sounding board, story telling and decompression medium to talk about my everyday life essentially being a single parent while my wife is in treatment and getting better, taking care of a wife with cancer, taking care of a 3 year old, grieving the loss of a child from cancer and running a start up. I need to talk about everything. My every day is a fine line between chaos, calmness and everyday life. 

This is a bit of my everyday life. It usually starts at 5am and ends at midnight or 1am 

I get up at 5am (usually). I put on water for coffee, let the dog out and then start focusing on the day. Worry. Stress. Anxiety. Think about Kezia. Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking; Saoirse - My daughter. 
There is laundry to be done and started, trash to be taken out, dinner to be prepped (take out frozen stuff if needed), ingredient inventory for dinner, breakfast and lunch planning, child care planning Kezia care planning and emails for work. Oh.. did I mention that I need coffee and need to take the dog out? 

Then I focus on work. Think about Kezia. Worry. Stress. Anxiety.  Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking; Saoirse - My daughter. 

Customers to take care of, inventory to manage and my daily schedule to revisit. Get the boy up; make sure wife is ok and still sleeping; eat; cram in as much stuff as I can in the short window while Lochlan eats. Drive Kezia to treatment, drop off Lochlan at inlaws (couple days a week) then - list to do for work; yard; car; dishes; laundry; food for Kezia; spend time with Kezia. Sometimes cut grass; yard work; clean; write and read. Whew.. Then feed lochlan lunch if needed; get him back outside to play to wear him out for nap. Teaching and parenting time. Bugs; spiders; cool; yellow dump truck; teach to throw frisbie.   Work. Thinking about work. Kezia. Saoirse. Fallon. Lochlan. Business partner. Hospitals. Etc. Play with Lochlan. Run around the yard. Errands  post office; bank (hopefully); Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking Thinking; Thinking; Thinking; Thinking; nap time for lochlan; It keeps going like this until all is in bed and sleeping. Then I work more. Work Work Work. Laundry. Plan next days work, menu, errands. Worry. Worry Worry. Kezia. Make sure she has everything she needs. Stupid friends. Awesome friends. Family.  Oh, and I squeeze in food for myself once and a while. 

I think that by now you may be starting to understand that life is busy. Like most. 

I will start writing on a regular basis. Everyday sometimes. About my thoughts, frustrations, why I may have cried at dinner, why I yelled at the moron speeding down my street. I'm going to write what its like to start a business and bring products to the health care market innovated by Kezia in a desperate time of necessity and its frustrations and successes in the uphill battle to succeed in the health care sector; all at the same time as managing all of the rest of the stuff in my life. I hope to connect with you. Relate with you and learn from you. 

You can look at my past post's. But please know that I am not the same person that wrote those. I was chest deep in cancer treatments for my wife and infant daughter and caretaking in the frustrating world of cancer treatment Then at the end, an immediate grieving father after watching my daughter die a horrible death.

My writing is much different. I am 5 years out. I am writing as a dad. A husband. A caretaker. A business owner. An artist. 

I belong to a very exclusive club.

"I belong to a very exclusive club. 
We are a smaller club, yet are growing by the day. 
30 - 100 new members daily. 
I lost count.
We are worldwide. 
I will be part of this club for the rest of my life....and so will my family. 
Membership is difficult. 
The fees are high. Very high.
Daily club fees are due every day. 
Its mandatory.
No negotiation. 

I belong to a very exclusive club. 
I do not want you in this club.
You can not join. 
You are not welcome here.
You cannot inherit membership. 
I, and the rest of our community do not want you in our club. 
We do not want you. 

But we need you."


Until Saturday evening. Have a great day.