The Hubs: 2017 Edition

My hubs…

Some days I refer to him as my BFF, others not so much. If you are going to have a child like John, the trifecta of disabilities (CDH, Epilepsy & Autism), you better like who you live with because you will be spending a lot of time with them.

Some days we are all we have. No one is inviting us over to BBQ’s and people surely aren’t bringing their kids over to play with my son. At the end of the day he is the only person I can vent to, tell how I feel or just sit in silence with. It’s comfortable, its safe, somedays it’s hard and somedays it’s just perfect.

We separated for two years in 2012 (I think, maybe 2011). That separation is what saved our relationship. Before we separated I was almost 2 years sober, he was an active alcoholic. He left me telling me that I was doing great things and he was holding me back. I made sure he knew that was a great excuse but it’s really because he’s too scared to grow with me.

The first year we lived under the same roof, the second year he moved out into his own condo a few blocks away. I started dating in the second year. Nothing great to talk about. It’s amazing how many men my age live in their mom’s basement apartment, hate their ex’s and just are so lost in who they are. I had literally no success, obviously. I eventually just focused on me and building a business.

During those two years Kevin always treated me well. He treated me better while we were separated then he ever did while we were together. He stopped by the house every night to see his son, he fixed what needed to be fixed, he cooked, cleaned and was an amazing example for who a father should be, except for the part about sticking around in a marriage.

John became ill in 2014 with the flu. He ended up in the Intensive Care Unit (ICU) of Children’s Memorial for one month. At that time, we didn’t know if John was going to survive. They were using words that would prepare us for incubation and what happens if he didn’t start breathing on his own. After about 3 weeks John turned the corner. He started sitting up, breathing and laughing. We were amazed and so grateful for everyone involved in saving our son. It wasn’t the first time and wouldn’t be the last.

During those 4 weeks Kevin and I were carpooling to avoid the $15.00 a day parking fee at the hospital garage. He would drive over after work texting me when he arrived and I would go down and take his truck home while he went up with John. Some days we would go home together, clean up and head back to the hospital. We would sit and chat about John’s past and how strong he is. We gave each other huge praises for keeping him alive. We talked about the good times and the hard times. During this time I was in the process of opening up my shop. Kevin was right there helping with the build out, getting permits, supplies and contracts. He was amazing.  I asked him one day on the way back to the hospital, “Why are you being so good to me? We are not together anymore, you can just move on”. He said, “This is for all of us. Just because we aren’t together doesn’t mean we aren’t a family”.

Kevin is a man of few words but sometimes he amazes me with the words he speaks.

I know he struggles with his own demons, I have seen them. But, he really has the best intentions for his family.

Today, I can’t imagine being with any other man. When I am angry at him I imagine what it would be like. I let my crazy mind travel into places, imagining myself with another man or running away by myself to a deserted island. The scenarios I create in my mind always end with me thinking Kevin would treat me kinder. Or Kevin wouldn’t judge me like that, Kevin would have made it all OK.

Every Sunday morning he brings me breakfast in bed. Every night he tucks his son in to bed. Every day he tells me he loves me. He is humble. He is kind. These are the things I need to remember when times get tough.

#GoodNightSweetWorld

To discipline or not…

We got a puppy. 

The puppy was meant to be a companion for my son.

He’s missed the last 3 months of school from illness and we thought it would be nice to have a pet in the house to make him happy.  Pets bring joy into our lives, right?! 

Anytime John meets someone new it takes awhile for him to get comfortable with them. He test his limits. He is anxious. He swears, a lot! Its no different with a puppy.

In my mind it was a beautiful joining of two souls that just needed a companion. But, in reality….

Every morning there’s a battle at the top of the stairs. One won’t go down first. John, attached to his long 25-foot oxygen tubing trailing behind him, sits at the top of the stairs cursing and screaming at the dog because he’s being licked. The dog seems to think that this is something that John enjoys and continues to do it. When I try to call either one of them down the stairs they both look at me like I’m crazy. I carry the dog down the stairs go back up and get the boy, while the boy chants and screams at me. At this point he’s nice and irritated so it really starts our morning off with a BANG! Most days when I go back up to get the boy, the dog follows me up. Eventually, my brilliant mind realized I should probably put the dog outside and then go back up and get John. That only took me a few days to figure out.

Once we’re downstairs and settled things normally are pretty smooth. Unless the dog comes in the house and wants to play. God forbid the dog wants to play. Our dog is a boxer, it doesn’t bark much other than when it wants to play. So when our boxer, by the way his name is boss, comes in and wants to play he barks. With every bark my son throws out an F bomb. 

So we have a started a new regiment of visuals, rewards and consequences for bad behavior.  Swearing had always been an issue with John but was under control before this illness. He was going to school and earning his visit to Chuck E Cheese every Sunday.  

The balance between discipline and loving him too much is an act most days. When we are home how much do I tolerate before taking the only enjoyable thing he has in his life, technology.  The other leverage I have is Chuckie and bowling. We get Chuckie for using a level two voice all week and we get bowling for not using any bad words. But, only if you’re feeling OK and it’s not too crowded. 

We are building a system that works for us daily. Considering there are so few things that he enjoys it’s easy to find the consequence. The hard part is allowing myself to be okay with taking these things away and making sure he feels loved. He’s surrounded by so few people while we’re at home. We have so few visitors. 

I want to make sure he feels loved while balancing the discipline so I don’t go crazy. 

Meanwhile, tring to explain to an autistic sick child why he can’t have his reward right now even though he earned it is probably the toughest part!  

What is this all for?

During John’s last hospital stent I wrote this. I am so glad I journal to remind myself of what we have been through. We can do it all!!

3/8/2017

While John’s in the hospital I often start thinking about what the purpose of this life is?  We all hope that there is something beyond this, otherwise that makes this life for nothing. What is the purpose of all the hardship and joy, lessons and hurt?  I was driving back to the hospital the other day after going home to take a shower.  I was in a rush and angry.  I often talk about how horrible my road rage is and it’s so unnecessary.  I saw an elderly woman looking so sad standing close to edge of the street ready to cross, a family leaving the hair salon struggling to push the stroller through the door, a car speeding past me to make the light and a man in a wheelchair just waiting. Then, I thought about my mom and dad while they were dying.  All the pain they went through, what was it for? After they died so many people gathered to celebrate their lives and show their respects.  So many people had stories about all the days they gathered together.  Three years later no one is telling those stories anymore of my mom and her feisty ways.  The Irish woman divorced who moved back to her home country to retire with her American ways.  Drinking beer from a bottle and going to bars alone.  They really had to get used to her and grew to adore her.  One year later no one is talking about my dad’s generous heart.  The way he would stop and talk to a homeless man and had no problem giving him twenty dollars every time he seen him.  How he would buy a stranger in the bar a beer just to see them happy. What is the purpose of all this?  Why are we going through this life only to die and be forgotten?  In 100 years, no one will know my name or John’s name unless they come across it on a tombstone.  No one will know the lessons he learned.

Today, everyone talks about how beautiful he is.  How he makes sad people happy. How his smile brightens a room. How he curses like a sailor and how brave he is.  In 50 or 100 years when I am gone and john is gone no one will remember any of it.  All the pain my little man endured his whole life will be for what?

History shows people repeat the mistakes of the past.  Presidential candidates try what’s been done already and fail.  People suffering from mental illness and cancer are still not cured.  What is this all for? If you talk to a Jehovah witness, they will tell you the reward is in heaven.  A Catholic will tell you its eternal life.  I don’t know.  It’s all intertwined with hope and faith in a higher power. Letting go of what we cannot control and allowing life to happen gracefully.  Acceptance of people for who they are.  And responding to hate with love.

I always conclude with, “I have no idea but if we need to be here we midas well be kind”.  Even while driving.  I am grateful that John is with us.  I am for every moment. We take the pain because there is so much good that comes along with it.  I hate the pain because of what it does to his little body and life. But I love Johnny more than life. Countering the hate with love…we will be better than ever.

Home after 1 Month in the ICU

Home – 4/4/17

John arrived home this afternoon around 3pm. The hours leading up to his arrival were filled with anxiety. I was home pending the arrival of his medical equipment; oxygen concentrator, pulse oximeter and oxygen tanks. Ivan, the delivery man for Life Tech, called in the morning to let me know he would be there at 2pm with everything we needed. He explained he was coming from downtown. Then, I would drive the portables down to the hospital, downtown, to transport John home. I spent the morning cleaning the house and stocking the fridge just feeling excited and scared about John’s arrival. Around 1:30pm Kevin called and said Ivan is delivering the portable tanks to the hospital at 2pm so Kevin can be discharged. I was happy to hear he was being discharged but sad that I wouldn’t get to say goodbye to all the amazing folks that supported us the entire month. Kevin called at 2pm, he’s on the road. The oxygen tank John has only holds an hour and half. In the meantime, the supply company’s dispatcher called me to say they won’t be delivering the equipment for 2 more hours. I panicked letting them know John cannot go without oxygen or he destats, we need it here at 3pm. After about 15 minutes the dispatcher called me back letting me know they have rerouted home and he will be on time. Hallijewah!!

All this panic and stress reminds me of the medical supplier days when John was vented and trached. Dealing with the discrepancies, deliveries, always late and nurses! It was such a stressful time and I am sure that was one reason why I self-medicated with alcohol most evenings.

Today, John is home. Everyone is congratulating us and telling us how blessed we are. But, I can’t seem to be happy. I feel like we have taken such a large step back. I want to believe he will recover from this but am fearful he won’t. The idea of going through this again makes me sad. I really don’t know if I want to cry or laugh.

I am following my happy clown of a son around with 25ft long oxygen tubing attached to a portable oxygen concentrator. The concentrator is a large heavy gray box on wheels that has a rhythm of oxygen pulsing through it. He went downstairs to play Wii bowling and constantly had to be told to put his mask back on. On the way back upstairs he barely made it up having to stop and take a break half way through. We figured out how to give him a Neb which seems to bring back his pink color and he decides he wants to go upstairs to use the computer. After the 10 minutes of rearranging everything upstairs he wants to go back down. I accredit all this movement to spending so much time in the hospital he just needs to move move move.

I am happy he’s home. I am happy that I do not need to drive 10 miles every day to see him. I am happy that he is breathing better and that the doctors trust me enough to let me go home with oxygen. I am sad that it has to be this way. Someone posted on my Facebook “Now you can get back to normal”, whatever normal is. This isn’t normal for anyone. But it is our normal for today.  Another person said “He looks so good and healthy”. I guess that’s relative? If occasional blue lips look healthy? I admit, as much of an open book I am, I do not always let people see all the bad. I share a lot of the good stuff, the corners turned, the leaps and bounds, the miracles. I understand why people say he looks great. He really does look great. But, they didn’t see him 30 minutes earlier destating to the 40’s while his entire head turned blue.

I am not sure what I am trying to get across here. I feel like I am justifying why I am so unhappy or sad about where John is medically. Even though he has come far in the last month, it’s not where he was before this all started.

My life practices tell me to be grateful. We always have something to be grateful for. There are times when I am writing my gratitude email thinking, “I wonder if they think I am being sarcastic?”. I am grateful for oxygen, for portable tanks, for hospital staff and that we finally got some fresh air today. My gratitude list sets the bar low as far as gratitude goes. Others are grateful for their vacation homes, for having an extra day off to take care of business, for their families and so on. Maybe I should shoot higher with my gratitude but I don’t want to. I feel myself resenting my gratitude’s – is that even possible?

Meanwhile, as I write my son is shouting “Namaste!” over and over again. My friend Tori and I use that as a bad word a while back. He is trying to make me happy by using good words. He knows that makes me laugh.

I am so grateful for this broken child that has so much love and laugher in his heart and that he wants to share that with me.

Every visit has a memory

Every visit has a memory

Worst night this time around…

Every time John has a hospital stay there is something horrible that happens that we will never forget.  The first 13-month stent has a bunch of bad memories.  Like the time they placed an IV in his head because they couldn’t find his veins, they were so narrow.  Or the time they called us into the hospital at 2am saying this might be it, we need to get in fast.  I remember the rooms we were in and the people standing there.  Their faces are a blur but I know how many people were standing around and what they were doing.  This time around I will never forget tonight 3/13/17.  John destated to the 40’s on his oxygen.  I haven’t seen him that blue since he was a baby.  The whole experience is making me question every decision I have made this trip to the ICU.  Nothing like a trip to the ICU to fester up that mother’s guilt.  What should I have done differently? Maybe I should have come sooner? You know, like any mother except my decisions are based on life and death.  Oh, the fucking pressure!!! No wonder I drank!

I think what keeps me from breaking down is the fact that Kevin is breaking down.  He can’t stand this and emotionally collapses.  I end up having to hold him up, talk him down and tell him everything will be all right.  Tonight, after he went home I wanted to cry. But, I didn’t because I had to take care of John, get him to sleep and make sure he got his meds.  Then, when he fell asleep I sent Kevin a text letting him know.  Kevin called me.  How grateful I am he calls me today.  He was crying saying this isn’t fair and how hard it is to see John like this.  I sit and listen, tell him I understand and recommend he takes a hot shower and sleep well tonight. But, don’t forget to say your prayers.  He agrees, calms down and we hang up.

It’s my insatiable need to be in control that prevents me from breaking down.  I need to be the one barking out orders and telling people what John likes and doesn’t like, making recommendations on what to do next, talking to the doctors. It’s my character defects working to my advantage. I’ve yet to see a parent sobbing while making medical plans with a doctor in the ICU. It just doesn’t work that way.  You hold your shit together and do what you need to do.

And you remember every single detail and pray that the next time it will work out the same way.  And when it doesn’t you panic inside but manage to brainstorm more ways to move forward. And each step you take forward there is a heart wrenching twist in your gut praying it works. When it does there is a victory dance in your stomach that is hard to explain. When it doesn’t it is like a loss, like you are one step closer to losing him.

People that cry

My son John has been in the hospital.  He has the flu which means he needs ventilator support and drugs that open his airway and more drugs to counter the side effects of those drugs.  It’s a vicious cycle with the drugs, scares me to think the damage it’s doing to his body.  But, extremely grateful for the good it does.  Wednesday and Thursday night I never left the hospital.  I closed the store Thursday night because no one could cover my shift.  The kids that work for me seem too busy to work at times between college, family and social obligations.  Friday morning, I had to go into the shop to clean a machine.  I figured while I was out I would catch lunch with Nora and her daughter Zoe. 

Zoe is a feisty, bossy little lady that is descend for great things.  She’s a princess on some days with her Frozen princess Ella dress and a regular little girl on other days with her Pajama wearing style. She loves to make people smile but she has to be fed first.  She’s a girl after my own heart.  Nora and I arrived at Fannies, our favorite BLT hot spot, at the same time.  She was walking from her car with little Zoe trotting beside her chatting while I crossed the street to meet them at the front door.  Something about Zoe’s spark made me emotional.  I started thinking about Johnny and how he loves to make people smile.  My heart was broken watching him struggle in the hospital.  The last three days he hasn’t smiled at all.  When Zoe seen me she walked right up to me and hugged my legs.  The top of her head reaches just above my knees.  Her skinny little arms grabbed hold of my knees and gave a big squeeze.  Then she looked up at me and handed me two stickers.  Nora explained that she wanted to share her stickers to make me happy while I am so sad. The water works came on so much so that I couldn’t bring myself to sit down and eat lunch. 

This scene lasted less than a minute but has forever been engraved in my mind.  It reminded me of my own childhood and how we dealt with tears and sadness.  As a child, if I saw someone cry I was like a deer in headlights.  I didn’t know what to do.  The thought of providing a sad person with a hug or pat on the back was completely awkward to me.  It still is sometimes today. 

My father never cried, other than when his mother died and my son was born. I believe the fact that he didn’t cry was a life accomplishment for him.  While my dad was dying from cancer I set up his bedroom in our living room, Sunshine Rehab he called it.  I was forced to enroll John back in school instead of homeschooling because I knew I couldn’t handle the pressures of caring for Dad and John at the same time.  The first day of John’s school I came home crying because I felt they didn’t want him there, I was almost 5years sober at this time so crying wasn’t a weakness anymore, it was my strength.  My dad just stared at me like a deer in headlights.  A few days later he confessed to me that when he seen me like that, crying and all, “I almost cried”.  Imagine that.  He said it like it was an accomplishment that he didn’t cry.  As if crying would have been a bad thing. 

The last time my dad cried was with me.  He told me he was sorry I had to go through this.  I asked, “This?  Go through what?”.  He said, “Having to watch me die. You had to watch your mother die and now you are watching me die and I’m sorry for that”.  I said, “Thank you for allowing me to be here to take care of you, I love you”. Then we cried with our foreheads touching each other. 

Dad said, “Im gonna miss you”

I said, “You’ll be gone, Im gonna miss you more”

And I do ❤

First blog post: Who am I?

Today, I am an entrepreneur, a mother and wife. As I type this my son has his head resting on my thigh with an oxygen mask attached to his face via a home concentrator. Its bedtime so my husband is downstairs watching TV and probably sleeping because I have the kid watch night shift. It’s a routine we have become accustomed to over the last 12 years. More on that later…

The past me was a nine to fiver for a 500K corporation. I was working my way up to the top, having liquid lunches, meaning Bacardi, and kid free. Until I fell into marriage, became a foster parent and had my son John. Then, I was a stay at home mom turned medical advocate with a crash course in medical jargon and an education advocate with “due process” always in my master plan, but thankfully never initiated. This ME became a lonely housewife that liked to party.

Once you hit your bottom there is no other place to go but up. If you are desperate enough to change and surround yourself with the right people they will give you the steps to keep you moving forward even on your loneliest days.

The future ME, I haven’t met yet. I take it one day at a time and let my life play out the way it should. 10 years ago, I never would have imagined being the owner of a successful sweet treat shop. I’m pretty sure anyone who knew me couldn’t imagine it either. I think this is why I am blogging. I want to start thinking about what I want to do next. Writing has been such a healing process for me over the years. Some of what I wrote I shared on social media sites and some I did not. This is the time for me to heal from my past, move forward and write about it.

Maybe my future me is a writer?