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

A boy and his dog

Every morning while John is on the toilet I set up his toothbrush with a rinse cup. 12 years old and I can finally walk out of the bathroom while he brushes his teeth . I set it up, say “brush, rinse and come downstairs.” Today, he never came downstairs. While I’m getting his meds ready I shout up, “John, are you done brushing your teeth?”. His response, “Yah, brush Bosses teeth”. I run upstairs and find this.

Brush Bosses teeth

They are bonding. They are like brothers that like each other when it suits them. Boss sometimes knows nothing of personal space while John is always telling him to “watch your personal space!”. They still struggle at the top of the stairs every morning. Boss likes to take an entire step and lay there until you’re just ready to step on him. Then he moves. John enjoys letting Boss lick the white cheddar off his fingers from eating “Black Popcorn” (The white cheddar popcorn in a black bag). While he licks his fingers he says “Look tickles”.

I love that they are bonding and becoming friends. This could have gone either way.

A boy and his dog

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.

Happy Mother’s Day

Every morning he says “whatda we have?”  This morning my response was “dance class”.  He replies “Chuckie cheese?’  I say, “No, Johnny you didn’t earn it.”.  Then he places his forehead against mine and kisses my nose gently.

This is the typical morning with John first thing.  He usually turns into a clown by tickling me, burping or farting.  But, he always says “exxxxxcuse me”.  He’s polite like that.

This morning for some reason he also asked for Grandpa and signed it.  I feel like his presence is here to say Happy Mother’s Day as well.

I am the luckiest mom in the world to have been chosen by John. He’s a clown, loving, feisty, polite, and more…and somehow I feel like I had nothing to do with all that.  I love this kid to bits!

Happy Mother’s Day!!!

“Is he Autistic?”

Autistic

“Is he autistic? Is a question I get a lot. It is usually paired with a soft sad look and tilted head. These people have no idea how wonderful it is to have a child like John. Another autism mom wouldn’t even ask that question. They would just start sharing stories with me that I usually can relate to, like normal moms.

“That’s what they say. But, I’d be autistic too if I spent 8 years on a vent” Is usually my response. It really depends on the day with how I respond.  Some days I don’t want to deal with the follow up questions, “Why was he on a vent for 8yrs” “what was wrong with him, he looks fine”. Some days I do respond this way just so I can explain him out of his autism. Meanwhile, he sits chanting my name and pounding on something nearby.

In the ICU he is always autistic. I must answer for him, even though I don’t always need to. I must help him with toileting, dressing, eating and so on. Just as I do at home. But, when they start talking about sending him to the floor instead of discharging us from the ICU, that is when I say it, “he is autistic”.  I argue that he has to adapt to the change in environment again, get to know the nurses that will already be jumpy around him because of his medical history and how all that change will just be too hard on him. “Please please please discharge us from the ICU, you know me, I can handle this at home.” Is usually my last line.

Being discharged from the ICU versus the floor usually means we go home a day or two earlier.  It’s just one of the tricks of the trade that we learned in the last 12 years. Like when he was a baby he had MRSA colonized in his trach. Every time we went to the ER it was the first thing we mentioned. It meant we got a private room in the ER. MRSA is very dangerous if active and having him in the general population was not safe for others. We definitely took advantage of that. Having our own room meant quicker service and getting home or admitted sooner. Now that John is no longer MRSA we don’t enjoy that benefit when we go to the ER.

This hospital stay I am not even sure I want to argue about going to the floor. I just want out of this room. I’m thinking the floor might be the next stage in our life, a stage we may need to get used to. He is older, stronger and less critical medically. The ICU beds are full, they need the beds for others. As I write this we are here over 3 weeks. 4 children have passed away, one I know of from the flu. I can’t help but think that could be John. I need to get away from this energy that makes me feel sad and grateful at the same time. It’s like I am being pulled apart from both sides of my body, the pain goes right down the middle of my chest, the sadness lingers in my heart and the happiness is always on the edge trying not to show too much. I’m watching mothers and fathers leave here without their babies. Its emotionally and physically draining. I am so grateful that I do not know their pain. I am so grateful that I have my son with me.

Now If he would just eat his damn hot dog and stop chanting my name “Barbi, Barbi, barbi, barbi,  barbi…. I don’t want hot dog”. Thank God he’s alive!

 

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 ❤