What’s Next?

It’s been an autistic kind of day…

This morning John refused to talk to me unless we used the walkie-talkies. I enjoy when he does this because it encourages him to use proper sentences and good words. He keeps the volume so low on the walk-talkies that we can’t hear each other. However, we are standing right in front of each other. I believe the sound of the voice through the walkie-talkie causes a sensory issue so he keeps the volume low.

On the way out the door an older man walking a huge old German Shepard was walking by. John started chanting “Fuck, fuck, fuck, fuck…” over and over again. The man stopped and looked at us shocked. I quickly looked at him and said, “I’m sorry, he’s autistic, he’s just nervous”. The man gently said, “I can leave”. I said, “NO, we see you all the time, its ok. He has to be Ok”. All while John was chanting “Fuck”. The man said to John, “Hey John, this is my dog Jake”. John stops chanting and looks in their direction and says, “Jake, like Jake and the Neverland Pirates. Jake, Captain Hook, Mr. Smee, Sharky, Izzy and Skully.” The man responds, “Oh Skully, yeah I like X-Files, too”.  Next run in with Old man and Jake should go a little smoother.

We went to the last day of camp’s talent show at Indy Park. John is so well behaved at Indy it literally has me stumped. I have no clue why. Maybe because he loves it there so much. We spent an hour there listening to the team, greeting everyone and sitting watching the show. It was the quietest he has been all year so I really took advantage of talking to other adults without interruption. It was amazing!

As we were leaving it took everything in me not to cry before we got to the car. John loves this place but cannot attend because of his medical needs. They do not provide nurses and I can’t stay with him. I was sad because Special Olympics starts in September and he will not be there. I was sad because he is missing out on so many things that he loves, where he feels the most comfortable with the friends that make him feel normal and loved.

When we arrived home I let him eat “black” popcorn, didn’t feed him dinner and sat my depressed ass on the sofa. I was emotionally drained from having a good ugly cry in the car on the way home. John asked to go downstairs to play Wii. I was all for it, but didn’t follow him. I wanted to see if he could do it himself this time. He has seen me do it a million times.

I waited…I got lost in my phone…I waited a little more….got lost in my phone a little more and then popped up thinking he was way too quiet. Ill head down to see what’s up.

Scene: Our basement is small so the doors are pocket doors that slide into the wall. The bathroom door was half open with oxygen tubing trailing out. The smell of shit was in the air. I slowly peek in to find a few balls of shit on the floor, a little on the wall, all soaking in a pool of pee with his jeans and underwear laying on the floor soaked. John is sitting on the toilet humming and chanting “what’s next, Mommy?”, the question he has been asking all fucking day, while splashing his feet in the pee.

I managed to get it cleaned up while he sat on the toilet. I was amazed that he didn’t move off the toilet. I think he knew this wasn’t right and just wanted to sit there till it was gone. Kind of like what I want to do when I do something wrong….maybe it will just disappear?

All cleaned up, he jumps on the couch to play his Wii asking “what’s next?”  The bathroom is probably cleaner then when we first bought the house, BONUS!

My character defects like to creep in unintentionally. One of them is impatience and anger. Today, it didn’t’ happen. I only felt sadness. I feel like that is emotional progress…feel the feelings, walk through the fear, and keep the faith….

All day I have been listing off in my head the autistic quality’s that my son has.

The repetitive asking

The swearing

The need for a schedule

The lack of understanding of danger

He is intellectually disabled

He is beautiful, smart and so loving

Whats next blog

This is the face I love every day. It’s the face after the storm, after the hardship and after the madness. It’s the face of love and gratitude. He puts his head on my shoulder while patting my back saying “Gracias, mommy”. While we are just sitting there, after the storm. He puts on a hardy laugh while saying “I love you mommy”, just to see us laugh, after the storm. At bed, he asks one more time “What’s next?”, tonight the answer was “Tomorrow is Saturday, Chuckie Cheese because you earned it!”. He responds. “I earned it!” while his 12 year old body wiggles so hard with excitement.

#GoodNightSweetWorld

And tomorrow we will do it again…

To teach…or not to teach?

Recently, I have been thinking about going back to school for a degree in Early Education. Since I already have a Bachelors it wouldn’t take too long. I have always wanted to be a teacher. The hours and seasons would work perfect with my seasonal business selling froyo and with John.

Anytime I start thinking about changing careers, making life decisions or anything of that caliber I throw it out into the world. I start talking about it. I truly believe if you put it out there the answers will come. When I mention going back to school to be a teacher most people say, “You could be a Special Ed teacher!!”, like it’s the most exciting thing since sliced pie.

Um, NO!

It’s like a mechanic with a crappy car. He goes to work all day and doesn’t want to come home and take care of his car, too. Just because I have a special ed. child doesn’t mean I would make a great special ed. teacher.

I appreciate all the people that have taken on John and didn’t give up. He went through 5 schools before 6th grade. He had some amazing special ed. teachers and one crappy special ed. teacher (She’s a whole other blog post). But, I don’t think I could do it. I get a real high off of watching kids do “normal” or “typical” things like color, eat, talk, play and breathe. It makes me so happy when kids play using their imagination or when they interact with other children. I would love to be the person to facilitate all this normal behavior. I would also love to be the person to mold these “typical” children into kind, smart productive high schoolers.

So this is me putting it out there, again. I am still on the fence. My brain tells me I am crazy for taking on all this extra work, my heart tells me I could make a difference. I let myself think too much about it and the committee in my head can be a tough committee, not always supportive. I find the most real support, whether it’s for or against, from the real woman in my life. They are the most honest! Sometimes they see things in me that I don’t see, good and bad. When they are brought to the forefront I can recognize the good and work on the bad.

Love my amazing tribe of supportive woman!

Why? Grateful?

I just watched John jump onto the couch like he was sliding into third base with an oxygen cannula on. He is so resilient

If you can stop asking Why? You can enjoy what is right in front of you. I am not sure when I stopped asking why this happened to John. I still ask when he gets sick or ends up in the ICU. It’s hard to believe in “the grace of God” and a God that is “merciful” while you’re watching your child suffer, struggling to breath or in pain. It is hard to understand.

For me, I stopped trying to understand. I am grateful for the doctors experienced hands in the operating room, I am grateful for the nurse that gives him pain medicine, I am grateful for the pain medicine. Thank God for breathing treatments and ventilators. Thank God for the people before us that invented these devices so we can live our lives.

I belong to a gratitude list via email with a few friends that live in gratitude. I have a hard time contributing to the list because I feel like my gratitude is too different. However, I do enjoy having a little window into their worlds.  While they are grateful for vacations homes being so airy, the kids getting good grades and having great nannies I am grateful for oxygen, ventilators and finally finding a care provider for him after going through several. I’m grateful for his resilience, determination and strength. I’m grateful for the changes his life have brought into mine. I’m grateful for the sincere people who have crossed our paths because of John. Including doctors, nurses and other parents with special needs children…

I am grateful for love… without it we have nothing.

What are you grateful for?

“I’m glad I got cancer”

I rarely hear woman say “I wanna be just like my mom someday”.  We hear boys say they want to be just like their dads when they grow up, why don’t woman say it more? Such different relationships…

Today, I yelled at John. You might think I don’t yell a lot, maybe it was just today? No, I yell all the time. I think my normal talking voice in this house is yelling. I cannot have a conversation without talking over John and his technology devices going off so I scream “Turn it down” mid-sentence and keep going. Newcomers to the Murphy household are usually shell shocked and wondering how I can even have a conversation and retain anything we talked about.

Anyway, I started off talking about mothers. I spent years praying to not be anything like my mom. Now I wish I was like her. She was a mother that had a lot against her. She raised four very different kids in a mostly unhappy marriage as a stay at home mom. After her divorce she went out to work as a bartender, later getting a job with the Chicago School system doing janitorial work. Her relationships with her kids were strained because we were little assholes. Except for my older brother Teddy, he was and is non-judgmental and empathetic. I know he was towards our mother, not so much with others. Even though I believe he really is but tries to play it off like he isn’t. He is generous and is always helping people. A friend of his went to prison and Teddy was the only one who kept in touch with him, sent him gifts, money, etc.  When I asked him why he even bothered he said, “Why not, the guys got nothing else going for him”. When that friend got out of prison, less than 3 months later he died of a heart attack. I think about how that poor man died when his life was getting ready to change for the better and how grateful he was for Teddy’s correspondence all those years.

My mom was diagnosis with brain cancer when Johnny was a baby. I was devastated and so was Teddy. Even today I feel these overwhelming waves of guilt in me for the absence in my mother’s life for so many years, it was intentional absence. I was so mean and judgmental. Unfortunately, it took an illness for me to have any empathy for her at all. She had cancer for 6 years before she passed, we had an amazing 6 years filled with great memories. I would hop on a plane every 3-6 months to visit her in Ireland where she lived to spend a few weeks with her. Teddy and I would take turns going, sometimes going together. Mom told my cousin Mikey one day, “I’m happy I got cancer. I don’t think I would have known how much everyone loves me”.

When he told me that my heart was broken for all the lost years. All the years she wanted to talk to me and I wouldn’t. All the years I didn’t even know why I was mad at her other than other family member’s influences. That day I vowed to live a life where there was no question about love. People I love know I love them because I tell them when I see them. Even if they think it’s strange, I say it. Last weekend, we went to John’s ECMO reunion to celebrate his survival. We have kept in touch with all those folks for over 12yrs. Danny, the ECMO specialist that cared for John, is a friend we see rarely but still considered a friend because of his role in our lives. As I was leaving I told Danny “I love you, see you next year”. He said he loves me back, but I didn’t’ expect that. I truly love him for his role in my son’s life, his survival.

When the feeling rises, I say it. On the other hand, people I dislike usually know it, too. Not because I tell them. Because I create boundary’s that keep them at a distance. For example, my sister and I haven’t seen or talked to each other since Dad died. I do not like her, how she treats her family or how she treats other people. I don’t want to judge her, condemn her or save her, so I create the boundaries. Some people need to save themselves and my role in their life may be only to watch me from afar or not.

I remember mom yelling at us when we were kids. Once she chased me around the front room with a broom and almost made contact. I probably said something disrespectful.

I hate that I yell at John. Sometimes I can’t help it. I always apologize to him without the “but”. I remind myself that I am teaching him how to be treated. We make mistakes, we make amends, we forgive, we pray and we live in gratitude. Thank God for the ability to take time outs, restart our day and thank god for LOVE!

At the end of the night he has never turned away a hug or kiss, for that I am grateful. At the end of the night he knows I love him!

Grateful for the chaos

Today, I thought to myself “I don’t think I’ve had my period in a while?” So I checked my handy little memo pad on my phone and the last period was May 8th! Which means I am either due for my period July 8th and just skipped a month or I am going through menopause. I know, you’re sitting there reading this thinking “Girl, you better get a pregnancy test!” But, I refuse to believe that I am pregnant.  I’m too old for that!

In the meantime, I am losing my mind. I walk into a room and forget what I came in for. I start working on my computer and forget what I was starting to do. John is downstairs throwing remote controls around, chanting and suffering through the consequences, so dramatically. The sitter just texted to say she will be here at 12:30pm instead of 10am because she had to pick up her niece. Opps, I guess we aren’t a priority!

Last night, I sent an email to North Park University to inquire about a second Bachelor’s degree in elementary education.  I can’t sell froyo forever, right?! Can I?! I sent this email after working a 12 hour shift two days in a row because I suspended two girls at the shop, one I should have fired but seem to have a soft spot and can’t do it.

Sounds chaotic? That’s not the half of it. But, this is life. I will take this life over the crazy chaos I created on my own 7 years ago. I need to be reminded that even if life gets crazy I have the tools to get through it with grace and dignity. I can do this without screaming, crying or curling up into a ball.

Grateful for progress and not protection, grateful for the ability to restart my day at any time of the day so I can at least try to get it right and grateful for my chaos!

Now, let me go downstairs and go over the schedule with my son for the 15th time this morning, its 10:34am.  The boys excited that mommy is taking the day off tomorrow to go bowling with him. Hopefully, the employees show up for work!

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

7 years later…

A friend introduced me to Anne Lamott.

She gives a Ted talk about the 12 truths she learned from life and writing.  The two that immediately popped out at me are “stop helping so much” & “Just do it!”.

The other 10 are also spot on. But, in this moment in my life these two popped out to me personally.

Stop helping so much: I spent the last twenty years helping others even when I didn’t want to. I started to resent people because I was helping them. Today, that idea seems backwards to me. Today, when someone asks me for something I have learned to pause and think about it before saying yes. Sometimes I say “Let me check my schedule and get back to you”. I like to be able to say yes with the feeling of really wanting to help. If I say no, its because I really can not help. Something about the situation either doesn’t feel right with me or will be taking me away from something that is important to me. One of the ways I have combated the guilt I feel for not helping is advising on where else they can go for help. Sometimes people have to do a little more work, to help themselves.

Just do it: I used to start things and never finish. Or I would never start and talk about it for months or years. When I decided to change my life 7 years ago I never imagined I would become a “Get it” kind of girl! Today, one of my weaknesses may be my strength. I don’t think before I do. I get an idea and run with it! I try it, sometimes I fail and sometime I succeed. I do not let fear lead me, I let it trail behind me on my coat feathers trying to catch up. It’s always there. I am pretty sure if I thought too much about it, I wouldn’t do it. I would let the evil little committee in my head tell me I am crazy, slow me down or halt me all together. But, NO, today I just do it! Now, I own a business I love, I balance life with family (sometimes), and I am still married (happily, most days). Imagine that!

My 7 year anniversary is tomorrow. Happy 7 year to me! The day I decided to Just do it, for me!

Anne Lamott gives a Ted talk here. Love her balance of humor on serious topics. Must listen!!