10 fingers & 10 toes

January 4, 2008 journal entry

Before my son was born all I wanted were ten fingers and ten toes
I asked God to send me the most special child he knows
I never thought about all the rest…
I wanted him to play like little boys do with his tonka toys
Batman shoes, spider webs and blues clues
I wasn’t expecting what was to come
Quickly I learned, with tears in my eyes, what I needed to know
Your child will be broken and slow
Slow to breath, slow to learn, slow to walk, slow to talk
But, not too slow to love
I learned patience and trust in God, I learned about pride and worries
He gave me the beauty of his smile and the love from his heart
I seen his fear, courage and strength through his tears
I was blessed with the miracle of a child
Before my son was born all I wanted were ten fingers and ten toes
I got what I asked for, the most special child God Knows…

April 2005 on ECMO: extracorporeal membrane oxygenation 

Johnny Born

http://emedicine.medscape.com/article/1818617-overview

 

“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!

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!!

 

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.

Death of a Chameleon…

Death of a Chameleon 

I miss the beginning…

Closing my eyes and running forward not scared of what is ahead of me.

Being held up by my “friends”

Carefree

Loving myself

Being able to look in anyone’s eyes and feeling something

The excitement

The smell

Barcardi

A chameleon

Until one day the end came….

Open my eyes, now I’m scared

Losing all my friends

Heavy hearted

Hating myself

Scared to look, feeling ashamed and scared

The fear

The smell

Barcardi

Death of a chameleon

Is a new beginning

That wasn’t me; One of my favorite songs that really describes what it’s like to change from this chameleon to the real person I am today. That wasn’t me who made all those promises and created all that drama. This is me, today! That I can live with!

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?