Practice the pause

Practice-the-pause.-640x640

Sunday will be my father’s birthday. He would have been 76 years old. Sunday is also the day we moved into our newest home, one year ago. I feel like that was a sign. Dad always wanted us to move into a smaller home and take care of ourselves first. He said we were always taking care of other people kids. He called my house “Sunshine Rehab”. When he was in the hospital, I texted him a picture of his new bed all set up in the living room of my old house. The house was very large with 5 bedrooms and 3 ½ bathrooms. The living room had no other furniture in it other than Dad’s bed and anything else he needed. I used a folding wall to give him privacy. We wanted him close to our everyday activities so he could see what was happening around him. Not in a room with a window facing the alley or a neighbor’s house.

My biggest regret when it comes to my father was talking to him like he didn’t know anything. With the tone of a snotty teenager that thinks they know it all. As he aged he asked questions I deemed as stupid or uneducated because I knew the answers. I was impatience and judgmental. Why I thought I knew more than a man that lived more than twice my life span is beyond me.

This morning as I was cleaning up dog poop in the yard, no doubt with a puss on my face, I was listening to my neighbor’s 40 something year old son talk to her like she didn’t know anything. He was explaining things like she should already know. He was aggravated and snappy. A familiar sound since I talked to my father that way many times. As we age it’s hard to be patience with the elderly, until they are dying. My neighbor wanted her son to fix something mechanical. He was mad that he didn’t understand what she wanted and snapped, “I’m not a mechanic”. This woman is in her late 60’s early 70’s, came from Poland by herself with one child, started a family here in America working several jobs. She tells me stories how she did everything because her husband was not good at things or just wouldn’t do it, like mowing the lawn or fixing the car. She dropped the kids to sitters so she could work a 12 hour shift to help put food on the table. She loved her children and always made sure they had what they needed. One child lives next door to her now, which is the son that was talking to her this morning, the other son lives with her after his divorce. Her advice to me often in the last year is, “Don’t start doing things, then he will stop doing them because he knows you can. Let him mow the lawn it will keep him busy.” She would always add “trust me”, with a thick polish accent.

I wanted to reach over the fence and tell him to stop talking to her like that. I wanted to tell him he was going to regret it someday. One day he will hear someone else talking to their parents like that and a flashback will come in reminding him of how disrespectful he was to his mother. He will regret it and feel a sadness. He will pray his kids never treat him that way and that they respect the life he lived, for them. I know you love her. Because I have seen how you take such great care of your own kids.

While Dad was alive I wish I practiced the PAUSE more often.

Pause…Let him be right.

Pause…let him tell you what to do.

Pause…let him feel in control of his home and life.

We are teaching our children how to treat us when we are elderly.

Pause…and think about how much you love them.

Happy Birthday Dad! I hope you know how much you were appreciated and loved. Even if I was always right (wink wink). I love you every day!

Dad’s first selfie ❤ He was 72, always learning new things!

Dads first selfie

Are we breathing?

When John became sick this past year I knew our summer would be spent at home. At the time, I was sad and depressed thinking about all the things Johnny will be missing out on. He won’t be able to attend Summer Camp, missing piano lessons, no more swimming and trips to Chuck E Cheese and McDonald’s for french fries would be limited. As his mom I want more for him. I want him to be able to experience life and enjoy his youth, make friends, play  sports, be happy…

Fast forward three months later, here we are at home adjusting. John and I have been stalking his camp, meeting them on field trips and being a part of the group that he loves so much. We went to the movies, the beach and bowling. I hired a girl to help out so I can run errands, get pedicures and work. She is a music teacher with the Chicago School System. John loves her and she has quickly learned how John works.

Every morning, John and I sit at the kitchen table and eat breakfast, we chat, sing and talk about the weather. Seriously, John is obsessed with the weather and asks every morning about it.

Every afternoon, we do something or nothing. We go bowling, stalk his camp or we sit home and watch TV. This afternoon I came upstairs to write while John watched TV, but we both have our walkie-talkies to keep each other posted on what’s happening in our part of the house.

Three months ago I thought my world was coming to a screeching halt of boredom and sadness. Today, I get to relax with my lil man, sing and write. Far from boredom!

John’s life has a way of slowing my life down and reminding me what is important.

  • Taking time to talk in the mornings
  • Friends and family that take the time to check in on us or visit
  • Living in the present, not worrying about the future
  • Love, without it we have nothing
  • Breathing

Yes, breathing. Part of our routine is also checking his oxygen levels during the day. Its what we say every day, “Take a deep breath John, bring those levels up. Breathe”. It’s what I remind myself to do every day when I am stressed, “Breathe Barbie, everything will work out”. So far, every thing has always worked out…

Chillin with Boss

 

Keep me posted

This afternoon John has a doctor’s appointment with his pulmonary doctor, Dr. Lestrud. He was been following John for 12 years now, since John was born. Our relationship hasn’t always been sunshine and daisies. We have learned having and keeping a doctor is hard, like any relationship.

Back in the day when John was on the vent, oxygen, feeding tube and 13 medications 3X a day I would call Dr. Lestrud my “bad boyfriend”. I needed him in my life, but I wish I didn’t. He never listened to me and doesn’t call me back until I start crying.

It took a few mistakes and steps back for him to start hearing my suggestions. I vividly remember talking to him on the phone one afternoon crying because John was home sick and not improving. I was upset that it took so long for him to call me back. I was upset that the medication he was using wasn’t helping and that he wouldn’t prescribe a steroid to help him. We talked for about 15 minutes, I stopped crying, he apologized for making me feel unimportant and we agreed on a plan moving forward. Which if I remember correctly worked out well. I rarely cried when I called him but this time I had reached a limit. I believe he knew that and took action to make the situation a little easier for us.

Ironically, his wife, who is his 2nd wife, was a nurse in the pediatric intensive care unit (PICU) and took care of John at some point. They have 4 kids together, he has 4 other kids from his first marriage. I often wondered if he was this apologetic as a husband as he was with me that day. But, that would be getting too personal with the doctor.

I’m not saying I was always right. He needed to trust me so he can treat my son and I needed to trust him. There is a balance between what is medically right and what I want. Conversations need to be had, respectfully. I don’t know what medications he needs. But, Dr. Lestrud doesn’t know either unless I can articulate what is happening to John in medical terms, with less emotions. Mom’s with chronically ill kids get a crash course in medical jargon and pick it up quickly.

Over the years I have learned to take the emotion out of my communications. It’s not always easy and I didn’t always do it well. But, I did learn that when I can articulate our needs without crying, name calling or being passive aggressive we get better results. This applies in advocating for education, medical and social needs.

When John first came home from the hospital he was going to at least 5 appointments a month. Every appointment I thought there was going to be some great revelation or milestone. Most cases I was disappointed. Most appointments were the usual nurse’s check in (weigh, temp and blood pressure), sit in the room for almost an hour because they over book, see the doctor for 15 minutes and schedule the next appointment for 3-6 months later.  Eventually we were told to come back in 6 months and that seemed like a milestone. 6month!!! You mean not 3 months???  Yeah!!

Today, we are going to see Dr. Lestrud after 3 months to talk about his oxygen needs. I still think something amazing will come out of this, but deep down the little committee in my head is saying “STOP IT, you know it will be a meet and greet and a “keep me posted on his progress at home” visit.” That’s what I get for knowing my son so well, for advocating for him so well all these years. I get a “keep us posted” from the doctor. (Smile) That sentence seriously gave me butterflies, yes that’s me patting myself on the back, after 12 years. Yes, I am patting myself on the back.

Slow and steady is how we roll

Dr. Lestrud explained what a good wean looks like and we set a plan. Wean the liters from 4 to 3 and see how it goes.  We both agreed we want him to start school in September with or without the oxygen.

Go home and “keep me posted”

ilovebowling
I just wanna bowl!!!!

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

 

#Healing

Summer fun is not so fun…

Today is Saturday. I am a business owner on top of a multitude of other titles. On the days I am not going into the shop I always check in with the video cameras to make sure someone showed up for their shift. Today, no one showed up to open the shop. So after getting a text saying she asked someone else to cover her shift but never told me so I could change the schedule, I had to pack up John and head over to the shop to open. This is where I start wondering why I thought I could be a business owner and John’s mom and contemplate closing shop and then slap myself out of it.

John doesn’t like to just get up and go. There is a process, a plan, a schedule that needs to be followed. Today, we were supposed to go to Rosemont at 2:30 for the Special Olympics Ice cream social. Next, home for water balloons. Next, Irish fest. We were not supposed to go to Josi’s at 12:15pm or any time during the day. After throwing his clothes and shoes on, driving to the shop he was pretty pissed.

When we got out of the car he tried throwing his oxygen tank at me. A guy riding his bike passed slowed down to watch. When we started walking to the door he tried pulling the tubing off. An elder man stopped to ask if I needed help. Once we got to the door I knew I needed to literally shove him into the store with tank, lock the door and dart to turn off the alarm. If John heard that alarm our day would be ruined. So that is what I did unannounced to John. John didn’t appreciate the shove but with a shocked look went to sit down at the nearest chair, thank God!!!

Once the alarm was off and doors locked I worked on opening the store while John sat on the chair chanting and screaming at me. “Mom, mom, mom, Get over here right now, I said get over here!” Over and over again. Apparently, I say that to him a lot.

A customer came to the door so I opened warning them that the shop just opened and product isn’t ready for about 5 minutes. I apologized and continued to get the shop ready while John continued chanting his chant. Meanwhile, I was texting everyone trying to get them to come in or friends to watch John, there is no way I can sit here all day with John and tend to customers.

Finally, the newest girl hired said she could make it. Two girls have been suspended and don’t start back till Monday so I didn’t even ask them. One girl was at a baby shower. I fired the girl that didn’t come in. It was the easiest fire ever since she was literally a backup, ironically that couldn’t back us up. I just took her off the schedule and told the team they can no longer use her as a backup. Didn’t even tell her.

When the girl finally showed up I took my phone and sat down next to John at the table he was chanting at. It took all of my strength to not cry. I sat there staring at John, he stared back at me finally saying nothing. I took a deep breath and started chanting to myself “God help me, god help me, god help me”, while holding back tears with my back to the audience at the counter.

Since the last night shift didn’t let me know we were out of strawberries, blueberries, donuts and a bulb was out; it was off to Target.

It had to be Target, because that is the only store John will go to without a fight. I’m just glad all the items I needed were at Target. Mission accomplished, dropped off at the shop and home we go!

On the way home he sat in the back seat the quietest I have ever seen him. So quiet I had to ask if he was ok. His beautiful face just looks over at me with a smile and says “I’m ok mommy, stop asking, I’m ok”.  That his new thing, telling me to stop asking even if I only asked once. Was this the calm before the storm? In my head I am trying to figure out how to keep him this calm….

Cancel Rosemont

Cancel the Irish fest

He’s way off his game.

Home – FINALLY – Kevin comes home early to relieve me so I can go to jewel for dinner, pet store for food and hardware store for a fly swatter! Ahhh…a break for me!

He has his water balloons… all is right with HIS world. Until daddy tell him only 5, not 10. I’m outta here….

I managed not to cry in public, only in my car…

I can’t wait to go to bed….it’s only 4:30pm….

People are texting me asking where we are….no show again.

I’m watching all the other mom-entrepreneurs take their kids to work and be good at it #SmallBizMom…no go here.

#Feeling Sad

#KeepTheFaith

#GoodNightSweetWorld

I tell this story to heal, not for sympathy….I need to heal and others can heal from reading, hopefully. Sharing our experience, our strength and our hope is how we heal. #Healing

tell your story

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?