Lessons From My Toddler: The Importance of Listening

I have a son who struggles with listening.

He will come to me with a problem and I will try and answer him or guide him but most of the time, he just repeats himself over and over again without listening to what I am trying to say. If he isn’t listening, how will he know what to do?

It gets frustrating. The answer or solution is usually quite simple.

I especially go nuts when he is in pain and refuses to let me help him. He will cry and complain to me but refuses to do what needs done. I don’t want to see him in pain! And I know exactly what he needs. But some things cannot be forced. Of course we try to talk to him, reason with him, but many times, he is simply not listening. He will have to learn the hard way.

One day it dawned on me again how similar we adults are and how we often do the same.

We cry out to God when we are suffering, but are we listening when He tries to answer back?

Some things are simple. Some things He has tried to tell mankind for thousands of years, and sadly there are so many closed ears. And often, we are stubborn and end up having to learn the hard way.

I know God loves us. I know He has answers. We are the ones who need to listen.

I love my son and for all the things he is teaching me.

I recently found this quote:

“While we teach our children all about life, our children teach us what life is all about.”

xx

Living With Chronic Illness: Symmetrical Multifocal Motor Neuropathy with Conduction Blocks

 

In March of 2012, I had written a blog post about how we as a family live and cope with my husband’s neurological condition called CIDP.

I feel it appropriate to update this post because he does not have CIDP.

 But why did it take me so long to write this? To be honest, sometimes we just don’t want to talk about medical stuff. It does not define our lives, it simply becomes a part of it.

Anyhow, few months after I wrote the blog post about CIDP, he was re-diagnosed with MMN. Multifocal Motor Neuropathy.

After having researched this condition and undergoing some horrendous medical procedures, and blah blah blah, in the end the drs doubled his treatment dosage and changed it from every 3 months to monthly. This made a world of difference! And he changed it to monthly because that is how it is done in the USA and my husband pushed for it.

This new monthly treatment made it possible for him to no longer use crutches! I felt I had my husband back. Our spirits were high and life felt pretty normal again, even though he still could not work, he could walk. He was stronger. He could play with the kids. He could use the stairs.

I remember one day specifically. My sister had offered to watch our two young sons so we could have a lunch date. After everything we had been through, we could not stop smiling that day. We took the bus to the mall, had lunch there, walked around for a little bit and went back home. We held hands. We raced up the stairs at the train station. We laughed. We were living a miracle.

During about the same time, my papers were complete for us to move back to the USA. Yes life was so much better, but there were still unanswered questions and his diagnosis not very firm.

Now we are back in the states. He was seen by the head neurologist at Cleveland Clinic and spent an afternoon undergoing extensive testing for a firm diagnosis. Which is now: Symmetrical MMN with conduction blocks. Even he, the head neurologist, had not met anyone with this condition before. It is more common to be asymmetrical.

Anyhow, life goes on. As normal as we can make it.

We focus on the things we CAN do and not on the things we cannot. We live for the simple ways of having fun: splashing bubbles in water, scooting around on our wood floors, going to the park, having an ice cream and good old conversation! I love Q&As with my husband and my kids! I love the simple things. And a simple life. I even like to cook simple. Dress simple. Why complicate it?

In the scriptures there is a verse that says consider the lily and all her beauty. I am convinced the lily does not complain that she wasn’t taller, or as pretty as the rose, or was another colour, or lived in another part of the field. We can be the same. We can be happy and grateful for all that we do have because our blessings will always outweigh our trials.

I know I have my moments of stress and I break down. I know we have had a depressing winter and sometimes reality slaps us hard. But I also know we are going to be okay. Some questions cannot be answered. And that’s okay too because we have God and prayer and each other.

Life is full of surprises and sudden turns. I used to say that everything happens for a reason. But if I am honest, sometimes I don’t want that either. So I will instead try and learn something from this experience.

On a note about my husband, he is the one who suffers this everyday. I do not always know how he is feeling, but I know my heart has grown softer with compassion. Not just for him, but for everyone. Not only those who suffer other forms of disability, but everyone. Because everyone is fighting a battle somehow. Everyone is faced with adversity.

Our boys are young and don’t know any different. This is OUR normal. Our world. Our life.

And life is good.

Waking Up Into A Dream- My First Day in Sweden

It was afternoon when I woke up on a brown leather sofa in my grandmother’s living room. I looked around. Above me on the wall was an oil painting of a sunset on the water. Water can be so beautiful but I am terrified of it. To my left was a wall covered in framed family photographs. There was a small photo of my family when there had been only four kids. Close to it was a photo of my mother as a young girl. For the first time I saw my great grandmother, she looked like she had been working when the photo was taken. To my right was a large open window with white curtains that danced in the breeze. It looked out to the back courtyard. I was on the ground floor in an apartment building, in a neighbourhood with lots of other buildings that all looked exactly the same. The soft sounds of the upstairs neighbour’s conversations travelled down to us. It was the month of May and the sun shone brightly, trying to cheer up my gray mood.

‘I am in Sweden’, I kept repeating to myself. I am awake, but it feels like a dream. I left reality behind, this isn’t real. I am not really here. I touched my arm, my face and looked at my feet. I saw that I was whole, but parts of me felt missing.

My grandmother noticed I had woken up and brought me a glass of pear juice. It was delicious. I looked at her. It had been several years since she had visited us in the states. Her hair still black with only a few white strands. Her physique slender from all the walking she does. Her face naturally beautiful as she did not wear make up. I could see that she was my mother’s mother. She then started to point out her things and explain them. She had a large collection of white porcelain pieces displayed in a glass cabinet, all labeled on the bottom with her name and the year she got it. She had bookshelves full of journals that she had faithfully written through the years. I looked out the window again as she kept talking. Her Swedish was easy to understand. My mother’s mother, they spoke similar. Just yesterday I had been home in Ohio. Four airplanes later I was here. The world felt small and I grew restless. I stood up and asked if we could walk. She looked surprised but agreed.

We walked around the block. I was looking for something interesting, something that stood out to be “different”. Something that would make me feel like it was okay to be here because there was something I would have otherwise missed out on. We crossed the road onto a sidewalk that was made of cobblestone. It was pretty to look at, but made my ankles hurt. The greenery was beautiful, the cars that drove past were all nice but the thing that stood out the most wasn’t a thing, it was sound. Everything seemed so quiet. The cars weren’t honking. The dogs weren’t barking. People weren’t shouting. The calmness around me a direct opposite from how I was feeling inside, because inside I was screaming.

We walked back to the apartment and she began to cook dinner. I sat in the living room and called my mom. The phone sounds were different. The smells from the kitchen were foreign to my nose. I had just arrived but I was ready to run. Like an ungrateful spoiled girl, I sat with a bad attitude. Complaining about everything under my breath. Blind to the opportunity around me. Eventually I would learn, but I was a hard egg to break. And with that hardness, some things come too late.

A Foreign Community, An Extended Family- A True Story

Many years ago when I lived in Sweden, in my early 2o’s, I had my own apartment in a community made up of foreignors. The buildings were tall, brightly painted with huge numbers so addresses were easy to find. I was number 74 V.2. We were from everywhere. Brazil, Iran, Pakistan, Argentina, Russia, different countries from Africa, America, Poland, Chile, Peru, Iraq, India, and many more. Ironically, technically, I am Swedish. I do not have the stereotypical blonde hair and blue eyes like all my cousins, and I didn’t (still don’t) speak with the same Swedish accent, but I am a Swede. A Swede who seemed to fit better in this international neighbourhood.

Here, I remember especially the women. They’d smile at me and shout out a “hello” in their language as they beat their rugs outside, and I felt they instantly accepted me as one of their own. Sure I’ll pretend a second to be Bolivian! Hola! Okay that was the only one I knew at the time, to the others I just smiled back. These women cooked with open windows and the smell of their food made my mouth water. Where ever I went, there was a woman with children closeby. Be it her own, or her grandchildren, or nieces and nephews, children were everywhere. I was fascinated that all these people from around the world had found their way here.

Across the courtyard from me lived a close friend that I had met and gotten to know. Her family was Assyrian from Iran. I later learned to greet them with a word that sounded like it would be spelled “schlamalockhone”. Her parents didn’t speak much Swedish but it didn’t matter. They were so kind to me! Spending time in their home made me realise how my friends must have felt visiting my family. They only knew English and my family spoke Swedish at home! In time I learned the sounds of their language and when I heard others at bus stops or shops, I always knew if they were speaking their dialect of Assyrian or not and I would greet them with a friendly “schlamalockhone”.

My friend’s mother was such a busy body. From what I observed, she cooked a big pot of food each morning. I can still almost taste her meatballs with buttery rice on the side.Whoever came to the house could have some food and there was always plenty to eat. She then spent the rest of her day helping others. Every day! On days where she was home cleaning, she had the TV on a channel that played her home music. Have you heard of Arabic oldies? I loved it! I became infused by their culture. They easily made me feel like I had more than just friends as neighbours, they were my extended family.

One Christmas I was the only one in my family in Sweden. Christmas Eve was spent with my aunt and cousins and it was wonderful to learn more in depth the Swedish traditions. Christmas day was spent with my Assyrian family. We put on our best dress and went to… I think it was their grandparents home. See the importance of keeping a journal? Memory is so unreliable. So many people were there! And I had no idea what anyone was saying but it was great. More kindness was shown to me. The grandfather said these words, as my friend translated them for me: “Today we understand that you miss your family. Today we will adopt you as one of our own. Feel at home.” He then invited me to bless the big Christmas meal! I was honored! The food was out of this world delicious.

After the meal they all sat around the large living room and sang traditional songs, I had learned some of their dances and joined in on those. It was time for presents but there was so many people I only remember envelopes of money. I watched my friend and her sister open theirs, then I opened mine and we had all gotten the same amount. My heart swelled with gratitude that I was truly accepted that day and I did not feel alone or left out at all. God bless those people for opening their heart and home to me.

I’ll never forget the warm summer nights my friend and I would slowly walk around the footpath that outlined our entire community. We talked for hours. Everything from earth to heaven, our pasts and hopes for the future and probably literally EVERYTHING. Women do have a gift of talking. During our walk, we walked past a soccer field that was right in the middle of the neighbourhood. The older boys playing with the younger ones like little brothers and including them in their game. We walked past whole families who were also out walking, husband, wife and children enjoying the evening stroll. I watched them and thought, I want that one day too! Evening strolls with my family.

Family is always there when we need a friend. Or are friends there when we need family? Either way, this night she was. It was at about 2am, I woke up with an intense pain in my leg. It was a pain that had resulted in a knee injury 3 years before. I went into the kitchen and panicked when I realised I had no painkillers left. This pain would only get worse and it was unbearable. I called her. At 2am she actually answered her phone! She lived at the top of her apartment building and had to come all the way down to open the door for me. In her flat she offered me food and medicine and I simply stayed the night. She was so much more than a friend. She was like a sister. Always there and never upset with me.

I remember talking to her a lot about how much I missed home- Ohio. And it was a hard time for me. But looking back I realise more and more that those years in Sweden had become some of my biggest blessings in life. I cannot thank God enough for the experiences I had, for the life long friendships that were built, for the lessons I would not have otherwise learned. Yes, sometimes trials are blessings in disguise.

And I thank God for my extended family around the world.

xx

(photo credit)

My Mother’s Grilled Cheese Sandwich

Fresh out of the oven, my mom would place the hot sheet of sandwiches on the table. All six of us kids had placed our orders earlier. Some wanted parsley and cheese, some wanted tomatoes and cheese, but for me, just butter and cheese.

During the chaotic half-heard conversations around the table, I would watch my mom quietly use her fork and knife to cut her hot sandwich, one little square at a time.

My mom ate different than my friends’ moms. She had her fork in her left hand, her knife in the right, and she would eat with her left hand. It did look very proper and posh but at my young age, I just didn’t understand. Why didn’t she just cut the whole sandwich into squares so she could just eat with her right hand? Why use cutlery? Us kids just ate with our hands.

At a friend’s house one day, her mom made us grilled cheese sandwiches. The sandwich in front of me looked nothing like my mom’s. It had two pieces of bread with the cheese melted in the middle. The cheese was soft and gooey. The bread was buttery. It was very good. And they ate with their hands.

Growing up in America with a Swedish mom, I noticed these small differences. The normal for my family vs the normal for my friends. As I’ve grown older, I appreciate and understand her better.

I love my mom’s grilled cheese sandwiches. If I am the one cooking, I will make them her way. And just like her, I now eat them with tomatoes and parsley, baked in the oven. If my husband is cooking, he makes them the American way. Buttered bread in the pan with gooey cheese in the middle. And just like her, I eat with a fork in my left hand and a knife in my right.

I miss my mom. We moved across the world a few months ago and the distance is sharpening my memory with details. How she does things. Normal everyday things. Mom things. I don’t want to just remember these things, I want to share them. Here is the recipe:

Grilled Cheese Sandwich aka Bruschetta

Butter mixture: 1/2 stick butter or 100grams butter, sprinkle in some basil and oregano, splash in some malt/light malt or balsamic vinegar, pour in some olive oil, and 1-2 cloves of fresh minced garlic.

1. Butter your sliced bread (white bread, baguette, bagels) with above mixture.

2. Top with sliced tomatoes. Salad, plum, or grape tomatoes are all great.

3. Sprinkle dried parsley next.

4. Top with sharp cheddar sliced or shredded cheese.

Bake 200C/400F for about ten minutes or until cheese is melted and slightly browned.

Serve immediately.

Enjoy! xx

(photo credit)

Facebook as a Journal

“Are you going to facebook status that?”

“That is facebook status worthy!”

“You’ve GOT to facebook status that!”

Ah yes, the facebook status. It is quite amazing how in a few short years Facebook has dominated us. And many of us are using that infamous option -the status update- as a journal. We share with the facebook world our children’s milestones, fun family activities we did that day, quotes that inspire us, and so on. Hey, I do it too! It’s fun and convenient.

But I have to be honest. I miss paper.

Years ago as I sat in a writing class at university, my professor told us about a theory where the very act of writing can tell us more than if we just sit in front of a screen. The story from our minds travel down to the emotions of our heart, and together go down our arm, through our fingers, into our pen and onto the paper as words. More truth will come out if we engage our whole body. Like if we sit with our notebook on our lap. Body pressed against the pages, our heart pouring out into it.

It’s a theory.

Sometimes I think I should go back to always carrying a notebook with me in my bag. I have HEAPS of them! Yes it takes up space. But. When I HOLD it, it takes me back to that place where I once was. And I can see through my handwriting what emotional state I was in. There are pages that are watermarked with tears.

I blog. I do Pinterest. I do Facebook status. I do Instagram.

More and more I keep thinking I’d like to go back to paper.

I recently bought my toddler a journal. I will go back to the beginning of my Facebook days and re-write everything from there into his journal. The nice thing is that Facebook kept track of all the dates for me! I have seen some other lovely ideas like family time capsules, family journals, and so on.

I am thinking of my future generations. I don’t want them to just have a website to read, I want them to touch something I have touched. I want them to know the stories of why I kept certain items. I have a big box of stuff from my grandmother and older generations before her which is great, but there are no stories attached. I wish I knew more. I have so many questions.

So all that other stuff (Instagram, Facebook, Pinterest, Twitter which I never joined) is fun but as with most trends, it’s appeal is fading. At least for me.

I’d like to document life more in the “real” world. The world I can touch things and feel things and hold things and smell things. And then I’ll come back here to My Velvet Notebook, my online diary, and tell you all about it! xx

(Photo credit: I actually found on google that Facebook makes books from profiles!)

“You heading home?”

Many years ago while living in London, I sat on the bus after work on my way back to the HOUSE I rented on King George Avenue. For a long time I was so sensitive to the word home  that I made sure I always referred to my dwelling as “the house” and not home. On that bus, lost in thought I must have had a dazed look on my face as another passenger had said to me, “You heading home?”

I couldn’t help my answer, “I’m far from home.”

This fellow passenger seemed to understand my reply (we both had non-british accents) with a nod of his head. Instead of prying for details, he let the conversation go with, “One of the last stops eh?”

I smiled and nodded as I returned to my thoughts: when will I really get to go back HOME.

I thought about this very short conversation with a stranger as I now sit on the couch with my two sons and I am back in Ohio.

In my younger childhood years I recall a popular teeshirt that had the saying “Home is Where the Heart is.”

If home is where my heart is, then my heart is in pieces.

A piece in Sweden. Another piece in England. And a big piece never left Ohio.

Or am I thinking all wrong? Home is not a location, its my heart. And my heart belongs to my family. No matter where in this world we live, home is always there. And here.

For someone who moves a lot I suppose I have to think like that.

Today’s positive thought: It’s good to be HOME.

xx

(photo credit)