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Showing posts from April, 2015

Not the end...only the beginning

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Last night I dipped in the pity pool...felt sorry for myself, felt that we might be forgotten. This morning I had an epiphany...I know others who feel this way.

In the MTM-CNM community, the group of families who have children who share the rare genetic disease Javad has, many have lost their children. These families have been thrown adrift by the loss of their child. They have felt what it is like to watch others continue with their lives, while their own life has altered so dramatically that they may not be able to see above their own sorrow.

I can't even begin to understand how they feel, these families, my friends, who watched their sweet baby move to the playground in heaven. Each breath they take a stark reminder that the earth does not feel quite the same. Each beat of their heart a reminder that their precious angel's heart beats no more.

Our family experienced something life altering, spirit altering in March and yet, our boy is still here, every day making small incr…

Yoda..wisdom he has

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Yoda is my favorite character from Star Wars. His wisdom recognizing and naming the obvious is, at times, astounding! Tonight I realized that as time goes on, people's lives move forward even as mine has slowed down. Our story continues to unfold, but the novelty of our story has begun to fade. I don't write each night for you., for the most part..I write for me. It has become, over time, a sort of therapy, a way to sort through the feelings that swirl around in my head.

The strangeness of it all is that I want to move on, move forward, but I don't want to forget where we have been. I don't want to be forgotten, I don't want Javad to be forgotten.

I realize how selfish that sounds, like this is all about me, but I worry that somehow the fading of the positive energy being directed toward Javad and his healing will somehow impact his recovery.

I believe that it takes a village...a village to raise a child, and, in my experience over the last thirteen years, a villa…

An X-tra Ordinary Life

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Whenever I blog using the A to Z Challenge, the letter x is always a challenge. It seems that now, thinking about how to create an extraordinary life is most appropriate.

I have been set to re-evaluate life again...what is important, what I can let go. I remember when Javad was little and I realized who were the people in my life that I could really count on, the ones that remind me of the important things.

It is easy to get lost in my life, so busy that I can't see. Being busy makes it easy to forget the chaos that I feel inside. That might seem counterproductive, being busy to quell the chaos, but keeping busy drowns out the noise that's in my head.

Sometimes I feel like there is so much going on that my head might explode...then I would be left headless and, I guess not accomplishing much...LOL...

At times like this, I need to mentally step back and remember that I have so much...my son is alive and improving, my older children are pretty awesome people, a job I really like…

Wonderment...

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Upon looking back at my posts the last few days, I notice that I am painfully out of alphabetical order...

I am participating in the #AtoZChallenge, which helped me get back into the blogging mode. Ironically I went from U to V and back to U. I guess this is a tribute to how tired I am...Friday I couldn't do math (a bit rough for a math teacher) and, clearly, couldn't figure out the alphabet. It makes one truly appreciate how much exhaustion can impact the mind/body/spirit!

Tonight I went to prom...I'm telling you, although they were better than at some dances, I still can't unsee the grinding and icky dancing that happens. I am not trying to sound like an old lady, but it is pretty wild. To call it dancing is a bit of a misnomer although there were some who really rocked it out! Some of these young couples impressed me with their stellar behavior and respect for one another.

With all of this, today was a day of smiles from the littlest. He was happy and smiley. it was…

Unwavering...

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It has been two weeks since we came home...two weeks of incremental steps i the right direction...two weeks of exhaustion for us, in comparison to the two weeks that everyone seems to have.

It is difficult to  be mentally on...rough for my daily life. I am exhausted.

This next Tuesday, three of my classes are taking their Celebration of Learning. Today they did a work sample. I am trying to gather things up as we are nearing the end of the semester...trying to find an ending place that makes sense...

I am unwavering in the believe that Javad will get better...unwavering in the belief that he will get better.

I love my son and my family...unwavering belief for a positive outcome...All us good in our world...I am ready for the next phase...

Good thing I am patient...unwavering in my belief that all things will be ok.

Virtual love...

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Sometimes at night I am so tired that the words I want to write just won't come. Last night was one of those nights...I stared at the screen and finally decided that I needed to honor my exhaustion and go to sleep. Although life is a bit crazy, I am trying to ride it through and make things happen. I have a lot on my plate...I need to work on saying no, but, I'm not going to lie, I love my job and my students...even the ones that are on my last nerve...

Since "the event" it has been strange. Our life is different, our boy is different...we have nurses all the time (okay...most of the time). One thing that hasn't changed, or maybe has even improved, is the virtual love I am feeling from those around me. One might think that Facebook is a place of cold and barren thoughts, but for me it has become my lifeline of love. People from around the world, some I know, some I don't, have surrounded Javad (and, in turn, our entire family) with a virtual love that is enco…

Unbelievable Joy...

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Last night I slept at school...I wrote about the awesomeness that was the program I am involved in, but what I really want to talk about is what was happening at home.

I still think of March 16 as "the day of the episode" or "the day of the event." It was the day that life changed for us. The road we have previously traveled had a fork in the road and we took the road untaken. We veered onto a path that we had never seen before. It has been a journey that I,  at times, struggle with. I am trying to move forward, keep all the balls in the air. Some days it is a struggle.

Last night during the rehearsal my legs started hurting. This pain in my calves and feet is similar to the night of March 16 when I was frantically driving home. It is a strange feeling...burning pain and numbness all coming together. It is painful in a way that I can't really describe.

This morning, as I woke up, I realized that it was the first day, since March 17, that I didn't kiss my bo…

Teachable moments...

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Yesterday at my high school was our "Every 15 Minute" Event, which is a "live action" display of the statistic that every 15 minutes someone dies from  a decision to drive under the influence of drugs or alcohol. The police department came to our school and coordinated the efforts of the students throughout the day.  A very large police officer played the Grim Reaper and he and his growing band of ghosts, went through the school and students succumbed to their imaginary deaths. Ghost-like make-up was then applied and they then joined the band of hall wandering ghosts that we inhabiting the halls. Students took their "jobs" seriously, while finding joy in their community time together.

At the end of the day, all 23 students gathered in the auditorium to practice their "play" which would be performed, in front of their peers, today at an assembly. Even when overnight plans changed and we ended up sleeping at the high school, they took their roles …

Superheroes and smiles...

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Today I was listening to the radio while driving down Marine Drive (alongside the Columbia River.) The weather in Portland was incredible today, nearly 80 degrees and the sun was reflecting off the river. Sometimes, when you live in a place as beautiful as Oregon, it is pretty amazing when you take a road you haven't driven in awhile and see the gloriousness around.

While driving in the sun, music blasting, Superheroes by The Script came on. While listening as the words as they floated through the air, parts of the song resonated with me.

"When you've been fighting for it all your life
You've been working every day and night
That’s how a superhero learns to fly
Turn the pain into power

She's got a lions in her heart
A fire in her soul
He's a got a beast in his belly
That's so hard to control
Cause they've taken too much hits
Taking blow by blow
Now light a match, stand back, watch them explode"

My sweet boy is my superhero...he continues to fight each day...…

Remembering things that bring joy...

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Today I went to watch the Portland Thorns play soccer. I am a season ticket holder, thanks to some kind sharing by my friends Kim and Bobby. I love soccer...it has brought me many years of joy. I met my husband playing soccer, we saw the final of the Women's World Cup as the kick off to our honeymoon, we played on teams together and have enjoyed many National Team games together. It is a place that makes me smile, laugh, cheer, yell.

Today, at the Thorns game, my friend Celena brought some of our students. These students participate in an after school program called Raider 2 Raider that Celena, my friend Clair, and I started this year at Reynolds High School, the school where I teach. It's a Peer Tutoring/ Homework Help program where students help students. The greatest part of the program is that many of our ELD students attend and either tutor or be tutored in their own language. It is incredible and, watching them grow into young leaders, brings me a great deal of joy.

Othe…

Questions...

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It's another two blog day...sometimes the exhaustion of life is just overwhelming and I fall asleep before blogging...usually while watching TV or my new favorite Netflix show, The Almighty Johnsons (it's awesome...seriously watch it!)  It is strange having nurses at night. I mean it's great, but also strange. For the first time in I don't know how long, I am sleeping for a period of time...deep sleeping, I mean, DEEP sleeping. It's both glorious and strange. It is almost like being drugged, deep sleep, but yet, I am hoping in time I will begin to feel like myself again, whatever that means.

Today, Javad smiled again. An open mouth, half smile that almost made me cry. To see a glimmer of himself shining through is amazing. Hope can make a heart soar...a glimmer of my boy in there.  Each day, small, tiny baby steps in the right direction. It brings up questions as to how far we will go, how much I can hope for. I don't want to limit the hope...it is the thing th…

Parent Teacher Conferences

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Tonight was Parent Teacher Conferences...Thirteen hours of meetings means exhaustion in a big way. This morning I rearranged my room (so now it's a mess) and this afternoon/ evening the onslaught began. This year is the first time I have ever been accused of not working hard enough for a child...I pretty much live at school so....I reject that!

Needless to say...I'm tired...I'm glad to be home with my littlest and I still love my job! <3

Otters revisited...I just want to hold your hand.

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Almost two years ago I wrote a blog about the amazingness of otters. With everything going on in my life that blog post has come to mind...well, not to mention that I look at a pair of otters on my desk every day that was lovingly given to me by my friend, Julie.

The characteristic that I love the most about otters is the idea that they tether each other to the rocks during the night. They keep one another from floating into the ocean. Each day I feel as if I am floating away. The balance of my life has been thrown off kilter. I am a busy woman...I teach during the day at the high school and at night at the community college. I help run an after school program for homework help. I am taking a class. Along side this, I am trying to manage things at home.

Some may say that this schedule is ridiculous...I know it is, but it is also where I thrive. Now my head isn't really in the game. As I mentioned before, my head feels like it is floating above my body. When I am trying to think, i…

Making a difference...

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Each night when I go on to write, I check the number of people that visited my blog during the day. I must admit that I am often surprised, and yet flattered, by the number of people that visit and read about our journey with the sweetest boy. Each of you reading these words is making a difference in my life...each and every day.

I was raised to be a strong woman...sometimes it was trial by fire by a woman who didn't realize that her negative actions could have a positive outcome for her children. Frankly, she just didn't think of anything much beyond herself. I believe that her craziness helped prepare me for the current craziness in my world. It gave me a foundation for handling things. Times when I thought that I couldn't go farther forward, I managed. This was one of my mother's gifts...resilience.  A gift you don't really want and yet are happy to have received.

Each of you have become a brick that is part of the foundation that holds our world up. The feeling…

Life, as we know it...

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So last night I fell asleep without writing. It's a strange thing at our house, now having night nursing to take care of the boy. Last night was the first night in over a month that I only woke up a few times. I should feel rested but I mostly feel tired.

It was great to be home this weekend, but it was also strange. It was one of those times when you look around and realize that your experience with life is vastly difference than those around you. I was finishing up grades for school, trying to get to a place where I feel stable, but life has just continued...

My life feels a bit out of focus...people are moving forward and we have moved backwards. Our boy has reverted back to the ways of his toddlerhood. We are seeking some way to communicate...anything. One minute he seems with me, the next he is far away.

Going out this past weekend emphasized how off kilter I am feeling. My head not really attached to my body, like a floating balloon being blown around by the wind. Thoughts o…

Kayaks...a smooth ride

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My father and I have taken his kayaks down the river during visits in Sunriver, OR. I have loved these trips down the river for more than one reason. First of all, I love the water. Although the ocean is my water of choice, the river, with it's smooth as glass current, is a gorgeous ride indeed. When it is quiet you can hear the water parting around the front of the kayak, lapping against its hull. Secondly, the time spent with my father, the shared quiet.

The calm that can be felt as you float down the water, wind gently blowing against your skin brings a sense of peace.

This is a feeling I could really use...peace. It is a struggle right now and I feel that the world is swirling around me. I am caught in a whirlwind of emotions that I have locked inside. There is so much going on, I am not even sure where to start. My heart is breaking for our sweet boy, watching him struggle. Watching him like a hawk, looking for a sign that things are moving in the right direction...a glimmer …

Finding Joy in the Journey...

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If you hadn't already noticed...my blog titles are essentially going in alphabetical order. The "G" will remain missing because our sweetest boy is still missing for all intents and purposes. He is here, but it will be months before we really see his recovery. Although I still believe that he will recover, I also know it will not be speedy. My comment the other day on Facebook was referring to this even though it was far from well worded.

Today we brought our boy home...it is a joyous event. I am so grateful to be typing this post while sitting on my own couch, in my own house. I am comfortable and warm. Javad is in his own bed, being cared for by our primary nurse, Anne, who has been with us since Javad was four months old. We have been lucky to have such consistent care for the littlest.

It is now time to find joy on this journey. This can be difficult during some times...feeling the loss right now. Over the last thirteen years there have been a variety of times that …

The Hole in my Heart...

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There are days like today when the unfairness of the last four weeks comes crashing down...the frustration and unfairness of what is happening with Javad. I feel like the last thirteen years we have fought for him...fought to keep him alive, fought to give him the fullest life possible, only to have that ripped away those Mondays ago.

I am trying not to be angry but the hole in my heart is huge. I love this boy deeply and without fault. He brings me such joy. I would give anything to see him smile, hear him growl. Each moment that I watch his little body, twitch with out control...his nerves are waking, muscles starting to make connections. I am looking forward to watching this happen, but feel sad that I cannot help him fully navigate this next phase of his life.

I will be here, we will all be here, waiting, helping him move forward, get stronger, but the pace that this happens will be slow... I am sure excruciatingly so.

The hole in my heart is large...the desire to scream at the u…

The Frenzied Crawl...

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Today marks three weeks since "the event." It seems strange, three weeks, twenty-one days. If this had been a good thing, we would not even recognized it's passing. Instead it feels like the longest twenty-one days I can remember in many years. The days slowly pass while I watch the furious and frenzied pace of those around me. In some ways it is like watching a movie where the main character is standing in the middle of the screen and the world is swirling around them yet each object moving at the pace of molasses. It is a surreal scene with both the fast and slow simultaneously swirling about.

So much has changed in three weeks...our world turned upside down, celebrating now the slightest of movements as if we have gone back thirteen years and are re-experiencing J's birth. Just when I feel like an expert, I am the learner again, now not only sitting at the buffet of new medical terms and innuendos, but also re-learning our own son who cannot communicate effectivel…

Energy (or lack thereof)...

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Some days while I am sitting here with the littlest boy, I am reminded (by my body) that I am not young anymore. When he was smaller (and we were all younger), it was much easier to bounce back from the stress and drama that sometimes surrounds having a cutest boy with medical issues. As I sleep on my bouch (not quite a bed, not quite a couch) each night in his room, my body reminds me in the morning that my youth is fleeting and dealing with medical issues for weeks at a time not only impacts my mental and emotional health, but my physical health as well.

Javad has had some hits to his energy too. Yesterday was a glorious day that was filled with a lot of fun and joy, while last night Javad's heart started ramping up, beating at 174 bpm and his blood pressure rising. He had a temperature (which made him feel like he was on fire) and he was generally unhappy. A variety of procedures and gathering of various fluids for cultures resulted in a sad and exhausted boy. Today he slept. I…

Decisions...

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Each day we all make decisions which determine our next step and so on and so on.  There are times when we don't even realize that a decision was made until far later when all we can do is pause and wonder if the path had been different.

Today, I decided it was a good day...this morning upon waking, my sweet boy had his eyes open, as if it were a regular Saturday and we were watching cartoons. I told him how happy I was to see his eyes, put his glasses on and Jake and the Neverland Pirates off Disney. I'm pretty sure he was watching although even if he wasn't, seeing him with his iPad and glasses brought me such joy!

Later my daughter called and told me that she as attending the US Women's National Team (soccer) game in St. Louis. She had decided, at first, that the game was not affordable, but the her friend found some amazing tickets for an amazing price and there was not way to resist. She had an incredible time. We texted back and forth during the second half and I…

Community...

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Today was a day about building community.

Today Reynolds celebrated its first Hijab Day. It was a glorious event where young Muslim women were allowed to share about wearing the scarf. It was an opportunity for all students to "see" that wearing the scarf does not change you, but rather may enhance you. Over 100 female staff and students participated in this amazing event.

Students that I work with after school, young women from Somalia, Kenya...young women who wear the scarf every day were thrilled to adorn my head with one of their beauties. They carefully wrapped head after head with joy of their face. Photos were taken and joy was spread. When the boys saw me...Somali, Arabic, Persian boys...their eyes lit up, "Mrs. Mashinchi, you are beautiful...can I take a picture?" It was both enlightening and uplifting. I believe that, for some of these boys, they saw me, and some of their other women teachers, for the first time. It felt amazing...

Community was built at …

Baby Steps...

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Baby Steps...we often say this somewhat flippantly when talking about difficult issues or difficult times.

"I'm taking baby steps," we say to another while tying to navigate through the situation.

Right now my life epitomizes the concept of baby steps. I am taking them in both my personal and professional life.

As a teacher, I am slowly trying to make improvements to improve my craft. This has been a year of craziness in my personal life that has totally impacted my professional life. In the fall it was a car accident which shook me to the core, impacted my ability to think. It changed my body and mind.

 I still have memory issues, headaches which focus out of my scar, and my tremor is worse. This doesn't include the jumpiness I feel when I drive and don't get me started about when others drive.

Now I am dealing with the latest event in our (sometimes) crazy life. The events of March 16 will forever shake our foundation. With every day that goes by, we are taking…

Audiences...

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In one's life you speak to many audiences...lately, in mine, I feel like the number of audiences is increasing...medical professionals, high school students, adult college students, co-workers, family. It is easy to see why the feelings of being spread out might be present and yet, each of these audiences are massively important to my life.

Talking to medical professionals with clarity and calm is crucial when discussing the littlest boy and his current medical situation. I need to be able to keep my head clear and my words crisp so that I can convey the ideas that I desire and not stumble during a time when it is so critical.

Today this conversation included our desire to take our boy home and to address the latest information from his EEG. A decrease in seizure activity means that the possibility of going home is increasing. The ability to share our desires for our son while also expressing the understanding that we know that our journey is long is key. Each movement that we are…