Saturday, May 2, 2015

If you really knew me....

In the Challenge Day training, as well as during Challenge Day itself, there is an exercise called "If you really knew me..." The exercise is designed to help people drop their facade and "get below the water line," a phrase that represents getting below the water that hides below the top 10% of the iceberg that represents our feelings and emotions.

This exercise can be a powerful one for both the ones that were sharing as well as those who are being shared with. For many there are tears, since they are opening their hearts which can be raw with emotion. This workshop goes even deeper since we are there for three days, a trust building today, an opportunity to share and deal with anger, and whatever tomorrow brings.

If you really knew me, you would know that I have been living from a place of fear, a place where I lack control. If you really knew me, you would know that I have struggled with my feelings of being adequate enough. If you really knew me, you would know that I love my students, even the one that annoy me! :) If you really knew me, you would know that I am proud of the work I am doing this weekend, but wish that all students would have the opportunity to be affirmed and complimented, like I have have had the opportunity to do so far.

I encourage you to try this with your children. The sooner we can break the emotional control like
the ego, the sooner we can get real, like Tuesday...quiz if you really knew me...

Be the Change...

Today I had the opportunity to participate in the Challenge Day"Be the Change Next Steps" workshop. I had the opportunity to participate in Challenge Day this fall at my school and it was an amazing experience. I am of the mindset that I can be the best I can by being real and true with people, including students. I understand that there are many that believe that teacher need to be separate from students, need to remain distant. I believe that I must indeed stay professional, but yet be real. Students do best when they build relationships, feel connected. If we want to be real, we all do best when we feel connected.

Today filled up my cup a bit..I was told that I made a major difference in who students saw themselves as, that our after-school program is making a difference and has filled a (much needed) hole. I feel like I have been living from a place of fear. My body is having a weird stress reaction these legs are on fire and ache in a way that is hard to describe. I think about our past, and I guess that the fact that no one ever told us that Javad might not make it may have made us less prepared for the reality. It's a reality we never wanted to face, a turn we never wanted experience.
Only two times have I been that afraid...once when he was two and then March 16...I'm not going to lie, I am struggling with keeping my stress responses in check.

During the workshop my legs were killing me. I don't know why, but I do know that it was frustrating because of the lack of control I feel. That was one of my lessons (one that I seem to need to learn over and over again)...I need to let things go (Cue Else from Frozen here...) I am enough in what I do. I am enough as a teacher, a mother, a friend. I need to quit letting the voices from my past dictate my actions now. I want to be part of a movement for good...I want to be the change.

Wednesday, April 29, 2015

Not the end...only the beginning

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 incremental improvements.

Maybe this was part of the purpose...maybe this was my lesson to learn. I need to see broader, feel deeper, understand that when you feel adrift, someone needs to step in and remind you that you are not alone, that the breath that moves within your lungs has meaning. There are letters to be written, texts to be send...gentle reminders that we are not alone.

We need to remember that this is not the end...we are nowhere close to the end...this is only the beginning.

Yoda..wisdom he has

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 village to heal a child. The MTM community has been instrumental in helping us raise Javad, heal him, and love him to our fullest extent. I want that village to continue to surround us, surround him with their strength and love. bring peace to our souls.

Yoda says (in his Yoda-ly way) that my fear must be named before it can be banished. The fear has always been the same...the fear of being alone, being abandoned. In the past this was reflective on me, the person, rather than now, me, the mother. I can't do this alone...we can't do this alone. We are exhausted, spent, but gather our strength from those around us, our village. So I have named it, my banish it, I need to trust that those around me will stay, that we will not be forgotten, even when it is hard to remember. We will continue to be surrounded and wait for healing...healing that the mighty Yoda might help bring...or maybe that's just a fairy tale...or something bigger, like the Force!

Tuesday, April 28, 2015

An X-tra Ordinary Life

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 son is alive and improving, my older children are pretty awesome people, a job I really like, students that I feel I can/am making a difference with. I should have nothing to worry about...each day on it's own, one step at a time. This is the time of creation...creating healing, creating peace, creating hope, creating an extraordinary day at a time.

Sunday, April 26, 2015


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 amazing. Each and every day we are seeing improvements. It has been incredible to watch him take these tiny steps forward. If I can remember it, only two weeks has passed...he will continue to improve. Each and every day will bring smiles and, soon, I hope to start hearing growls...My sweet boy never ceases to amaze me...brings me hope and wonderment...I am blessed indeed.

Friday, April 24, 2015


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.

Thursday, April 23, 2015

Virtual love...

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 encompassing.

There are days where I struggle...I know that it is true for my husband as well, although he wouldn't tell you so, and on those days, the people who read this blog, like it on Facebook, leave kind words as comments, and the like are sustaining us. Text messages, phone calls, thoughts sent through the clouds. These settle upon us like a blanket, warm and comfortable.

Things are improving...small, tiny movements that, at times, feel like the flutter of a hand or a small turn of the head. Eyes tracking, mischievous smiles make our hearts soar. Questions of how Javad is improving bring an opportunity to tell about the small things, although I realize that to the questioner the improvements seem very tiny.

We are in a world of microscopic improvements. Meager morsels given to improve our spirit. We lap it up ravenously knowing that each tiny bite, each improvement, is a step in the direction of our boy. You walk alongside us...reveling in our joy and sharing our sorrow...we feel your spirit...know you are there. Thank you for continuing to send your virtual love.

Tuesday, April 21, 2015

Unbelievable Joy...

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 boy...I didn't see him and kiss him. It was strange. I feel that I am connected to Javad in an odd way. I have become a bit of a "Javad Whisperer." When I rub his head or stroke his arm, his pulse rate goes down,  He begins to slow his breathing and relax.

I'm not going to lie that it is possible that Javad is also a bit of a "mom whisperer" as well. Seeing him, touching his face, kissing him brings me peace and calm. Seeing each smile when I come in and the smiles that asks for more kisses bring me unbelievable joy...a joy that wells from a place deep inside me.

I remember when Javad was born...the love that I felt was so big I could not describe it. I love all of my children, but this love was different. Maybe it is because he had so much to lose that the love and joy he brought had to help fill the space. He is a fighter, this that continues to defy the he does this, this fighting, I smile and my heart swells because he continues to bring me a kind of joy that is unbreakable...this makes me smile and he continues to bring me unbelievable joy...

Teachable moments...

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 seriously, knowing how important the message is to their peers. The whole night was not hard work, we also went to see a movie, laughed, and cried. The evening was a success overall.

A quick sleep at the high school and we prepared for the big presentation. An incredible slideshow laid the foundation for the seriousness of the presentation. It began lighthearted then progressed into more serious. Their incredible performance left students quiet and pensive. There were tears shed by adults and students alike. It was a powerful message overall.

I am so pleased that I have gotten to be a part of this incredible event and look forward to spearheading it for future years. I think the greatest part of it all is the reminder of how important the teachable moments powerful the message is to be heard.

Whether the message is one that is life changing or simple, we must keep an eye out for these moments to make a difference...these small but powerful teachable moments!