Friday, July 3, 2015

Heartbreaks to Reality Checks...

This has been one of those weird weeks...maybe it's the heat that has my brain flying all over the place. Every day I look at my sweet boy and fight the conflicting feelings of joy and sorrow.  Part of me feels selfish...I have nothing to complain about...my son is alive, but I am in mourning over the boy he was, the boy he is now, what he has lost. Each day is a struggle. He can't swallow, can barely move his hands or turn his head. I try not to focus on what he can't do but rather what he can do or has learned to do since he came home... He can smile (he learned again), he can put his lips together for a kiss. He is happy...

The last thirteen years have been a roller coaster of emotions. It has been a series of times where I have mourned accomplishments he would never make, trying to keep in mind that his mere survival was a miracle in itself. People kept reminding me how lucky we were whether through direct comments or innuendos...reminders that I should be grateful, not make others feel bad.

In many areas of my life I am the positive one...the one that looks at the world from a place where all things will be okay. Even through all the ups and downs, I have always stood in a place where Javad will come through all of this okay on the other end but sometimes, even I struggle. This is a struggle that I usually carry alone, one that is hard to explain to others. I try not to speak of it because I will seem like a complainers or like I am trying to bring attention to myself, which is far from what I would ever do...the fact that I am writing this at all even makes me a bit nervous and we'll see if I actually post it. It is like the dark secret that I carry...my life is what it is...I am not sorry, I love the littlest beyond what I could even imagine possible, but there are days, like today, when my heart feels broken inside my chest. I don't want to talk about it to anyone, but if I don't purge these feelings from my brain they begin to take over and eat away at my ability to be positive.

I imagine that this is the way the life is...a cycle of mourning to celebration. It is strange in many ways, because it really isn't that different than parenting a healthy child...except the valleys are lower and longer, the peaks more rounded. The celebrations of the small things are bigger because you never know when your story might end. On March 16, our story came close to it's final chapter...I am well aware of the line that we narrowly missed. I think about the smallest of details that made the difference for us...simply being directly taken to the hospital of our choice saved us precious hours that, I believe, made the crucial difference.

Today is one of those days where I am struggling. My heart hurts, I want to climb to the highest peak and scream and cry until there are no more tears. I kissed my boy a lot and said a thankful prayer that I still have the ability to do so, but then felt angry that he can't do the things he could do such a short time ago. The feelings whirl around inside and I am unsure what to do with them. I try not to give them too much play time in my head...more time gives them power and I don't have the energy, frankly, to give them power.

So, for today, I let the feelings swirl...tomorrow, I try to lift my head and move forward. It's the only direction I can move, but first, I might have to pick myself up off the floor.

Wednesday, July 1, 2015

Equity, Equality, and Me...Where do I fit in it all?

The last few days have been ones where I have been doing some really deep thinking about who I am, where I fit, what I think. I have been taking some classes recently. One about diversity and another on language acquisition and it has been really making me reflect on my own thoughts and ideas about equity, equality and my view of the world.

My Facebook feed has been filled with rainbows and photos of many of my friends who are celebrating that all are able to marry. Friends that can now feel relieved that their marriage will be recognized regardless of where they may travel within the US. Yesterday photos of American flag superimposed over pictures began to appear. First it was from some that I thought may not be thrilled with the Supreme Court's ruling, but then there were others. What was this for? Hatred? Standing against? Or (as someone aptly said today)...the Fourth of July? (Shannon face palms!) Regardless of the background, it did make me pause...Where are we? Where are we going?

I live on the outskirts of Portland, Oregon...I work on the outskirts of Portland as well, although where I live and where I work are radically different. I am a white woman who was born and raised in this area. I tell you this because, I believe, that these things have helped to form who I am to a degree. I was raised quite poor, although I was not aware of the depth of our poverty until I was much older, but still I recognize that now, especially as it relates to my students.

I have been teaching in my current school district for 15 years and in that time it has changed dramatically. When I was first hired it was largely white, although many were low income. There are a lot of apartments in our district, although there are also pockets of houses where affluent families live. This has created a juxtaposition of wealth...high and low together and culture. In recent years, there has been much gentrification of the north part of Portland, which has pushed primarily African American families toward the outer limits of Portland. There has also been an influx of families from Africa, Burma, and other war-torn countries where families are fleeing, sometimes for their safety. Our little melting pot in East County is becoming more and more diverse with almost half of our 2015 graduation class being minority. Ironically, all of this is happening in the "whitest city in America."

We all come from different experiences, but I feel, if we are going to truly move forward, we need to recognize where we are, where we have come from, and where we are moving. We also need to be aware of those around us. It is not enough to say, "I understand," because, as a white woman, I don't. I don't know what it is like to teach my sons to have their hands in sight at all times if pulled over by police, I don't know what it is like to have family killed in front of me, I don't know what it is like to be a woman who was not allowed an education simply because I am a woman. I don't have these experiences. What I do know is that I have had opportunities in my life because of the people I have come across, I know that my father exposed me to people from around the world and that has made me a more tolerant and knowledgeable person, I know that, even though my family didn't have much money, I was given every opportunity to be involved in music, theater, and attend college. I know that I have the opportunity to open doors for others because of my role as an educator and be a voice for my students. 

I also know that I have the responsibility to be aware of my position in the universe and how it impacts those around me...I have the responsibility to be aware...really, I think we all have that responsibility...we need to see how our actions, our words, who we project into the world, impacts others. 

It is only when we are aware of ourselves that we can really see others.




Sunday, June 21, 2015

The end of a year and now, the next beginning

This has been a crazy year...A year that has been both awesome and insane.

When I started this year I was excited for the new challenge...I was essentially starting multiple "news." I had moved to the High School, was starting at the Community College, going back to some of my "old" students. I was excited for the new beginning. It didn't start on the greatest of notes...I irritated my BFF with my selfish insensitivities, I riled against change, while also cherishing the newness of my new job. It was a beautiful disaster.

This year will forever be known as the Year of the Car Accident, the Year of Javad's "Episode," the year my world was simultaneously turned upside down and come full circle. I have become a better teacher, better person, better mentor. I am more self-aware, more driven, more focused.

I am ready for a new and better year. It starts with the restructuring of my curriculum, the focus being writing in math. My teaching schedule is different this year...Algebra 1, Access (9th grade bootcamp), and Accelerated Geometry. It will be all freshman, all the time. I am ready to take on this task...moving things forward for our freshman, being part of a team that is building success for all students.

This is a year of building, getting stronger, being better...I am ready. Let the challenge start now!


Sunday, June 7, 2015

The joy of two...

Today my niece turned two. I had the privilege of being present at her birth, handing her to her mother moments after she was born. It was an amazing moment, considering both of my natural born children were both born by c-section. I did not actually witness their birth, having been numbed before and then given large doses of pain killers afterward. I am not saying that a c-section is an easier route, with weeks of muscle weakness following the birth, but having never actually witnessed birth, watching my niece was indeed an amazing experience for me.

I feel grateful to have an opportunity to be a part of her daily life since she and her parents live with us. Being greeted each morning by her smiley voice brings joy to my heart. Watching her grow and explore is a bit of revitalization since I never got to witness these natural milestones in the littlest due to his medical issues. Knowing how precious these moments really are, it makes me cherish them even more with her.

In life, we are often given precious few opportunities to directly impact the lives of others and, as a teacher, I feel that I have been given this opportunity in many ways, but it is extra special having the opportunity to see and witness the growth of a child from the actual beginning. I am lucky to have this opportunity and be entrusted with her sweet heart...lucky indeed.

Thursday, June 4, 2015

Seniors last day...another step in their journey...

Today was the Reynolds High School Class of 2015's last day of school. This group of students is a special one to me. When these students were in the 7th grade, Reynolds had a massive layoff which left our middle school short almost one-fourth of our staff. As a result, many teachers taught multiple preps (the number of different subject/classes they teach) and teams of teachers that shared common students was lost. The following year I had the opportunity to loop up with this group, meaning that I had quite a few of them for a second consecutive year. It was also the year that I took very capable AVID students into Algebra 1.

That year became one of the most amazing years of my teaching career...I believe it was the beginning of the teacher I am still becoming. The addition of AVID students meant that some students needed extra support in Algebra 1, thus the idea of College Bound Math Club was born. We stayed once a week after school until 7:00 pm doing math, eating dinner together, and building a community that become so amazing that it built lasting friendships that I see today.

Many of these special students, the Class of 2015, helped me see the power of belief. I was able to give students a perspective about themselves, as successful students, successful learners and their success reminded me of the power I have as a teacher, the power to encourage. This year I had the opportunity to have a few of these students again, some as math students, others as teacher assistants. The relationship built years ago maintained, a common appreciation.

Today, as my seniors prepared to walk out the door, I take pride, knowing that I was a step along their journey. I hope that, in these years, I have helped them see themselves as capable learners and amazing human beings. I had the privilege of attending AVID senior night and was thanked, by name, by three of those College Bound Math Club learners. My heart soared with their compliments, but more than that, my heart soared knowing that I was a stepping stone along their journey.

Today was the Class of 2015's last day of their high school career, but it is just one day along their academic career. These students are destined for greatness, each and every one. I am grateful that I have experienced the glory of being a part of their lives...they have taught me so much about teaching and about being a teacher. Someday they will look back on this day and not look at it as an ending, but rather a beginning of this next amazing step of their absolutely amazing lives!

Monday, June 1, 2015

The final countdown...

I am ending my first year at the high school and, although I have enjoyed it immensely, I will be glad that it is over. It has been a crazy year...my car accident in the fall, Javad's "incident" this Spring. I felt like the year was a perpetual wait for the other shoe to drop.

There have been many moments where this year has been filled with joy. The after school program  that two co-workers and I began was amazing...each and every day an incredible experience of success and improvement. It was an opportunity to build something...something that I hope grows year after year.

The roller coaster of emotions that I have experienced this year have been deep. They have been difficult to manage at times but I have been grateful for those who have held me in their hearts. Sometimes it is hard to see what you have, when you are focusing on the things you have lost.

In eight school days the year will be done. I will celebrate with a special group of students that I carried for two years in middle school. I am looking forward to rest, as so many teachers in this part of the year are...

Then preparations begins again for the year to come. It becomes the cycle that repeats but for now I'll just do the final countdown...




Monday, May 25, 2015

Moments of Clarity...

This weekend has been an interesting one...interesting in good ways. First and foremost, my daughter, Stesha, was offered (and accepted) a job at Louisiana State University. That is the great news. The crazy news is that she is moving this coming weekend and starting her new job on June 3. It is awesome and crazy all at the same time.

Meanwhile, at home, Javad is doing well. When I post pictures of him it is deceiving...he looks much stronger than he is. He has fully regained the ability to give a cheesy grin (with accompanying drool coming from the side of his mouth) and can now stick his tongue out and close his mouth for a period of time. Similar to when he was a baby, David is working hard at having him do "monkey see, monkey do" tasks like stick his tongue out, give kisses, etc. On Friday, his teacher came and started to use a laser pointer with him so he say "Yes" and "No." Step-by-step he improves, although it is not fast, he is improving.  This was a moment of clarity for me...we are making progress...maybe not as fast as I want or as dramatic as I would like, but he is here, moving forward. I need to be celebrating that, focusing on what is, not what isn't.

This weekend we didn't have night nursing for two nights. Not having nursing really confirmed to me how lucky we have been over the years...Javad has required a minimal amount of care at night and we have been able to sleep. Now that his medical status has changed, he requires more monitoring. This was another moment of clarity for me...in our world of medically fragile, Javad has moved into a place where he was stable, even at times, strong. I need to remember that he is a fighter, not be defeated by this set-back, rather encouraged by each move he makes. I need to focus on what is, not what isn't.

So many things are different, and yet, they are the same. I am lucky that I have close friends who understand this crazy life we lead, friends who understand that energy ebbs and flows, friends who see themselves as part of the solution. True that through this all, there has been mourning. Similar to when Javad was a baby, I remember the things he will never do, and now I am hoping that the things he used to do are on the table again. The last thirteen years have been ones that I tried to fill with hope and belief of what he will be and now, I need to continue on the path. This is where the real clarity comes...I am in charge of my own joy, my own hope, my own fears. I can choose how much power to give fear and I choose joy. I believe that Javad will improve...I know that he is inside, trying to figure out how to tell us what he wants and needs.

It is time to lift the fog and find the moments of clarity, time to see the future ahead, time for hope and joy to reign. It is time to choose and...I choose Javad.

Thursday, May 21, 2015

Hitting the Wall...

There are times in recent days, when I feel that the level of unfairness in life is too great. Having a disease that is unfair enough...then having something else on top makes it worse. So many in our small unity are suffering...Allie, Mitchell and Javad are currently fighting medical issues in addition to their disease.

I feel like I am hitting the wall. Yesterday seemed to be the day when all of the balls that I have in the air came crashing down as I frantically tried to grab them. I went to an appointment and was chastised by the doctor because I haven't been able to come in much over the last few months. I lost it...the last few months have been challenging for all of us and I need encouragement not pointing out my shortcomings. I cried...a lot then went to the AVID Senior night, looking a wreck, but there to support some of my favorite kids who are moving on.

I still feel like I live in this weird sense of reality, one of vastness and minutia. On one hand, I am looking a big pictures, school improvement, and ways to help my students and then I am celebrating the movement of a finger or a kiss the next second. I have small anxiety attacks on a regular basis, my legs feel numb and hot and my fingers and arms tingle. Just thinking about it right now makes my feet tingle. I am exhausted, mentally, physically, and emotionally, and I know that there is not an end in sight.

The wall seems overwhelming...I know, logically, that this will pass, but my emotions are all over the map and I feel like I am standing at the bottom looking up. There are so many incredible things to celebrate in our life...our older kids are moving to their respective new job locations and things are going great, but the littlest boy breaks my heart...his inability to move or respond in a way that gives him power is crushing my soul. People around me are great, caring, and loving, and I appreciate it, but the hurt in my heart is painful.

I hurt for my son...I hurt for my friend Jenna's daughter, and I hurt for my friend Donna's son. These precious souls should have all of this pain and frustration...they were already given the bad genetics card...I think beyond that they should have been given a free pass.

Friday, May 15, 2015

Call to action or possibly in-action...


In my life these days, I feel like there is a bit too much action. I long for the lazy days of summer, the times when laying on the couch or sleeping in is the norm. Now our life is run by nursing availability and I am feeling sleep deprived and exhausted. I feel like I have been insensitive to my friends who have always struggled with the lack of night nursing while we peacefully slept with the littlest all wrapped up in his bed. Now we adjust to our new life...the life I struggle with...my husband struggles with.

My husband has been sick the last few days...not eating or drinking enough and plagued by stomach issues. Since the even in March, he has struggled with appetite and eating. This is a normal stress response for him, but at almost two months out, I worry about him. He has pulled within himself (another norm) and I know fights his own inner demons that have to do with that night. I can't help him with these and wish that I could wave my wand and be back to the days before March 16...make changes that may have changed the outcome.

Clearly that is not what I can do...I can sit and send love to my husband, let him ride this wave...I can try to catch some sleep when I can, I can cope to the best of my ability. I am ready for some serious inaction in my life. I may try to figure out how to have a hammock that the littlest and I can swing in over the summer...snuggle a bit and continue to work towards improvement. Our family still needs to heal and each day I realize that we have come far and still have farther to go. This is my call to actions...rest, recoup, and care for one another...

Tuesday, May 12, 2015

A Huge Hurting Heart

The MTM-CNM Community is one where it often feels as if we are of one heart...when there is joy, we all celebrate together and yet when there is sorrow, we all grieve. This has been a rough Spring...Javad had his "episode" (as we lovingly call it) and now more of our friends are having a rough time. Little Grayson recently received a trach and is struggling with pain management and how to deal with this new thing in his life, Mitchell was struck by a taxi on his college campus and broke both femurs as well as a variety of other issues. We are lucky that he survived. Finally, sweet Allie had been feeling under the weather and got to celebrate her 10th birthday with friends. Sadly, she began feeling worse so her mom, Jenna. took her to the doctor and she was admitted. She is one of the sweetest girls you will ever  have the opportunity to meet. Today Allie's heart stopped and she is on life support. As a mother who recently went through this exact thing...it is a struggle watching your child struggle. This is where our heart finds the challenge. On one hand, we draw together for support and caring find the commonalities and on the other, when someone is hurting, we all hurt as a giant hurting heart.

As a parent of a medically fragile child, I often struggle with the idea of fairness. I know that I have addressed this in the past, but it continues to be an area where I have internal strife. Overall, I feel like I approach my life with optimism...I try not to focus on the negative, although even at the best of times, I may feel like climbing to the mountain top and screaming. This is one of those times. As I watch Javad struggle each day, making improvements so small that they are almost not perceptible, I wonder where the fairness in life is. Why is it that others don't have these same challenges, why is it that my sweet boy keeps getting struck down, who said that you will only get what you can handle? Sometimes we feel like we are going to break!

Sweet Allie is on my mind...her sweet smile and sweet spirit shining through. Her mother, one of the most amazing young women that I have ever met, is one who deserves the entire package...a life where love abounds. Pictures of their family make me smile...children gathered, love gushing from the seams. Joy screaming from the page. Allie's sweet heart stopped and now she is in critical condition...our community weeps and cries...this is not fair. My wish for Allie is that she will get a new heart...one that is strong, one that pumps strongly so that she may never feel weak again...not in the same way.

Grayson, such a sweet boy, has recently gotten his trach. It can be a rough transition for some, this life breathing tube. For my sweet boy it was instrumental in his growth and health. For years I was unsure how I felt, but now am on the front line of the club that educates about trachs. I think about sweet Grayson and and send him wishes for a pain free and stress free transition. It can be scary and frustrating for all involved at first... <3

Mitchell, one of the most incredible young men I have ever known, has been to each MTM-CNM Family Conference, bringing his sense of humor and pride to the event. He is a shining example of what an amazing family and strong parents can bring. Mitchell is in college and showing us how living with this disease can be done. In one moment, Mitchell's life, and many of ours as well, was changed. Crossing the street in his wheelchair he was struck by a taxi and now recovers in the ICU. He is on the ventilator and will take time to get strong again. In times like this, I struggle to find the meaning...why becomes the question where there is no answer.

Many families in our community have to cross the path where fair and unfair meet. Having this diagnosis is already a frustration, at times, dealing with issues that, as a parent, make you feel powerless. Fighting against insurance, medical professionals, supply companies and so on. A job on top of the job of managing every day "regular life." We are lucky, in many ways, with a community of cheerleaders supporting us in so many ways. These are people that I have relied on for guidance along my path. Each of us walking together, supporting one another in good times and bad...one massive heart beat aligned together. When times are rough, as they are for some though, it feels one a huge hurting heart.
























































































































































































































































































































































































































































































































































































































 on the other