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

Friday, May 8, 2015

A little bit of Illinois...

I am in Illinois for Stesha's graduation. She is getting her Masters Degree in Public Administration. It is pretty amazing for so many reasons. Stesha's journey has not been an easy one. She was a exceptional young woman, a student who read voraciously, was an incredible student, fun loving...Javad's birth, although an incredible gift to our family, was a rough one. all of our energy was focused on Javad and his health...we thought she was handling all things fine, but in actuality, she was struggling...

High School was a wash...my brilliant, year ahead of her peers, daughter, slowly made herself flunk out of school. It was craziness...at the end when we finally took her out of school, she had failed almost everything, except Chemistry and Pre-Calculus (my bright girl, after all!) We enrolled her in the local Community College and began the journey that will come to fruition tomorrow.

She is hoping to get a job in Club Sports, a love that began with a part-time secretary job at PSU. Her love of this career began at minimum wage. She was in love from the beginning...it's all she talked about. The plan to go to the NIRSA National Convention set the plan in motion. First it was the decision to apply for a Graduate Assistant position, then we looked through all the potential schools, finally settling on eight of them.

She applied and was offered a job...in Illinois. Two years has passed and here we are...graduation in tomorrow. We have walked a long path to get here, but I could not be more proud. She is an incredible woman, one that I am proud to know,  proud to call my daughter. Tomorrow I will stand, my heart beating with pride, tomorrow is a day I was not sure would come. Her future is bright and I know that she will be launched into the most incredible life and to know that all of this is because of a little bit of Illinois.


Tuesday, May 5, 2015

Waves and Smiles...


I haven't written in a few days...my recovery from the amazing weekend has been a bit overwhelming...in a most excellent way! The weekend was fabulous. It was deep, emotional, funny, heartwarming, educational and much more! Worth every piece of emotional exhaustion!

Yesterday I didn't return for work. Javad had his first post-hospital doctor visit. It had been quite the ordeal to set up. First of all, he is not back into his chair yet, so we had to use medical transport to get to the appointment, then we needed a gurney at the appointment since we were going to be at the hospital for almost 6 hours. You would have thought we were asking to build a gurney with the complications that arose, but ultimately, the fabulous people that care for Javad, made it happen. We went to the appt, hung out on a gurney and then returned by transport.

Javad had two big appointments yesterday...the first was an EEG to see how his brain is working and second he went to see the neurologist, who would then be armed with information from the EEG. So we got him into the EEG and after sticking all the probes to his head, they videotaped him while reading the brain waves. He watched a movie throughout the entire movie (which I can't remember what it was) but was unable to follow some commands yet. He is still working on both gross and fine motor skills.

We had lunch in the Atrium and saw some friends from Randall while we waited for his appt with Dr. Huffman, then neurologist. We managed to get his gurney into the doctor's office (which they now know they can do! :) and had our chat. Good news...Javad's brain waves look better...he is still having some spikes but overall better than before and he will remain on the medication dosage he is on now. Although I don't think that she was overly impressed with his physical improvements, we are and continue to hold him in a place of healing. She wasn't doing backflips, but did agree that we are on Javad's time...which is exactly why she is our neurologist!

Overall we are pleased. I think about a song that we heard this weekend, "Why have you come to this Earth?...to Love, Serve and Remember..." When I think about the littlest, I know that his journey here on Earth is not done...he is here to teach and love...and give smiles...lots and lots of smiles!

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 personal...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 days...my 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 fear...to 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!