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Showing posts from May, 2015

Moments of Clarity...

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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 wa…

Hitting the Wall...

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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…

Call to action or possibly in-action...

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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…

A Huge Hurting Heart

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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 …

A little bit of Illinois...

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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 j…

Waves and Smiles...

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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 wou…

If you really knew me....

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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 kno…

Be the Change...

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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…