Wednesday, April 27, 2016

Pieces of me...

I was just looking at my list of blog posts and it has been over a month since I have written. This is a long time for me, It is also very telling. Writing is a form of therapy. It is a way that I work through my life, celebrate the good, discuss the not so good. So one might think...hooray....the lack of writing means all things rainbow and unicorn, but I am sorry to say that is not true.

This is what I have learned this last month...

  • living from a place of trauma is a real thing.
  • trying to maintain a normal exterior when your insides feel like they are crumbling is hard.
  • teaching is a hard job and sometimes I feel wholly inadequate to do it.
  • I may look strong but I need to be held up more often than one might think.
  • when I am scared and feeling alone, I become needy and immature in many ways...a person that I don't like.
  • it is a hard balance between "staying strong" and being real.
Last year when Javad had his seizure, I was changed. So many things changed. Although I forged on and stayed strong, inside I am frantically trying to glue the pieces of myself together. Someone needs to be calm, continue to run the ship. One person needs not to have panic be the first response, keep a clear head. This has been my job for fourteen years. I am good at this job, I do the job well, but sometimes I am tired. Sometimes I just want a break. I know that this is the war cry for all parents who have a medically fragile child, or frankly anyone who deals with a life threatening disease or death. The pieces are just there, hoping to be held together.

These last months I have been struggling. I am not sure how else to say it. I have good days and bad days. I have days when I feel that I am terrible at my job and days when I feel like I do ok. Most days I am just trying to make it from point A to point B. Some might think this sounds like I am trying to make others feel bad for me...this is far from the truth. There re so many that are struggling with grief, sorrow, and trauma...being real about it seems like the right way to honor in in others and in myself.

There are so many around me that are doing their best to build a place for me to stand, build a safe place for me to be. I am trying to stand there, surrounded by love and kindness. It's hard...I feel like I am grieving...sometimes the loss feels too big. I am not sure what to do. I stand here...looking at the pieces hoping that one day I will feel better, one day it will seem easier, one day it won't hurt so much and that things will fall together.

I believe that it can happen...I have to believe it will happen. That's what is keeping me going.  One day at a time...one step at a time...one breath at a time, one moment at a time. #giraffestrong

Sunday, March 20, 2016

Three weeks one day at a time...

We have been in the hospital for almost three weeks. Javad is getting daily physical therapy, occupational therapy, and speech therapy for hours a day. He is battling a virus, which means extra respiratory treatments and exhaustion. The doctors have asked for an additional week to compensate for the virus so it looks like we will be here for at least another week. Who knew that I would be excited to to be at the hospital for four weeks (or more)?

Javad's therapy is going really well...he has increased his stamina, and is looking more like his "old self" in pictures and in person.  It is pretty exciting. On April 7 they will have him checked out for a new wheelchair (YES!!! A NEW WHEELCHAIR!!!) which would be amazing!

Overall I am pleased, I am tired, I am weary, but I am pleased. Life hasn't been easy in the recent months but it's nice to have a small and shining light in Javad right now. I am so appreciative of people in my life that are stepping up to support me and Javad's healing....I think there might be a break in the weather of our lives...Thank you all for holding him up. #giraffestrong

Monday, March 7, 2016

The strength of an Army...

Yesterday was opening day of the Portland Timbers...the team whose MLS Cup run and win sustained my spirit last year. If you haven't read about last year, read about Javad, the giraffe and the MLS Cup here. It was a great day. A few hours before the game a friend called and offered me ticket. I had already prepped Javad and told him that we were going to watch the game together, had the nurse lined up to be in Javad's room because he was "needed." It was a plan. Then the call came and my plan changed quickly.

IT WAS GLORIOUS!!!

I got to meet to site in a section that I had never been before, got to watch soccer with people who loved the game as much as I do, cheered loudly, yelled at the ref, felt the love from the people around me, jeered at the Columbus Crew and their hideous uniforms, and finished the game off in fine Portland fashion...in the rain.

There are so many areas of my life that aren't working right now...so many areas that I feel like I am not winning. I am clinging onto a few areas, hoping to make a breakthrough, personally, professionally, health wise. I am clinging to my "year of healing" mantra. I need to shed the sorrow of last year and find my joy. I know I am making positive moves in that direction...hiking each weekend and bringing soccer fully back into my life.

I am making a commitment to Javad and his healing...I know that his strength will bring me strength. My sorrow has worn me down so that I am paper thin and barely able to bind the pieces of myself together. There are those in my life that continue to hold the frayed edges of me in their hands, carefully placing the pieces side by side, reaching down when I have fallen and helped me up.

The Army has held me...made sure that I won't fall to far, too hard, into pieces that are too broken. The Army never loses faith...always believes. This is what I take into 2016. One day at a time...one piece at a time, I will put myself together again.

#rctid #giraffestrong

Saturday, March 5, 2016

Picking up the pieces...one at a time

Today when I was hiking I was doing a lot of thinking. I was with two great women, two women who six months ago I either didn't know or barely knew. At the end of this month I am celebrating my three months back at hiking. When I was young my dad took me out a lot. It was what we did...camping and hiking. I am sure that there was a lot of complaining on my part...sometimes there still is a lot of complaining. Now I sprinkle in profanity occasionally too.

So I was thinking about where I am in my life, the places I'm doing well, the places I'm not. This last year the tiny cracks of my life became chasms. For a long time I suffered in silence thinking that it was better to just deal. This cause such pressure inside me that I thought I would burst. Now I am talking...and talking is creating its own issues. It is both empowering and heart breaking. Honestly, I am not sure which emotion is winning. Adulting is hard, relationships are hard. Sometimes....life is hard.

Long ago I realized that I struggle to make deep, meaningful, and lasting connections with people. This was one of my adult aha moments. Yes, I am great in a crowd, yes...I can talk to almost anyone, but I struggle at relationships. I don't do them well. I, in all of my outgoingness, struggle to maintain friendships.  I didn't learn that skill from my mother. Deep connections weren't encouraged or taught. Anything I have done has been hard work. Being around others is frankly exhausting. Don't get me wrong, I love being with people...it's just hard. I feel like I am in a spotlight and people see that I am awkward and unsure.

Last year happened...it really showed me my own weaknesses. It showed me that I am not as strong as I thought. It showed me that things I had counted on to be stable, weren't. It has left me floating about, untethered. I am frantically trying to figure it out, figure out how to behave, what to choose, how to act. I am trying to pick up the pieces of my fractured life...find the ones that fit together and leave the ones that don't. I don't know what the picture might look like when it's done. This is hard...I want to control the outcome and I am having to let that go. I know that I am focusing on healing, focusing on doing the best I can at work, in relationships, at being me. I am focusing on healing Javad. I am focusing on getting a clear head, and seeing a clear path.

This is hard work...the hardest work I have ever done, but I believe that I will pick the pieces up, one at a time, and when I am done, there will be an amazing picture of my life. I don't know what that will look like, but I am getting there...one piece at a time.


Wednesday, March 2, 2016

Joy and sorrow...one day at a time...

It has been a rough few weeks. Two weeks ago Javad was admitted into the PICU for pneumonia...his heart rate was a 180 for over an hour. We spent a week in the PICU, which for Javad standards is a blink of the eye...the day before the speedy PICU admission we had been a the doctor asking for the possibility of being admitted for intensive rehab. I was prepared to really list my reasons and potentially fight as to why this was in Javad's best interest...we were reaching the point where if we didn't do SOMETHING, we may not move any farther. It was an easy sell...so easy that here we are a week later...in Rehab.

It's been a rough few weeks for our little MTM-CNM community. It seems that there is a rise is heart or seizure related activity. More and more I am realizing that, although incredibly horrible, we dodged a bullet last year. Javad survived and, although we are unsure of all the potential damage, he seems fairly unscathed. I mean, let's be realistic...we have lost a lot. Javad essentially cannot move  and has lost almost all function, but he survived. I try to focus on the good, but it is hard not to feel the loss. Then, in weeks like this, I am reminded how luck we are. Two children lost their lives in the last week. Both had major events that started their decline. Both events were startlingly similar to last year with Javad. There are two more boys in the hospital...both so sick.

We are happy to be in Rehab...even if it sounds funny, I am grateful to be here. Two days in the books and Javad is working really hard. I am grateful and hopeful. I know my own personal sorrow is at times deep, but I also know that I need to have joy to celebrate that we have made it through this year. We continue to be warriors. I continue to take life one day at a time...it is all I can do and , frankly, I am grateful that we have days to take...one at a time! #giraffestrong #mtmfamily #giraffesforjavad

Monday, January 25, 2016

When life reminds you that things will be ok...

This last weekend I went to Bend, OR with my girlfriend, partner in crime from work, and overall awesome woman. The goal of the weekend was to sleep, do a hike, grade some papers, and enjoy spending some time together. There were challenges, like when our original hike ended with a snow covered dead end road, and victories, finding a new hike that was just the right size and at the end, a little gift that reminded me that I am on the right path.

As I have shared before, this has been a year that has pushed my limits, made me wonder if I was going to lose my mind. I had flashbacks of twenty years ago when I thought I would be lost in the crazy, and found myself deep in sorrow I couldn't express.  I have struggled to find joy, find strength, and find peace and worse, I feel that I have been walking the path alone. When you have always been the strong one and now you feel weak, where do you turn?

Asking for help has been uncharted territory, one that I am working on. Expressing my feelings has been frustrating and many times unsatisfying, but I continue to forge forward, knowing that if I don't, I will completely lose myself and all that I have worked for.

I don't know what the future holds. I don't know what is to come, but I do know that I am seeing knowledge, seeing joy, seeing solace from the anger and sorrow that, at times, is so overwhelming that it just brings me to tears. Every once in awhile, when I feel frustrated and defeated, the universe reminds me that there is an army behind me...people I know, and others I don't. I will make it through this one too...I have to believe it to be so, because believing is what has brought be through this year...it is the thing that has given me hope. So this weekend I was filled with friendship, fresh air, and a reminder that the Timbers Army was there...complete with a license plate parked in front on me when we returned from our hike...This will be a year that I take "No Pity" on my sorrow from last year...I will be victorious and, at the end, I will put a star on my victory too! #giraffestrong #hikingforthosewhocant #giraffesforjavad #rctid #hike4 #52hikechallenge

Thursday, January 14, 2016

Time passes...where am I?

Time has passed. I realize that it has been almost a month since I have written. So much has happened, yet so little has happened. Things have moved forward and we have stayed in the same place. Someone reminded me the other day about how long it had been since I blogged...

There is no real reason for this...I'm overwhelmed, I'm swimming, I'm trying to stay afloat, I'm making it. It's been a weird time but a growing time. This has been one of the hardest years of my life. I know that you know because I've been open and honest about the struggle. I am grateful for the people that are in my life, those who have stepped up, those who have come out of nowhere, grateful that they kept me from falling off the ledge when it was so frightening.

I'll admit that I wish I could have been better, wish I could have handled things better. On the outside, to most, I seemed okay, not great, but handling. I really wasn't handling much...inside I was spiraling out of control, falling deep into a hole that was frightening. The holidays weren't great because I felt empty, hollow, and it's hard to find joy when you can't even find anything.

Don't get me wrong...I am working on it, I am getting better, day by day, moment by moment. These kinds of times don't just turn themselves around in a second, time is needed. I don't know what the next steps will be but, ironically, I am not too worried...I am finding some peace. I am focusing on my health, my wellness...I am finding it on the mountain, step by step, one hike at a time.

Javad is having slow improvements, tiny glimmers. I am working on getting him into rehab therapy to work on physical therapy, occupational therapy, and speech...I want him to get stronger, get healthier because I know that his improvement will also foster my improvement. In these times I am intrinsically tied to him. In these times, others are also stepping up...his teachers at school, his people who are holding his healing in the light. I have a giraffe that is going on my hikes, a virtual Javad, of sorts. He is a part of this journey, even when he can't actually go. His spirit is there, his heart is with me...this is the year of growth and change, the year where healing happens. It has to...something has to give or it will crack open beyond repair. I am choosing better, I am choosing change. I am ready. #giraffestrong #giraffesforjavad #52weekchallenge #hikingforthosewhocant

Monday, December 21, 2015

Holiday Elf...

This fall has been filled with some dark times...times where I am peering over the top wondering if the light will come in and others where I am standing on the edge grateful that I am not at the bottom. Today a ray of sunshine arrived at our door...well, technically she arrived at the United Cargo bay from distant Puerto Rico. This sweet girl, being renamed Leia, has brought joy to my heart already. She is a part of my bid to get healthy and fit (can you say morning and afternoon walks?) and bring love and joy to my heart. Maybe not everyone is totally in love yet, but I am in love...and have hope that this is a sign of a new beginning.

I'm taking things one day at a time. I realize that I must create my own happiness and quit expecting things to come to me...I am hoping that, in time, she can be trained as a therapy dog or a companion dog. This will be a win for both myself and Javad.

Today, this sweet face is starting the steps forward...2016 here I come and I am bringing my own Force to awaken...Joy.

Sunday, December 20, 2015

Memories like razors in the mind...

Recently I was asked to submit a story for a book around the subject of parenting a medically fragile child. I have been mulling around the story ideas for a few weeks and, frankly, I should have gotten my submission in some time ago. The focus of this book will be to give perspective to medical professionals as well as to parents, which helps to give a focus for my story. When deciding what to write, I realize that there are many events over the last fourteen years that I could write about, but trying to focus on one has been the challenge.

Clearly Javad's most recent episode is the one most prominent in my mind...it is the one that has made the most profound impact on our lives. So, today I began writing...I didn't realize how much everything is still in the forefront of my mind, even after nine months. It is almost profound what the mind can do, remembering the smallest of details. I mean, it took me over a month to learn the names of my students this fall and yet I can tell you exactly where I was standing last March when I received the phone call from home about Javad.

Memories are a strange thing, cutting like razors on the mind. Small little cuts, which together create a wound that is raw and open.

So tonight, I am struggling to finish the story, maybe because although the initial part of the story is done, we are still living in the repercussions. Our story is not done.

There are so many things about my life that have been altered with this story, directions that are being challenged, wounds that were opened. I feel that maybe continuing to write about it is one way for real healing to begin. It seems like it is the only way...it's like walking into the light. It might be the only way to see.

Wednesday, December 9, 2015

Javad, the giraffe, and the MLS Championship...

This has been a crazy few weeks. For those who know me, you know that I love soccer. I met my husband playing soccer, met some of my dearest friends from soccer, and, this year, have made many new friends through soccer.

Last year, on March 16, our world changed forever. Our sweet boy, who had beat so many odds, had his first ever seizure...one that was so big that it stopped his heart for almost four minutes and nearly cost him his life. It has been a year of lowest lows...Javad's seizure has blown a cavern through our lives. For the first months (maybe the first five), our boy just wasn't there. Snowed by drugs and the trauma of (let's review here...) a seizure, four minutes of CPR, three days of cooling (yep...a Javadsicle), then two days of thawing, two days of double the seizure medication, then three more weeks of sleeping. We brought him home after a month and had no idea what might happen. He was barely conscious and was being evaluated using the coma scale.

I was trying to find escape and, my love of soccer was where I found it. Although I was barely able to go to any games this season (although I am a Thorns and Timbers 2 season ticket holder), I went whenever I could with my dear friends and followed their progress. This was a season where things just didn't seem to be falling together, a feeling I both understood and related to. The Timbers Army, the fan base in Portland, never lost hope. There were good games and there were not so good games, but ultimately, the Timbers kept playing. Over the summer, things started to turn around, similar to what was happening at home. We were seeing glimmers of our boy.

The summer became a summer of "turn arounds" and a summer of hope for both us and the Timbers. I got my giraffe tattoo, in honor of my own little giraffe, Javad, and the Timbers began making a late season run (I am not saying those two things were related but maybe!) Each month we were seeing more and more of our boy. I am not gong to lie...it is hard...he still can barely move, but he smiles and his lips are ready for a kiss at almost all times.

The fall of dreams continued with the Timbers, and an unlikely bunch of practically no names, made the playoffs. We weren't surprised, although I think the league was. Playoff games led to last Sunday's MLS Cup Championship game. I knew they would win...I had seen the magic and believed.

Now I am going to ask for that magic to flow over my boy...The odds are not in his favor...I am realizing that, although I believe that we have plans for improvement, it will take a lot of work, by both him and the community around him. I believe that this can happen...why? Because I just watched it happen in Portland. A city, an Army, surrounded a group of players and a coach that had a star in it's eyes and said, "We believe in you..." The magic is real in the Rose City....I am taking some magic for us here in Happy Valley...I am ready for a change of the tide. I am ready for a full recovery...I am ready to bring my boy (fully equipped with headphones because the Army is waaayy too loud) to see the place where his mother got her hope back.

It will happen...I believe...I think I have an Army behind me too! <3 #rctid #onwardrosecity #giraffestrong #giraffesforjavad