Saturday/Sunday Sharing…A little different.

I was 24. I held my 3 week old daughter in my hands. It was my 2nd day of being fully alone with her on my maternity leave. I was really struggling with postpartum baby blues. I was watching this exact footage of the Today Show. I remember the adrenaline as this was happening and I was watching. It happened again as I was watching this morning. The footage still had the ability to instill and create fear. I remember being so very afraid. Extremely afraid for what was happening and what the future would bring after this. I called my mom. I called my husband. I cried. What followed was days of a blur for a few reasons. I had a friend whose husband was in one of the towers and missing and she had a new baby daughter just like me. That was our “in common”. We were internet friends. We were August 2001 mommas going through our pregnancies and then following raising our babies together.

The news coverage was constant for days. No shows. No DVRs to escape. No Netflix (that I remember). All news stations cable and local combined their news reporting so that everyone had all the same news and same sources. Now as a media teacher I understand just what a big deal this move was and I haven’t seen it happen since and since then our 24 hour news cycle has only increased. It literally changed the way we get our media.

The only escape from the coverage was to turn it off, but fear kept me from that. My guy would go to work. I would try and turn the TV off and engage my baby girl to just escape. I wrote. I wrote a lot. So I want to share some of what I was feeling. Some of what I wrote was so personal to my daughter or even my husband because I was trying to just make sense (like everyone else) of what was actually happening. I have pages and pages and pages of writing to her, to the world and of what I dealing with. Here are some brief excerpts:

Sept 11 11 AM- “The President said there are several planes unaccounted for and has ordered all planes that aren’t going where they should are to be immediately shot down. There are so many bomb threats that I have lost count. They are everywhere. All planes were to land exactly where they were. It is eerily quiet because we live by the Indianapolis airport.”

Sept 12 10:39 PM – “I am so tired of feeling down and depressed about all of this. I tried to watch a movie, but it just doesn’t feel right to turn away from the coverage. I don’t even know what feels right at this point. I want to grasp onto the life we had before September 11th, but that isn’t even possible and no I am not being dramatic. It will never be the same; how can it? My baby girl won’t know life before September 11th and I am angry about that. My heart breaks and I know now that we will know war like my ancestors knew war. No one is thinking before they react and all I can do is pray. I don’t know what else to do.” 

Sept 17 11:56 AM – “My friend has confirmed that her husband was lost during the impact of 9/11. All I have is sympathy for her and her precious daughter. They moved from abroad for peace.”

And every single year since then on 9/11 I send love and prayers to my sweet friend Liat and her daughter Sapir. A forced anniversary. I have enjoyed seeing both of them go on to make the best of an unthinkable situation. Sapir has no idea just how many have supported her from afar.

Now I teach students who don’t even have any idea what 9/11 was. Just the other day I said something to all my girls about September 11th and my youngest said, “What’s that?” I said, “Oh yea!” And did a lame job trying to explain. How can you ever explain something so catastrophic with any sort of justice. My answer….YOU CAN’T.

Every year I mark my own memorial of 9/11 by being silent on every media. Tomorrow will be no different. I will never forget. I will never forget for Shai, Liat and Sapir. I will never forget for all the others whose lives were taken that day.

May we always remember. -MR

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Date Night # 13453

My guy and I usually have a date night about once a week. We always go to the same place and eat the same thing. We are such regulars that we don’t even have to order. IMG_7123They know. That is kinda how our marriage has worked. We just find what works and it becomes a natural part of the marriage. That is what works for us. Routine and simultaneous movements together.

But we changed it up this week. We changed it up only in a small way and it just felt so different. But yesterday as I sat in a tattoo shop for my fourth tattoo and my guy was sitting there with me I had a moment. One of those moments you are so grateful that you have this person with you for the mundane and for switches from the mundane.

My goodness I have been with him for almost 21 years in a few months. I have had four tattoos with him holding my hand and that isn’t so momentous or gushy as I appear to be writing it. It is more about just always having that person there and making the mundane into fun date nights.

As I was sitting in the chair my tattoo artist asked me about the meaning behind all myyear7 tattoos and this newest one. I grabbed my guy’s hand and realized that every single one is centered around this mundane life we have created together. The hills and the valley, the pain and the happiness.

The first I got three months after I stopped nursing my last daughter as a symbol of taking my body back from pregnancy and nursing. The second was a semi-colon to symbolize my years of battle with my contamination OCD and recurrent depression as a side effect of the OCD, the third to symbolize the terrible year and subsequent recovery from my guy’s trigeminal neuralgia and microvascular decompression surgery. The years of fear that lead up to and after his brain surgery. Five hearts surrounding my semi-colon each one representing our family’s struggle with one teal to represent the love for my guy. The circle of hearts never ends and never begins IMG_8487which takes me to the newest tattoo. A bracelet of love around my wrist. A line of love that never ends.

The tattoo artists love our story because that is what it is about. We always get the same reaction, “Wow, that is a lot stuff.” And they are right it is a lot. It is whole lot of love and a whole lotta living. That is marriage and that is why we appreciate the mundane. When life gets mundane it is our fresh breath of air. Our survival.

This post wasn’t really supposed to be about our love story. It was supposed to be about how the mundane with my guy can be so much fun. It was supposed to be about us laughing with our tat guy when he said, “YouIMG_0673 guys have a pretty fun marriage, huh?” Because is all of that stuff that much fun? It was supposed to be about the way he expected us to follow up the tattoo with some romantic dinner and night out, but instead we told him we were going to the hole in the wall Mexican restaurant that is in a bowling alley that we go to every Friday or Saturday of every weekend and have for two years. He thought that was pretty funny. And then it was supposed to be about how throughout our weekly dinner I decided to try all the various Mexican hot sauces to just see how hot I could take it because that is where life is at.

When really it is about my family and how each one of them is woven throughout my heart and soul in ways in which they will probably never truly understand. The tough stuff, the happy stuff and the way we pull together is what life is all about. A tattoo can never symbolize it’s end as some assume because most of the tough stuff never ends. TN doesn’t go away, I live with functional OCD every day, we live with the tough stuff everyday, the tough stuff I rarely talk bout on my blog. But one thing is consistently true and that is that love always heals and it always wins. I live my life with this belief and I believe it to my core. My family shows me this. I may lead the charge of love, but it is because they inspire me to. This is more than marriage, this is my family. My every mundane day that we all decide to get up, keep going and live a life full of love.

With love written on my heart and my body -MR 

Time to stop saying, ” It will be okay.” 

In my experience of this world I know fear is a great motivator. It creates an adrenaline burst and motivates forward movement. But sometimes it is also meant for us to take a pause and make a change. 

The last two weeks of multiple global amber alerts, mothers taking their babies to the park and then taking their lives, clowns, violent recorded for social media shootings, politicial scandal. Good versus bad and bad versus good. Another school shooting, a call to a grandparent that he couldn’t take it anymore, so he killed his dad. Guns and violence. Sex scandal and lies. 

Then email after email in my inbox of my daughters Istep results. Her NWEA scores. Points in the grade book based on RIT scores. BOY. MOY. EOY. This score decides your future. Decide what you want to do with yourself at 7. The college you like, a goal for your PSAT. 

My goodness make it all stop. Why do we adults keep saying this is all okay? Am I the only adult left sitting in shock with each one of these earthly revelations? The emails to my daughter that include me talking to her about RIT scores? Are you kidding me? Hell yes I am jolted. Hell yes I am mad. And I know what these words mean. What a crappy assumption for a parent who is struggling just to get home in time from work to hug their kid. 

And why are we not up in arms when another child dies in a school shooting? For real, is our society so far gone at this point that a young elementary school boy is shot while on recess and dies and you barely even acknowledge it? And video after video after video after video after video after video and still it happens over and over? And over. 

The culture that makes me teach my daughters how to defend themselves and be aware of their surroundings. In a movie where we plan our escape. That same culture that attacks our first female presidential candidate about the way she looks and acts and in the same manner is disgusted that we have a candidate that thinks women are there for the taking. A reward for hard work or money supposedly earned.

None of this okay. We have to stop saying it is. I could put them in a bubble and protect them. Or I can teach them how to mauever this strange place responsibily. All the while hoping they never become so oblivious to the world around them that these things don’t shock them they dismiss them as okay. None of this okay. 

I believe I can’t fly. 

The first time I flew I was 18. I had my first credit card and a burning desire to travel. I walked into the airport and purchased the next ticket.

A few things are happening as I think of this story. First is who was this girl? Never ever have I lived so carelessly. Second, can I get some of her back? 

I caught the travel bug that weekend because in less than two hours I was in the warm sun and I was in love with the beach. I had been to the beach before and it was 12-16 hours of traffic jams and curvy mountain roads. 

After that experience rarely did I drive more than four hours. If I wanted to go airplane tickets were purchased. But then I had a family. Airline tickets are expensive. I would often send the kids off with my guy and I would stay back home with our latest little. 

When I was 7 months pregnant with #3 I decided I missed the beach and I wanted to be with my baby girls at the beach. So I flew down to Florida. 

The two hour plane ride with my #1 and #2 was riddled with anxiety attacks and the reality that in a split second my whole world could literally crash down. 

Once we landed it was a very long tear filled call to my guy that I would not be flying home and that he needed to find a way to get us home. Yes it seems ridiculous now and it was. Thankfully those three airplane tickets were turned into a Vegas trip for my guy later. 

But I have refused to fly since. It has made it hard to vacation or travel with my guy. Something we used to do a lot together. I decided if I couldn’t get there by car I wasn’t going. 

So we made it the mountains. Eight hours and not a horrible drive. We saved almost two years to take that trip. Fast forward three years, saved money and the beach calling our names and we are headed to the beach in two weeks. 

I have had a unique and soulful attachment to the ocean. I have been more times than I could count. I haven’t been in over 7 years. We sat girls down this winter and asked where they wanted to go. The ocean was the unanimous answer.

Flights weren’t cheap enough and honestly my anxiety wouldn’t let it be an option. So 12 hour drive here we come. But I am so glad to be heading to the ocean with my family. My #3 will get to see the ocean for the first time. 

Maybe I will fly again, but I don’t know. That saying that being a mom is forever having your heart outside your chest is true. As long as I feel that way I doubt I will be able to fly as unreasonable as it is.

Inspire it. Live it. Give it. Reblog: Grace

Here again I find myself seeking out Grace. Capital Grace because always closely behind Grace is Love. 

Reblog from 1.24.2012: 

As a parent there are funny teaching moments that happen as your children grow up. The weird awkward ones that for me usually stem from well versed social norms that my children had not yet embraced or even understood. For example, teachable moments like where we don’t blatantly call someone fat. Yes, I believe, all of my children have done this. The intentions are never full of malice or harm. But still what person likes to hear a tiny toddler say of them, “Momma, that person is fat.” Or worse yet when they point the finger back at you and say, “Momma, why is your skin jiggly?” (I speak not from experience…yeah right).

How many present days (aka birthdays, Christmas and the like) did you watch in horror as your child opened a gift they either did not like or had already received? It is as if you were watching it in slow motion and praying to everything holy that what is on their face is not being read or worst yet….SAID. But it does get said and you sit back shielding yourself from the judgmental light that is now being bestowed upon your head.

These moments provide great parental passage into the teaching of grace but grace, the word, to define and to talk about and make more tactile is hard. What exactly is grace? Is it how we deal with things? Is it how we speak? Is it a thing? Is it how we act? A verb…grace? Or a noun…Grace? I imagine each person has to define grace by how they believe and use it’s powers. For me, it certainly has it roots in religion and spirituality but it is also much more. It is a verb. It is an action that one chooses to impart into their daily dealings. And more than anything in my daily life it is my filter. It is the way by which I try and think before I speak. That certainly does not mean that I do so all the time. Most of the time when I react without thinking I found I have left my grace at home.

But teaching children to have grace seems a much easier task and really the audience is more forgiving right? What happens when we are an adult and we say something, maybe even unintentionally, that comes out and leaves those in it’s path hurt or worse mad? My biggest struggle is having grace when that happens to me. When people say intentionally cruel things or speak without thinking but I then become required to apply some sort of grace to the situation I find myself irritated. Why can I not just revert back to those toddler ways pretend like I didn’t know it was not okay to be an jerk back to them the way they were an jerk to me?

I guess that is the funny thing about grace. You have to practice it to have it. So one could surmise that in order to have grace it requires at least a meager amount of forgiveness or forgetfulness. Both of which I am terrible at. I don’t forgive easily and really when it comes to hurt I don’t forget either. Somehow grace wins in the end for me. But mostly because I don’t like confrontation. I am not afraid to stand up for what I believe to be right and true but would I argue that I am graceful? Not at all but I think the word graceful and full of grace are very different. When I can flip on that ‘grace filter’ I think that makes me more forgiving because it gives me time that normally a reaction in the moment without grace will not.

Therefore, as I try and decipher grace’s illusive meaning and apply it’s practicality to myself I can see that while I might not inhabit Grace, I certainly have sustained it in action. Maybe not always in beauty but certainly in kindness. The idea that grace is equated with beauty I believe lies in the principles of forgiveness and fortitude. Both actions of beauty and kindness at work.

As you contemplate why this post? Why today? As with most moments in anyone’s life that garner attention, people say things without thinking. Think of that portly woman being asked, “How far along are you?” Or “at least it is not cancer” to the woman who just had surgery or the girl who has been dealing with cancer and cancer threats for four years and someone sentimentally tells her, “Feel better soon” as if chicken noodle soup and a days rest will put cancer fears back to bed. All comments meant with what I hope to be masked in kindness just come across as jerky. I had a few. I have heard a few my friends have received them. It got me thinking how great this “Grace filter” is sometimes. (Click on pictures for credits)

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A different sort of year in review…

Every year in the blog I do some sort of year end wrap up. This year is different. This year my blog has served a very different purpose than it ever has. It hasn’t documented the every day hum drum of life. It documents some things and some things get left unsaid, but if I do this review right most of the important stuff will easily be remembered.

I saw this on pinterest and thought it was a really interesting take on the year in review and hoping it serves as a walk down memory lane for me.

14587398123_69b593e6a3_z10 Highlights-Accomplishments and Best Memories: 1) Watching my family’s faith, love and strength grow in immeasurable ways. This is not really the way you want it to happen, but I remember in those first days several people tried to tell me if there were some good to come from it all that would be it. I had no idea how it would bond us all. 2) The absolute elation when Dr. Banas here in Fort Wayne told us, “I can’t help you, but I can set you up with the best.” I was so worried our lives would be forever spent in protein shakes ashbday10and pain that I had to sit and witness on an hourly basis. 3) And that moment wasn’t that far from the phone call from Indy from my guy after seeing Dr. Cohen-Gadol he said, “They are getting me in in a week.” 4) Not to be out done by telling my guy 247+ times that they found two compression’s on his brain that were aggravating his trigeminal nerve. It was very groundhog’s day like, but wonderful each and every time. 5) Not every good moment centered around TN, Baby girl # 1 turned 13 and we got her good with a surprise party. 6) #2 was picked to help compose a musical piece for FAME something she saw her sister do and wanted to do since. 7) Getting accepted into the Ball State PhD program. 8) Starting a masters program in communications and rhetoric and learning so many new things that I thought I knew or should know but don’t. 9) #3 starting kindergarten and doing amazing despite concerns since she was our last. 10) The massive amounts of support we received this year from friends and family is hard to utter without losing my breath. We are blessed beyond comparison. 

10 Disappointments-Failures or Missed Opportunities: 1) The biggest by far is having to defer my PhD program indefinitely and I am not sure I will ever feel resolved over this, all I know is I cannot realistically be the student I can and need to be at this point with my guy’s TN. I hope one day it won’t be a regret or missed opportunity when my life looks very 41different. 2) Getting healthier in my life. There is always an excuse for why I need the caffeine I do. This year was my best excuse yet, but I know it is just that…an excuse. An excuse I need to quit making. TN isn’t going anywhere and neither is my busy life. I need to just derive my lack of energy from what I eat. 3) I miss my family a lot. I live two hours + away from them in almost every direction and sometimes it is so hard to pack us all up to leave and go see them. I want to and need to, but I don’t because it is hard. Refer to excuse above. But then when holidays come and I don’t have my mom’s cooking or my grandma’s hugs I feel sad and lonely. I learned a huge lesson this year in the importance of my family and I feel close to them all, but I need to see them more. I realized this weekend that my nieces and nephews are almost adults and how much I have missed on seeing them because it is hard to travel and I don’t like it. 4) Softball season. The second it is over I am sad. The minute it is here I complain about the money, travel and time. I need to get over it because I love the chaos and crazy and family time we get traveling. 5) How much time I spend beating myself up for not looking pretty enough, for not being perfect enough, for not cooking enough, for not being a good enough friend, daughter, mom, wife and the list goes on. I seriously look at social media sometimes and feel so inadequate and I am not sure bf1why. I know my priorities but I still let it kick me in my side every time. 6) The opportunity to spend more time with my guy. I made a promise in the darkest days that our relationship would forever be changed and I would always know just how fragile life is and our relationship. And for the most part I do, but man is it easy to go back into being upset because the toilet seat is up and he stinks at matching socks. 7) Another year has passed and on my priority list I am about at the bottom. This reflects in my health and diet more1d84c-6a019aff3f67ab970c019affb5be14970b-pi than anything. 8) To continue to try and make our lives as normal as possible and realize TN is just another component to this crazy life, it is NOT something I can control. 9) A better garden. I love to garden, but since I have had kids I just let it fall by the wayside. When I have energy (which is seldom) I usually opt for something else beside the garden. It is an awesome family activity and something that my guy and I both love, so why would we not do it? 10) Probably the most important of all of these is to be more forgiving of myself for all the above. You know that saying, “You are your own worst critic” ? Yup that is me. I know my time is limited, as is my energy and I am only one person. I also understand that that can be an excuse, but most of the time it is truth. It is my truth. 

3 Game Changers-Three things that shifted your priorities. 1) The most obvious is my guy’s TN diagnosis. It was piano11devastating, life altering, priority shifting and heart breaking all in one and we went through it twice. 2) Seeing my guy in ICU. I will never ever forget that fragile state and what it did to me. It changed me to the very core. I imagine myself as a quilt being sewn and there is a wrinkle that you find in it after you have sewn it all. That wrinkle is not something you can get out and you just have to find a way to live with it. I feel angry, sad, happy and changed for seeing it. 3) This is a strange one to put into words. But my guy takes care of me. It isn’t in anyway where he takes my independence away from me, but he truly makes my life easier in a whole lot of ways. We have been together for a ridiculously long time and all of that time being taken care of I had to finally stand on my own two feet alone this year. I stood alone in ways I never even dreamed were possible. It was so super scary, but in the end it was so good to see I could. There is an independence within me that I never knew I had.  

3 Things I focused on 1) It is no secret, I am so passionate about what I do for a living. It will always remain one of my steadfast dedications of time. It is mine. I didn’t get it because I know someone. I worked hard for it and I work hard to maintain it. 2) Part of that job was something new I began to focus on. I have always loved theater. That love didn’t change
once I grew up. My love is different than the usual loves of theater though. I love the back stage, the lights the sounds and the chaos. I got to stage manage and light/sound/tech for our school play. I am doing the same for the musical this spring and I am in love all over again. I realized I will always be the silent theater type and I am completely okay with that.
3) My family. We had to really just rely on each other so much because no one can really understand what it is like to watch someone go IMG_0172through what my guy has gone through. I am so grateful for the focus on all three of them. They are amazing little people who are growing up to be amazing big people. 

3 Things You Forgot About1) How much I love to cook. I often cook to relieve stress and get a break. I need to do that more and make more time for it. I have never walked away from cooking being disappointed. 2) More time on me. I need to make time to take care of myself and my needs. It is so hard, but I have too. 3) Photography – I need to remember to take pictures more with more than my cell phone. I love photography, but doing it so much for school I often don’t feel it at home and I need to capture those moments more. They are vital to my existence. 

Reflections for Next YearI need more family time, more time for myself and more focus on the inward and less on the outward. I have an amazing job I love doing what I love doing. I need to focus more on the things that I love to do with my family and for my family. In that I will get more time with my extended family and my immediate family. As we head into TN this January I hope to deal with it with more grace and love than I did last year. I will also be more forgiving of myself if I am not and recognize that the person I love more than anything in this world is hurting and therefore I hurt. I need to be grateful for every single second of my life because I know you aren’t promised anything in life. I need to always remember that love always wins, you just have to let it. 

Baby Girl Updates

Holy cow, how in the world do I have a 13, 10 and 5 year old? When did that happen? Life just does that doesn’t it? I realized yesterday as I was reading my blog that most of my blogs are about Kyle and his TN and not really the original reason that I started this blog so very long ago. That isn’t necessarily a bad thing, I hate blogging about them the older they get because I just feel like there are things they need to decide to share, not have me share for them.

AshleyBut what Momma can’t tell you the good things about her kiddos? I know I can. I guess I will start with baby girl # 1. She is 13. As in the big teen years have arrived. I always envisioned she would be irritated by me and my presence as she was growing up. But I find that I think she actually enjoys my company more now. She has begun to matriculate to her room and there feels like days we don’t see her. She lives on Instagram and netflix. But that is okay. She is always good for a shopping or movie date. The girl loves movies almost as much as her Momma. Thankfully, we like similar movies, unless they are romantic comedies, then she is out. She is a pretty cool kid and she has officially surpassed me in height. She still struggles with her allergies and asthma and usually they are fairly under control. This fall has been a little different, but I am imagining that is a metabolism change. She has struggled a bit more and meds have had to be readjusted. She also is following her momma in the migraine path. Thankfully, she and I recognized them much earlier than I ever did and she has meds as needed for those. She has been doing amazing at school and seems to absolutely love it. She can’t wait to tell us all about it at the end of the every day. The girl is super smart too! Scared sometimes to make mistakes, but super easy going personality.

Then we have the beautiful #2 who although she looks just like her Daddy is just like her Momma. She is my kindred spirit. Sheabbie will be sitting with the family having a normal conversation and just disappear. Once we go looking for her we will find her and she tells us she had a story idea so she just had to go write it down. That is so me. One day I was cleaning up files on the computer and I found a ton of stories written by her and man were they good. I love that about her. She is also super sensitive, but has just absolutely just flourished at the middle school. I was originally worried how the middle school transition would go for her, but she has just done amazing with it and really seemed to have blossomed. She has some truly awesome friends that understand her and seem to love her as much as she loves them. But she loves nothing more than her puppy and her family. Roxie has proven to be quite therapeutic for her and she has taken much responsibility for her care. It has made them especially close. She also is doing amazing in school. Ironically, both of the girls made it to the final rounds of their grade level spelling bees and will be competing against one another in the school wide competition after break. # 1 tends to be a natural at academics, as in she doesn’t need to really study, but number # 2 obsessively studies. We sometimes have to make her stop. So we shall see how this goes for the two of them. She has such a fun loving personality, but don’t fire her up. If you do you will know it.

anna1Then we have baby girl # 3. She also seems to be following in the path of her sisters academically. Thankfully, we put her into school younger. She had met all of the kindergarten benchmarks at their first round of testing in the fall. However, socially she is right where she needs to be. This was something we kind had to maneuver around with the other two. We wanted to get it perfect this go round and it seems we have. We did worry a little that it was too hard for her. The rigor of an all day classroom, not necessarily the academics. She would come home and just crash and if she didn’t crash you would wish she had because dang she was a treat to live with. But it all adjusted out and she loves it. I do wish that half day were an option, but in our state it really is not unless you want to pay heftily for it. She to is also flourishing. She is making friends and is in love with school and her teachers. She hates missing which is a tough when she is sick or there is a delay. Her first delay day she through a fit that I was driving her to school. I told her no one would be there and she did not understand. Clearly she is at that state where you believe your teacher and school staff live at school. She so very inquisitive now and obsessed with figuring out how the world works. She also identifies the stories people tell on the radio or in person as fiction or non-fiction. It is quite humorous.

I am so ridiculously proud of all three of them and how wonderful each of them are each in their own ways and the cool things they bring to the world. I am so proud of them with how they have handled this past year. It has not been easy. In fact, I know when they look back it will be incredibly hard, but they have been amazing little people that are growing into even more amazing big people. I know that we didn’t create that amazingness ourselves. They are surrounded by love, laughter, awesome supportive friends and family who love them unconditionally and support each and every single move they make. We are so very lucky and blessed to be parents to these beautiful people.

Merry Christmas from my family to yours! This year our family wore teal and sent out teal focused Christmas cards to support Trigeminal Awareness. We also raised $ throughout the year in different ways to send to http://www.facingfacialpain.org/

girls1

Life is what you make of it.

The E clan has been perpetually sick since Thanksgiving. It has been one thing after another. In the fourish weeks since Thanksgiving some one in my house has ran a fever, puked, been puked on, had a headache, had a stomachache, had breathing treatments, passed out, had nerve pain, a root canal and multiple cavities filled, braces worked on and teeth pulled, had an earache has slept almost 24 hours and had the flu (the illness not the stomach version). christmas2014m

It doesn’t take rocket science for me to know it was kinda our own doing. Stress will kick you in your butt and keep kicking. Those last two weeks before school got out my guy and I were literally grasping through the hours. We just wanted to get through them and not get the dreaded call from school that one of the girls were sick. Or have to finagle classroom subs because we were sick. All of which happened and we survived.

But by the time we got there I knew it was so very important that we re-evaluate why things were so rough this fall. The stress of my going back to school has disrupted the schedule. The stress of trigeminal neuralgia and trying new meds. And somehow both of our jobs have been incredibly stressful this year both for very different reasons. Add in sports schedules, a play, piano practice and a myriad of stuff and it was a perfect storm of not enough sleep, not enough healthy eating and too much caffeine to survive for me. I am trying to revamp it all because not much is changing for the spring semester.

Kyle got into the neurologist with Goodman Campbell who Dr. Cohen likes to work with. He sees him either the 16th or 19th. I am not sure because I don’t have it here in front of me. They added additional neurotin to his meds and with it has come some memory issues. Mostly they are just entertaining at this point, but he is on the same dosage as last year before the surgery. Thankfully, this year he doesn’t have all the other meds added in. But it is still frightening that we are here again. I can say two things for sure, he can eat which is not at all where we were this time last year. In fact, I remember us struggling because Santa could not eat his cookies last year. The other is that his pain is not where it was last year. It has returned to the surgical side and it is also on the right side. Last year his pain was off the charts. He is not there now. He is having the shocks on both sides and the constant numbing like pain. Again migraines have been pretty well controlled and really only flare when he is crazy tired.

FamilyphotoI am hoping in January we have more of a plan of action and idea of where he is headed. He struggles (we struggle) with the meds. They make him so tired. They steal his memory. They age him. Their side effects right now aren’t outweighing their benefits for now. That is why it is so important for me to control that above chaos as much as I can. Calm and peace are so important.

But finding it is the difficult task when you are raising kids and you are in the midst of prime of your life. It is easy to get caught up in the whirlwind and not even realize it until you are dropped down into a mess of stress/life induced illnesses. I guess you could say a new year’s resolution, but it isn’t really that. It is more about admitting to defeat that we did this fall semester did not work for us. And us has to be a priority because life is what you make of it.

And we gotta make it better. We know that. As big of an advocate as I am for my husband it is so easy for me to let myself drown in the daily ongoings of TN and I just can’t do that. My girls need to see and have us function as normal as we possibly can. Therefore, I intend to do my best to make this life better.

I had forgotten…

I truly had forgotten just how therapeutic writing could be. After my last post, You moved on. We didn’t., I felt so much better. Actually I still do. The hardest part of this all for us is how easily people wipe themselves clean of you. As if we are some sort of burden because our problem doesn’t have a simple solution. I wish it did, but then again I actually don’t. The growth that has happened for my family during this has been amazing to be a witness to and be a part of.

xmas

 

Since my previous post I am not sure if it is his meds working more in harmony, the peace of knowing he is back under the care of Cohen and his colleagues or if I just feel that cathartic feeling you get when you get something off your chest. Whatever it is I seem to have found some sort of peace or I made peace. I have no doubt it is coupled with the many prayers we have received. We get so many texts, messages and just general concern that it makes me feel a little less alone. But in all honesty, he is doing well.

It is always easy to say that at 54 degrees outside and no stressors going on in life.  It won’t stay. Cold spells and stress are the worst. And we have plenty of them. Dr. Cohen has picked a neurologist to work with specifically on his case. We now have to wait. He has first access, but unfortunately that could take months. We are told it is because there are only a few who work with this and because he is sought after. He is constant contact as needed with both Cohen’s office and his neurologist here.

xmas1

 

Cohen did increase his dosages of neurotin so he is dealing with short term memory issues and fatigue at certain times of the day. He wanted to add in tegretol but he resisted because it requires weekly liver panel testing which he had to do from November 13 until March 14 of last year and does not want to do that. Of course, he will if needed. The nerve block seemed to cut down on the severity of the migraines and I have only noticed him complain about them about 4 times since he had that done. His biggest complaint now seems to be the transference to the right side of his face.

So yes I guess ranting in my blog helped. It always does. I just worry people get sick of always hearing it. But it is my reality. But my reality is also living in the moment. Today I got to go to lunch with my guy. A normal lunch where we held hands and talked about our future. It included TN, but there was good. There was a plan. That is my very definition of love winning because it always does.

xmas2My life isn’t perfect, but inside it there is a whole lot of perfection. 

 

My Guy: A TN Update

I am sorry for the intermittent absences. Sometimes my thoughts and words are too blah for this space. I don’t necessarily want to look back and read where my head has been. Two weeks ago my guy had a nerve block placed. The placement allowed for a diagnosis of the advancement of his neuralgia from his trigeminal nerve to the occipital nerve. It doesn’t necessarily spread like cancer cells. In fact, the spreading of the neuralgia is usually more like a transfer, except usually the term spread fits better because it remains where it was and moves onto other nerves.

If there is good news in any of this, it is that occipital neuralgia is more common and more commonly treated. The first line of defense was the nerve block being placed. An experience in and of itself. A shot placed in the base of his skull and directly into his scar tissue from his decompression surgery. A shot that rubs against the actual skull bone. His neurologist says, “Oh yea, I am warning you that you will hear weird sounds and they will be in stereo because it is so close to your ear (your occipital nerve runs from behind your ear over it and then branches out above and below your eye). This was no joke. The sound so horrible that my guy about passed out. He became increasingly nauseated and dizzy. Thankfully, it passed and we joked it needed added to his long list of things he never expected to happen in his life.

The treatment worked great days 1, 2 and 3. He had it on a Thursday and by Monday pain was actually worse. It also brought with it is some ear pain and set Lifeup triggers of the nerve pain on that whole left side of his face. A week later he is also now getting tingles and small nerve zaps on the other side of his face. This is actually again quite common in TN in patients that the TN will “spread” transfer and become bi-lateral. But really none of this is normal. But if it were to happen, this is what the textbook says will happen. Notice I use the term textbook.

He keeps telling his neuro doc that the TN feels like it is back on his usual side and they keep dismissing it as still nerves healing. But then it is followed by a laugh because the odds of getting TN 1/20000. The odds of getting occipital neuralgia and TN are so small it has never really been calculated. The odds of returning TN so soon after MVD minuscule (not sure I buy this thinking because I read enough online to know differently). His neuro who is great, goes on to explain that nothing about TN makes sense and nothing about my guy’s case has been textbook.

His meds have been steadied and he has been pulled off inefficient ones and stabilized the ones that were/are providing some sort of relief. The next step could be a couple of different things. He could decide to sever the nerve creating numbness. It may or may not work and he would be permanently numb on that side of his face. This is usually a last resort and you never know if it is will work because there isn’t enough research or money in research of TN to see the exact cause of it. He could get radiation on the nerve.The effectiveness again is up in the air. It causes temporary numbness I believe. We could opt to head to Dr. Cohen’s office again which means surgery. There are several lesser known alternative treatments with alternative meds and therapies. All of which work sometimes and sometimes not. I am leaning toward Dr. Cohen’s office seeing him and not necessarily surgery. There are several world-renowned doctors in this practice that I believe could explore non-surgical options. Dr. Cohen is a neurosurgeon. Our neuro here is amazing and works great with their office and our family physician. I just want the best.

The emotional toll of this is still trying to be calculated every day. I promised this summer that there are tough decisions for my family on the horizon and there are. It has hit us both hard and we both admitted had either of us at this time last year had any idea that this would be where we at we would have never believed it. But we are here. We try and keep life as normal as we can for our family. I did sit down with the girls this week. I think they knew it was coming, but I like to be upfront with them as much as we can. I explained that Daddy was struggling again. They didn’t really realize things were back on or that other diagnoses had happened. I shared the kid version of all of this and explained we don’t know what the future brings. But that the outcome was all of us together and hopefully Daddy in no pain. But again it may take us trying things to get there. Hopefully, nothing like last year. Hopefully, not a surgery again. But I just wanted to be honest that we didn’t know.

He still has triggers that cause him pain; Talking, yelling, stress, cold winds, a touch to the head or side of the face, physical assertion, barometric pressure, being extremely tired or too caffeinated. It is all a delicate balance. Thankfully, his neuro switched his meds around and he is taking relatively low doses of his anti-seizure meds so he is not zombiefied. They do make him tired, but they also cause insomnia so it requires perfect timing. He is only taking two daily meds for TN and that is still loads better than last year. He has options to add meds in if needed and increase dosages.

More than anything we are trying to lean on our faith that the good will prevail here. It has to. We need it. #lovealwayswins