As if Im not busy enough…I decided to run recently in our local Tribal elections. I know,I know…most of you are probably thinking is she nuts?!? I don’t know how many times I have been questioned by other woman on whether or not I have enough time to do it. For the most part, the support I received was actually surprising. Little did I know that being on the front page of our newspaper would have people I know well, not well, or not at all coming up to me days following the article.

To be honest, I didn’t think my decision to run for the Advisory Health Board was such a big deal. I soon found out, I was greatly mistaken…

I showed up to the open forum for the candidates completely nervous! Feelings of incompetency wrecking any confidence and worst, completely unsure of what I was walking into. Let me back up, right before the open forum I heard the rumor mill of some things that took place at the last Tribal Council meeting. Which left me wondering if I had what it took to fulfill the job being asked. I prayed profusely as I watched the microphone go from one candidate to the other…Im sure I was probably muttering prayers loud enough for the person sitting next me to hear…when the moment came I decided to stand up and speak. I said what was on my heart, spoke as clear as possibly, and quickly sat down with peace. If you were to ask me what I said, I barely recall, and can only say that the Holy Spirit guided my thoughts and mind. Which was affirmed when an elder stood up to thank the candidates and surprisingly singled me out and told the elders they needed to stand behind me, that I was the very change needing to happen…um, wow, Im sure my face showed my complete shock!

Well, last monday I was sworn in at the Tribal Council meeting…yes I won!!! With what I am told an overwhelming support from the KIC community, young and old. I was approached by faces I have not ever seen, greeted with a hand shake and then told by one elder, “so YOU are the one we all voted for”

As I stood there, right hand in the air, standing straight and tall, hoping that all the old and respected faces of the elders would take me seriously. They have watched Tribal Council & Health Advisory Board members come and go through the years, watched our people silenced when concrete needs were addressed regarding the substandard care at the clinic, and sadly had to personally experience the neglect in their health and physical needs. I all of sudden felt tears well up in my eyes, I was completely taken over by all the emotions I felt when we were plagued with the political side of attempting to receive adequate care for Ezzy, and the countless roadblocks throw at us from the administration, clinic staff, and council.

Dont get me wrong, I am not on a vendetta. I have seen what that can do…and am worried when those people get elected. I am here, in hopes that I will be the voice of those families and individuals who don’t know their rights or have been silenced.

When I spoke those words, “I solemnly swear to protect and advocate” I meant it with every fiber of my being. Especially the word “unbias”

After sitting through my very first meeting as an elected member last night, I still am wondering what this year has in store. I soon realized the issues I have seen are just a small part of the big picture. Im learning that I will need to start developing a thicker skin, but in a way that doesn’t leave me jaded. So when it comes to it, I will continually ask God to tell me how to serve, how to honor Him in this new role that He has given me, and trust that whatever Im suppose to learn from my stint on the Health Board, that ultimately its part of how God is shaping me

I will leave you with this excerpt from the book, “Roberts Rules of Order” which I have an inkling I need to start studying soon for the storm that is brewing

Life with 3 little ones is utterly exhausting, in a good way, but my goodness. From 8pm-5am it’s finally about us…okay I guess from 8pm-11pm, because us old fuddy duddies can’t keep our eyes open past then.

One of the main reasons we moved back to Ketchikan wasn’t because of it’s awesome weather, ha, 13 ft of rain a year, please, I think we broke that record last year! It was because of family, more importantly my mom.

When you enter the world of parenthood you have to make the choice to then accept that your life is no longer yours and that “sacrifice” will be the word that pops in your mind when you even dare to think of yourself. If you don’t accept it and try to fight it, you start to act like the child you are attempting to raise.

With that said, throw in cystic fibrosis, and you multiply that by 100, no joke. While most young parents our age schedule big Friday family nights with extended family or game nights with other families with small children, we on the other hand have the same Friday night date, just the 5 of us. No sitting at the table with friends or family and laughing or joking while the kids entertain themselves. No spur of the moment social life.

Don’t get me wrong, I LOVE, LOVE, L.O.V.E. my family, but if I had to be honest it gets lonely and sometimes reconnecting with Richard is such a challenge. Especially when our talking tends to be centered around the kids and one way or another CF.

So when my mom texted us last Friday to ask for the kids, I said YES!!! I found myself almost giddy, thinking about dinner with JUST Richard, hot food, that didn’t have to be cut up in tiny pieces, flown on a spoon, or better yet thrown on your new shirt! I started to plan my hair, what clothes I would wear, you know, the good clothes you only wear when said children wont be around you and began to salivate over food that wouldn’t be prepared by my worn out brain and hands.

We decided to break away from our usual date location, sorry good old Oceanview, and we made our way to the very place we sat 12.5 yrs ago on our 1st date. Good Fortune!

Hello table #13, hello my best friend, the man who made me run home that night to my mom all flustered and in awe that my heart could have those feelings after one night.

Yes the person sitting across from me no longer wears a 29 inch waist pant, thanks to my skills in the kitchen! Or better yet has more grey hair then my dad, keep it up babe! You will forever make me look young! But I like it! I like seeing how much we have grown up together.

3 hours later, few stolen kisses, okay maybe more then a few, bellies & hearts full we found ourselves driving back to our babies, back to the craziness awaiting us, back to the life God knows we can handle and will make sure we can escape and remember how it all started and see we are truly blessed.

We live such an isolated life here in Ketchikan, in many ways, but the one that I feel the most has to do with CF, so any connections, any conversations, or looking to other people who have a personal experience is through the internet.

I first heard about a blogger with CF through FB. I came across a post she had made about turning down a set of lungs. She had made the tough call due to the potential risk of taking them based on the donors past life. Shortly after she wrote a quick blog about the peace she had, that even though she was in desperate need of lungs she knew in her heart the right ones would come. If you have ever seen the process of getting “the call” for a much needed transplant…I honestly would be shocked you haven’t in our world of documentaries and reality TV, you would know how incredibly nerve rattling they are. She had to go through 2 “dry runs” as she called them, 2 phone calls, 2 frantic rushes to the hospital, 2 pre-op admittance and tests, all to find out that the lungs she was literally holding her breath for weren’t THE ones for her. I remember one post she had made, she was discouraged, questioning IF it was ever going to happen, IF she would ever get her 2nd chance.

I remember the day she made the post that she finally got THE CALL, finally got the go ahead and moved forward with the double lung transplant. To say the road of recovery was difficult is an understatement to say the least…seriously don’t take my word for it, check it out on her site: kellystransplant.wordpress.com

Today I read the heartbreaking news she lost her life. Tears began to well up in my eyes, I fought feelings of deep sadness for a person I never met, had a conversation with over coffee or personally got to see the mighty advocate for CF she had been. She had been having struggles with her new lungs, but ultimately passed away due to a stroke…crazy right. Her whole life, the last 38 yrs she was told more times they she could ever count that CF would take her life. Yes, because of the CF she needed this surgery, because of the surgery she suffered a stroke, so I guess you could say CF won. But I don’t believe Kelly or the many people, lets be honest, she had over 2000 people following her on FB, thought this was how it was going to go.

All day today I have been reminded of James 4:14 “Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.” We aren’t promised tomorrow, we aren’t promised a minute from now.

I get so wrapped up in the future the doctors want us to accept for Ezzy, wrapped up in the two letters my 4 yr old knew before any other letters when learning his alphabet at school. My stomach turns to nots when I hear about another life lost to a disease that has made parents stand over graves and say goodbye to the children they had so many hopes for. My deepest fear, which sometimes makes me hold Ezzy at arms length, horrible, absolutely horrible to say. I can’t fathom the void she would leave…so I find myself building walls up.

This is when I need to hold on to the fact we aren’t promised tomorrow. I need to accept that when God decides to take Ezzy home its never going to be a time that I expected. I realized today that I am getting hung up on something that shouldnt have a hold on me.

I guess this is why I go through waves of reaching out and being connected to the CF community. Many times its because I don’t want to hear the struggles, the countless hours of therapies, hospitalizations for little kids, kids that are separated from their families because they can’t breath at home.

I want to sometimes live in this deluded safe little bubble we have put our family in and block out all the darkness that surrounds those two letters.

But today, today I am all to aware that that is not healthy. That if I want to raise a courageous, hopeful, and unashamed advocate, then I need to start processing the things that are already stacked up and waiting at her door. I need to rely on the fact that God chose us to be her family, HE chose us to not raise her in fear, but instead chose us because He knew she would need us, but more importantly that we need her.

So today, I am choosing God to be my filter in the scary world of CF, I am asking Him to show Himself to me, to quiet the aching heart of a mother who is terrified to lose the little girl who shows me daily how wide, how deep, and how great His love is for me.

I have to first admit that my love of crafting most definitely comes from my mom. The woman who was a preschool teacher for many years before my sisters and I came along, taught Sunday school all through my years growing up and also taught elementary in my later childhood years. I loved to craft and picked up hobbies like crocheting, free hand sketching, or scrapbooking in my teens and college years.

My friends had to smile and act surprised when I crotched them scarfs one year…or worse all the 19 family members that had to graciously accept my CHRISTmas present of hand-made pjs (thanks to a hormonal pregnant decision one day to learn how to sew just for presents).

Since Cayden entered my life, there were many things that I had to let go of, one of them being crafts. It wasn’t something I missed, or better yet, had the time to miss. But when the holidays would start to approach over the years I would get a little sad that I didn’t have the time. We could barely get Christmas cookies made and decorated. Especially since Richard and I apparently don’t know how to contain ourselves and ended up with both girls having their birthdays amid thanksgiving and christmas. Now that they are getting older I have found some time and new found interest thanks to Pinterest…hey that rhymed!

Pinterest has changed my life! Not just in the cooking department…whole other blog, but also in the crafting department!

Our first craft was salt dough ornaments…I have memories of making these as children in school or at home with my mom. It was so easy and fun to do. We had our dear friends the newsoms over and had sweet baby Jonah join in the fun!

My plan had been to do the same for the big kids but use their hands instead. I soon realized that their hands were going to make the oranments too big and heavy. Thankfully, Kelsey, who introduced me to Pinterest…thanks Kels…I have lost so many hours of my life to that site 🙂 She told me she had seen some adorable hand print santa ornaments on her pinterest. Thankfully I’m not intimated by a little need to paint 🙂

One tradition we started last year, again thanks to pinterest, was to make a canvas painting. Last year we did handprint Christmas trees, this year I found an adorable reindeer footprint one. It was NOT easy getting 3 little ones to keep their foot still enough to get a identifiable footprint…I almost walked away in frustration. Yes, I know, horrible, but sometimes the perfectionist in me is so hard to contain…thankful Richard told me to get over myself and love the imperfection kids bring. Just what I needed to hear:) When I was finished with painting the antlers and putting the year at the bottom, the top of the print needed something. Thankfully I saw a super cute idea on pinterest to make Christmas lights with thumbprints, so I added those to the top!

My last Christmas project was making Christmas shirts for my kiddos and Jonah James. I had seen an idea on Pinterest to use ribbon and just lay them flat in the shape of a tree and sew on. Richard told me he thought I should ruche(sp) them…thanks babe…I can barely sew in a straight line! So there I was spending over a hour trying to figure out how IN THE WORLD to make the ribbon ruche. Frustration and tears were taking over so I put the shirts away and decided to wait till the 3 yr old tantrum in me would be gone. The next morning I awoke with an idea and it worked!!! Yay, I had to hand stitch them by hand due to not having anywhere to set up a sewing machine that wouldn’t be inspected by 3 inquiring little minds.

I have to admit it was alot of fun, and yes work, to make these shirts. But I had so much fun, knowing all to well, I was accomplishing a right of passage that many moms accomplish. I gave up nap time and stayed up late, and poked my fingers a few too many times, I now understand why the thimble was created! I would smile and have visions of the 4 little people who I love dearly wearing these shirts, smiling and thinking they were “cool”.

More importantly as my sweet precious babies + jonah james, our honorary harney wore these to church yesterday a few days after the horrendous tragedy that happened in CT, I realized that I need to be more willing to give up “my time” to do things for the people I love. To make sure that they know how much I love and need them in my life. Today Im thankful for the safety we have here in our small community, thankful to have my son in school that hasn’t pushed God out, and thankful to hug and kiss my children daily. Best of all that God entrusted them to me and lets me wake up each day to their smiling faces!

Merry CHRISTmas!!

So richard and I were presented with an amazing opportunity to participate in a local competition in oct…I know…I am just now getting a chance to write this.

We had no idea what we were signing ourselves up for, but the thought we could spread awareness about CF and possibly walk away with some $$$ for the CF foundation was just what we needed to brave it.

It was CRAZY intense. My sister kindly watched the nursing baby and two munchkins last minute after my mom came down with the crud suddenly. We walked through those doors, hearts pounding, hands sweating, and muttering continually, “its all for ezzy, its all for ezzy”.

After our dishes were served, which I have to say the pistachio salsa we made for our stuffed pork tenderloin was the winning element along with Harney & Sons Tea (served in ezzy’s enzyme bottles)which really brought our cause home. When the winners were announced it took every single bit of strength to hold back the tears that were forming. Its all still a blur, but the overwhelming support, love and genuine interest was/is a reminder of why we live here in this small community. Countless hugs, hand shakes, even tears from complete strangers kept us there well after the competition ended. We came home after 4 hours of being away in complete awe. We held our stubbornness, hot headed tempers that come out under stress and worked effortlessly as a team. When he moved to the left, I moved to the right, when he was chopping, I was stirring. Little words came out of our mouths, we literally became one body.

The hardest part was to have to wait 2 weeks till the finale.

When we yet again received our list of required ingrediants to use in the upcoming event, the stress started to build UP. It seemed like we had used up all our ideas and I was at a complete loss. It was so much harder to try and prep this time around.

One thing I knew for certain was that I was suppose to share a song that carried our family through the dark first few months of ezzy’s diagnosis. When I felt the idea tugging at my heart and obnoxiously consuming my thoughts, I sat down and listened to the song over and over again until I could hear the notes well enough to figure it out on my guitar. For the life of me I couldn’t find the chords ANYWHERE.

The competition started with Richard and I realizing all to soon we were in over our heads. Our fellow competitors did not appear to be the amateur cooks that we were. We had hiccups along the way and unfortunately didn’t serve food that I felt we could stand behind. But before we served the food we used Richard’s awesome idea to find candy that looked like all of the pills ezzy takes before meals and we served those to each judge and asked everyone to take them in honor of ezzy. I then grabbed my guitar and went into autopilot mode. I blocked everyone out, I know bad right, but its how I survive each sunday leading worship. I mentally can’t acknowledge the people or I FREAK OUT. Before I knew it I was done singing the song, tears running down my face and knew that no matter what, we did what every parent of a CFer should do, we advocated and educated people on CF.

When the winner was announced, yeah, sure I was a little disappointed. I wanted so badly to hand over a big check to the CF foundation, I wanted to one day say that when the cure is found, that we did everything we could to help. Just when the show was about to end, the winners grabbed the microphone and announced they were not going to walk away with all the proceeds but instead split it evenly with all the competitors!!! To top it off the very person who made this announcement then approached me afterwards and told me that he was going to have us on his radio show and that there was no way of getting out of singing the song I shared.

I just had the opportunity today to send off the big fat check along with a few pictures of the competition to the CF foundation. I sat there writing out a little note with ezzy sitting next to me, laughing and pointing at the pictures of her mom and dad wearing what she calls our “ezzy shirts”. I held her close and told her that one day…one day she is going to breath just like you and me.

Since july 27th we have been waiting, watching, and praying for Ezzy.  Her lingering cough finally had an experiation date and our pulmonary doc at Seattle Children’s said it was time.  From that date until August 30th Ezzy entered one of her toughest battles since her diagnosis. She was on antibiotics during that WHOLE time and worst of all was put on steriods…STERIODS, the 8 letter bad word now in our family.  We were literally waking on egg shells around her, just to survice from day to day.  They made her moody, unpredictable, and in an almost constant state of tantrums…sounds like a typical 2 year old right?  Well just like steriods make a body builder bulk up…the steriods made her tantrums bulk up.  The downside of antibiotics also has challenging side effects as well: decreased appetite, stomach ache, naseous, dizzy, headache, dirrhea…these were just the ones I noticed or was able to get out of my 2 year old’s limited vocab.

So last week I turned a horrible number that I can barely stand to say, and hate to even type…I don’t know why this birthday is the hardest for me to swallow.  I feel like there is so much I have accomplished in these years and yet still havent…30s are scary to me, for many reasons…one of them being that it is the age when most CFers are in their latter years…Oh, Ezzy I pray that you will not be one of them.

so I have been wanting to do a blog for quite sometime and after trying to do so one day during nap time…sweat running down my face, only seeing the color red and tears about to explode…i decided to give up…then I told richard what I wanted to do and he told me to wait just a few weeks after he was done with his thesis and he would help me :)…and well here I am with a website (thanks to my tech savy hubby) and not an actual blog!

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