All posts by psalm139momma

I am married to my high school sweetheart. We have 5 beautiful little children. Our 2nd born child has Cystic Fibrosis, a fatal lung and digestive disease, it has shaped our days and how we live day to day life. We live in southeast Alaska. Our days are filled with all the chaos that comes with raising a family that is bigger then societal norms. We love to hunt, fish and have embraced the urban homestead lifestyle, thanks to farmer Harney, aka daddy. If there is anything you learn from this blog, I hope it is the fact we love God, each other, and are trying to be the light in a world filled with darkness! Happy reading my friends!

TOP CHEF

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”.

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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.

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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.

Defying the Odds

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.

 
We thought that she had finally beaten this nasty bug, saw a light at the end of tunnel.  I was SO excited to see her run and play with her brother and not get winded or hear her wheeze.  We entered this 3 day holiday weekend with plans of coming out of seclusion, something we do EVERY time she is sick.
 
We woke up to the children letting us sleep in till 8!!! I then shortly heard Ezzy whimpering.  I went and picked her up and she proceded to whine and lay limply in my arms.  I thought she had just woken on the wrong side and started to pick up the house while Richard slaved away on breakfast.  The next thing I realized was her curled up under the table sleeping.  When I woke her she said her tummy and back hurt…she shortly after climbed into her bed and started to sleep heavily. She didnt even stir when I was listening to her breathing with the stethascope.  I tried to get her to drink some water and she wouldn’t.
 
A call to the oncall pulmonary doc at Seattle Children’s sent richard and I into auto pilot mode.  A trip to the ER was on our itenerary…the doc told us she was concerned Ezzy was fighting a super bug and would most likely wake with a fever.  We were told she mostly likely need IV fluids and to been seen ASAP.  Heart pounding, mind racing, tears whelling up in my eyes, I found myself crying out to God.  I knew I couldn’t make a decision or move unless HE was there telling me what to do.  I also knew that we needed help, thank goodness for faithful friends who believe in the power of prayer.  After texts were sent out and offers to watch the other kids or responses they sent the prayer request to their resources in other cities, states, and nations we were ready to go.
 
I went to Ezzy to wake her and touched her back. She immediately sat up, almost flew out of bed.  I asked her if she was thirsty.  Richard went and got her water and she downed the cup.  Then asked for something to eat.  She scarfed down the food and then all of a sudden was talking to her brother and then turned to me and said excitedly, “mommy, no more back hurt!”.  I turned to richard and we both gave each other the look that meant “hold it together, don’t cry.
 
The child that was limp in my arms and almost non responsive shortly before going to bed is now running around the house,  playing with her pony, kissing her baby sister for the 100th time today and picking on her brother.  The scary, sick, CF child we saw this morning that we believed was the start of our eminate future in the life of CF was just a flash.
 
John 14:27 “peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let if be afraid”
 
All i know is that when we went into auto pilot mode, when we called out to our maker, the mighty HEALER, and when we asked for prayer, handed over our fears were were left with a PEACE that only HE can give and best of all child who is meant to defy the odds

28 and counting

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.

 
I have made mistakes and learned from them, gained and lost friends, grew closer in my walk with God, and daily learn the meaning of uncondtional love and grace that God gives me through the gentle reminder of trying to be a proverbs 31 wife and mother, in this broken world that tells me I can’t ever be.

 
I woke to sleeping in until 9am!!! How on earth was I able to do that after being conditioned to wake up at 6:30 EVERY morning since I have joyfully accepted the title of mom.  Blinds were pulled, pillow over my face, and a loud fan was going to block out the construction noises coming from my little family.  I was greeted with bfast in bed and then had to deal with my first dilemma: whether or not to join the family or to stay and eat BY MYSELF…after a few swigs of coffee and a facebook post I decided to brave the kitchen.  I was serenaded by my family and gladly ate the rest of my cold bfast and soaked in the greatest part of getting older.
 
I had personally set a goal for my bday…since Richard took the day off I decided to try and beat my personal best time on a 5K run through the neighborhood, in hopes of telling “28” to go and eat its self.  I waited until I knew I wouldnt up chuck all the delicious crepes richard made me and got ready to go.  Right when I put my shoes on I had a little shadow behind me with big puppy dog eyes…”mommy can I go running with you?”… “honey, mommy is going to go and run a 5k” (he knows the running lingo since his parents have decided to run every family fun run this town has offered this year) “but mommy, can I just run a 1K then…please…just a 1k and then you can run the rest?1?”
 
How could I say no…so there we were trolling at a pace I would have been embarrassed to run infront of others.  I looked down to see how his little legs and lungs were handling it and he looked up at me with a huge smile and said “mommy, I love you…happy birfday!!”
 
You know what, I may not have beat my personal best time at a 5k that morning but I was still able to say “eat it 28!”  If I get to be blessed with my family EVERY year I get older then bring on the candles

Liver Enzymes

Liver Enzymes…the 2 words that have haunted my thoughts for the last 2 weeks.  Our little miracle, Ezzy May, has been battling her diagnosis of Cystic Fibrosis (CF) like a champ these last 2.5 yrs. Her strength amazes me, her ability to grasp the severity of her treatments and actually ask for them when she is sick has been a reminder that God knew she could handle this.  The fire in her can be my biggest battle during the day and its on those days that God reminds me He had to create it in her.

 
Her most recent CF appointment was when we found out that her liver enzymes have been elevated the last two times she has had labs done.  It was then that our CF doc told us they were going to start closely watching them and if it continues it would be indicator that she might have CF related liver disease…
 
I wanted to crumble when I received this news.  I try so hard to stay shieled from the grim side of CF in our overwhelming viral world. I hate to hear about 12 or 15 year old losing the batttle in CF and passing on or hearing about the countless CFers living in hospitals awaiting  a lung transplant.
 
Me being the person I am though, immediately researched CF related liver disease and found that it could explain some of  her symptoms I have been seeing in the last few months.  The info I wish I wouldn’t have read was that it is the 3rd leading cause of death in the CF community…
 
So now those 2 words are in my mind daily and I can feel the fear and the many “whys” combined with the “what ifs” being my challenger in the game “follow the leader” because I can’t seem to escape them
 
Now I am having to chew on the very words I have shared with countless friends in their struggles, our church body on sunday mornings and most of all my maker.  I know I serve a big God, I know Ezzy’s story is only in her 1st few chapters, and I know that God has so much to teach me about TRUST.  But most of all I know that HE is GOD and HE loves my beautiful little girl whos days can numbered by our Docs, but in reality are truly only numbered by the one who nit her together in my womb and I am going to praise HIM because I know she is “fearfully and wonderfully made”
 
will you join me in prayer for her, especially since she is battling a narly cough right now?

My Hubby

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!

 
he just turned in the very paper that has made me an MPA widow and I am so glad he is done! he did all the work and I can take no credit….how can I not be proud of him and is knowledge in the very thing that makes me feel stupid almost daily!
 
My hope is that I will be able to share with you what is going on with our family, how we are facing all the things we have put on our plates and the things that have decided to come unwelcomed…but also to share with you how we are handling Ezzy’s diagnosis with Cystic fibrosis (CF).  We know we have a big God, one who has entrusted us to care for her but also one who when we ask to “search me, God, and know my heart: test me and know my anxious thoughts” HE is always there for us.
 
I hope that this will provide a way for you to know how the Harney family is doing, and most of all know that we aren’t perfect and we are accepting the things we have been given and when we feel like we are finally tackling the challenges we face daily, we know its only because of GOD!