IN MY PLACE

I have been thinking for months about what to write next on this blog. I have enjoyed getting back into writing but really what more can I say about death, sorrow, pain, life, and moving forward? Does anyone really care what I have to say because I don't have any of it figured out? But I started this blog with a purpose and that was to find a place I could be completely honest and a place where my children and others could learn about my life's experiences dealing with death and how you can live thorough it. So here it goes....

There are still so many nights I sit and think about Alex, about how sad I am without him. I think about how much it hurts to look at my three kids and always see an empty space just waiting to be filled. I look at other families that have four kids and I get jealous, mad, sad, lonely, helpless, and confused. Why do they get to keep all of their children? Why do I continuously have to taste this bitter cup? Why did God choose me to battle such an impossible task? Why did I have to say good-bye to such a big part of my heart?

Every time i face a difficult time in life, Alex's death just sits front and center of all that pain. As we have gone through this last year cliff and I have certainly battled many challenges: job changes, travel, health, loneliness, and just life in general.

I wish I could sit here and type the words BUT THROUGH IT ALL GOD WAS WITH ME, but I can't. I don't know if he was.  I am not saying he is not there, but as I have tried to pray and fill my emptiness, my grief, my anger, insecurities, I almost felt more lost.  It was as if the world and my problems got a whole lot bigger.  How can I expect God, creator of all, to snap his fingers and fix me? My reasoning was, he has already asked too much of me so he owes me this.  He owes me! He owes me for giving up Alex, he owes me for not asking everyone to suffer like I have.  I was so mad at him for leaving me here alone, and just watching me slowly suffer silently each day. He must have known how painful it would be for me to continue life without Alex. He knew what it would do to me, and yet he didn't care enough to stop it! Why does he stop for others and not me? I would give anything to have the answers to these timeless questions.  Pain has a way of distorting truth or what we believe to be true. I will forever wonder why my life has been tainted with death. I will forever wonder if I did something to deserve this when millions of mothers never have to face such a loss.  But the truth is none of us truly know why these things happen. Why some face mountains of trials while others don't. The only one who holds these precious answers is waiting for the right moment to reveal them to us. But it's hard to except that we might have to live our entire life never knowing the why's, but at least he has given us the key to the how's.  

As Alex's 10th birthday is approaching I have been wondering if I should go visit his grave. I love that place so much and yet i always get nervous going because I don't know how I am going to react seeing the only physical reminder that he is truly gone from this life. My sister and I have been dying to do a sisters trip. We did one a few years back and had the best time and have yearned to recreate that moment again. We have discussed many options, but then the idea of going to see Alex came up and for my sister it was not even a question. I mean really who wants to visit a grave for a sisters trip, and yet my sister, who has been my rock, the one person who sends me flowers every year for his angel day, the sister who turned right around from her flight after just visiting us when we found out Alex was brain dead, my sister who has a big picture of Alex hanging in her home, never even hesitated and was looking into flights. She has been my best friend has been Gods (how) way of showing me I am not alone. She can't take away the bad things of life, and neither can God, but he can guide us through them. He has systems set in place to help people like me. I have met some pretty amazing people in my life. 

It will always be a process for me to accept the trials I have had to bear.  But through these things I am learning, I hope that I can continuously refine myself. I need to refine my relationship with God, my family, my outlook on life, and my grief.  I don't have any of this stuff figured out and just when I think I might have it, I lose it and have to start all over because this life isn't about "figuring it out" it's about so much more. It's about growing our faith in the things we can't see, it's about building relationships with our family and friends, serving those around us, raising our children in goodness and love, teaching ourselves to be better, to enjoy life to its absolute fullness and to accept the fact that we can do hard things. 

My neighbors whom I adore and feel so blessed to have part of my life, invited me to their church last week and the band sang a Cold Play song, one of my favorites. But it just spoke to me while listening to it. I wish I could have co wrote it with Chris Martin (lead singer) because it 
just adequelty described me at that moment. "In My Place" is a song written for those who have ever felt lost, overwhelmed, confused, alone. I would say most people have at one time or another felt one of these emotions. We all have our place (experiences), and I am sure we have all felt lost in those places. I have. It's so easy to feel lost but how easy is it to feel found? That has been my journey thus far, is to feel that I matter, to feel that my trials aren't a form of punishment but a tool for me to find my way so that I can truly find "My Place" in this life and the next. I hope that all of you, some of you, or even just one of you want to come with me and we can find our places together because at the end of it that's what God intended for us to do. 

https://m.youtube.com/watch?v=gnIZ7RMuLpU

In my place, in my place

Were lines that I couldn't change

I was lost,

I was lost, I was lost

Crossed lines I shouldn't have crossed

I was lost,

how long must you wait for it?

 how long must you pay for it?

 how long must you wait for it, oh, for it?

I was scared, I was scared

Tired and under-prepared

But I'll wait for it

If you go, if you go

Leave me down here on my own

Then I'll wait for you, yeah.

how long must you wait for it?

 how long must you pay for it?

how long must you wait for it?

Singing

Please, please, please

Come back and sing to me

To me, to me

Come on and sing it out, now, now

Come on and sing it out to me, me

Come back and sing it

In my place, in my place

Were lines that I couldn't change

And I was lost

Ordinary Miracle

It's not that unusual

When everything is beautiful

It's just another

Ordinary miracle today

The sky knows when it's time to snow

Don't need to teach a seed to grow

It's just another

Ordinary miracle today

Life is like a gift, they say

Wrapped up for you everyday

Open up, and find a way

To give some of your own

Isn't it remarkable?

Like everytime a raindrop falls

It's just another

Ordinary miracle today

The birds in winter have their fling

And always make it home by spring

It's just another

Ordinary miracle today

When you wake up everyday

Please don't throw your dreams away

Hold them close to your heart

'Cause we are all a part

Do you want to see a miracle

It seems so exceptional

That things work out after all

It's just another

Ordinary miracle today

The sun comes out and shines so bright

And disappears again at night

It's just another

Ordinary miracle today

Who doesn't love a little Sarah McLachlan? I used to listen to her for hours when I was in high school.  But for some reason over the years I just lost touch with her music until recently.  I came across this song tonight, this was one of my favorites.  Mostly because of the simplicity of the tone, music and words.  As I was concentrating on the lyrics I was pondering on my own "ordinary miracles" of my life.  I don't believe I have ever thought of my life as seeing any kind of miracles.  I tend to focus on those things which I have lost, never had, or will never have.  I can't say that's really a fun way to live.  But it's been extremely difficult for me to retrain myself to not self reflect in that way.  However when we find the strength to look outside of our self, our pain, and our affliction it can be a very enlightening experience.

Alex's life and death has caused me to really evaluate the purpose of life, or more specifically my life.  I will never find the answers to my burning questions of why I had to endure the death of my first born child, why wasn't he meant to stay, why do other children with this disease manage to survive? Why wasn't the miracle of healing granted to him when it's granted to so many others? Our lives are full of unanswered questions.  Sometimes those unanswered questions can be debilitating, frustrating, angering, and often times cause us to feel even more lonely.  

Each of us has our own unique life.  No same two people have the exact same experiences.  In that sense it can make for a lonely existence but if we can truly dig deep within ourselves to find those "ordinary miracles" it helps us to realize our path and life is not lived alone.  The simple miracles of my life are, I have 3 living, beautiful children, a marriage that has been able to survive some unbearable burdens, a chance to know my son: to be there for his first as well as his last breathe. I have an amazing sister who has been my biggest fan and supporter. I possess the knowledge that I am not alone in this life. My list can go on and on.  

The more that I can accept that my life is just ordinary I can try and lift myself out of my unordinary circumstances.  All the troubles, pain, and heartache need to be replaced with gratitude, hope, faith and unfailing love.  I guess the one thing each of us has in common are our possession of "ordinary miracles" and once we can recognize them then we are instantly given the power to carry out our dreams, to live the life that was meant for each of us. Mistakes of course will be made, but we can take comfort in knowing "that things worked out after all." Life is an experience, we get one shot at it, and therefore I am slowly learning to cherish it rather than curse it.  Life truly is a gift "wrapped up for us everyday" and I have finally figured out that the only way I can enjoy my gift is to give myself back to my life.  Please go and find your own "ordinary miracles" and enrich your life and the lives of those around you.

Ordinary Miracle (click link for song)

Have a little faith

A few months ago, I had what some might say "a nervous breakdown." I am not proud of it but I am not above admitting to it either.  Cliff and I decided to move to Denver for a job opportunity we thought was advantageous. The job he had been working in Texas was fine, but we wanted to try and get more west and we always thought it would be awesome to live in Colorado. As Cliff was transitioning out of Texas we had planned for him to work both jobs for a few months. What we thought was only going to be a 1-2 month commute turned out to be more like 7. And to make matters worse the job he had here pretty much reared that it was not a good fit for Cliff, so he was spending weeks in Texas while the family and I lived in CO for really no reason (he quit is CO job). Living in Colorado was great, but living without a husband and uncertain future not so much.  When December hit, I believe my threshold of enduring trials came to an ugly head.  I was dealing with some awful headaches, Dayley being sick a lot (and I freak out over sick babies)a tooth that had gone bad, kids needing more then just a mom out of her element could give and Alex's 9th birthday. And the list could go on and on.

I have never been one to get headaches but the pain just got worse and worse. I kept believing I had a brain tumor or something because sadly I think in worse case scenario at everything. I was so upset because I kept begging and praying and having blessings to help me overcome the headaches.  I was begging for mercy because I had been through so much surely God didn't want me to suffer more. But to no avail the headaches and pressure and pounding increased by the day.  I was convinced I had a serious condition.  But with Cliff gone and me being alone in CO I truly felt like I had nowhere to turn and didn't know what to do.

That was until one night I literally did not sleep because I was so worried something was wrong, I could barely function.  I was up all night crying because I felt I was being punished, because maybe losing Alex wasn't enough suffering, I had to endure more, but why? I am ashamed to admit my little Lexi woke up from hearing me cry and then I just unloaded on my sweet little 6 year old.  I was so scared that I turned to my little girl for comfort.  What in the world was going on? How did I get to this point?

As I sat on the floor embracing my gift from Heaven a few thoughts came into my mind; ask for help, and have "faith in me." As soon as those thoughts came to me a quiet peace filled my mind for a moment.  I reached for my phone and called my neighbors for help, at 6am! Never ever would I do that in my right mind but I felt desperate and minutes before that call I felt alone.  But I wasn't really, you see.  All those weeks and months I felt alone, and forgotten, cursed, and scared, I had the power all along to wipe all those feelings away, but I lacked "faith in him." My dear friends came to my rescue plus countless more friends. I went to the hospital and a dear friend took me to get an MRI and another took my kids for the night and food was brought in and visits were made, voicemails were left.  How could hours before my life seemed so dark and now it was brighter then ever?

My MRI came back normal and I was diagnosed with severe tension headaches. Hmm I guess that's a no brainer looking back. But in times of loneliness and despair our fears take over, we forget all the light that our Savior brings into our lives, despite very hard and difficult challenges.

Up until recently I have allowed Alex's death to symbolize despair, unworthiness, emptiness, punishment, but most of all feeling overwhelmingly unloved.  I was asked to endure pain so deep and cutting that a few times I believed that the goodness life had to offer was not for me to taste, touch or feel.  I looked around at all the joy everyone else had and only saw my suffering.

But after finding out that I was in fact going to live, I reflected on the first of three prominent dreams I have ever had and have never had again. A few weeks before Alex was born I dreamed I was in a church, not the one we were currently attending but another one I didn't recognize and I was there in black and sad, my hair tied back. There was a little white casket in front of me but it was closed.  My Bishop was there along with family and friends.  I never saw the child's face but only that I knew it was My child.  I told my sister of my disturbing dream and she told me it was normal to have scary dreams like that before a baby was born and she in fact had one about her daughter before her birth.  It wasn't of a funeral but of one where she had to choose between the life of her son or the life of her daughter.  By her recounting her own dream she was able to calm my anxious fears, convincing me it was "normal paranoia."

Once Alex was born we were relieved his heart and lungs were strong, he was born alive and had all working limbs. He was jaundice, but no matter lots of kids are when they are first born right? After about 3 weeks I had this pressing feeling something was wrong but could not figure it out.  His poop looked weird but heck what did I know.  I just knew something was off.  I can only describe that it was like having a dark cloud hanging over my entire existence for about 6 weeks.  I kept calling the doctors and nurses but it was blamed on either my diet, or a virus or acid reflux.  It took me 6 weeks to finally get my answers, can't say a liver disease ever popped into my mind as the source however.

When Alex had died and we were making funeral arrangements it took all of 2 minutes because I had already planned it in my mind since the night of my dream.  I hadn't thought about the details of my dream since the night it occurred but when we walked into the chapel for his funeral my memories came flooding back.  We were at the church that was in my dreams.  Our ward had moved buildings a month before his death, but I hadn't thought much of it because we had hardly been to church since they switched.  The casket we chose for Alex had this beautiful sparkly white bodice laced with blue trim all around it. It was either that one or a wooden box so our choice was pretty much made for us. And now here I stood in the middle of my dream that I had dismissed as paranoia instead of a premonition. I was sitting in the very spot I saw, my hair was down, but the pearly white casket was ever so still, resting right in front of me. My friends and family encompassed me, our same Bishop presided over the funeral. And now my thoughts focused on the simple truth that this whole time God had planned for that moment.  He knew from the beginning this was how it was supposed to play out.  I can't deny it.  My dream truly reflected my future.  As much as I wish my trail with Alex was of a happier nature, I know that one day it will be.  I know that my Heavenly Father gave me all those signs leading up to his death, so that at this moment right now I could write and reflect upon it and testify that each and everyone of us has a plan and a path to follow.  Some are grander then others, some are happier, brighter and less challenging.  But no matter what, we are looked upon and judged upon with the same eyes and hands.  All he has asked us to do is "have a little faith in me"

Have a Little Faith by John Hiatt

(I know this was written as a love song but I believe some of the lyrics really do apply to our Savior and Heavenly Father, I did take "baby and darlin" out;)

When the road gets dark
And you can no longer see
Just let my love throw a spark
An' have a little faith in me

An' when the tears you cry
Are all you can believe
Just give these loving arms a try
An' have a little faith in me

Have a little faith in me
Have a little faith in me
Have a little faith in me
Have a little faith in me

An' when your back's against the wall
Just turn around an' a you will see

I'll be there, I'll be there to catch your fall

So have a little faith in me

Cause I've been loving you for such a long time
Expecting nothing in return
Just for you to have a little faith in me
You see time, time is our friend
'Cause for us there is no end
All you gotta do is have a little faith in me 

I will hold you up!
I'm gonna hold you up!

So have a little faith in me 

All I want you to do for me tonight
All you gotta do is justa have a little faith in me 

All you gotta do is justa have a little faith in me 

Have a little faith in me 
Have a little faith in me 
Have a little faith in me 

HAVE A LITTLE FAITH IN ME (click to hear my new favorite version of this song)

I Promise You

The moments following Alex's descent back to Heaven are embedded in my mind forever. I remember screaming in disbelief of what I just witnessed. I remember Cliff rocking and holding Alex for about an hour after, he didn't want to let go.  I could barely muster a glance at his lifeless body.  I remember our long quiet walk back to our empty car and car seat and the incredibly long, silent drive home.  I remember the complete and utter feeling of loneliness.  We have all experienced loneliness at one time or another but this was beyond the typical everyday loneliness.  I actually felt physical pain.  My heart shattered and I could barely see through my thousands of tears that covered my entire body.  That kind of pain, emptiness and loneliness is something that I never ever want to experience again and I hope and pray no one else has to either. 

We had so much outpouring of love and support it was truly humbling.  I have kept every single card that was sent, every piece of momento that was given.  In that box lies the poem "Footprints in the Sand." I had read that poem before as a young girl, so I knew what it was, but I reread it again and honestly it kind of made me mad because I was thinking "how can anyone understand what this feels like, it's so easy to say that I am not alone, but at that moment I was or at least it felt like it." Grief masks and covers everything in our daily life.  It leaves you feeling hopeless, lonely, aching, wandering, grasping.  So once my body finally gave into my weariness I believe The Lord new the only way he could try to break through my grief was while I was sleeping.  I don't remember exactly the time frame, but it was within a month after Alex died and I had a dream of twins. In the dream I couldn't see the genders but I felt so much peace and love and happiness.  I remember Alex being in the background but I could never see him or his face but I knew he was there.  When I woke up, I told Cliff I had a dream of twins and he said "that is so funny because a few days ago I had a dream of twins, but didn't think to say anything." So we both just paused for a second and then just said, "huh." As the moment passed the grief came back and my new empty life had started again.  I went from full time mom, nurse, doctor, etc to nothing. I just sat at home lost and lonely, day after day.  But that dream would come to my mind every now and then.

We moved to San Antonio Texas in June of that year (4 months after Alex died) for Cliff to attend dental  school.  Just when I didn't think I could feel more lost and empty we moved to a place we did not know a single soul.  Talk about the nail in the coffin.  It was SO hard for Cliff and me.  Looking back Cliff and say that we should have taken the year to grieve, but we didn't and we pushed forward with life.  I was able to find a teaching job 2 weeks after we moved. I couldn't believe it.  What a blessing that was because it gave me something in my life to focus on and it introduced me to some awesome people who helped me through the toughest year of my life.  But even being busy teaching and coaching the 7th grade girls athletics, my desire to be a mom was consuming my every thought.  You can't go from mom to "unmom" it's unnatural and irreplaceable.  When Cliff and I decided to start thinking of having another baby we did so with much thought and prayer.  We had so many concerns and reservations and doubts, but ultimately we decided to go forward in faith and see what would happen.  We ended up pregnant not long after and we joked around that it could be twins.  For the first time since Alex's death we had something to live for, to be excited about, something to keep us going.  When I got to my first appointment, I had to inform the doctor and nurse of my prior history.  There was not a dry eye in the room, and so with that the doctor proceeded with the sonogram.  She turned on the machine and quickly got a little twinkle in her eyes and looked at me and asked, "now where is your husband again?" And I retold her he was in class or taking a test, I don't remember now which it was.  She just stood there quietly and I said its twins isn't it? And with a big grin, she acknowledged that it was.  Again the tears flew out of me, the doctor and the nurse.  I felt the spirit so strong in that doctors office, as if it was reminding me of that dream I had 9 months before.  I can't deny that my Heavenly Father was preparing me for that moment, a moment he knew would help me in my grief, a moment he knew exactly what would save me from despair.  As I was driving home, that poem entered my thoughts and now I was finally ready to accept that I truly was not alone.  I had never been alone, even though it might have felt like it. 

From that day on my pain was lifted just a tiny bit from my soul.  My days seemed a little brighter and my step became a little quicker.  Then the time came when my arms were not only full but overflowing. I was a mother once again, and I could have not asked for a better way to do so. My grief for the first time became second in my life and in a way it was liberating and in a way it was heartbreaking.  I didn't want to ever make Alex not matter or unimportant but I also knew I could never move on if I didn't stick that part of my life somewhere else.  My Heavenly Father and my Savior knew just what I needed and they kept their promise to always be there and never to let me walk alone and this was their way of showing me their everlasting presence in my life.  I know it was not by accident I had my twins.  I know they were a gift sent to me to help me in my life, to remind me of the goodness and happiness and mercy that can be had despite despair and heartache. I know that if I am not walking alone, neither is anyone else.  And if you are feeling lonely and weary I urge you to find a way to prove he is beside you and you will find your proof, I promise you! 

These are the words from a song Leona Lewis sings based off of the "Footprint" poem.  I heard it a few  months ago and it just brought back all of my memories that I just shared, and I appreciate this opportunity to be able to share my experiences with anyone willing to listen (or read). Thank you for taking the time out of your day to care about mine. 

Footprints in the Sand

You walked with me

Footprints in the sand

And helped me understand

Where I'm going

You walked with me

When I was all alone

With so much unknown

Along the way

Then I heard you say

I PROMISE YOU

I'm always there

When your heart is filled with sorrow and despair

I'll carry you

When you need a friend

You'll find my footprints in the sand

I see my life

Flash across the sky

So many times have I been so afraid

And just when I

I thought I'd lost my way

You gave me strength to carry on

That's when I heard you say

I PROMISE YOU

I'm always there

When your heart is filled with sorrow and despair

And I'll carry you

When you need a friend

You'll find my footprints in the sand

When I'm weary

Well I know you'll be there

And I can feel you

When you say

I PROMISE YOU

Oh, I'm always there

When your heart is filled with sadness and despair

I'll carry you

When you need a friend

You'll find my footprints in the sand

When your heart is full of sadness and despair

I'll carry you

When you need a friend

You'll find my footprints in the sand

Mountains to Climb

When Cliff and I moved here to Erie Co it was basically sight unseen. We had looked at other suburbs of Denver to live and had originally tried effortlessly to find someone who would rent to us. But because the rental market was so flooded, no one wanted to rent to "out of staters" unless we could magically appear the next day for interviews. One day we saw a home pop up in Erie, it was a brand new home not finished yet but would be ready right at the time we needed to move from Texas.  We called as soon as we saw the posting, it was not too far from where we originally were setting our sights, so we decided to see what would happen. The owners were very receptive to us, they were first time landlords, and we were experienced tenants with a perfect history. Anyway they decided to give us a chance and we were so grateful because we were about to move in 2 weeks! When we pulled up to our house it was around midnight, pitched black and could not see anything.  I was so excited to see what was awaiting us in the morning. As I had imagined, when I woke up the next morning and opened my bedroom blinds I was taken back and the amazing view of the mountains we had from our home.  I literally have never laid eyes on such an amazing sight.  I believe where we live, right outside of Bouler, has the best part of the CO Rocky Moutain chain.  

As I just stared out on those majestic mountains, my thoughts quietly turned on Alex.  I was remembering being in the doctors office when we learned that his first surgery had failed. He was 5 months old and had his first surgery at 9 weeks.  The "kasai" surgery was a very invasive 8 hour long surgery.  They had to take out his spleen and gallbladder because they both were damaged and then they scraped out all of the scared part of his liver and then attached part of his small intestine to his liver to make a pathway for the bile to escape out of his liver.  This was the best chance we had of preserving his liver and his odds looked really good for a few months.  All of us, family, friends, doctors were so encouraged by his recovery and liver counts and his jaundice had completely cleared.  For two months it looked like it was working.  I felt so blessed and humbled that my boy might actually have a chance at a decent "normal life." But those hopes faded as I noticed changes and signs of the surgery failing.  When we met with his liver doctor and surgeon it was confirmed that the kasai had failed.  Of course our hearts were broken, and the doctor simply said, "all is well, we have mountains to climb, but we are all ready to climb as high as we can go." With that he said that Alex fell into a rare catagory that suggested a repeat kasai might work.  So they would go back in, scrape out all the scarring and reattach the small intestine.  Cliff and I were so torn on what to do.  How could we put him through that again, and if it failed he would need a liver transplant anyway, and if we didn't do it then he would go straight on the liver transplant list.  I was just about to turn 24, how in the heck was I supposed to make such a huge decision? 

Cliff and I prayed, cried, sought counsel, opinions, anything to help make this decision easier.  We ultimately decided we would give the repeat a try.  It was our last ditch effort to save his liver.  5 months went by and all looked so well.  The surgery was a success!!! BUT now another problem presented itself.  His liver was actually functioning extremely well and liver counts were awesome, but his portal vein apparently never grew which was causing all kids if problems with fluid back ups and other issues.  Basically his liver was failing but not in a way that would get him any points toward a transplant.  The doctor bluntly said, he is probably one of the sickest liver babies, but due to technecalities he won't be listed very high. So we needed another way out.  He was listed in November and come January we knew time was of the essence.  Of course the doctors wanted his to get a liver while he was still "healthy" because they wanted him as strong as possible.  The doctors and liver coordinators tried to plead his case to move him up but it was to no avail.  He did not "meet" their terms.  Such a stupid game.  But I digress. So the doctors approached me about donating part of my liver.  Wow! That was a call I never expected.  Why in the world was I put in yet another "no win" situation?  Donating part of your liver is actually pretty serious and not without major risk.  Cliff and I were so torn again! Cliff was against it, because he was afraid for my health and recovery and it was still a pretty new procedure that Primary Children's, at that time had only performed a handful.  I, on the other hand, as Alex's mother could not live with myself if I didn't at least try.  

Our Bishop came over to counsel with us and give me a blessing, and in his blessing, he said The Lord was pleased with our efforts and he knows we have done all we could physically due for Alex and that Alex was now in the lords hands, the decision has already been made for us.  

I felt so much peace knowing The Lord already had Alex's life planned out.  Of course at the time we didn't know how things would end, but for that night I felt peace.  The next day we headed to Salt Lake City (3 hour drive) where Alex would get some testing to decide if he was even a candidate and then I would get testing done as well.  I was so nervous.  There was a part of me that wanted the results to come back that I couldn't donate because the risks vs success were so unmatched.  But the mother in me knew that I was going to do whatever The Lord wanted me to do and what would give my precious baby the best chance at life.  When we got to the hospital and met with the doctors Cliff and I were taken back when Alex's liver doctor basically told us that we should not do it. WHAT! He was the one who called me personally to tell me that was Alex's best chance.  We were in agony for weeks trying to feel at peace with this decision and now he back tracks.  I could not believe it.  He had just looked at me and Cliff, two young, newly married, new parents and said he can't tell us what to do, but only that he didn't feel good about it.  

We decided to have Alex tested anyway just to see what our options were, and it was found that Alex was not a candidate to receive a live donor liver.  Honeslty to this day I wonder if that was really true, or if that doctor just told us that.  But one thing was clear Dr. Guthrie was against my donation.  So back on the list Alex went, and we were headed back home.  But sadly it was 2 days after that appointment when Alex started his crazy fits and too much ammonia got into his brain.  Apparently based on his labs from that hospital visit he should have not been released.  Can I say that if we had stayed and been admitted would Alex's outcome be any different? I don't know.  But, I can say he was able to go home one last time, and he was able to hug me one last time, and I was able to bathe him one last time, and Cliff was able to cut his hair for the first time, and capture one last video and one last picture! 

The Lord knew all along! This was Alex's path.  The decision had been made and the mountains were climbed.  I heard a wonderful quote from Elder Erying (leader of my church) own talk "Mountains to Climb" "if the foundation of faith is not embedded in our hearts our power to endure will crumble" I believe this can explain how I was able to stand when my legs would not hold me, or why my knees would bend when all they wanted to do was lay down.  

i can't ever convey the pain I feel everyday of having lost Alex, or the lasting mental affect it has on me. I am not going to lie, it's hard to live with the after affects of a death.  Even 8 years later it seems like yesterday, but also seems like forever, a different life I lived. Whenever anyone gets sick I automatically think they are going to die or have an illness that willl be long lasting. I can't escape those fears or worries.  I sometimes think God is punishing me, or picking on me, cursing me, or just has left me.  But when I start to think of all of those thoughts, fears, sadness, my different life, I look out at those mountains, and I try to focus on the highest peak I can see, and I envision me and Alex standing on it together.  Then I remember that I am still climbing my mountains, I am much slower than Alex but he is so patiently waiting and for me to get to the top. 

Moving to CO has been such an eye opening experience because I have understood so much more about myself and my relationship with my Savior.  I have faced some pretty hard challenges and I haven't always felt like I was really being looked after.  But after having some personal experiences I can say without a doubt I am not alone, and that my mountain climbing skills are being refined each and everyday so that I can in fact make it to the top without crumbling.  The Lord wants me at the top with Alex as much, if not more, as I do.  

I hope that each of you can find your mountain and never give up on the climb because I can only imagine what kind of view that can be seen from up top.  I am thankful that I can look out at those mountains and connect with what matters most in my life everyday that I am blessed to live here.  

True Colors

I have never been musical but have always connected deeply with songs, lyrics, instruments, rhythm and pretty much anything that encompasses the art of music.  My sister always found a little amazement that there are few songs that come on the radio that I don't somehow know some, if not all the lyrics.

So I hope you can bear with me with yet another song analogy.  I have always loved the song "True Colors."  I love most versions that are out there.  At first, I just loved the melody and tone, but now as I seem to pay more attention to the words behind all these songs that I have grown up to love this particular song reminds me so much of myself.  I envision myself standing in a big mirror singing this song back to myself.  I am sure that sounds a little disturbing but I am nearly 33 years old and my last decade of life has been contemplating life, myself, choices I have made, experiences I have lived through, the person I am.  I have never been one to ever look upon myself with much confidence, hope, love and understanding.  

When my Alex looked upon me for the first time I felt those insecurities fade. All of a sudden I had someone look upon me as if I was the best thing in the whole world, almost like a super hero of sorts. What an ego boost for me! Of course It was as if God sent his love down through the eyes of my Alex. 

 As soon as Alex was diagnosed my view of myself deflated, as if I was getting something that I deserved.  Why did I think I deserved despair, pain and fear? I can't explain why, only that I guess I just never thought happiness was something I was supposed to be part of.  I felt it for a few moments in my life, but it always seemed to somehow become tainted.  Alex's illness was just another reminder that happiness was never meant for me.  Handing Alex over the surgeons for the very first time felt like I was handing over every piece of myself.  What little love I had for myself, and every piece of purpose I had found walked away in that moment.  

While waiting for his surgery to be done this song kept coming to mind.  9 years ago when those words were being repeated in my mind I was singing them to my Alex.  I knew and understood that Alex's road in life was going to be challenging and different.  1 and 25,000 babies born have this disease.  The odds were not in his favor.  What kind of life would my boy have with a disease that was so rare he probably would never meet anyone who had it.  Of course at that time there was no Facebook or much social media. 

You with the sad eyes

Don't be discouraged

Oh I realize

It's hard to take courage

In a world full of people

You can lose sight of it all

And the darkness inside you

Can make you feel so small

But I see your true colors

Shining through

I see your true colors

And that's why I love you

So don't be afraid to let them show

Your true colors

True colors are beautiful,

Like a rainbow

Show me a smile then,

Don't be unhappy, can't remember

When I last saw you laughing

If this world makes you crazy

And you've taken all you can bear

You call me up

Because you know I'll be there

And I'll see your true colors

Shining through

I see your true colors

And that's why I love you

So don't be afraid to let them show

Your true colors

True colors are beautiful,

Like a rainbow

I thought one day Alex would have a chance to hear these lyrics and find a little comfort and think of me as if I were singing those words (to bad my singing voice sounds worse than a 5 year old or else maybe I would have sung it to him).  Anyway I guess we all know that he never had the chance or needed the chance to hear these words. 

I heard that song sung on the Voice the other day and reminded me of that infamous day of surgery, how my hopes and dreams for Alex were short lived.  But as I pondered on those words again 9 years later my heart taught me that I should have been singing those words to myself this entire time.  Alex never needed those words, because he knew who he was and where he was going.  He had so much wisdom and foresight that even I can't comprehend or explain it.  But he just did.  That final hug he gave me was all the proof I need to know that he has and will always be light years ahead of me.  Cliff and I don't have one picture of Alex where he was not smiling.  He would be screaming or crying and as soon as the camera came out he smiled and then went right back to where he left off.  I always thought wow this kid just loves the camera, but after his death I was going through all the photos we had of him it occurred to me that he smiled all those hundred of times not because he loved the camera but because he loved me, because he didn't want us to be reminded of our sadness or pain.  

What a boy I had! So selfless and so close to God.  I wish I was like him but for so long after his death I wasn't able to find my "true colors," for so long I had such "sad eyes, such discouragement, I lost sight of it all and let the darkness inside of me make me feel small."  Who was I? Who am I?  As I had said in another post, it has taken nearly a decade for me to come to an understanding of my life as a grieving mother, normal mother, wife, daughter, sister, aunt etc.  Alex has helped me all these years to find myself beyond his death.  It took me coming to Colorado and a crewing some other trials to finally see what my life is, and what I have and who I am.  I have had some great friends, an amazing sister, and loving husband and parents to continue to help me along this path of discovery.  I am not just a person who lost a child, but a woman who has overcome and continues to overcome the challenges of life, but who has also partaken some very happy moments despite my sad eyes.  I can't ever hide those, just like I can't hide that they are the color green.  And for so long I thought i had to hide from myself, from my grief, my disappointment.  Now I know I can embrace it, share it, and deal with it.  I can have a life with meaning, happiness and lots of love and joy.  My 3 kids are LIVING examples of my happiness and that I DO deserve it.  Everything Cliff and I are working towards is so that we can one day look back in 50 years and tell our grand children that we lived a great and blessed life.  And we can also tell them that we lived with sadness too.  You can live with BOTH.  

My Savior and Alex are who I "call up" and "I know they will be there." They saw my true colors long before I did.  I personally might not be as beautiful as a rainbow but for the first time in my life I see that my life is that beautiful.  So please don't be afraid to show your true colors, no matter how happy or sad, or discouraged you might be.  You will be loved and are loved no matter what and I hope I can exemplify that to you; to my friends, to my family, to my neighbors, but most importantly to myself. 

Trails of Tears

Our family was driving to Montana this past weekend and on the way we drove by a little town called  Crow. As we drove past Cliff made the comment at how run down it looked and I told him that it looked like it was an Indian Reservation.  So of course since we have instant access to information I quickly looked it up and it was indeed a reservation of the "Crow" nation.  As I looked out and reflected upon the history of the Indians (in general) I began pondering about how the end of a once might civilization, in a sense, ended. How sad, humiliating, maddening, depressing that this must have been for those surviving members and warriors.

My mind wondered and started thinking about the "trail of tears." That was the name given to the ethnic cleansing and relocation of the "five civilized tribes" (Cherokee, Creek, Seminole, Chicksaw, and Choctaw nations). Many died from starvation, exposure and disease on the way to their destination.

Ok stay with me, sorry for the brief history lesson.  But the term "trail of tears" prophetically describes so many of our moments in life.  I am certain that the many years before the settlers came into North America, the Indian tribes, never envisioned how their mighty legacy would end.  How generations of teachings, traditions, and knowledge would slowly fall along that trail of tears.

 I can't say that when I was young, playing soccer, hanging out with my friends, going to college, dating, getting married, that I ever envisioned my own trail of tears.  I never ever forsaw my path of despair, disappointment and sadness.  Now mind you, I was never mighty or did anything extraordinary.  But I had so many dreams in my mind that I would be bigger than I was.  I would do awesome, life changing things.  I was going to be the "teacher of the year" best wife ever, soccer mom of the year.  The moment the doctors said "biliary atresia" my "internal might" was the first thing to fall on my own personal trail.  My body crumbled internally as I held my child and the doctors were explaining this terrible disease my baby had.  My dreams for him, for me, for my family were not dreams anymore.  I didn't know what they were.  I felt betrayed, scared, lonely.  Cliff and I had only been married a year.  I was 23 years old, what the heck did I know about life, let alone the possibility of death?

Why would God give me a life just to turn around and take him away? As days passed and weeks and then months my trail grew longer and longer.  I was living, because I took a breath every second, but I was dying at the same time.  How could my mighty warrior be losing this battle I was fighting so hard to win? Why wasn't I good enough to keep my child? Why was he better off in Heaven? Why were the other mothers holding their babies and I was touching dirt? Why did the Americans have to build trains, expand and grow beyond anyone's expectations? Why did the Indians have to suffer because of it? I wish I had the answers to all of those questions, but all I can come up with is that is was all because that's what needed to happen.  We have all witnessed that you can't stop progression. You can delay it, you can pretend that it's not happening, but in life there always has to be that next step.  Nothing lasts forever, nothing, except for one thing and that's our Saviors love for us.

I have realized this weekend that while those people were walking on the trail of tears there was someone behind them picking up everything that they were let falling.  All of my tears and part of my soul have been picked up and will continue to be picked up.  Alex's trail led him exactly to where he needs to be.  My trail is hopefully leading me there too.  I have certainly stumbled, strayed and stood still along the way.  But I know that I have to walk through this because I have no choice.  Life moves on, changes happen, I can rebuild my dreams and myself it's just going to be different.  It's never going to be as mighty as I once dreamed but it can still be strong and good.  A part of me was dropped and is now waiting for me to come claim it.  I never believed that I would be able to get it back but for some reason I understand now more than ever that each day I laugh, each day that I have a friend or family member support me, care about me, each day that I do get to hug my kids, and each day that I get on my knees, are all ways that I am putting myself back together.  I can't do it alone and I certainly don't want to.

As I think back to driving past that reservation, I wish that it would have been this magnificent, vibrant, thriving, the most amazing town I had ever seen.  I decided that I don't want people to drive by and look upon me as I looked upon that reservation.  I don't want my own trail of tears to be the end of me, but merely a part of me.  I hope each of you who read this can look at your own trail and see how you can make it mighty and great.  Alex's death will continue to remind me of what I lost but it also reminds me of what I stand to gain.  It has been a big price for me to pay to learn all of this and yet there is someone who is mightier and greater than us all who paid a bigger price on the hopes and faith that the returns will be even greater.  My trails of tears will one day make me mightier than I could ever imagine but for now I will continue to just walk slowly.

Tears in Heaven

I think most everyone alive has heard the beautiful, heart saddening song "Tears in Heaven" by Eric Clapton.  He wrote that song after his 4 year old son, fell out of a 53rd floor NY apartment window. I think any parent, or person with a heart can cringe at the thought of their (a) child dying. Probably would be at the top of most peoples worst fears list.  Sadly, like Eric, I too lost a child.

A few years ago I started a little blog about him and the process of dealing with the death of a child, but I stopped blogging after a few posts.  I was not sure anyone was even reading it and wondered what advice or knowledge could I personally give.  My child died, it sucks, the end!!

As time has progressed my husband and I have moved around a lot, and every time we move comes the inevitable elephant in the room, that of course no one except us knows is even there.  I am very open about our experience but I always feel bad recounting it to new friends because at the end of the quick synopsis that person is left speechless.  And then the awkward "I am so sorry" and then my awkward response" oh no it's ok it's been 8 years we are moving on."  As I have had to re tell "my story" a hundred times I have come to realize that through my 14 month experience with my son I never really wrote about it in my journal.  I remember my mom or dad or both continually telling me to write things down as they were happening and In my head I was thinking, I don't want to remember.  It's going to be too painful to look back at those sad entries and drudge up my old wounds.

Well, Feb. 12, 2014 marked 8 years since Alex's death and I feel in such disbelief it has been that long since I last saw my baby take his last breath on this earth.  Time is slipping away and as my 3 children continue to grow up they are becoming more interested in what really happened to their older brother and I want to have something to pass down to them so that one day they can read and learn about the life their mother, father and Alex lived before they entered into our family.

I was driving back with my kids from a trip and I needed some "me time" so I stuck my headphones in my ears and turned on Pandora.  Then the song "Tears in Heaven" came on.  I, of course, have            
listened to that song a hundred times before and always knew the origin of it, but I never really listened to the lyrics and emotion behind it. But today since I was trying to tune out my kids I was able to really listen to the impact of this song and for those 4 minutes 31 seconds I could hear and feel the loss (sadness) yet acceptance Eric found.  This moment was powerful to me because it is how I have felt for 8 years.  Sadness yet acceptance.  Those two emotions are a very interesting combination.  A few of the lyrics that are just so powerful to me were:

"I must be strong
  And carry on,
 'Cause I know I don't belong
 Here in Heaven

"I'll find my way
Through night and day"

"Time can bring you down,
  Time can bend your knees.
  Time can break your heart
 Have you begging please, begging please"

"Beyond the door,
 There's peace I am sure
 And I know there'll be no more
 Tears in Heaven"

Those words may not resonate with you because not many have walked in my shoes but for those of you who have or will or want to know I could not have said it better.

My Alexander was born December 18, 2004 and died February 12, 2006.  He was 14 months old when he died.  At 8 weeks he was diagnosed with a rare liver disease called biliary atresia.  We tried multiple surgeries to help his liver to better function but sadly all the efforts made were not powerful enough.  He was placed on the liver transplant list in November of 2005.  He was strong, vibrant and healthy otherwise.  He was laughing, moving, playing, even almost saying "momma." Elmo seemed to bring the most comfort to him.

As it became clear his insides were slowly dying we still had high hopes for his future.  I prayed and prayed that we could celebrate his first birthday and Christmas at home, and not on the surgery table or hospital.  The Lord was so merciful because my prayers were answered.  Alex had his healthiest month, since he was diagnosed, that month of December.  We were so happy and have pictures for us
to reflect on that time to prove it.  But sadly I had this nagging feeling Alex's time was coming to an end.  As I would relate my feelings everyone dismissed them as thinking negatively or losing
hope, but when I would try and picture my future I could just feel he wasn't going to be part of it.  Randomly one night little Alex was not acting normal.  We had just gone to the hospital for a check up a day earlier and he was fine, everything checked out "normal" so we thought maybe we was just coming down with a cold.  For a liver baby and illness could be devastating so the liver doctors told us to come down (3 hour drive). By this time he wasn't acting right, like he was losing his mind.  It was scary and weird.  As I picked him up to put him in the car, for just a brief second he stopped and
hugged my neck so tight, for just a moment his mind had stopped.  As I relished his hug the thought came to me, I think he is saying good-bye, this could be my last hug. I quickly brushed it off as being paranoid and then his episodes of acting not normal continued.  As we finally arrived to the hospital Alex had bitten his tongue and was bleeding everywhere.  We had no idea what was happening.  We rushed him in and they immediately intubated him and then put him on life support. Here he was just a day before his normal self and now unconscious and on life support. It was so surreal.  Apparently he was getting too much ammonia to his brain which was causing his "non" coherent episodes.  This was a sign of liver failure.  As Cliff and I came into the ICU the next morning (you are not allowed to sleep there) they were doing chest compressions as if he were dead or dying, but they told us they were just switching life support (making it sound like it was normal) but come on, I was young (24) but not
stupid.  I knew things were bad at that point, but all the doctors kept trying to put on an optimistic front.

That night I dreamed of Alex and he told me it was time to let go, that he was already gone. I of
course woke up sobbing and told my husband my dream.  Cliff told me that we needed to hang on a little longer to see what his chances were of really recovering.  At that point percentages are what Cliff wanted to hang onto.  A few days passed by and it looked as if Alex was getting stronger.  They were able to take him off the major life support machine and "down grade" which was actually a major milestone. We felt maybe this was it, he was going to make it and I felt that once again I was wrong and just letting my fears take over.  That night we went to the Ronald McDonald house feeling hopeful.  But then Cliff had a dream and in that dream Alex was pulling out his life support tube and told his dad he needed to go.  When Cliff recounted the dream he felt resigned to the fact that he can let go if his odds of recovery were low.  We hung out that day in the hospital again feeling hopeful things could turn around and that a liver would become available.  I had just taken my sister to the airport and on my drive back apparently Alex had a seizure, which is not too uncommon for this situation but they wanted to do a CAT scan just to be sure.  Devastatingly, it was discovered that Alex had become brain dead, it was so bad that if we were to do a transplant he would merely be a vegetable, there was no way to recover from the severity.  None of the doctors saw this coming.  He was having "normal" bodily movements and eye response, but sadly that was the part of his brain that was not damaged.  He is believed to have become brain dead when they transferred him from the lesser support to the mega support (oscillator), the time when we walked in and they were doing compressions on him. That night was when I had the dream, so my poor little Alex had been brain dead for a week before we found out.  I was right all along.  Alex knew, I knew and the Savior knew it was his time, and now finally Cliff knew.

I can't even express how sad it was to remove those tubes from his tiny little mouth, knowing that at any moment I was going to watch his last breath.  But I felt grateful because for a year I had prayed and prayed that if Alex were to die that I wanted to be with him.  I didn't want him to go on a surgery table with a bunch of doctors or during the night when I couldn't be there.  I was there, and Alex didn't have to endure another surgery.  His suffering was coming to an end and mine was merely beginning.  Watching the process of death is not peaceful or quiet or silent.  It was awful, he struggled to breathe and so you could hear the gurgles in his lungs and he just laid in his daddy's arms still, but with loud breathing.  I hated every moment but yet wanted him to hang on but wanted it to be over.  45 minutes had passed by and I was mad in my head at god.  Just take him, please this is awful.  I was swearing in my mind because it was so unfair to have to be there enduring such pain.  Then quietly a voice told me that i needed to tell Alex that I was ok and that he could go.  So I got down on my knees and kissed his cheek and whispered in his ear "Alex it's momma, it's ok for you to go, I will be
ok, I love you." And with that final spoken sentence to him he drew his final 3 breaths and his spirit left his body.  He stayed for me! Here he was knowing he needed to go but he stayed for me.  How selfish I felt and yet it gives me such overwhelming feeling of gratitude to know how much Alex loved me and loved his dad.  He didn't want to let go of us as much as we didn't want to let go of him.  But we all knew that was Alex's journey to fulfill.  How envious I am of his reunion.  I wanted to be part of it, but as the song reminds me "I don't belong here in Heaven"

Our trials and our triumphants  mold us to who we are.  In a way they define us.  My experience with Alex has defined me or shall I say, redefined me.  It is at the center of everything I do and think.  Some days I feel blessed and other days I don't. But someone has to go through these experiences so instead of saying "why me" I need to remind myself "why not me?" Why should I expect someone else to have had to go through this? Why do I expect to be picked over for a trial so difficult it has nearly at times broken me.  But I know that I am not special, I am not extraordinary.  I wasn't specifically chosen for this trial because I could "handle it." Let's be honest we all would crumble at the thought of the death of our child.  What I do know is that I am just Courtney Luff who happened to endure her child dying.  I don't resent it, and I have never been bitter because of it. I have been sad, frustrated, confused, angry, lost. Haven't we all.

I don't want you to read this and feel bad for me or even sorry.  I don't want you to look at my story and then think "well I thought I had it bad, I am grateful for my life" because I don't think we should look at others despair and use it as a tool to lift ourselves up, but we can use it as a tool to lift others up.  Because the fact is I have a lot to be grateful for.  My life is blessed in so many ways.  And when I read other peoples stories of tragedy or trials, I never stop and think "oh I guess life could always be worse" to me that is so insensitive to that person because it's almost degrading their blessings despite tragedy.

If I could have 1 wish granted it would be obvious to say I would wish Alex back but the reality is I wouldn't because "I carried on" and have 3 beautiful children because of Alex.  I have an understanding and empathy of life because of Alex.  And I have hope and faith because of Alex.  If I let go of my faith in my Savior then I am letting go and giving up my hope of being able to see Alex again, and I am not willing to do that.   He gives me strength every single day to be grateful and to remind me what direction my life needs to go and that is towards my Savior which in turns leads me right back to my Alex.  "Then there will be no more tears in heaven."