Thursday, September 12, 2013

Raw Honest Truth

Image Via: Elli.com
 
It's becoming harder and harder to write these progression posts. It's been 3 weeks since the last clinic date. Each clinic appointment leaves its mark on us. Some cut really deep and some patch up the wounds from the months before. They are never predictable and always filled with a reel of memories that flash consistently through our minds...a slide show of pre and post diagnosis pictures.

I am a planner. I like to be prepared for difficult circumstances and I don't like to be caught off guard. So, in my attempt to keep the family all informed and moving in the same direction- meetings become imperative before clinic days. This time around... it didn't happen. No one wanted to talk about the obvious. For the first time in months I couldn't even wrap my brain around another clinic day. As the hours of that day passed by and the appointment crept up on us- we gathered everything from the house in silence and walked to the car. The Diaphragm Pacer System was placed on the floor, the IPad and Brookstone writing tablet set aside, bags of materials neatly in its place and seat-belts buckled. I began to drive and looked across to mom. Sitting in silence the air was thick and the burden was heavy.

And then, the words came spoken in a generic, robotic female voice- "I don't want to do this today. I don't want to hear what they will say". Truth. Raw honest truth.

Some days you can put on a full set of armor, stand strong and charge towards the battle ahead. And, some days you can barely pick up your sword and lay instead on the battleground in defeat. This day was full of defeat.

Our fears were confirmed as we sat in that sterile white room. After such a high- and experiencing an incredible miracle 3 months prior, we were hit with the gravest of news- a deep cut across our souls as we learned that mom's breathing has taken an incredible plunge. Her tests revealed that she has dropped from 60%-20%.

The drive home was the opposite of the drive in to the appointment. There were tears and frustrated words. There were first time confessions of just how hard things really have been lately. More deep moments of raw.honest.truth about the struggle mom has been enduring the last few months. Fears confirmed through spoken confessions of a new reality. And, an intense picture show of life before, life now and life to come in the future.

In the midst of the struggle and pain and defeat we still hold strong to promises made. We are exhausted, we are sad and we are human. But, never once is that mistaken for thoughts of being forgotten or spirits of bitterness. We serve a mighty God with a mighty plan for our lives- even in the midst of ALS. I am so thankful that even in the hardest of times, in the darkest moments we don't have to fear. And, in the midst of everything we are still seeing incredible miracles.

Friday, August 9, 2013

A Caregiver's Perspective


I often think that the act of caregiving is an art. Some of us have been so intricately designed with a talent that exudes nurturing others. And for some it's an art form that slowly begins to fill each crevice as it leaks and runs across the pages of their lives until it becomes a beautiful portrait. 

I have always enjoyed taking care of others and being there to encourage and pick them up. But, it wasn’t until I was thrown into it day in and day out that I realized how much of a blessing it is. 

To pour your life out and lay it down for another is the greatest gift you can offer someone. To change your perspective from yourself and what you can gain in this life to seeing to the needs of others shows incredible character. 

In the beginning of my mom’s battle with ALS I was so angry. I would look around at those with “seemingly perfect lives” and fill my head with bitter thoughts. I was consumed with an attitude of “why her”, “why my family”, “why are we struggling in every area while others are getting so far ahead in life”. It has taken many nights of crying out and laying down every expectation and goal I had for this life to realize that this trial may be the greatest thing that has ever happened to my soul. 

I’m learning that the art of Caregiving has opened me up to the beauty of life more than any other experience I have had in the past 29 years. 

I see the heart cries of my friends and family and I begin to love them deeper. I see the battles each one faces and realize that ALS or not- their souls need protection. Though our challenges look different they are all equally as hard and unique. 

The comparison of war-trenched lives and heartache has stopped and in the midst of letting that go the most incredible amount of peace has filled each ounce of my being. 

.............

If you are struggling with your role as a caregiver, if you are exhausted from the biggest fight of your life or if you are looking for answers I encourage you to dive into this book: 

Image Credit: www.Bostern.com


Bo Stern has so carefully crafted her family's struggle with ALS through her book "Beautiful Battlefields." It is full of scripture, encouragement, and tools to fight any battle. I carefully inhaled, prayed, studied and highlighted so many aspects of this book and I know it's a tool that will help anchor me in any battle I will face on this earth.

Disclaimer: All opinions and recommendations are my own. I share because I am convinced this will impact your life in a mighty way. 



Friday, June 7, 2013

Two Fierce Little Warriors!



So much of this blog is a gentle intertwining of the new life I am building with a family of my own and the life that raised me and pushed me to where I am today. I love the delicate balance between the two.

If you asked me just a few short years ago what my thoughts on motherhood were I would have painted a picture much different than the one I see today. I'm grateful that life experience and grace has overtaken my viewpoint.

I never thought I would be a mother to TWO boys- but, honestly... I can't see it any other way. I am so excited to be giving Ryan a brother and I know that they will form a bond so strong that it will never be broken. I love that I have been given the opportunity to raise two fierce little warriors. What an incredible calling and such a huge responsibility. I cant wait to meet this little one and see just where our family is headed.

Tuesday, May 21, 2013

The Act Of Surrender And A Miracle


You know that moment of surrender? After you have been fighting and kicking and holding on to every ounce of control you can- yet still feeling bitter and tired and frustrated. That moment when your mind, body and soul all come together to shout: "enough, I won't be held captive to this anymore". And, then as if that dark veil that had been covering your eyes for so long is lifted and all you can see is grace upon grace and rolling hills of fresh new life before you. This is where I stand. Although, the process of surrendering and letting my false notion of expectations for this life fade away has been a long process, I can finally feel the weight lifted off of me. 

(unrelated to this post... but a perfect picture of pure innocence & an act of surrender)
The freedom that comes from choosing to no longer walk in anger or fear sends you soaring into a place filled with faith... Faith that no matter what you encounter there are hands to hold you and arms to walk you through. 

I've often wondered if my struggle with surrender has kept me from seeing the little miracles and blessings bestowed upon us each day. If that barrier I have placed before me has halted every good and perfect gift. But, rest assured my friends- even in the struggle- we aren't alone. And those gifts- they get poured out in abundance with even the littlest of faith. 

The greatest thing about surrendering and choosing to believe despite every obstacle are the miracles you begin to witness. As if that gentle hand of love reaches down to remind you that He hasn't forgotten. That each step in our faith draws us closer and that He loves imaginably more than you could ever comprehend. 

This past week we witnessed an incredible miracle. As we found ourselves in the ALS clinic for mom's progression appointment like so many times before- we prepared to hear the statistics and numbers that have permeated us for the last 2 years. The testing began and mom was handed her antiquated tubing to conduct her breathing test. The tech placed her plug over mom's nose and set the machine. Mom was told to take a deep breath in and blow out in the tube for as long as she could and for as hard as she could. I watched as I always do and I saw an effortless blow. I remember thinking- "wow, I don't even know the last time I saw her do that so well". The tech commented on her strength and with disbelief began asking mom questions regarding her bi-pap and diaphragm pacer. She then had mom test an additional 2 times. In total- mom completed 3 tests with the same effortless blow of air. 

As each therapist, nurse and doctor came and went in our room we heard over and over how great her breathing test went. As Dr. Ladha came in and did his assessment he told us that her FVC (the amount of air she can exhale) measured at 63%. Three months ago with the same test mom was told she measured at 34%. We were shocked and full of emotion. We know the importance of these numbers and the meaning behind them and there was nothing left to do but to immediately offer up a praise of thanksgiving. 

It is truly amazing what happens when you surrender and there is no denying that God is and has been performing a miracle through this crazy mess of ALS. We certainly don't know what is to come in this adventure but with each glimpse of His glory that He places upon us we rest assured that every detail of our lives is intricately knitted in the palm of His hand. 

I don't think that we can say it enough- we covet your prayers and are forever grateful for them. We believe that even when we don't get an immediate response God is faithful and prayer is powerful.

Friday, May 3, 2013

ALS Awareness- Dutch Bros Coffee & a Video

It's 9:00am and I have already cried 3 times this morning. I can't even begin to put into words how loved we feel right now. That cup of coffee, that extra drive in the morning to find a Dutch Bros. to support MDA day and ALS. It's overwhelming. Each one of you is making a difference in the lives of those living with ALS. Thank you so much for supporting mom and loving her through coffee!

If you havent done so... you still have a chance to participate and get to a Dutch Bros. Coffee. All proceeds today are being donated to the MDA in support of ALS research. Drink one for those who have already lost their battle and drink one for those living through it today!

Side Note: Here is a link to the video we had the privilege of doing yesterday with Fox 10 News and Dutch Bros.  




Monday, April 29, 2013

On My Heart


On my heart lately:

Thankful-Thankful for friends who have sheltered us with love- standing strong in their own grief to protect our hearts... friends who have sacrificed their pain to rejoice in our celebrations.

The gift of time- I've been so aware of just how much time we have been given and I've learned to embrace every second of it. I've learned to say constant prayers of gratitude.

Awareness- May is around the corner and the sudden influx of all things ALS are about to be flooded into our lives. I have a love/hate relationship with Awareness months. I know the importance and if I could shout on every roof top campaigning for more funding and more research and a cure I would. But, some days I feel like such a small voice in a loud crowded room. We live this every day. We are aware of the struggle and the pain and frustrations that surround anyone with ALS. ALS Awareness month forces me to look at the severity of the situation and at times can be so suffocating. Yet, we keep fighting and kicking down those walls because our loved ones deserve it. They deserve the funding and the awareness just the same as those who suffer from other terminal illnesses.

Rest- Exhaustion has completely taken over the past couple of weeks- a simple reminder to take care of myself and my family... a time of reflection and rest to rejuvenate myself to keep giving and to do so with more intensity than before.

Excitement- Joy for the baby to come and all the planning and preparing... I've been savoring my time with my little one as I want to cherish each moment that I am all his and he is all mine.

I hope your hearts are full of joy and love right now. If they are heavy I pray that you would find comfort and peace.

Monday, April 15, 2013

Throes of Life


Life doesn't stop when you are thrown into the fire. The blazing flames of disease- the heat and smoke clouding your vision. We are fully engulfed in the throes of life and yet we keep moving. We stand up to those flames. Some days we are hanging on with little droplets of fresh rain and some days we are pouring buckets of water drowning out the lies and fears.

Over the course of these last two years I have learned that the greatest gift I can offer mom is to keep living life in the present. Dream for the future and stop putting limits on what this life can give us.

For so long I held on to the past and stood frozen to my future. I let myself burn in that fire. Today, I am still engulfed in flames but I'm not burning- instead, I am being refined.

I'm so excited to announce that we are doing just that- embracing life for what it is right now and overjoyed to say that we are expecting another baby! Our bundle is set to arrive in early November.


I know regardless of all that we are walking through- this is exactly what mom wants for all of us. To keep living... to be brave when it seems impossible and to embrace every moment of joy.

Monday, March 18, 2013

On the Mend


After 2 weeks of fighting the Flu and an Upper Respiratory Infection mom is finally on the mend. I know many of you have been waiting for an update and praying for her. Thank you for reaching out and keeping us in your thoughts.

Yesterday was the first day we all ventured out of the house since she has been sick and mom did great. Tired, but she felt so refreshed.

It's always in these moments that we count our blessings and the incredible community we have found. It's amazing what an email to check in or a tweet asking about her can do for your soul.

Many...Many...Thanks friends!

Wednesday, March 6, 2013

Influence

I have been so privileged to be a part of what's known as The Influence Network - a community of women that have a great passion to influence the lives around them- A group of women who bring accountability and grace. I have gained a greater respect for the women in my life and the family and friends that I surround myself with every day. Today each of us is linking up together with a post about who we are.

Why do I blog?

When my mom was diagnosed with ALS (Lou Gehrig's disease) in November of 2010 I was eight months pregnant with my first baby. I had been enduring a very complicated pregnancy on top of trying to find answers for why my mom was so sick. After the diagnosis, I immediately turned to the internet and searched high and low for a blog of any kind that could relate to where I was at. I had a million questions, fears and a lot of pent up anger. I was desperate to find someone that could walk with me through this new journey. My search came up empty. I found very few resources and only a couple of blogs that hadn't been updated in months. I believe that I was given a passion and desire to pour my heart out for others experiencing life in a similar way. It was at that time that I knew I was made to bring a light of hope for those in tragedy and a voice to the voiceless. I believe that God has not only brought healing for myself and my family through the words I type but given me a focus for how I can influence and change the ALS community. My greatest desire is that you would find hope and peace in this blog... that you would know that no matter what circumstances you are facing there is a God of love ready to envelope you in peace and hope.

A Picture I love: (first professional photo as a family of 3!)

Photography c/o: Shannon Worley Photography
The girl behind the blog- 3 things you don't know about me!
  • I love some good quality alone time. A couple of hours to decompress-dream and create vision. Add in a nice handcrafted vanilla latte and I am golden!
  • I love to write letters and send cards to people I really care about. Words of affirmation is one of my love languages and I thrive when I can bless someone with a note of gratitude.
  • If I could get away with it... I would eat a snickerdoodle cookie for breakfast every day! :)

Sunday, March 3, 2013

Rest & Quick Update

Hello friends! 

A quick update: we've been really sick over here. The flu has hit our house full force- despite flu shots and lots of hand washing. We are going on two weeks and I am beyond ready to shed this awful virus and get out of the house! 

Unfortunately, mom has come down with the flu as well. She isn't able to fight it like we can and she's very sick. Please keep her in your prayers this week as she tries to recover. This all comes with a flood of emotions... 

I'll be back soon with an update. Until then- thanks so much for the prayers! 

Wednesday, February 20, 2013

Her Voice

Amidst the shock and horror of discovering that our family was trapped in a web of labels and uncertainties, one thought continued to race through my mind- "her voice"... as the thought pulsed through me I reached for every crevice, every dark hidden corner to find it. I was longing for one crumb- one memory to come rushing over me- a whisper... anything to put me at ease. The faster I searched the more suffocated I felt. It was a great fear of mine that I would never hear the sound of her voice again. And, worse- that I would forget what it sounded like.

Fast forward 2 years and it has slowly happened. The remnants of my mother's sweet, calming, familiar voice have drifted away. The inflection-the soft soothing sound and the incessant questions no longer exist in my mind. Those corners and crevices have been scrubbed clean and the last little droplets have dried into distant vapors. It has happened a lot faster than I expected.

I don't think I realized the weight I was carrying or the progression of losing the sound of her voice until this past clinic appointment. We arrived as we always do, greeted with kindness and enthusiasm to catch up on our lives. Our first visit was with our local MDA representative. She smiled as she pulled out an Ipad, a recent donation to the clinic. Already familiar with the device and its capabilities I began to write notes and questions for the rest of the clinic staff. I was turned slightly away, giving my mom space to visit with the rep, when I heard her speak. A simple yet timeless phrase- "hi, how are you?" Surprised, I looked up to find that it was not my mom who had spoken but the Speak It app on the Ipad that had voiced those words. I realized in that moment, that device-that automated female voice- had replaced every memory I had of my mother's voice. My spirit was crushed. My eyes intensely filled with tears and my chest began to cave in as I swallowed the existence of this new reality.

It's in these moments that you are reminded of the gravity of this disease. You come face-to-face with the giant standing in front of you beckoning you to claim defeat. It's another sling shot pulled back aimed at each one of your weaknesses.

I may have lost the ability to physically hear the sound of my mother's voice-but, her spirit, her gentle encouragement and her passionate-stand up and fight attitude, still shout so greatly inside of me. ALS has stolen pieces of my mother- but, rest assured that with each item stolen that much more is gained. My spirit and my life have forever been changed for the better.

Friday, February 8, 2013

The Power of Words


There has been an incredible renewing lately. A splattering of dew drops covering everywhere I look-that feeling of growth- a fresh rain being showered upon you turning your frosted bud into brightly colored petals.

Words are powerful. Translated from the chaos inside, they speak life and they speak death. I have seen lives transformed with one word. Tears are halted; laughter erupts and bubbles over, hope begins and spreads like wildfire. And, to the opposite-I have seen lives diminsh with one word-broken and tattered claiming defeat.

Those droplets of encouragement have become so intertwined inside of me and I am ultra-aware of the community to which I belong. The very roots of my existence have been watered and nurtured with quiet whispers of friendship and the deep pruning efforts guiding me along. Never did I imagine that I would find such strength in a community of people stricken with tragedy.

My favorite thing about this incredible community of people, who have quickly become family, is the passion and fierce desire to change the circumstances of this world- to stand up to the definition of a diagnosis. To run a course that out-lasts every time-line. To leave a hand print everywhere they touch. A fire ignited burning rapidly to have their voices heard.

Will you join me and stand up to the labels you have been given and speak life into the lives of others chasing a time-line? Will you continue to water and nurture the roots around you and refuse to participate in the devastating destruction of careless words? I really believe this community of leaders, advocates, patients and caregivers can alter the devastation...one outlook at a time.

Tuesday, January 29, 2013

Reality

It's happened twice now. That huge dark cloud that suddenly presents itself- it hangs there above you and furiously envelopes you. It sucks you in like a cyclone and sends you spiraling out of control. That panic- the all-encompassing fear that no amount of reason or logic can send away. It's painful and distracting. It's annoying and leaves you with a great sense of guilt.


The most recent occurrence happened Saturday evening. My husband and I planned an entire night out to celebrate our 5th Wedding Anniversary. We made arrangements for the baby to have a sleepover with his grandma, reservations for dinner and a lock-down of cell phones. I had been craving this quality time with Craig and the opportunity to sleep in. About 40 minutes into our adventure I started to feel my brain going in all kinds of suspicious places. Thoughts of: "what if something happens to us- no one will know what to do with Ryan." "We don't have any plans prepared- do we even know what we want?" "Mom is sick, will she be able to communicate to other family- will they say she is too sick to take care of Ryan?"...

Since the diagnosis of mom's ALS and the birth of Ryan- all kinds of fears have crept in on me. They come as quiet whispers in the shower and loud thumps of tragedy in my sleep. It's a constant tug-of-war...that fear and I... it pulls me in and I pull back fiercely demanding that it lets me go. On Saturday, my strength was gone and instead of pulling harder I let that fear drag me deep into its black hole. I cried in the car as the panic stole every breath I had. As my heart pounded louder and louder I gave in. My husband patiently listened to me, reminded me of every promise we have been given and that though it seems impossible and scary right now, everything will in some way or another be OK. We called and checked in on Ryan and found that he was sleeping soundly in the arms of his grandma- a reminder that there is an unseen blanket of peace and comfort always surrounding us- even in our fear.

To say that we all cope differently is an understatement. Maybe instead of a panic attack- you hide and close yourself off from the world. Or, maybe you turn to comfort in the form of a bottle or sarcasm. Maybe, you are angry or sad and cope with endless amounts of sleep... whatever your form of "coping" looks like each mechanism begs to remind us that we aren't in control. How great to know that we don't have to be in control. The nuances of this world are always going to bring about a situation that require us to "cope". With the right amount of support, forgiveness, and prayer we can turn those harsh unhealthy mechanisms into healthy positive forms of grace.

I'm a work in progress and I struggle all the same with this horrible disease that has stolen so many aspects of my mom. But, today- I walk in the peace and comfort of Hope even in the midst of panic.

Tuesday, January 22, 2013

Let's Celebrate!

Do you know what a genuine birthday celebration can do for your soul? It breathes life into the dry cracks of your bones. It sings gratitude over your heart. It claims a sweet victory over a life you have no control over. It whispers a sweet reminder that you are loved, cherished and given great purpose. It shouts a sweet promise that you were gifted another year to make a difference.


My beautiful mom turned 52 on Monday...a triumph in so many ways! We celebrated with a girl's day out; manicures and pedicures- a decadent lunch, shopping for new shoes and a quaint family dinner. We spent each moment soaking in the day, creating new memories and re-living old dreams.

I sat in awe at the miracle of the night as we sat outside beneath the string of vintage lights. The smell of wood-fired pizza, hazelnut and caramel lattes encompassed our senses. The laughter of a two year old boy filled our ears with joy.


I am slightly ashamed to say that two years ago I never imagined that we would be celebrating in this manner. I never thought that my mom would be walking to her place at the table or that she would be able to eat a bowl of minestrone soup. I fell victim to the statistics and predictions of the medical community. I doubted the tenacity of my mom and the powerful miracles that were stringing themselves together beyond what I could see. I am so thankful that when it feels like you are falling over the edge there is always reason to celebrate. I know that in my doubt and anger there is grace. I also know that no matter the circumstances- a birthday is always worth celebrating!

In the future our celebrations may look different but they will always mean the same thing- a gift, a promise of hope and a breath of life.

Tuesday, January 8, 2013

Be Still & Know



I saw Les Miserables yesterday. After a very emotional and hard few days I decided to take a day for myself. A day to rejuvenate, refresh my soul and stop the endless negativity that was filling my mind. I slept in, drank my coffee in bed as I browsed the web, and just let myself be. No agenda, no to-do list and no one to care for.  As I walked up to buy my ticket I felt such a strange sense of self-confidence. One I haven’t felt in a very long time. I didn’t care that I was there to see a movie by myself, I didn’t care that people lingered about watching me. I finally felt secure enough to stand boldly in my decision and honestly I think it made the whole movie-going experience a success.

I cried as I watched the most beautifully tragic story unfold before me- A story of anguish, fear, redemption, grace and unconditional love. There was so much symbolism wrapped up in the lives of those characters. I saw the love of God drip endlessly out of that story; I felt the unexplainable desire to do anything to protect your child- even in death. I saw how one transformed life can affect countless other lives. How selflessness even in heartache gains a fresh new beginning. I found a new appreciation for the redeeming grace of Jesus Christ.

Yesterday, I let myself be vulnerable. I opened myself to see new surroundings and to feel life in a very raw manner. I stopped the busyness of life to find peace and allow my soul to be refreshed. I quieted my heart to find grace and to be filled with an overwhelming sense of true love. In my rawness I was able to find the exact healing I needed to continue to give myself to those around me. To be the support and strong tower for my mom, to see the intense unspoken heartache felt by my dad, to be the loving patient and playful mom to Ryan and to be the encouraging and supportive wife to my husband.

I pray that as you read this you will know that in the midst of whatever you are facing- large or small- the outcome is the same… there is a love waiting to envelope you in peace and joy. Take the time to embrace it- I promise you it’s worth it.

“Be still and know that I am God.” Psalm 46:10