Tuesday, April 29, 2014

Dutch Bros. Coffee // Annual MDA/ALS day!


Image Credit

Hello Friends!! I am breaking my radio silence to remind you that this Friday, May, 2, 2014 is Dutch Bros. Coffee annual MDA fundraiser! This is such an awesome event to raise money and show support for the ALS community. Go enjoy a great cup of coffee and drink for Dane, Linda and all of those living with ALS right now. 

If you participate we would love to see your photos! Take a picture of you and your drink and use the hashtag: #drinkoneforLinda so that we can stay connected throughout the day. I know that it would mean a great deal to my mom to see all of your support- and a picture is the perfect way to capture the moment! 

Monday, March 3, 2014

An Ode to Beauty

     

  When I look at you I see grace. 

          I see your beautiful face pre-ALS diagnosis. 
          I see passion and a fierce desire to fight. 
          I see a beauty that exudes compassion. 
          I see a lady destined for greatness 
          I see a Mom who has spent years empowering her children. 
          I see a Nana that puts love into action. 

When I look at you I see a radiance of beauty despite the paralysis and physical changes that ALS has brought. I see a Queen with a crown full of jewels. 

I look at you and think there is no greater beauty than you right now in this moment. 

          You are more than ALS.
          You are more than a timetable.
          You are more than a paralyzed face. 
          You are beautiful. 

Your physical beauty is and always has been just one piece of the incredible masterpiece that your life is.

I don't think I will ever understand humanity and the way that our society calculates beauty. To categorize and quantify beauty based solely on physical appearance greatly limits the art of the creator. 

As I have watched people question the physical changes that ALS has brought upon my mom I can't help but pity their naivety. To limit themselves to the outer appearance of my mom's beauty is childish. Those who have come to put a label on her are missing out on the depths and layers of beauty that she so effortlessly exudes. 

For all of you in the midst of this horrible disease of ALS- I pray that you will always know that you are beautiful. ALS may steal a great deal from you but it can never steal the beauty that is so intricately woven within your soul. 

 

Wednesday, February 5, 2014

American Recall Center


If there is one thing I am passionate about it's finding a community to stand with- a group of like-minded individuals to support you. It is so easy after a tragic diagnosis or life trial to become isolated and slowly lose control. I am so thankful that as a family we have found an amazing support team lifting us up on this journey with ALS.

I know that as a caregiver the amount of information thrown at us can be overwhelming. It's important to stay organized and in constant communication with others so that no part of our loved ones care goes unattended. That is why when I was contacted by Dr. Mario Trucillo with The American Recall Center, I knew his passion to empower caregivers and patients alike, is something I wanted to share with you. Although the American Recall Center is not exclusive to ALS patients it is a great resource for all healthcare  information and support.

Here is an excerpt of what Dr. Mario Trucillo has to say about The American Recall Center:

        " Today, the amount of people taking prescription drugs is increasing, and the number has reached well into the millions. With recent breakthroughs there is an increase of medications available for conditions like ALS. While this creates optimism, it is also important to understand the possible side-effects of newly developed treatments. 

          Although medical professionals strive to provide one-on-one support to their patients, they have begun to be increasingly stressed by the amount of patients that they have added to their rotations and may not always have the time available to respond to every question in a timely manner. For this reason, it is essential for patients to become self-advocates and stay aware of current medical device and prescription medication safety alerts. This way, you will always know the steps to take in light of new information regarding the safety of your medicines and medical devices. 

         Fortunately, The American Recall Center is available to serve as a resource that can make identifying dangerous medicines and medical devices easier for patients. On this website, you can begin researching potential recalls before your appointment, and then you can continue to monitor your health services throughout your treatment plan and well-past your recovery. 

         Whether you are concerned about the possibility of a recall, or need to know what are the best types of food to eat or want to know about a prescribed drug you can be certain to find the information you need at your fingertips. Here, complicated medical terminology is broken down into plain language that makes sense to the average reader. This can help you to stay on top of the latest research findings regarding the medicine and medical devices you use every day so you can stay healthy. 

         One of the best features of this site is one that you can use without having to even lift a finger- the Patient Safety Alerts. This is a personal notification system that you can customize with your medical information so that alerts regarding medicine and medical device recalls are sent directly to your inbox. To use this feature, all you need to do is choose the medical device or medications you use and include an email address. Once your account is set up, you can be certain that an FDA update will never be missed so that you can always stay in charge of making your health the utmost priority."

Is there a resource you currently use in your healthcare management that you find to be helpful?. I would love to hear about it. Please share in the comments below!

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.