Tuesday, December 18, 2012

In Sickness and In Health

Photography c/o: Shannon Worley Photography
 
“I vow to help you love life,
to always hold you with tenderness and to have the patience that love demands,
to speak when words are needed and to share the silence when they are not
and to live within the warmth of your heart and always call it home.
I vow to fiercely love you in all your forms, now and forever.
I promise to never forget that this is a once in a lifetime love.”

The definition of love in a sacred and personal form was shown so greatly in my childhood home. I never questioned if or how I was loved and I never questioned the love between my parents. They have learned to dance in sync, to cherish one another and to fiercely love in all circumstances.

Photography c/o: Shannon Worley Photography
My parents have given the phrase- “In Sickness and In Health” new meaning. Routines have changed, date nights out are now date nights in. Communication so greatly exists between two IPhones and a secret language of hand movements and charades. Love is shown in simplistic ways like love notes left on mirrors and machines. Patience blossoms in each appointment scheduled and in each encounter with the doctors who have become like family.

As my mom and dad celebrate 30 years of marriage the commitment becomes more real, more intense and more patient. My brother and I have been incredibly blessed to have such an authentic and raw example of love to follow. A legacy of sacred vows to pass on to future generations… a commitment to love in the deepest and hardest of times… to cherish in the midst of sickness and in health… to fully live in spite of what the future may hold. A legacy… an incredible legacy.

Thursday, December 6, 2012

Transition

Photography c/o: Shannon Worley Photography
Our family has been going through a lot of transition these past two years. There have been many nights of wrestling and praying for answers- long days of silence and endless hours of tears. Life has an odd way of sneaking up on you- catching you in the least humble moments and the darkest crevices of your mind.

I adore that we are loved so greatly that we are given a choice. We are given free will to choose between sorrow and hope. That we can embrace a renewed strength or we can surround ourselves with sorrow.

This plan- this incredible plan for our lives never ceases to amaze me. The loving embrace of old friends, the consistent miracles that have been sprinkled into our midst are an overwhelming reminder that even in our doubt- even in each wrestle with God He's been there. Gently guiding us to the perfect place and providing peace in the finest hour.

Photography c/o Shannon Worley Photography
Craig and I have made some tough decisions lately- some are bound to sting and cause discomfort but we are walking confidently in the direction that we feel God is calling our family to. We have chosen forgiveness over bitterness. We have looked into the deep blue eyes of our baby and prayed for protection and wisdom.

We are getting ready to step into a new season and it feels incredibly refreshing to let go- let go of past dreams and embrace the new ones that are igniting our soul. It's the perfect start to send us soaring into the new year!

Photography c/o Shannon Worley Photography

Thursday, November 29, 2012

Year Two

My Sweet Baby Boy

Tomorrow marks the 2nd anniversary of mom's diagnosis with ALS.
What a blessing it's been to have another year to spend together as a family.

I know that we all grieve differently and each one of us has dealt with the highs and lows this year.
I am so grateful that by the grace of God I have learned to see the positive in this crazy nightmare.
I feel like I have finally stepped out of the "fog".
I am no longer angry & frustrated... and that in and of itself is reason to celebrate! ;)

Physically I have been pushing through the motions...even finding joy,
but if I am honest I don't feel like I've been fully present until recently.
I tried so hard to hold on to the past that I regretfully missed a lot of the small intimate details.
It's ok... there is a time for everything and I am so grateful for all that I've learned about myself and my family.

We have such a strong faith that there will be many more anniversaries to celebrate and that my friends is all the more reason to really start living!

Here is a look back at the major events from this year:

Twinkling Lights: Mom's dream of dancing with my brother at his wedding came true.

Panic: learning to communicate again.


MDA- Show of Strength:  Mom's commercial for the national broadcast of the MDA telethon.

ALS Walk:  Our first walk as a family fundraising for ALS

Wednesday, November 14, 2012

Goodbye 28... Hello 29!

Writing is a weird venture. It's cyclical. I find that there are times when the words spill out overflowing from the depths of my soul-bubbling over with such fierce that I can hardly contain them, and then there are moments when the words are so dry-my soul begins to crack and longs for the cleansing overflow.

I may be standing in a desert right now. Thankfully, even when the words are few my heart is full.



I turned 29 on November 1st. I've been reflecting on my life- the incredible blessings bestowed upon me and my family. I've made more lists than I can count for this coming year (am I the only one with a 30 before 30 bucket list? :) ha!) and I am determined to fill 29 with more grace, intention, and purpose. Less focus on myself and more focus on serving others. Transition is good for the soul and a deep look into one's life is necessary to create a legacy. I long to touch each life I encounter and leave each day with a lasting memory. So, goodbye 28- I learned a lot from you... and hello 29- may you propel me into greatness and fulfilled dreams.

Monday, October 22, 2012

The Walk



It was a beautiful Saturday morning, the air was crisp and the sky was clear. We arrived at the stadium with a sense of reverence and respect for all of those suffering from this horrendous disease. We joined in the excitement of fellow supporters and celebrated blessings and life together. As we sloshed through wet grass and red grainy dirt we made our way to the family tent. My dad stood proudly next to my mom sitting on her scooter. She smiled and the unspoken “thank you” beamed from her eyes. Shirts were passed out, breakfast was devoured and coffee carefully sipped on. As family and friends trickled in- the conversations and reunions began to resonate deep within my soul. So much love and support overflowed from that tiny tent we were gathered under. We all rallied around mom as she began to lead us on the walk, each member taking their turn walking beside her, encouraging her and showering her with love. Like the true champion she is- she stood up from her scooter and graciously walked the last ¼ mile of the walk. As family and friends held her steady she walked across that finish line with a smile that beamed across the field. Emotions rang loud and fierce. With no detail untouched mom sat under the tent and “spoke” words of gratitude to each supporter. Even in the midst of such a bittersweet day, my mom managed to touch each life that came to support her.




For all those who walked, gave money, sent prayers… thank you. Thank you from the depths of my soul for not only loving on her but loving on the rest of us as well. Each one of you holds an incredibly special place in our hearts. Each day we are making memories… thank you for being a part of our story.









These pictures are just a glimpse of our day. My sister in law- MaryRose captured these beautifully. (for those who attended... an email will be sent with a link to the pictures- there are over 200!)

Tuesday, September 25, 2012

Be Encouraged...

This song has been on repeat the last couple of days... 



When the answers are filled with silence...
When victory seems so far away...
When the lullaby of peace is all that sends you to sleep...

In the midst of joy and heartache there is always a reason to sing...
Be encouraged today with sweet love and grace!

Thursday, September 6, 2012

Walk to Defeat ALS!



Raising awareness and celebrating the blessings we have been given are major passions for me right now! We are one family amongst millions and that thought can be daunting when you look at the grand scheme of things... how can just our little family make a difference? How can we raise awareness for ALS and show grace and love to the thousands of people looking for hope?

Maybe we cant reach everyone and maybe ALS awareness has a long way to go but if we reach just one... if we change the lives of just one family then we've succeeded. If we can offer the answer for hope and if we can be the hands and feet of love than we've accomplished something great!

This year we have made a family pledge to join the ALS association in the Walk to Defeat ALS. We will be walking along the Scottsdale Stadium supporting my mom, Linda, and standing together as a family in love and hope for a cure. We will be the feet for those who can't walk and the voices for those who can't speak. We will unite with thousands of other people who share a common bond and a common struggle.

The walk will be held October 20, 2012 at 9:00am. If you would like to join our team and walk with us please contact us! We have a Team page located here. You can sign up directly on the page or send us an email, tweet or leave us a comment.

If you wish to support us with our fundraising efforts please visit my personal walk page.

We are so excited to make a difference in the lives of those suffering with ALS! Please share this post and spread the word!

Friday, August 31, 2012

MDA-Show of Strength & PSA


Make-up & Wardrobe Prep- May 2012
 I love that through pain, beauty shines through the strongest. Since mom's ALS diagnosis there have been several opportunities for her to raise awareness and shine light into a dark world. In May, mom was asked to participate in an incredible opportunity. The MDA has filmed several Public Service Announcements for this years telethon- MDA Show of Strength- and she is 1 of 5 patients particpating in the PSA. This year marks a new beginning for the MDA as they have changed the entire format for their telethon. This new format showcases incredible entertainment and support from several celebrities. It will be a three hour prime time entertainment special. I firmly believe that this new format will engage an incredible audience and bring so much awareness to the world of Muscular Dystrophy and ALS. Make sure you tune in this weekend Sunday, Sept. 2nd and show your support. For those who are local- you can watch the special on Channel 3 at 7pm.

Click Here to see a clip of the PSA that mom was filmed for. She looks absolutely radiant and I am so incredibly proud of her! Her commercial will air at 8:29pm. (AZ time)


Wednesday, August 1, 2012

DPS Surgery- Video & Update


I woke up Monday morning, July 16th, with an anxious heart, it was early, Craig was out of town and I knew that the day was going to be filled with a lot of emotions. As I prepared myself to stand beside my family and support each member in their own unique way I prayed for strength and faith that I would trust I wasn’t alone. I was the first to arrive and as I opened the door to my mom’s hospital room all I could do was smile. Just being able to walk into her room and see her sitting there so calm and full of peace was a blessing. Slowly my dad and aunt trickled in. We filled her room with small talk, laughter and prayer. My brother and his wife quickly followed behind and within minutes they came to move mom into pre-op. We stayed with her as long as we could. We spoke with the doctors and found reassurance in their confidence. I have to be honest, there is something so sacred, beautiful and completely frightening about that last hug before they wheel your loved one away. It becomes a moment that etches itself into your soul. It creates a memory that never gets lost in the shuffle.  

We made our way into a dark, cluttered waiting room. It was cold and uninviting. We collectively chose to leave and hang out in the main lobby of the hospital, next to a Starbucks, of course.  As the hours slowly passed by we entertained ourselves with the drama of nearby on-lookers, food and spotty Wi-Fi. After 3 hours we were greeted with enthusiasm from mom’s surgeon. He spoke of how smooth everything went and how great mom was doing. He eagerly showed us a video he captured on his phone of mom’s diaphragm before and after the pacer was placed. His attention to detail and nurturing personality was welcomed with open arms. He truly cared about mom’s well-being and the rest of us waiting to see her. As we stood there crowded around the surgeon and his phone they wheeled mom past us. She was shaking and completely out of it but it felt so great to see her even if for just that split second. We were walked down to the cardiac/lung ICU waiting room where we were once again greeted with on-lookers. Everyone gathered for the same purpose… everyone waiting on a loved one. We waited for what felt like an eternity to go back and see mom. The relief and peace that filled each one of us as we laid eyes on her is not something that is easily explained. We all sat in silence as she faded in and out. As she found strength she greeted us and “talked” as much as she could. At times, using her phone and speak-it app took more strength than it was worth.

In the early evening we were instructed on how to use the Diaphragm Pacer. It was a crash course that I wish had been conducted differently. The woman giving us our lesson was rude, abrasive and in no way gentle with my mom. As she pulled on the freshly placed wires and ripped the surgical gauze and tape from mom’s body it was all we could do to stand there and listen. It became overwhelming and sent my dad over the edge. There is a lot more to this new adventure we are embarking on than we were prepared for. In the midst of our crash course the surgeon came in and told us that mom had a pneumothorax (collection of air around the lungs) and would need a chest tube. Although this is a known complication of this surgery it was hard to hear. It filled the room with a black cloud and sent our anxiety into overdrive. Knowing she was in great hands made the situation bearable but in no way was it easy. We were scared and the tears began to flow intensely. As dad stepped away to clear his head, the rest of us just stood there in silence. We stayed as close as possible, hugged and kissed her as we silently prayed and watched them whisk her out of the room. As she left, the room felt cold and uninviting.  Feeling overwhelmed and tired yet knowing we needed to keep some strength we made our way to the hospital cafĂ© and ate dinner as we waited.




The next few days were intense. The nursing staff was incompetent, denied mom essentials like a cup of water, pain medication and respiratory therapy. It was clear they knew nothing about ALS and took no time to educate themselves. It was stressful, infuriating and heartbreaking. But, in the end mom made it through her stay with incredible grace. She was released Thursday afternoon (July 19th) and has been recovering at home. She is still in a tremendous amount of pain but she is getting stronger every day. She started on a  light schedule with the pacer, using it three times a day for 30 minutes at a time and now is building up to use it throughout the night.

We strongly believe that this was a great decision for her and for our family. We have faith that this pacer will help mom and give her a greater quality of life.

Thank you for all of your support, tweets, emails, comments, food and prayers. It is so great to know that we are surrounded by such a loving community. Please continue to pray that her strength will increase and that the pain will subside.

***If you are interested... below is the video of her diaphragm resting/working on its own and how it works with the pacer. You will notice that it barely moves on its own- Once the electric current is sent through the wires you will see the diaphragm contract and fan out. It is an incredible difference and really shows how little her diaphragm works on its own. You will begin to see the diaphragm contract around the 45 second mark and 1:10 mark of the video. Its incredible to see how far technology and science have come.***


Saturday, July 14, 2012

Diaphragm Pacer System (DPS) Update

Coffee Date- July 2012 

Tomorrow we will embark on another journey. Mom will be admitted to St. Joe's to prepare for her DPS surgery. We have been in constant contact with the surgeons this week and feel confident that she is in great hands. As of now, (24 hrs before her admittance) we still have little information as to the details of the lung prep before the surgery and the surgery itself. It's been a bit of a nightmare trying to communicate with the doctor's staff. I will be updating throughout the weekend as we get mom settled into her hospital room and obtain more information. I know this post is vague and confusing. Welcome to our world!

Image credit: Image Credit

I've been meditating on this verse for the past week and when I found this print from  the NaptimeDiaries I just knew I had to share. There is something so peaceful about dwelling in the presence of God. Just to know that He is a shelter in the midst of every storm we walk through protecting us as we place our hope and trust in Him. No matter the circumstance, no matter the outcome we have the promise of God to comfort us and provide everything we need. There is such beautiful peace and hope wrapped up in the presence of God and his promises that he makes to us. Resting in Him is all the assurance we need.

Wednesday, June 27, 2012

Broken Moments


I cant help but marvel in the creation that surrounds me everyday. From the flowers that line the sidewalk, to the trees that stand so firm and tall, to the people that walk beside me...every living creature  part of such a grand design. A design so full of delicate details that it stands to beckon you. It fills you with an intense desire to know more. To seek after something so much greater than yourself.

I wish I could sit here and apologize for my intensity. I want for just a moment to not feel people's souls. To look at someone and just see a shell but Im not capable of that. I was created to see into the depths of those around me. To look into a broken heart, into tear drenched eyes and to love them in spite of their weaknesses. You see, to be so emotionally connected to those around me I become vulnerable. I endure the pain alongside them and often at my own expense. But, the truth is I refuse to apologize. In the broken moments of the day I am reminded that each of us are walking through a trial- and though they may have different meanings to all of us- they are still important.

If you know me- you know that I have crazy uncontrolled curls. I do what I can to tame them and often I spend hours under a blow-dryer just begging for some "normalcy". Call it the nature of the beast- some days I just don't have the patience for it. I have learned to embrace the gifts God has given me and for the most part I stand tall knowing where my worth comes from. But, reality is- sometimes the flesh takes over. People are mean and insecurity creeps into my soul. I sat yesterday and listened to the girls around me blatantly poke fun at my hair and compare me to their dog. Everything in me wanted to lash out and retaliate but, I couldn't do it. Instead, I looked at each one and prayed that they would see my compassion and grace. They are broken and reaching for something and my actions speak so much louder than any words possibly could. The pain and hurt is overwhelming when you are attacked for something that is so innately "you".

As I watch my mom struggle to find normalcy with her new disability I cant help but want to follow her example of pure grace. For the most part people are so kind and patient- but, along with the good comes the bad. Sometimes people treat her so disrespectfully. There is no patience and rather than trying to understand they yell. An ignorant response to her not being able to speak. She always smiles, she always maintains her composure and always stands with such class. I know the pain I felt yesterday must be nothing compared to what she is going through. I hope to always remember that.

I can only pray that as we go through this trial I will be shaped and molded into the creation that I was meant to be. That I will reflect light and shine with peace in such a dark and cold world.  



Friday, June 22, 2012

Diaphragm Pacing System


**UPDATE** We just received an approval letter from the insurance company! We couldn't be more grateful for all who have advocated on  behalf of my mom. We are waiting to hear from the surgeon to get things scheduled. As always, I will post when I have the info. Much love, Tara.
 

I’ve been meaning to write this post for 2 months now… I can’t believe how much time I have let pass. By now, we have had plenty of time to process the information we received regarding the Diaphragm Pacing System. (DPS) I found this fantastic article that explains the dynamics of the system. It’s an interesting read especially if you aren’t familiar with it. 

image credit

In the beginning of May, mom went into the clinic for a day filled with testing. I was not able to attend the appointment with her but my aunt so graciously offered to go with her for support. Although, the testing was extensive and exhausting we were so grateful to find out that she is the PERFECT candidate for this procedure. This system is still so new and there is very little research and information regarding the future effects of the procedure. Regardless of the outcome we believe that the benefits outweigh the risks. To know that mom could be on the cutting edge of science, to pave a way for future patients to have a greater quality of life, is an incredible opportunity.

So, where do we go from here? Mom’s entire case history has been sent to the insurance company for approval. Her doctor personally met with the man responsible for making the decision. If the insurance company denies her case the next step is to plead her case to the hospital board. This procedure has only been performed twice before in the state of Arizona. It is still so raw that consent forms, legalities and the like are still being written.

So, how can you help? Please pray with us that a decision would be made quickly. Pray for wisdom and peace for all parties involved. Believe with us that this procedure will give mom greater rest and strength… that a ventilator would be prolonged even longer and that she would be able to handle the procedure with no complications.

We believe that even in this crazy trial that God has a plan and a purpose for my mom. He has placed her exactly where she needs to be and He is providing more than we could have ever imagined. He is helping us walk through this with grace. We can’t deny that even now, He is using her to bring love and grace to those around her. 


Wednesday, May 30, 2012

May Update

Hello friends! I have so much to update you on! May has been a whirlwind of a month. We have had several celebrations and appointments keeping us all very busy. Mom recently went for a day of testing to see if she qualifies for the Diaphragm Pacing System. This is a fascinating new trial and the day was long, full of extensive education and research methods. I'll write a post outlining the entire day, results, and what's next for her journey. It's a lot to take in and sort through so I want to make sure I have the time to gather all of the info so I can explain it correctly. For now- enjoy the picture summary below of the past month!

  
College Graduation 2012
Memorial Day- Mom swimming with Ryan
Ryan's first baseball game!
Mother's Day 2012

Thursday, May 3, 2012

Progress Report


Waiting in the Doctor's Office

If there was one theme that covered this month’s progression appointment it would be stress. Just coordinating the day, schedules and prepping emotions leaves you frazzled and at times clouds your judgment. It seems lately that our family has just been attacked from all sides. There has been a great deal of change with my dad’s job, huge strains on personal relationships and just an enormous amount of frustration.  When you combine it all with the unknowns of ALS it becomes a volcano just waiting to erupt.

I am so grateful for family who sticks with you and offers support in time of need. My sister in law Shannon kept Ryan with her all day for a play date. Knowing Ryan was in such good hands gave me the peace I needed and the strength to focus completely on my mom. Dad is overwhelmed and didn’t attend the appointment. Quite honestly, I completely understand. I think hearing the summary from me and the extra time it allows to process everything helps make it seem bearable. The bond that we have all formed is incredible and although it’s a great burden to carry, to relay the information, and teach him about medical terminology and research it’s one I take with great honor.

Unlike the previous progression appointment mom went in with a few concerns. They all seemed to range in severity but I think she found great satisfaction in having herself heard. She wrote of issues we have experienced with the home care company APRIA. This is nothing new as they have been a nightmare to work with from the beginning. Unfortunately, all of mom’s supplemental feeding supplies as well as Bi Pap supplies come to us from here. Thankfully, we are now in the process of switching over to a new home care company. The hope is that she will receive better customer service and care.

In addition to housekeeping concerns she was very anxious about the “paralysis” in her face. As the doctor examined her it was clear that he was concerned at the severity of it. After asking several questions regarding time frame he told us with great care that he was concerned enough at the progress that additional testing would be required. Much to our surprise we were told that it is extremely uncommon for an ALS patient to have asymmetrical “paralysis” in the face and especially at this point in her ALS journey. He told us that it is most common to see symmetrical paralysis… that by looking at the person you would never know unless you were specifically looking for signs of weakness. Though statistics tell us that possibly 1% of ALS patients will experience the type of “paralysis” mom has its rare and her doctor has never really seen her type of case before. So- all that to say that he has ordered an MRI of the brain to rule out a brain tumor. It’s possible that what mom is experiencing is a completely unrelated issue.

We went in thinking this was just another piece of the ALS puzzle. What we were told was unexpected and came as a bit of a shock. But in all reality- we were more numb than anything. After all that we have dealt with thus far nothing seems to phase us like it used to. I can’t sit here and tell you that my mind wasn’t instantly flooded with thoughts of hope that maybe mom really doesn’t have ALS. For that split second I let myself begin to hope for something else. And yet, in just a split second I pushed that thought so far out of my mind. I can’t allow myself to go there. The realism in my personality refuses to allow myself to think that this has just been one bad nightmare.

The worst part of summarizing this appointment to the rest of my family has been that each one asked exactly what I thought. To hear my dad say: “So, she might not have ALS?” To hear my brother say: “you never know Tara” and to then have to tell them no. To explain that yes, mom does have ALS and this doesn’t change things… to watch those tears fall down my dad’s face… it’s the most heart-wrenching experience. I am so incredibly grateful that God has given me strength and grace to stand and hold us all together. That I can gracefully break the news, explain the situation, offer hope, be the physical strength for each one of them. I can’t explain the strength and peace that washes over me in each of these situations other than to say that it’s not me doing it. That strength completely comes from God and I’m so grateful that I can be the vessel he is choosing to work in to send peace and hope to my family. I cry and I feel pain, don’t get me wrong… but to have the strength to cry later- to feel the pain as I drive myself home is a blessing to the rest of them.

Mom’s stats have been hovering around the same as her last appt. Her breathing levels dipped from 51% to 43%. We are on the waiting list for the Diaphragm pacing clinic… at that appointment testing will be conducted to see if she is a candidate for the diaphragm pacer. She gained 2lbs- and the strength in her arms and legs has stayed steady.

Thank you all for continuing on this journey with us. As always, thank you for the prayers, cards, texts and support!

Wednesday, May 2, 2012

Panic


It was an average day at work. I had spent the morning laughing with co-workers trying to stay motivated enough to make it through the last half of the day when I noticed my phone was vibrating. I looked down and in a split second I panicked. As I answered the phone I could hear my mom breathing rapidly and with the raspy sound of her voice I heard my name.  As I desperately tried to figure out what was wrong I was overtaken with the most intense sense of panic. The rush of adrenaline that seeped into every ounce of my being was overwhelming. All I knew to do was to run…literally run. As I raced to the stairs on the opposite end of the floor all I could do was pray. Pray that whatever it was- she would have the strength in her voice to communicate it. I stood outside longing for the thick hot air to stop suffocating me. With each moment of silence the panic became greater and as she struggled on the other end to speak to me I could feel her frustration. Knowing that Ryan was with her and she was alone, I did the only thing I knew to do… I told her I was coming home. I drove with intensity in an effort to hold it together and be strong for whatever situation I was getting ready to walk in to. As I rushed in the house I saw her standing in the kitchen, my dad was holding Ryan and standing beside her. My dad instantly said: “it’s ok, she’s ok. Ryan is sick”.  An enormous amount of peace and relief came rushing over me and then it happened… the floodgates to my emotions opened and I lost it.  As I stood frozen in their living room I realized that this is my new reality. That nothing is simple anymore. That a phone call from my mom means something is wrong… that I will never experience the beauty of a solid conversation with her again. Realizing the effect of this situation my mom began to cry. She just looked at me and all I could say was: “I was so scared mom, I was so scared.” My dad trying to make things better continued to say: “it’s ok Tara”. I couldn’t accept it. It’s not ok… and I made that clear. This situation- this new normal- this new life- the panic and fear I was feeling isn’t ok. I needed to stand there and cry and voice it. Honestly, it sucks.

Sometimes, I think these situations need to happen. It’s healthy to recognize that life is hard and it’s ok to have those days. I don’t dwell on them and for the most part I am adjusting to this new life we are all living.  At the same time, I can’t help but mourn what we are losing. Communication is such an art and all too often I think it’s taken for granted. I miss her voice. I miss the deep laughter that would consume us… sometimes so much that it would irritate my dad. He used to tell us we needed to knock it off before one of us got sick and then we would just laugh harder. We are truly blessed to still have moments together as a family. As difficult as it was to be on the receiving end of that phone call- I am forever grateful. With each situation of panic and fear we learn to love deeper and to hold each other stronger.