Friday, December 2, 2011

Reflection: One Year of ALS

It has been one year. One year of triumph, blessings, heartache & gratitude. It's been a year of struggle. To say that is has been without pain is an understatement. The greatest thing about feeling so many raw emotions is that is gives you an opportunity to experience peace. A peace that is so enveloping it grips you in the darkest moments. It throws you into a whirlwind of gratitude. To know that in absolute despair there is hope. There is a presence holding you- catching every tear that falls- embracing you and gently guiding you. A reminder that this life is worth fighting for. That something so much greater is waiting at the end of this race.


I am a firm believer that there is a reason for everything. That no detail in our lives is a mistake. I feel nothing but joy knowing that Ryan is a gift. That he was given to us at exactly the right time for a specific purpose. Mom is progressing slowly and because of that she is able to know and love on her grandson. There is an incredible bond between these two.

Ryan- 12/16/10
Just a short 2 weeks after mom's diagnosis Ryan was born. Although early and unexpected, his arrival was just the healing we all needed. There is so much beauty in new life. Ryan is an absolute miracle and such a great reminder of the incredible love of God.

Mom with Ryan in the NICU
There have been several other blessings given to us in addition to Ryan. In January, Mom and Dad were gifted a "honeymoon" in Hawaii. They were sent to paradise to enjoy a vacation of a lifetime. Spirits were renewed and love and faith bonded them together once again. That trip gave new meaning to fighting for your life. 

Mom in Hawaii 1/21/11
In April, Brandon & MaryRose were engaged. The celebration of love and family has been in full force. Mom has been able to be involved in so many aspects of the wedding planning... memories I know she will always cherish! 


We've celebrated many holidays and family firsts. We've grown so much closer as a family unit-if that was even possible. 

Easter- 2011
And- to top this first year with ALS- we all joined together to experience Paradise with another trip to Hawaii. Memories and moments of love were engraved in each and everyone of us. 


ALS is a disease known for no time. When told your life expectancy after diagnosis is 3-5 years it can easily weigh you down to know that one year has passed you by. But- we refuse to let this milestone bury us. We stand in complete gratitude and awe that we were given such an amazing year! A year of life- hope, love and miracles. 


None of us are guaranteed tomorrow. This life is not our own. Thankfully- there is complete healing- peace and hope after this life. There is an eternity of grace and passion waiting for us. A set of arms ready to welcome us to a place of complete glory. 


We rejoice in this trial- although, so very difficult- because we know there is something greater! One year down is not defeat. One year down is a triumph and a blessing!! 

Thursday, November 17, 2011

A Note of Thanks & an Update...

The outpouring of love and support we have received since mom fell is absolutely amazing! It's as though God knew we just didn't have the strength anymore to conquer this without a community of people lifting us up. Thank you so much for your encouraging emails, comments, tweets and prayers. We have been loved on by strangers and friends alike. This experience has really shown me the power of an encouraging word. I've seen what it really means to be "family". The selfless acts of providing a meal, making phone calls and sending letters has been a true representation of love. 

I think it's easy for care-givers to be forgotten and trampled on. I see the way my dad cares for my mom and the rest of us- without giving it any thought. He has seamlessly become the glue that is holding us all together. He is a rock and I am so grateful for his love and strength. For those of you who have been holding him up in prayer and calling to check in on him- thank you! Thank you for recognizing that this isn't easy for him and that he is hurting as well. 

It has been an absolute struggle to obtain the results of mom's testing last week. Her primary care doctor is amazing but his staff lacks in care and competency. We made several phone calls and after 4 days we finally received the results. Her x-ray showed spurring and a possible tear in her rotator cuff. She has been referred to an orthopedic but is reluctant to schedule an appointment at this time. I understand her hesitation. Another specialist, another surgery... and for what? It's a lot to take in and it offers a lot of unanswered questions. She had some additional labs done that came back with questionable results-- she will re-test in a couple of weeks to see just how accurate these labs were. 

She is still in a significant amount of pain. It's hard to watch her deal with it and not be able to help. She is so strong though- and she faces everyday with vigor and an intense sense of gratitude.

Thank you for blessing us with your prayers!

Friday, November 11, 2011

The day she fell...

I've hesitated in writing this post. I've written and deleted. I've cried- I've laid awake-numb, just waiting for the alarm to sound. It's a fine line I'm treading. On one hand- I selfishly need this blog for my emotional sanity. On the other hand- I write to preserve the memories. Good or bad, tragic or stoic, these fleeting moments are heartfelt, raw and honest. In this whirlwind of triumphs and defeat I am striving to hold on to something tangible and pure. 

I realize that beyond the uncomfortableness of being so exposed there is a greater purpose. I know that if I don't document every detail and struggle than this blog is worthless. So the details- the really hard to digest moments of what ALS brings will be shared... because I can't do this alone. We are designed to be a people of community- of support and love. So with that being said... here is where we have been the past couple of days... 

It was early Wednesday morning (Nov.9,2011)- approximately 4:00am. The house was quiet and still- full of warmth. Simply, a retreat from the chill bitter air outside. As the heat radiated through the walls, mom found herself too warm and felt it best to turn off the heater. As she carefully crawled out of bed to make her way down the hall- she fell. In a split second, she found herself laying on the ground in the doorway of her bedroom. Dogs instantly at her side. Scared, dad jumped out of bed and ran to her side. With no explanation other than feeling like she had blacked out, she fell. In the midst of the fall she injured her shoulder and arm. At this time, we don't know the extent of her injuries other than she is in a tremendous amount of pain.

To say that a black cloud of emotions have been hovering over us these past couple of days-is an understatement. In the midst of shock, fear and pain we collectively have been quiet and numb. Until this point we were adjusting fine... we have been on a high knowing that mom has been stable and even showing subtle signs of increased energy. Though this fall could be completely unrelated to ALS we have to remain cautious. Falling is a sign of progression. Falling is an awful reminder that this beast ALS still exists in our lives. Falling regardless of the reason means that weakness is creeping in. This monster is slowly stealing our future. 

Each incident brings our family that much closer. Through the distance of our every day lives we are bonded so intricately with secret emotions and fears. Though each of us acts as a caregiver in separate ways we understand the heartache we all experience. 


As I bathed and dressed mom Wednesday afternoon I fought back tears for her. I was once told by a friend that the heartache and pain, the anger and fear, I feel is no where close to what she is experiencing. With that perspective, I tread through these moments with an intense adrenaline- a sword in hand ready to fight and protect her the best I can.   


We have been covering her in prayer and supporting her in our own unique ways. She has been weak, in pain and in bed since the fall. Please remember her in your prayers today. Send her a note of encouragement and love. 


As always, I will update as soon as I have any info.

With love,

Tuesday, November 1, 2011

Progress Report


In complete contrast from the last progression appointment, the car was filled with laughter, worship music and a mild amusement of the morning activities. As dad drove the exact same path we’ve driven so many times before- we concentrated on light conversation and excitement for our upcoming vacation in paradise. The distraction of leaving this all behind for a week was enough to lift the burden of what this appointment was really all about. 

Mom outside of St. Joe's after her appointment
 As we made our way through the elevators and down the sterile gray hallway the jokes continued and the laughter became stronger. The doors to the clinic flew open with grace and we said our blessings as we passed by other “broken” people. We had no time to wait as mom was called back quickly. Each appointment is so time-intensive that the no wait time came with very open arms. We were greeted like family as each specialist flew in and out. We were encouraged, loved on and patiently listened to. We shared tears, joy and fear. We gave thanks, hugs and smiles and received them back in abundance. 

Ryan with Nana as she waits for her 2nd Peg Tube Surgery
 Although, each appointment is a reminder of this dreaded valley we are walking through we stayed encouraged. Mom’s tests were all stable and in one area she has even improved.  We will never take for granted the small things. The little moments of victory and miracles we experience. We are blessed even in the darkness… there is a small flicker of light- a fire that can’t be extinguished.

Here is the breakdown:  (Appointment was on October 17, 2011)

·        Lung Capacity held steady at 38%-40%
·        Hand Strength measured at 40lbs on both sides! This is incredible news! (Last progression appointment stats were a maximum of: 18lbs on the left side and 20lbs on the right)
·        Peg Tube has completely healed and looked great. (Since this appointment mom had an additional surgery to have the peg tube replaced with a Mickey. It sits flesh against her skin and is no longer a burden to hide and take care of)
·        Once again there was a significant amount of weight loss- mom was down a total of 14lbs. (this was taken very hard and instantly brought tears to her eyes. She knows the importance of maintaining her weight and yet it’s so hard to control. She feels beautiful and yet craves that weight back… it’s a hard line to walk)
·        Neck and upper back muscles have continued to weaken. This is a daily struggle. Her neck often feels sore, tired and weak. She is using a neck brace at home that offers stability.
·        At this appointment, paper work was signed to begin the clinical trial involving the Peg Tube. On Nov. 8th she will be begin her assessment and will be given her “formula”. This is a blind study so we will have no idea what formula she will be using. Her feedings will be closely regulated. This trial brings a variety of feelings… but, as a family we are grateful that mom is willing to participate as this should help encourage her to use the tube. She needs more nourishment than what she is currently receiving.

Overall, this appointment was easier to digest for all of us. We left feeling really encouraged and grateful for the minimal progression. Thank you from the depths of our souls for your continuous prayers and encouraging words for all of us. We feel them and we see God’s hand upon us.

We just came back from our vacation… pictures and post to follow soon! 

...sorry for the small font- I've tried to fix it multiple times with no luck!...

Thursday, October 13, 2011

The Super Hero Within




I’m feeling so overwhelmed. I am so blessed that for most of this journey I have maintained a positive outlook. I have my good and bad days like everyone but, truly believing that some sort of good will come out of this mess keeps me moving forward.

Mom is still doing so well…so unbelievably well. And, yet- the protector inside of me is in overdrive. I feel this burning desire to guard her and stand over her and plan out her every move. I feel like a secret super hero… as if what lies beneath my daily outfit is a carefully crafted silhouette of my body that so cleverly has an “S” embroidered on it. That should the moment arise I will find myself flying out of a “phone booth” to catch her.

After so many years of being indoctrinated in “dying to yourself” and “laying it all down” you would think that the tight grip I hold wouldn’t even exist. But the truth is- it’s a constant battle. I am reminded daily that I need to let go- have faith- trust in something greater than the control I so desperately cling to. I wish I could say that dying to myself happens without a thought. But, I am a firm believer that as long as I live in this earthly body I will continue to struggle. I suppose the greatest thing is that my struggle is not in vein. That every day I make the choice to let go and surrender I gain more than I ever thought possible.

The mom I crave has been coming at me full force…offering help and resources in areas that just 2 short months ago were never even on our radar. Physically and emotionally she is there. I hate that I can’t process what is going on. I hate that I feel like I need to guard her because I am terrified that any ounce of help she offers will send her spiraling downward.

…I’m letting go. I am opening my hands and my heart to who she is and what we have right now. I refuse to cling on to a series of “what-if” and dance in the present. If the here and now brings joy and peace then whatever comes of the future will be worth it. The memories made and the sweet silent moments will forever be etched upon our hearts. The imprints that are being engraved deep in my soul will carry me when I feel despair.

I may always have a secret super hero spun within my bones… a side of me that rescues and saves and holds a deep love within my ever present hands… but, for now I will retire the sweetly knit attire until it truly deserves the spotlight. 

**please forgive me that there are no pictures with this post. Today, all I have to give are the words on my heart**

Wednesday, October 5, 2011

Celebrations



I haven’t written in awhile and the greatest thing about that fact is that there hasn’t really been anything to report. We are relishing in the “calm” of the storm. This month is packed full of appointments, adventures and celebrations! The weeks leading up to mom’s 3 month progression appointment always bring silence, an unspoken code of unity and a fierce desire to fight stronger. So, as you can imagine in preparation for her appointment on the 17th we are living our lives together to the max.    


 

We recently celebrated Ryan’s dedication at church. It was a special moment for Craig and I. There is something so intimate about making a promise and sharing it with friends and family. We were once again reminded of what a miracle Ryan is and how much he has blessed all of us. He has put a spark back into my parent’s life and has once again given my mom a way to use her talents.  If it wasn’t evident before- it certainly is now… my mom is the “baby-whisperer”. She was given such a gift with babies and children. 

 
Craig and Shannon celebrated their 25th birthday! It was a joy to bring both families together and show them just how much we love them!  We had a party at Joe’s Farm Grill over the weekend and then had a nice dinner with my parents. Birthdays have always been a huge deal in my family and even more so now. Another birthday celebrated means another year of life! How great that we can still cherish the meaning of life all together.   


In addition to all of our celebrating, we are taking in every ounce of fall. The weather has finally cooled off for a couple of days. Every season brings a new ounce of hope and a fresh beginning.  We are hoping to take Ryan out to the pumpkin patch in the next couple of weeks… I can’t wait.
 

At the end of this month- the entire family will be embarking on an island adventure. We have been planning and saving and preparing for months. We are looking forward to being rejuvenated. I know this vacation will bring so many emotions and I am so grateful that mom is still in a position to travel.

Please continue to pray for mom and the doctors/therapists responsible for her care. We are hoping for great news this month!

Until next time…  

Wednesday, September 21, 2011

Talents to Share


I am so passionate about finding a cure for ALS. There are many days that I sit in wonder and amazement at the discoveries that continue to surface. I find myself daydreaming about the conversations that take place in the lab. Do those scientists really understand the value of their work? Do they feel the same urgency that PALS (people of ALS) do? I know that working in a lab full of test tubes and petri dishes is not glamorous. The days can be long and frustrating with little recognition. But, on the other side of the spectrum- those labs offer hope. They offer a future and relief. They offer perspective and propel us to dig deeper and fight fiercer.

Each of us was created with talents to share and gifts to pour out on others. I am so thankful that science and research is God given gifts. That in the midst of a raging storm there is a calm serene setting waiting on the other side. I am grateful for people who are living out their calling. I am grateful for the sacrifice and devotion it takes to fight such a vicious battle.

My gratitude may never reach the ears of those longing for a cure… but, my prayer is that they would know peace. That they would marvel in the talents they were given and know beyond a doubt that their efforts to fight ALS with science are not done in vain.

I know our prayers for a cure are heard. I also know that in everything there is a season…that my timing and God’s timing are not always the same. But, I strongly believe that our prayers for a cure will be answered-someday- and my only hope is that my mom will live to see that day.

…These articles were published recently regarding research within the ALS community…




Wednesday, September 7, 2011

Joy and Respite


These last couple of weeks have been filled with joy, peace and an incredible respite from all things ALS. We have welcomed this season of change with open hands and open hearts. The drama and pain that filled each of us as we watched mom deal with the peg tube was challenging and sad. But, I believe there is "joy" that comes in the mourning. Joy that can't be explained. We are embracing it with everything we have. 

Mom has found a new energy! This past week we were graced with who we have always known and loved. We spent many days laughing, eating together (yes, mom has been eating- real food... it's amazing!) playing games, and shopping.... without the scooter! :)   

I believe that healing comes in all forms. I believe that God grabs a hold of you when you can no longer walk on your own and I believe that he gives you exactly what you need at exactly the right time. This week... we found healing. We still have a huge mountain to climb- but, the grace and rest he gave us this past week was healing in a whole different light. Emotionally we are resting. 

  
I recently discovered this song  by Jon Foreman and wanted to share. 

God is my shepherd
I wont be wanting 
I wont be wanting
He makes me rest 
In fields of green 
with quiet streams 
Even though I walk 
Through the valley 
of death and dying 
I will not fear 
'Cause you are with me 
You are with me 

Your shepherd Staff 
Comforts me 
You are my feast 
In the presence of enemy 
Surely goodness 
Follow me 
Follow me 
In the house of God, forever

Monday, August 22, 2011

Peg Tube Adventure


ALS is a crazy disease! From the moment of diagnosis your life is sent on an uncontrolled roller coaster ride. With that said, no simple surgery is ever simple. 

Wednesday night, in preparation for the Peg Tube, we as a family sat down and endured a heart wrenching discussion.We made end of life decisions, offered prayers of thankfulness, spoke of blessing others with organ donations, and found peace in the true meaning of family. We prepared ourselves for "what-if" scenarios and pleaded for grace. Wednesday night offered restless sleep for all. 

Thursday morning was quiet and calm. Mom was enveloped in peace. It was apparent that God heard our pleas. When we arrived for check-in we were greeted with a smile and a sterile waiting room. Mom was prepped quickly.

The anesthesiologist came in to greet us and with him he brought such a calm inviting spirit. He was gentle and eased every fear my mom was holding on to. He promised her that he would be by her side the entire time and most importantly that she would wake up! He administered her IV and within seconds my mom looked directly at him- eyes wide open and said "I like this" in the clearest voice I have heard in months! We all laughed... and looking back I wish I had been video-taping the scene. It felt so good to hear her voice! We said our goodbyes in the midst of tears and waited. 

Within 45 minutes we were greeted once again by both the surgeon and anesthesiologist. They gave a glowing report and said mom rocked the surgery! Interestingly, we were told that mom's stomach is in an odd location and was hard for the surgeon to find at first. Her stomach is located right underneath her belly button. This caused the tube to be placed a lot lower than expected and unfortunately offered more discomfort. 

We waited 2 hours and 45 minutes to see mom after the surgery. It felt like forever but she was worth the wait! 

Doesn't she look beautiful? This picture was taken as soon as we saw her. She is glowing!
Mom experienced a significant amount of pain after surgery. Because of this, she was kept for observation and not discharged until late Saturday afternoon. Thankfully, the doctors were able to manage the pain and she was able to get the rest she needed while in the hospital. 

We can't express enough our thankfulness for all of the prayers, flowers and cards. Knowing that there is a huge community of believers, friends and family coming together in love to support my mom and my family is incredible. We feel your love and some days that's exactly what gets us through this nightmare!

Now, we are on a new journey, a new start, a new normal. We have all accepted it and embraced it. We are moving forward and believing for great things!


Thursday, August 18, 2011

Surgery


Hi friends, 

Just wanted to pop in to let you know that my mom will be having her PEG tube put in today. Her surgery is scheduled for 12:00pm at St. Joe's Hospital. As with everything related to ALS- nothing is ever easy or uncomplicated. Please say a prayer for peace and guidance today. I will update as soon as I can. 
Much love,


Tuesday, August 2, 2011

Through The Looking Glass

My Beautiful Mom! 


It was a cold, wind piercing November morning. I remember bundling myself up in a soft gray Abercrombie Pea Coat and climbing into my little red car. I was off to spend the weekend with my grandma. We were going to celebrate my birthday! As I began to drive tears streamed down my face. This was the first birthday I was celebrating away from my family. It had been a rough first semester at the University and I craved the comfort only a mom could give.  As I arrived my grandma strolled out her front door with a suitcase in hand. I was perplexed yet oddly not that surprised. She proceeded to tell me that my cousin Josh had sent her a package. A package that was very large and waiting in Kansas City (3.5 hrs away) conveniently at the airport. I was told that she arranged for us to stay the night and that we better get going as this package wasn't going to just sit around all day. :)   I suppose at this point I should have known this was a ridiculous story. But, this was my grandma. My grandma would drive across town just to save a penny. So I bought it. I took her suitcase and neatly placed it in the trunk. I admired her spunk and off we went. After all, we were headed on an adventure. How could this be anything but fun? 

The drive was long, full of interesting conversation and strange music. As we pulled into the airport my grandma directed me towards the arrivals and asked for me to drop her off at the curb. She said she would only be a minute as she was positive the package would be just inside the door. I sat there waiting, amused at the oddness of who my grandma was. In a matter of seconds I saw the package. I will never forget the overwhelming sense of love that filled the air. The shock and ultimate gratitude that rushed over me. There outside the door was my mother- standing in all her beauty.

They pulled it off. The ultimate surprise. There the two of them stood beaming with pride that their plan actually worked. After several tears of joy and screams of excitement we made our way to a quaint hotel. As we unpacked the car beautiful, delicate snowflakes began to fall.

In my mom's true fashion we spent the weekend shopping, eating, crying, laughing and making the most incredible memories. 

...It's amazing the things you remember and hold on to... 

It's been 3 weeks now since my mom has found herself intensely  losing strength. 3 weeks since she has eaten a full meal. 3 weeks since she has felt "normal". (I use that term loosely.) 3 weeks ago my mom was hit full force with an evil that has only stolen her strength and her ability to eat. 

It feels as though things are starting to happen at a rapid pace. I still can't come to grips with the fact that she can't eat. She is taking in barely enough to survive the day.

My mom... the life of the group who always planned her days around the next great meal- the Starbucks and dessert stops while shopping... now has no desire to eat. I can't wrap my mind around what is happening.

She needs the PEG tube...

Tuesday, July 26, 2011

Progress Report

St. Joesph's Hospital and Medical Center
Every 3 months my mom is seen by her team of physicians and specialists to document her prognosis with ALS. So, as a family we made the trek downtown yesterday to hear our fate. ;) I joke... sort of... 

The drive started out rough as mom found herself really sick. The nausea came with full force and caused a whirlwind of pulling over. We assume just another side effect from a new medication- but, with ALS-making assumptions is never a good idea. As we walked into the lobby of the clinic I felt such an overwhelming sense of gratitude-a feeling of being so blessed. I looked around and saw the heartache etched on several faces. I couldn't help but stop and say a silent prayer for those surrounding us. 


We then found ourselves in a stuffy white room with a window facing a beautiful view of the city. Within seconds we were greeted by a gentle, and heartwarming physician. He spoke with such kind words and listened so intently to the few words my mom could speak. He read off her "boogie board" and smiled and laughed as they had a sweet conversation just between the two of them. He examined her- tested her strength and reflexes. He spoke of more clinical trials and offered explanations for even the smallest of concerns that we had. 


One by one we were greeted, educated and given hope with every specialist we saw. We made tough decisions but found ourselves feeling free and confident in the direction we have chosen to go with mom's care. There was a peace and sense of relief that filled the air. It was refreshing. 


Our lives are constantly changing. We are adapting to a new normal. We recognize that what we had is lost but we are gaining something greater. We are learning and receiving love in a new found way. It has enriched us. We are learning to live positive and grateful lives in the midst of this horrid nightmare.  Mom still has a lot of life to live and with the decisions we have made regarding the PEG tube and the wheelchair she will be given the freedom she needs to enjoy that life!


Here is the breakdown of her prognosis: 
  •  Lung capacity has stayed the same and ranges between 32%-38%
  • We finally got her Bi-Pap machine regulated and adjusted with new settings. :) This should be a huge improvement. She hasn't been able to use it based on the settings before. If we have had any complaints regarding her care thus far it would definitely be with Apria. Their staff holds little education and provides zero compassion.   
  • Her neck and shoulder muscles have weakened slightly. We have been aware of this for awhile so it didn't come as a shock. She is very cognizant of how she feels and she rests and uses pillows as needed. Bonus: new furniture! Dad bought her a beautiful brown leather recliner to offer her support. Any excuse for new furniture... :) 
  •  Her hips are weak but no weaker than last time. She showed some new weakness in her back and  left leg but it was slight and not a significant difference. We are aware of this and have taken measures to combat it. We are on the list for a companion wheelchair. This will offer support and give her rest when she is out and about. 
  • The most significant change from her last appointment is her weight. She has lost 12lbs in the last 3 months. Because it has been proven that a high caloric diet helps prolong life with those suffering from ALS this is a very significant amount of weight to lose. As a family we decided that it's time for the Peg tube. This will give her the proper amount of nutrition she needs to maintain her energy and keep her from becoming dehydrated. They have her orders written up and we should be able to schedule her appointment within the next few weeks. We are sad that this has now become a necessity but we are grateful for what it will do for my mom. This will take so much pressure off of her. She will be able to eat for pleasure without the stress of making sure she gets enough. This is also going to alleviate the awful choking spells she has when she eats and drinks. 
  • Lastly, because she will be having the Peg tube put in she will qualify for a new clinical trial. This trial is studying nutrition and the effects of high calorie moderated diets. If there is still availability left to participate she will. She is excited to do anything that might further research and bring treatments or a cure for ALS. She did ask about several other trials being conducted. However, the majority of these trials require that your lung capacity be 65% or greater so she is not eligible to participate. This was hard for her. 

We could feel your prayers yesterday and felt such relief that although, the visit is always hard, we did not receive any devastating or "new bad news".   Thank you for loving my mom enough to pray for her! 

You can find the report from her last visit here.
 





Wednesday, July 6, 2011

Fourth of July


We enjoyed a very low key 4th of July this year. We took Ryan swimming for the first time. He loved it! It was so fun to watch him splash in the water and laugh as we played. I think he is definitely ready to start baby swim lessons! 


This picture melts my heart. I love that Ryan is touching my mom's face. He is such a love! 



To all the men and women who sacrifice their lives to protect us- to guard our freedom- I am forever grateful! You're service doesn't go un-noticed! 

Thursday, June 23, 2011

Mission Field


In the midst of the joy and the struggle of everyday life it's so important to remember that our efforts are never in vain! I recently read this article Motherhood as a Mission Field and I wanted to pass it along to encourage all of you! Enjoy!

Monday, June 20, 2011

Exhaustion

I’m exhausted. It’s amazing how much stress can take a toll on your body. It seems that lately it’s all I can do to function throughout the day. Between working full time, being a mommy full time, a wife and a daughter, a caregiver, a sister, a matron of honor… I just can’t keep up. I feel pulled in so many directions and I hate that I can’t give 110% to every avenue of my life. I hate that I can’t be Superwomen. That I can’t maintain my house to the perfection that I desire, that most nights I can’t get a “home-cooked” meal on the table. I hate that by the time my husband walks in the door at night I’m half asleep already.

The guilt I feel is horrible. It’s as though it’s consuming me. I feel so guilty that I can’t do more for my mom or my family in general. I feel guilty that I get frustrated when I can’t understand the few words my mom is able to speak. I want so badly to hear her voice- to call her instead of text her. I want to be able to run errands and shop without incessantly worrying about how far she will have to walk or how I can manage the baby and her and maintain a positive vibe. I feel guilty that my patience is thin.

I know that I have so many blessings in my life. I know that in the grand scheme of things we are so lucky. We have been given time… we can still communicate- she still has the use of her arms and legs. She is still capable of loving on my baby. So why am I getting so frustrated? Why do I have such an enormous amount of guilt?

The greatest thing about all of this- is that I wouldn’t change a thing. I absolutely love to be out and spending time with my mom. I really do cherish every moment we have.

I found a great article on Preventing Burnout in Family Caregivers here. It’s a great reminder that in order to effectively care for someone else- you have to first take care of yourself.  

Thursday, June 16, 2011

It's been awhile...

Wow, I didn’t realize how long it’s been since my last post! Although, my life has not stopped and the tasks of everyday living are insurmountable- I’ve managed to be in a state of solitude. I have taken a much needed break from all things “ALS”.

In this media driven society “awareness” is both a blessing and a curse. The constant feed of ALS facts, tragedies and reminders can be extremely overwhelming for those of us who are actually living in an ALS nightmare.  I long so badly to fight and maintain a passionate spirit… to scream and yell and tell the whole world what this horrible disease does to families. But, some days the fight becomes too hard. The research and forums and constant reminders of what is to come are all too much to bear. I think I hit my breaking point at the end of May.

May was ALS awareness month. I realize that “awareness” months are created to- get the word out- and make those who have never heard of the disease aware of how tragic and horrible it is. It’s there to give a specific time and place to lobby for research and cures. It opens doors that may have otherwise not been there. They serve as reminders that we need to fight and not give up- that this disease deserves just as much attention as cancer and heart disease.

But after the fight- after the grueling days of listing facts and reasons why we need a cure- you can’t help but feel defeated. A break is so necessary! A time of peace and solitude has served as the only healing grace from the noise and static of living through this hell.

I am finally feeling refreshed. I am gaining my fighter spirit back. I am ready to tackle the world and share my compassion with others fighting this same fight.

Thank you for granting me this break and supporting me and my family. Thank you for the sweet “tweets” and emails.

….because I want to remember every detail of this new life… I will leave you with this picture!
                                                              Mom's way of sharing awareness: Love her spirit




Friday, May 13, 2011

A Note of Gratitude

I have had the most incredible amount of peace lately. I know this sounds so cliche- but I have felt your prayers. I don't know who you are...(maybe there are several of you) but thank you! The power of prayer and community  never ceases to amaze me. I really struggled with the thought of exposing my family and my life in such a raw way. I debated for weeks on the decision to start this blog. As hard as I tried to let go of that nagging feeling that this is what I needed to do I just couldn't get rid of it. I realize now that this blog offers so much more than awareness of ALS- it offers hope and healing! I know it's impossible for people to understand the severity of what we are going through. I know the intense pain I feel- the agony of heartbreak and anger is something most people will never have to experience. But, I also know that in every life there are trials and because of the passionate love and grace of Christ we can empathize, deeply love and support one another whether we understand the situation or not. For that- I am eternally grateful. The overwhelming sense of gratitude I feel for your unspoken prayers and secret love and support can never be expressed. So- to whoever you are- know that you have blessed me and my family. With the utmost gratitude,

Thursday, April 28, 2011

Dutch Bros. Coffee


 On Friday April, 29th Dutch Bros.Coffee will take a portion of their earnings and donate to the Arizona ALS chapter of the Muscular Dystrophy Association. This is a great opportunity to give to such a vital cause and enjoy a great cup of coffee!

Here are the current arizona locations:
Tempe, AZ- 1037 S. Rural Rd.
Tempe, AZ- 3213 S Mill Ave
Mesa, AZ- 1960 E McKellips Road
Phoenix, AZ- 4 W Camelback Rd.
Phoenix, AZ- 2961 E Bell Rd.
Scottsdale, AZ- 1422 N Scottsdale Rd.

Thank you for supporting and helping to fund research with  the Arizona ALS Association!!

Wednesday, April 27, 2011

Progress Report

On Monday my mom had her follow up appointment with her team of doctors and specialists. It seems so surreal that she has a "team" of doctors dedicated to her case. I absolutely think it is a miracle that we live so close to Barrow's Neurological Center... Barrows is ranked top ten nationally by U.S. News & World Report. What are the odds that we would be so close to such an amazing Institute? It's just another confirmation that God is so deeply intertwined in our lives!

On Appointment days I always feel nervous and unsettled. It's as though everything is hanging by a thread and I'm just waiting to see if life is going to be stitched back together or cut apart. It's been 3 months since her last big appointment... a lot can change in 3 months.

As with everything lately- the results of her appointment have been hard to digest. I can sense the fear and denial in both my mom and dad. It's as though prolonging the inevitable makes it all disappear. I so wish this was true. I wish I could find a way to escape. I've always been a realist. Although, I manage to stay positive to see the blessings and be gracious for what we have right now I can't escape the reality of what is going on. Endless sleepless nights and nightmares seem to be taking over my life.

After 3 hours and several doctors later my mom was given her prognosis.... 
  • Lung capacity has stayed the same at 32%. For now, we are grateful this hasn't decreased. Diminished lung capacity zaps her energy and makes things like eating very difficult.
  • Her breathing at night has become worse. She sleeps restlessly and often wakes to catch her breath. For this- the doctors have prescribed a Bi-Pap machine. The hope is that this will provide a better nights rest and  regulated breathing. If this helps- she will have better energy during the day!
  • Her neck muscles have weakened. This is significant because if controlled now- it can prolong weakness in her arms and hands. If the weakness continues it makes eating, swallowing and breathing an even greater distress. They have suggested a neck brace to offer support. (...a neck brace?! really? ugh, seems so trivial- and my poor mom is way too beautiful to be wearing a neck brace!) This of course will only be on an as needed basis for now... and for now- my mom has decided against it. Haha!
  • In addition to her neck- her hips have weakened. She was given instructions on how to get up if she were to fall. They also have suggested she use a cane to offer extra support. No one is ready for this. A cane? She is 50 years old and active and vibrant! There is no cane fashionable enough for her! :)
  • She was told that it is important to stay active and live her life. If she wants to go for a day of shopping they highly recommended she use a wheelchair. They feel so strongly about it that they have already taken her measurements. They believe the best thing she can do for herself is conserve her energy and use it wisely. Prioritize what she uses it on and walking across the mall is not a priority. ...my dad says we are too active as a family for her to have a manual wheelchair. If she needs a wheelchair then she deserves the best and it should be motorized. :) Unfortunately a motorized wheelchair is not standard- but we are going to try to obtain one!
  • She has lost 6 lbs. The process of chewing her food is very tiring and the medication she is on has drastically changed her taste buds. Because losing weight depletes energy it is crucial that she does everything she can to maintain her weight. They have suggested a high caloric diet filled with lots of butter, cream and milkshakes! She was told that she needs to start considering a Peg tube (feeding tube). It is recommended that she gets one before eating becomes a huge issue and while she can still take care of it. They say that at first you can choose to use it or not. It would mostly be there as a precautionary measure and to help sustain her energy when eating becomes too difficult.
  • There are several clinical trials being conducted right now that she qualifies to participate in. Her doctor highly recommended that she participate in the Peg tube trial that uses a high caloric diet. She is considering it... but honestly I'm not sure that any of us- especially my dad is ready for that. Although it could prove to be helpful- in a way it seems like giving in. We desperately need more time
Overall, I think she is handling this with such grace! She is fighting and staying strong. :) She is so positive and keeping her spirits up has done wonders!