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!

Monday, April 25, 2011

Easter Memories

Holidays are so important to me and the significance of Easter makes the holiday so much more special! Making Memories and celebrating family never gets old! This year I hosted my first dinner. It was small but turned out perfect. I had lots of help from my dad and my mom spent the day loving on Ryan. I know that we all will cherish this memory. I can't wait for future easter egg hunts with Ryan and his sweet cousins! We definitely missed sharing the day with Craig's family but under the current circumstances... this Easter was exactly what we needed. It was refreshing to sit at the table and play games, re-live old memories, try new recipes and just relish in the peace and hope of the day. My mom was able to relax and just enjoy her time with everyone without having to worry about the family. It was perfect!  








Thursday, April 21, 2011

Perspective

Maybe my view on this trial has been all wrong.Maybe I've been looking at this as a tragedy rather than seeing the true blessings this disease-ALS- has provided us. Maybe my perspective needs to change...

As I was driving to work this week I saw a jeep with a large window decal that stated: "Death is the road to awe". My initial reaction was irritation. I instantly started to judge the person driving. All I could think was death is not a trivial thing- How could they take something so serious and make a mockery of it? That statement ran through my mind constantly for the rest of the day. It was as though it was haunting me. But, the more I dwelled on that statement the more I realized it's deeper meaning. Death really is the road to AWE- it's so easy to forget that this life is temporary- this life we are living is just a stepping stone to something greater- to something so magnificent that our feeble minds aren't capable enough to comprehend. To know that after this life we gain eternity- a life without pain. A life with complete healing. Death leads us to Jesus... how in the world can you not stand in front of your creator and not be in complete awe?

I realize now that although what my family- specifically my mom- is going through is tragic it has an incredible ending. That no matter what we face now, the reward at the end is beyond worth it. It's so so worth every trial and every heartbreak this life could ever bring! We are blessed that through this trial God has done nothing but open our eyes to his incredible beauty. We all have witnessed His hand upon us and felt his love in such a deep intimate way. And, quite frankly- I'm not sure that without this trial I would have had the gift of knowing my savior in such a sweet and peaceful way. Death is a reality- but with Jesus- Life is an even greater reality!


Wednesday, April 6, 2011

3 devastating letters

What do you do when everything you've ever known to be true is slowly ripped away from you? When no matter how tight you hold on to your reality it's not enough to change the inevitable? Tragedy strikes everyone at one point or another... I know this- so why does it come as such a shock?

When my mom was diagnosed with ALS it felt as though I was suffocating. I will never forget that night. I will never forget what I felt when my dad called me to the kitchen table and said: "Tara we need to talk." I knew instantly. I knew that what I was about to hear was going to be devasting. I knew that in a matter of moments my life was going to change forever. ...and then just like that... my mom spoke those awful 3 letters- ALS. To say my reaction was horrid is an understatement! I screamed and sobbed uncontrollably. I said things I regretted and ran from the table because throwing up was all I was capable of. My parents and family did their best to protect me. I was the last to find out as I was 8 months pregnant, and already dealing with a high risk pregnancy- no one wanted to be the cause of me going in to labor yet again. I was angry that I was the last to know. I was angry that I was not in a position to be there for my mom as she dealt with the horrific news. I was angry that I was going to lose her. I was furious that so much of her life was being taken away.

My mom is a fighter! She is strong and beautiful and walks with nothing but grace. She leads by example and her compassion for people shines through everything she does. She has always had an incredible purpose for her life and this trial is nothing more than a way to share with the world that through devastation- peace, grace and love never fail.

I want this blog to bring peace to others suffering from this horrific disease known as ALS. I want grace to shine through everything thats documented. From memories to progress notes to facts and awareness this blog is my tribute to her and her incredible legacy.