Last weekend, I drove my oldest daughter to college.  It was a long drive and it was raining.  My daughter, tired from a week of late nights, quickly went to sleep.  It was a deep sleep; she was snoring!  I thought about how much trust that requires.  There are certain people who, no matter how tired I am, I could not sleep while they are driving.  Afterall, my life is in their hands!  My daughter could rest peacefully because she knew that I  would drive safely and that I had directions and a map.  I would get her to her destination.

We did have one minor problem.  The pressure in my tires was low.  I pulled off and explained to Ashley the dangers of driving with the tires not properly inflated.  She agreed that we should stop and take care of the problem rather than continuing on our journey simply speeding toward our destination.

That entire scenario made me contemplate my relationship with Christ.  Do I trust him enough to let him take the driver's seat?  Do I trust that he knows how to get me to my destination so much so that I can relax and simply enjoy the ride?  It's not to say that there won't be any troubles along the way even with Christ at the wheel but I know he will guide me in how to handle them.  

We attended a kick-off meeting for The Walk to Defeat ALS on Saturday.  Researchers are so close to making significant breakthroughs so people won't have to suffer with this illness but we need more funding!  The ALS Association shared the Public Service Announcement shown below.  If this doesn't move you to act on Akhil's behalf, I don't know what will...

You can make a difference by making a donation or registering to walk.  Go to 

http://web.alsa.org/site/TR/Walks/OregonandSWWashington?team_id=255613&pg=team&fr_id=9237 

to make your commitment!  Then - pass it on!

If you find yourself facing a giant in life like ALS, you no doubt will hear people say, "If you need anything, just call me."  How many of us feel comfortable doing that though?  That's why I am thankful for people like my sister, Linda.  She is a difference-maker.  People who truly are difference makers look for opportunities to act; they don't wait to be asked.

Akhil had been on the fence for some time about getting a feeding tube.  I was encouraging him to get one now even though he doesn't need to use it simply because his breathing is compromised and if it continues to decline, having any sort of surgery would not be an option.  I felt having the tube was simply giving him an option of whether or not to receive nutrition should he not be able to swallow at some point.  On July 22 while at the ALS clinic, he agreed to have the procedure done.  The staff there worked quickly to schedule a consultation with a surgeon but we were unable to get in for the consult until the end of August.  Worried that with so much time to think, Akhil would change his mind, we tried to come up with a better plan.  The week of July 29th, Akhil's doctor decided we could skip the consult and schedule the procedure directly so we got it on the calendar for the following week!  No time for Akhil to change his mind!

Akhil was nervous about the procedure.  He called my sister, Linda, who is a nurse by education on Thursday, August 1st.  He told her he wished she lived next door to us because she would take good care of him (I guess he thought I wouldn't).  Linda reassured him that he would be fine and they wrapped up their call.  Linda didn't wait for Akhil to ask her to come, she just booked a flight to be with him.  Friday she rearranged her work schedule as a hospital executive for the following week so she could be with Akhil Monday.  Some inconvenience and a very expensive plane ticket  later and she was here to comfort Akhil and put his mind at ease without him having to ask.  

We so appreciate Linda hearing the "I need you" between the lines of conversation and taking the initiative to be there for Akhil.  It is wonderful to have a person in your life that will look for ways to give and help without having to be asked.  That is the mark of a true difference-maker.

A plane ride to help a friend may not be in your budget but there are probably other things you can do to make a difference in the life of a suffering friend.  Often times one who is struggling simply needs to feel that they are not alone.  A coffee date, a meal or a simple "I am thinking of you" note or phone call may be just what they need.  If you notice their yard needs attention, don't wait to be asked, just offer to take care of it.  Look around and see how you can help.  

In our website about The Walk to Defeat ALS, we set a big fundraising goal because we are difference-making people.  We want everyone to strive to be difference-makers, not just with a little ripple but by churning up a tidal wave!  If you have a struggling friend, vow to be a difference-maker in their life.  It will not only affect them but I guarantee it will make a difference in your life too.

Friendship can be an evasive thing for some of us.  We get wrapped up in our careers, families and hobbies and have no time to develop meaningful relationships but we are not made to go through life alone.  We all need a team of supporters to journey through life.  It may be a team of one in the form of a good friend or spouse, or it may be a team of hundreds.  Regardless, this team is a source of encouragement, wisdom, comfort and security during those times when we are confronted by a situation that is too big for us to handle alone.  At some point, we will all face something in our lives that is bigger than us and we will need that team of supporters.  

I was the kind of person who thought I could endure anything alone and then ALS showed up!  I have had the opportunity to learn many lessons during this time of trial.  One lesson is that life is a whole lot easier when we don't go through it alone.  Also, in times of trial, God gives us blessings but sometimes we must look for them.  Fortunately, I didn't have to look hard to recognize God's gift in all the wonderful people placed in our lives to help us through this time.  It is an amazing feeling to be surrounded by supporters wherever we turn.  We would never have had the opportunity to feel so feel so loved and supported were it not for this awful disease.  This journey has shown me that one's success should not be measured by career, position or financial status but, rather, by the depth of the relationships one has cultivated over the course of a lifetime.  

“You can give without loving, but you cannot love without giving.” 
                                                              ― Amy Carmichael

“Do you love me?  Do you really love me?”  Those are questions we all want answered in our lifetime.  I would like Akhil to know that he is loved through our generous giving.  We have formed a team, Akhil’s Angels, to walk in the Walk to Defeat ALS on September 21st.  Our team has an ambitious goal of raising $10,000 so we need everyone’s help!  I know if we reach this goal, it will bring tears to Akhil’s eyes as he realizes how many of us are standing by him in this fight against ALS.

If you would like to donate or join our team, please go to http://web.alsa.org/site/TR/Walks/OregonandSWWashington?px=3236413&pg=personal&fr_id=9237#.UdOOnPkzU40

Please know that your donation goes to support research and programs that our family directly benefits from.  The ALS Association has provided us with respite care (in-home help).  They have also loaned us equipment to save us the expense of having to purchase everything we need to make Akhil’s life more comfortable.  I assure you that you can feel good about giving generously to this cause.

There is a lot of exciting research going on regarding ALS, especially related to stem cells (not from aborted fetuses).  This research could lead to a breakthrough in the next couple of years to offer hope to those facing a diagnosis of ALS.

I hope you will show your support at whatever level you are able.  Individually, we may only make a small impact, but together we can make a big difference!

From taking our first steps to riding a two-wheeler to driving a car, we grow up being applauded as we learn to do things all by ourselves.  I wonder if these accolades lead to that feeling of incompetence when we are unable to “do it all by ourselves”?  Maybe I am the only one who feels like she has to do it all and not depend on anyone else. 

My husband used to tell me that I intimidate people by how much I routinely get accomplished in a day.  Prior to his illness, I could be relied upon to be organized and punctual, knocking out my entire to-do list consistently each day.  Now things are different.  I am rarely on time to anything and I can’t even seem to organize a family dinner.  I tried up until recently to do it all myself and found my to-do list just seemed to grow with each day I got through. 

Perhaps you have seen the video on Akhil’s May 13th post and you have a better understanding of what it is like to take care of someone who is disabled.  Imagine, on top of that, you have a house to keep up, three kids to have relationships with and all the other daily tasks of being a wife, mom and friend.  It was overwhelming.  Then some angels came one by one…

A sweet friend asked if we would appreciate meals.  At first, the “I can do it” attitude made me want to say, “Oh, that’s not necessary.”  Luckily, the stressed out and overwhelmed part of me triumphed and Melissa set up meals for us twice a week.  The meals have been such a blessing.  It is just one less thing I have to plan, organize, prepare and clean up!  I am so thankful to all of my wonderful friends (and some people who barely know us but who wanted to help) who have provided and continue to provide meals for us. 

Another wonderful friend suggested that she would come over once a week for a couple of hours to be with Akhil so I could go out and he could have some fun.  Lori has faithfully come to our home every Monday afternoon.  She taught Akhil to play cribbage - and - how to lose gracefully!  He has been blessed by her visits, prayers and the conversation.

Dear Dawna practices reflexology and she generously offered her services to Akhil.  She has been treating Akhil to reflexology pampering every week.  He feels so good after each of her visits.  She has blessed him with her time and touch.

Most recently, some angels came within the last couple of weeks as they stepped forward willing to assist with Akhil’s daily care.  Mark, Scott and Bob have been such a blessing to me and Akhil by giving me the opportunity to temporarily step out of the role of caregiver and back into the roles of wife and mother. 

What I know for sure is that I cannot do it all.  I am so thankful God put all these people in our lives to show me that I don’t have to.

I had the privilege of addressing the board of directors for the ALS Association a couple of weeks ago.  I was asked to share how ALS has impacted our lives.  I didn’t have to think long to sum it up in a one-word answer – fear.  People assume I mean a fear of death but since we are Christians, in God’s timing, death is not something to be feared.  What is more fearful to me is life - life after ALS.  What does that look like trying to restore life to a family?

One of the biggest fears we face is finances since ALS has affected the family bread-winner.  Sickness is expensive!  Right now, we are living on 60% of Akhil’s basic income.  From that 60%, we have a mortgage payment and a $1400 per month health insurance payment.  Could you get by?  It is scary!  Will this illness whittle away our savings?

I asked the ALS Association to assist ALS families related to this financial fear.  One thing I suggested, which we did early on, is to create a budget template for those newly diagnosed so they can project their financial needs as the disease progresses.    The second, involves the development of a professional network to assist in finding an employer who may be willing to hire the healthy spouse as a consultant or on a part-time basis during the illness so when the time comes, the healthy spouse may be employable.  I haven’t worked in my field in a few years so for me, looking for a job is a daunting task. 

I had many other thoughts and suggestions I shared with the board but I won’t bore you with them here.  I will share with you how it made me connect with Joseph in the Bible.  Joseph was sold into slavery by his own brothers.  Then he was wrongly imprisoned!  He suffered for eleven years before God elevated him to a position of power.  The Bible doesn’t mention it, but I was wondering whether or not Joseph cried out to God to remove him from slavery or prison.  The Bible speaks of times when it was evident that God was with Joseph in prison, but did Joseph ever feel abandoned or forgotten by God?  I know I have cried out to God many times for relief.  Looking back on Joseph’s life, we can see how God used his time of suffering to build his character so Joseph was prepared for what was going to come his way.  I can only hope that is God’s plan for me – to use me in some great way that, without going through this time of suffering, I would not have been equipped to handle. 

The resounding message through all of this is “Trust God”.  That is the message Joseph speaks to us.  We need to fully trust God.  His plan may not be the one we want for our earthly lives but it is the best plan for our eternal  lives.  Sometimes we forget that.  God’s plan encompasses not only the here and now but also the forever after.  If you feel you are in a place of imprisonment or suffering, I encourage you to seek God’s eternal purpose in it.  Trust that He has a reason for taking you through your time of suffering.

If that doesn’t help, listen to my current favorite song…

When Akhil and I were married, we opted for the traditional wedding vows promising to love, honor and cherish each other in sickness and in health… 

We made a commitment, not to our own happiness, but to each other, to God and to all in attendance that we would stay married no matter the circumstances. 

We took the vows seriously and hope to live by example for our children that marriage is forever.

This might hit a nerve with some of you reading this but surprisingly, marriage is not about our own happiness. 

There was nothing in my vows about staying with Akhil as long as he made me happy.  In the traditional vows, there is nothing reciprocal, only a promise to stay no matter what. 

I am not sure where the notion came from that marriage is temporary lasting only as long as one partner meets the other’s expectations and needs.  That is not a commitmment, it's an exchange.

 We live in a media-infested society that forces images upon us of the “perfect” mate and “ideal” life.  We are convinced that we are entitled to be with the perfect mate even if we are less than ideal ourselves. 

We need to live life a certain way and anything less than that and we cannot be satisfied.  I am thankful I married a man who did not succumb to these falsehoods.  

The grass is always appears greener somewhere else.  The key word being: appears. 

My advice:  It is best not to look in that direction! 

When I was in school, I loved the thrill of competing in anything athletic – volleyball, basketball, track, and tennis.  I was fortunate to go to a large school so we had pretty good teams for all sports.  We usually entered the playing field expecting to win.  There would be those rare times though when the opponent we faced was formidable; we knew they were bigger and better than we were.  Even though we knew the odds were against us, we put our game face on and put forth our best effort hoping and praying that a miracle would occur and we would win.  Sometimes, we did!

ALS is the formidable opponent on the playing field of my life right now.  I know the odds are against us but every day we put our game face on and walk on the field once again hoping and praying that by some miracle we will experience a victory.  Some days we do!  Some days Akhil insists that he is functioning better than the day before whether he feels he is speaking better or able to walk better we graciously accept the victory.  Some days we suffer defeat in the form of a new physical challenge that wasn’t there the day before.  No matter how the day before went, we enter the field again the next day with our fighting spirit ready to take on the challenge.

When facing an ominous opponent, there are a couple of choices:  we can concede to defeat before the action even begins or we can confront our opponent courageously and have hope that things may be different than the odds or experts, or our friends suggest.  We can easily grasp that slim chance of hope because we have an amazing, powerful God that is with us during every moment. 

When the Israelites were about to go into battle, the priest would come forward and address the army.  He would say: “Hear, Israel: Today you are going into battle against your enemies. Do not be fainthearted or afraid; do not panic or be terrified by them.  For the Lord your God is the one who goes with you to fight for you against your enemies to give you victory.”  Deuteronomy 20:3-4  When we face ALS each day, we need to have the same attitude as the Israelites.  We cannot be afraid; if we allow fear to fill our minds then there is no room for faith.  We need to enter the playing field just as we did as confident young athletes, knowing our team is bigger and better than any opponent we face.  Our athletic coach and cheerleaders have been replaced by the Holy Spirit and God.  They are on the field with us guiding us and cheering us on; one way or another leading us to victory.