Friday, August 12, 2016

The Power of Testimony

“In your hearts honor Christ, the Lord as holy, always being prepared to make a defense to anyone who asks you for a reason for the hope that is in you; yet do it with gentleness and respect.” (1 Peter 3:15 ESV )

I had the opportunity recently to travel to Washington DC to attend an FDA advisory committee meeting.  Over 800 parents, children and family members were in attendance that day showing support for approval of "Eteplirsen”, the first ever drug to treat Duchenne Muscular Dystrophy.

As you can imagine, emotions were high as we spent the morning and early afternoon listening to doctors and researchers presenting their charts and graphs showing the outcome of the clinical trial.  We all were hoping there would be enough evidence to convince the committee that this drug was worthy of their approval..... click on link below to continue reading...

Tuesday, June 21, 2016

Celebrating a milestone

"Give your burdens to the Lord. He will carry them. He will not permit the godly to slip and fall."
Psalms 55:22 (TLB) 

I knew it was coming. It’s been in the back of my mind for the past year. I’ve tried to avoid, ignore, distract myself but there was no way around. Once again I find myself smack dab in the middle of it. My old pal (not)…. GRIEF.

As a young boy and now a young man with Duchenne Muscular Dystrophy, Ryan’s school years were often difficult. Although a struggle, he managed to keep up academically. It was the physical, emotional and social aspects that were his hardest battles. He started displaying anxiety near the end of his elementary years and began having full blown panic attacks in junior high. By the start of high school, we withdrew him feeling homeschooling would be best for the remainder of his education. 
It was not your typical home-schooling. A tutor came to our home. Ryan kept up pretty well until this, his final year of school. His tutor moved and Ryan struggled with the change.  So we chose to do this last year on our own, in our own way. Doing so meant he would complete his education, but in a non-typical fashion.  Ryan understood that he would not graduate with his class. We talked about it and he was okay with his decision. He knew he would not “walk” with his class. There would be no pomp and circumstance. 

On the other hand, I struggled as I knew this day would come. It is hard for me to see all the postings and pictures of friend’s children at their graduations. I am happy for them. I can and will celebrate those moments with them! Yet deep down inside, it pokes at my grieving heart. 

It was Ryan’s choice. I knew I had to respect that choice. Now he is struggling too. Not because of his choice but watching his friends celebrate these events and moving on. He said,” Mom I am happy for them but my life is so different. They are talking about moving out, going to college. It is hard, I know I will never be able to be on my own.”

Trust me, we have heard all the, “You can do anything you put your mind to” speeches but the reality is he can’t and he knows that. These types of life events bring that reality to the front. You see things the way they are “supposed” to be, yet have to accept that is not our reality.

We both have to grief the loss… again.  

There are no short cuts. Each grieving moment is as painful as the last one even when you know it is coming. I cannot protect Ryan or myself from it. As much as I want to run and hide, it eventually bubbles up. We will get through it, with some tearful days. Just as we have numerous times over the past few years. No matter how many time I experience it, it does not speed up the process. We still have to walk through it.

 I am thankful God understands our sorrows and Grief as he watched his own son fulfill his destiny:
We despised him and rejected him-a man of sorrows, acquainted with bitterest grief. (Isaiah 53:3, TLB)

As we process and deal with this grief we are also choosing to see things from a different perspective. Setting aside the “normal”, we are celebrating this milestone of Ryan’s life.

The one word I could chose to describe Ryan’s life is … Endurance; The ability to do something difficult for a long time; the ability to deal with pain that continues for a long time, the quality of continuing for a long time.

Ryan endured. He endured years of watching his friends get bigger, stronger as he became weaker. He endured teachers that didn’t want to understand, IEP meetings, promises made that were never kept. He endured going from being able to walk, to needing a wheelchair. Endured having friends pull away then reject him. He endured panic of such things as there being a fire while he was on the second floor of the school, and the fear of not being able to get out. He endured disappointments, changes, challenges and pain. Most importantly, in enduring HE FINISHED WELL!

So even in the midst of our grief, we are choosing to celebrate Ryan’s unique successes. He (and our family) have learned lessons one can only learn in the school of life. Ones that often take people years to understand. 

We know that God really does care. So much so that he says in Psalms 55:22, "Give your burdens to the Lord. He will carry them. He will not permit the godly to slip and fall." (TLB) 

Perhaps Francis H. Havergal summed it up best: “To thee I bring my care, the care I cannot flee. Thou wilt not only share, but bear it all for me. O Loving Savior, now to thee, I bring the load that wearies me.”

Grief is a lonely and personal thing. Feeling  alone, yet I know I am not. Thankful that God is in it with me.  He understands, and I don’t have to hide these feelings from him or pretend everything is okay.  He can handle, " the load that wearies me".

Originally posted 6/21/2016 :


Saturday, June 18, 2016

A long awaited dream fulfilled

This past week I saw the fulfillment of a dream come true for my husband. It has been a long time in the making, 30 years to be exact.

Shortly after Jeff graduated from high school he left for Air Force basic training. He did not attend college but it was always in the back of his mind to get a degree. Early in our marriage he started taking classes at night and on weekends, while working full time. Then deployments, military training, cross country moves, the birth of 4 children, and special needs entered our world. All of these events brought additional stresses. I was overwhelmed and needed him home. At that point his dream was put on the back-burner. He chose to put the needs of our family before his desire of school. 

I know it was frustrating for him but he never made me feel bad or guilty for asking him to take a break. That desire was never taken from him, just put to the side.  As things would settled down he would take a few classes and then after 20 years he earned his BS.  He was happy with that but I knew he wanted to continue. Timing was not right.  

Then 2 years ago an opportunity came for him to return to school. We talked about what how it would work into our lives and schedules and decided to go for it. This past week he received his MBA, 30 years in the making!

Sometimes life gets in the way of our dreams and desires. Jeff persevered but never let his desires get in the way of his family’s needs.  It is hard. I know I struggle with this more than he does. I tend to want to throw a fit about it before I accept it, but he takes in stride. 

Letting go of our wants, needs and desires goes against our very nature. Yet there are times we are required to make sacrifices for those we love. Especially as a parent of a special needs child we find ourselves letting go of those things we once thought we would be or do.   

Do you have a dream that you feel will never be fulfilled? Do you trust God enough to surrender it to him? If the desire of your heart is what God desires for your life he will bring it to pass. It will not be because we have pushed ourselves to the limit or scarified our families to achieve it. It will be brought forth in his perfect timing.

If it is from God it will still be there when the timing is right. It may take 3 days or 30 years for that dream to be fulfilled. We might find as time goes by God may change our dreams and desires. He may have a whole new dream for our life. Which may go far beyond what we could have imagined. 

Trust him first. Put the needs of family above our own desires and he will honor and bless that.

“Delight yourself in the Lord and he will give you the desires of your heart”! (Psalms 37:4, NAS)

Sunday, February 7, 2016


Oswald Chambers said, “There will come one day a personal and direct touch from God when every tear and perplexity, every oppression and distress, every suffering and pain, and wrong and injustice will have a complete and ample and overwhelming explanation”.  Oh how I long for that day!

Over 2 weeks ago I flew to Washington, DC. I was part of a large group who would make a showing of support at an FDA Ad Comm meeting. To support and encourage the approval of the first ever drug for Duchenne Muscular Dystrophy, known as Eteplirsen. After our disappointing trip to California last month in hopes of Ryan being part of a different clinical trial, I was asked to submit a written testimony about our experience. The hope that my testimony, along with many others, would help the FDA to see the human side; that there are real people, boys and young men (parents included) whose lives depend on what they decide.

The wheels on the plane just touched down when my phone buzzed with incoming messages.  As we waited for the plane to disembark I scanned through the messages, stopping in disbelief when I read these words: “The FDA meeting has been cancelled due to expected inclement weather.” I re-read it another time to make sure I understood the message. We just flew 6 hours across country to attend this meeting, now what?  

Not sure what to do, I got off the plane and headed down to luggage claim. There was a shuttle driver waiting to take me and other families to the hotel. It was late and I was tired. Figured I would get to the hotel, get some sleep and then make arrangements to fly back home.

The ride from the airport to the hotel was difficult. There was a lot of traffic, the roads were icy from a trace of snow. It took over 2 hours to get to our hotel. The other families on the shuttle were in the same position as us. They had flown in from California to be part of the meeting. For 2 hours there was a lot of talk about disappointments, frustrations and making plans to return home.

We finally arrived at the hotel close to 1:00 a.m. As the families started unloading, one of the little boys was crying.  He was afraid to get off the shuttle. He knew it was icy and was afraid he was going to fall. A very real possibility for a boy with Duchennes. As the mom was struggling with luggage, I realized that the boy and his mom were traveling alone. I didn’t hesitate to ask, “Can I give him a piggy back ride into the hotel?”  He stopped crying and his mom said yes!  I turned around and told him to put his arms around my neck. I gently lifted him onto my back and down the steps into the hotel.  The moment he put his arms around my neck, the familiarity of that little action brought tears to my eyes.  I was surprised by the emotions. Not wanting to completely lose it I tried to stay focused on getting him safely inside the hotel. Still fighting to hold back the tears I walked into the lobby of the hotel and set him down on the couch. After making sure he was okay and that his mom was back with him, I walked to where my friend was waiting for me.

The moment I saw her, there was no more fighting the tears. Still confused as to why I was hit but such intense emotions I let the tears flow.  Then it hit me. The memories of Ryan being this little boy’s age and of the hundreds of times I gave him piggy back rides. I cannot begin to tell you how many times, my husband, Ryan’s older brothers and I carried him. When his legs would get tired, when the steps became too much for him to pull himself up. In fact, until we got a chair lift in our home we carried him up and down the steps in our house numerous times every single day.  

Memories are normally very positive and an important part of life. However, they can also be negative when progressive disease affects your family and friends, especially your own child. In my case, it is our youngest son Ryan who has Duchenne Muscular Dystrophy.  

I rarely look at pictures from the past. When I do I feel like I am peeking at them through my fingers, like you would when you are watching a scary show…wanting to look, but not wanting to deal with the intense emotions.  When I see pictures of Ryan walking, running, riding a bike, I know he did these things but that part of our life seems to be from a different world.  The moment he stopped walking became a forever pivotal day in our life.  Pictures are a vivid reminder of how much Ryan has lost. They show milestones to the grief that we have had to deal with.

For survival I carefully built a protective wall around the memories, to protect myself from the feelings and painful emotions they cause. But once in a while something will happen that will chip a little into that wall. That moment I lifted that boy, the familiarity of that action didn’t just chip at that wall. The wall, I worked so hard to keep in tacked, came crashing down and I was thrown back into a world that I have tried so hard to forget.

When I boarded that plane to DC I convinced myself I was just going to show support. I normally don’t like to put myself in these situations, knowing how emotional it can be, but my wall was firmly in place!  I knew about the exon skipping drug, Eteplirsen. I also knew that it did not directly affect the outcome of Ryan’s specific deletion, so I could go and just be a quiet supporter. There would be no emotions attached. That is what I told myself, until that moment.

How could I look at these younger boys and not feel? In that moment I could see how this could be a game changer for them!

Without this drug I KNOW what these families will go through. It is written in stone. I know from personal experience how much heartache, pain and grief they will have to endure over the next few years. But this drug may give them a chance! A chance to be able to have a different path in the Duchenne’s world.

Eteplirsen is not new to the scientific world. They have been working on Exon skipping as a possible treatment for 25 yrs. There has been a Patent on it for 10 years. The specific drug Eteplirsen has been in clinical trial for almost 5 years. It’s hard not to get emotional when you think about the fact they have had the technology to skip every exon for 10 years.

I think back to where my son was 10 years ago. Here is a picture of Ryan and his dad. 10 years ago, Ryan was 8. His dad giving him the very familiar piggyback ride! 

Although diagnosed at age 5, by the age of 8 he was just starting to show more intense signs of the muscle weakness. He was still able to walk, only he could not walk for very long without becoming exhausted.

There is one vivid memory I have of Ryan when he was 8 years old. He would set his own alarm to wake up extra early every morning.  He would get dressed, pour a bowl of cereal, brush his teeth and put his shoes on. He would come into my room to wake me up, give me a big hug and inform me he was ALL ready for school. Then he would ask if he could watch his favorite cartoon, “Sponge Bob”.  

Ryan is 18 yrs old now, and has to wait for me to dress him, lift him out of bed and into his wheelchair, brush his teeth and make his breakfast. He can no longer lift his arms to give me a hug. I know how hard it is for me, I can only imagine how hard it is for Ryan. He has had to grieve these losses of independence a little at a time. As he became more dependent, my once happy easy going child started battling fear and anxiety. Leaving the house to go to school became a challenge.

I think  how different it might have been when at 8 yrs old he went to MDA camp for the first time. He cried to come home after the first night.  Even after he was home he was unable to sleep for a week before he finally opened up to me.  He told me he saw older boys in wheelchairs, and some using machines to breathe. Ryan knew these boys had the same disease as he did and it scared him. We had talked a little about his disease but when he SAW those boys he came face to face with the reality of his future. No 8 year old boys should have to deal with such difficult things, such as wheelchairs and ventilators and even death at such an early age.  If only there was a drug available to him, like Eteplirsen. That conversation could have gone a whole lot different. There could have been the promise of things being different for him. It could have been a game changer in his life!

Last month we were given opportunity to go to California to be part of a clinical trial. As parents we were beyond excited and ready right then to say YES! But we knew it was Ryan’s decision to make. Ryan was understandable cautious but he said he would think about it.  He asked us a lot of questions and even did research online about it.  He finally said “Let’s go for it”.  “What do I have to lose”? 

I wish the outcome was different. Being told after Ryan’s initial screening that he didn’t meet minimal requirements for the trial was for us another loss we had to deal with.  I couldn’t help thinking if only this opportunity was presented to us 5 years ago how much different things could have been.

Eteplirsen has been in clinical trial for 5 years. The data shows the drug works, that it slows the progression of Duchenne, in some cases stops and reverses it.  The drug allows muscles to produce dystrophin, the muscle missing in Duchenne boys. The drug is completely safe. No negative side-effects, no adverse events in any of the trials. 

That is why I feel so strongly that the FDA needs to give this drug a chance. To the FDA, I will use Ryan’s own word “Let’s go for it”. “What do we have to lose?”  From the way I see it, there is nothing to lose by approving this drug but for those boys with this specific deletion they have everything to gain!

We are still waiting for the Ad Comm meeting to be rescheduled. I can only imagine how hard this is for the parents of those boys directly involved with this drug.  As I have already stated, they have been working towards this for 5 years. To get this far and then a snow storm shut the door! How discouraging and frustrating for them.

I cannot change any of that. What I can do is show my support. We are all in this together whether or not your child can benefit from this specific exon skipping drug or not. We need to stand together in support. We all know it is those with the loudest voice who gets the attention. Hopefully in this case it will be positive attention!

You don’t have to travel to Washington to have your voice heard. Here is what you can do to help.

1. Get the word out, share this with everyone you know. Share on your face book post and encourage all your friends to do the same.

2. Contact your states representatives. Encourage their support on this issue.

3.  Pray that there will be NO political games in these hearings. This is not a game, these are our children’s lives.

The day I received the call of Ryan’s diagnosis will be forever imprinted in my mind.  A phone call no parent should ever have to receive. We were in shock when we were told over the phone that Ryan had Duchenne Muscular Dystrophy. We would need to see a Neurologist to have a genetic test to confirm the diagnosis. The doctor went on to say, “There was no hurry in getting this done because there is no treatment or cure for Duchenne”. Can you imagine for a parent knowing what your childs life will be like and being told there was NOTHING you could do to change it? 

Can you imagine how much different that phone call would have been if the diagnosis of Duchennes was followed by the words” I am excited to share with you a new treatment that has just been approved by the FDA”.

Yes there IS something you can do! This drug can be a game changer for these boys! 

For information about Exon Skipping 

Thursday, December 24, 2015

Noodle Soup Part 1

Pho, Soup, Food, Vietnamese, Asian, Bowl, Beef, Vietnam

Your son does not meet the requirements for the clinical trial. Just like that the door was closed.  

Not the outcome we had prayed and hoped for when we were contacted 2 weeks early about Ryan possibly participating in a clinical trial at UCLA.

All the doors were wide open or so it seemed. Just the events leading up finding out about this opportunity seemed to say, God was paving the way.  

For the first time ever we had hope of a treatment! Even if it was only a clinical trial they were only accepting 12 boys, nationwide and Ryan was given this chance. We were told we needed to be at UCLA within 2 weeks. Jeff worked hard to get our van and trailer ready for the trip. Almost 2 weeks later, after 3 long, tiring days of driving we arrived in California, the day before Ryan’s appointment.

Ryan’s first test was a pulmonary function test. We knew they would do this one first. If he did not meet the minimal requirements of this test then that would be it, there would be no need for further testing.  He did not pass the first day, they knew he was tired from the long drive so asked us to come back the next day. Unfortunately the next day was the same results. The man who was running the clinical trial told us the news, handed us some forms to sign, said he was sorry and walked out of the room.  

Ryan, Jeff and I sat there in silence. Jeff and I didn’t dare look at each other, knowing what we would see in each other faces. We were numb. The whole whirlwind of events over the past 2 weeks to get us here made this moment seem unreal. We felt for sure this was the direction God was leading us, then to have this chance of hope be taken from us, just that quickly.

After a few minutes in silence we got to leave. Still processing what we were just told we wandered through the Downtown UCLA area looking for a place to eat lunch.  Not really feeling like we could eat, but not ready to get back in the van, to face the fact that this was it, the end of a long awaited chance at hope. We fought through the busy crowded street peaking inside the different cafes. Wondering if we would find something that would fill the emptiness.  

The wonderful smell from the Pho Vietnamese noodle cafe made us stop to look inside. Yet we quickly realized how small it was and it would be difficult for Ryan to get in. We started walking past when one of the waiters opened the door and asked if we were coming in.  Jeff and I tried to explain to him about Ryan and he reassured us in broken English they would make room.  We didn’t want to make a scene so we thanked him and walked on.  We wandered through the streets for about 20 more minutes. 

Still feeling like we were in a daze, unable to even make a decision about where we were going to eat, we decided to just head back toward our van.  As we approached the Vietnamese cafe the waiter opened the door and said, "you come inside"! He was NOT taking no for an answer! He went in and moved tables, chairs and even customers around, smiling and reassuring us they would make room for Ryan! At this point, feeling like we couldn’t say no again, we walked in, thanked him and settling into our tiny table.  We picked up the menu seeing they only offered noodle soup, knowing how hard that was for Ryan to eat we started second guessing our decision. The waiter must have noticed the distressed look on our faces so he marched back over to our table.  He explained to us all the dishes on the menu, then pretty much ordered his favorite for us! Okay, that decision was made! 

When our food arrived Ryan was feeling awkward. Soup is not the easiest thing for him to eat yet he refused to have us help him.  He got so frustrated, I was in tears watching him struggle to eat and all the reality of the day came bubbling up. About the time I was ready to say FORGET IT, an older Vietnamese women came over to Ryan. Not saying a word, she tied a big white dishtowel around his neck, smiled at him, and walked back to the kitchen.  This little offer of quiet kindness seemed to say to Ryan, its okay!  Make a mess, we don’t care!  We were in a tiny Vietnamese cafĂ© in the middle of downtown LA , Yet we felt watched over and cared for. Maybe it was the warmth of the soup or the kindness of strangers yet we felt ourselves finally able to take a moment to relax and breath. 

They had no idea the disappointment and discouragement we had been through, yet they went out of their way to show us kindness and understanding. We felt alone wondering why God seemed to say No to a prayer that we so desperately wanted to be a Yes. God knew our hearts were breaking. He wanted us to know he saw us and I have no doubt he used these people to minister much needed comfort to our family!

Do you feel alone? Do wonder if God still sees?  Are you waiting for the answer to a long time prayer? Did God give you a no to a prayer you so desperately wanted? God will show you he cares. He will find ways to offer you hope and comfort sometimes in the most unexpected ways. Even in the middle of Downtown LA he can used strangers to offer a little respite. Sometimes it will be later that you are able to look back and see specific ways he was there. Time and Perspective is a beautiful thing! 

We know God led us down to California. All the doors were opened. The path was laid out even before we received the call. Then to have the door close. To get a no answer to this prayer was not what we expected. God may have said No to this prayer, but he did use this situation in an answer to another prayer. One that I had been praying about this past summer!  Part 2, An Unexpected answer to prayer, to follow soon! 

Monday, November 16, 2015

PRAYERS! Clinical Trial possibility for Ryan!

Needing prayers. We found out last week that there is clinical trial at UCLA that Ryan qualifies for.  Its called exon skipping. We have been waiting for 14 years for a possible treatment for Ryan's specific deletion. I will write much more details later.  Right now i am asking prayer for the following specific things.

1. Jeff will be able to get our van and trailer ready, we have to be there in 2 weeks. ( Van and trailer story to come!)
2. Ryan will qualify. He will be having initial testing Dec.1st. Right now his pulmonary functions are borderline for what they have to be. He is at 48% he needs to be at 50% before they will proceed with the rest of the qualifying test. Praying for 50% or better! And for the rest of the test to come back good. EKG, Echo, blood work etc.
3. All the details of a safe place for Ryan and I to stay while there. We are going down for testing. If he qualifies and we proceed we have to be prepared to stay there for up to a year! Overwhelming to say the least!
4. Safety for travel. Jeff will be driving Ryan and I down to California, get us set up and then he will fly back home.

I can think of a hundred other things to pray for, my mind is swirling, but these are the things that need to happen for us to proceed. So we take it one step at a time!  Thank you all!

Here is a very basic short you-tube video that describes the exon skipping

Here is an article that explains a little more. Ryan will need exon skipping 45.

Thursday, October 1, 2015

Intertwining Threads of Grief

Psalms 3:3-6 
But you, Lord, are a shield around me, my glory, the One who lifts my head high. I call out to the Lord, and he answers me from his holy mountain.

I always understood grief to be associated with an actual death. I never imagined how much grief a person could experience for someone who is still alive.

My youngest son Ryan was diagnosed with Duchenne, a degenerative disease at the age of 5. At that point I went through the stages of grief. Denial, depression, bargaining (telling God how he was going to fix it), begging God for a miracle, then acceptance of this the new normal for not only Ryan’s life but our families as well.  

I assumed once I went through the acceptance stage of grief I would be done grieving.  

Yet within the first few years of his diagnosis, I watched helplessly as he slowly lost the ability to do basic things, stand, walk, lift his arms, and even give a hug. As these events happened I would find myself thrown back into the depths of grief.  I would ask myself, “Haven’t I already worked through the grief process”? I was frustrated and didn’t understand.  I would get down on myself  wondering why I couldn’t move past the grief. I would say to myself,” I must not be a good enough Christian. Maybe I needed to pray more. Have more faith and trust in God. Why was I always falling back into the same struggle”? 

Then one afternoon I was listening to an interview of Pat Furlong. Pat is the founder of an organization called Parent Project Muscular Dystrophy. She is also the mom of 2 boys that have since passed from Duchenne.  She stated, “People would tell me 'grieving is a process' with specific stages, suggesting there is a beginning and an end. I have not found this to be the case, rather I think grief is a state that we learn to live with”. 

When you are given a diagnosis like muscular dystrophy you not only grief the loss initially, you move into a “State” of grief. There are different stages in this State but there is never an end. Chronic Grief.

As she spoke, I felt like a weight lifted off my shoulders. She described exactly what I had been going through and how I was feeling. It had nothing to do with not believing in God enough, or lack of faith. It was my response to the reality of Ryan’s diagnosis.

For in grief nothing 'stays put.' One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?” 
But if a spiral, am I going up or down it?
― C.S. Lewis, A Grief Observed

While this does bring understanding, it does not stop me from going through times of sorrow. Often little things will bring a fleeing moment of grief. Then larger life events, like this past week my son turned 18. A time when most kids are applying for colleges, my son is applying for social security benefits. Those life moments hit harder. They bring about a deeper grief that may last a few days to a few weeks.

These moments of sorrow are delicate threads of grief. Each one a separate strand yet they interweave through each other. We need to allow ourselves these moments, they are real.  As we allow God to come along side us, to cry out to him in the midst of these moments he will use each thread to strengthen our heart to prepare us for what is yet to come.   

Heavenly Father,

Grief at times can be unbearable. We cry out to you, we need you. Help us to feel your presence. Give us strength for each day. We cling to the promise that you will use all these things for good and for your glory. Lord we can’t do this without your help.  

In Jesus name, 


Thursday, September 24, 2015

Your mom, she touched my heart!

“I’m sorry, I never do this but your mom …… she touched my heart".

My mom battle ovarian cancer for nearly 7 years. Her treatments for the cancer caused her to have a side effect of high blood pressure.  Because of this she was referred to a cardiac specialist, Dr. Lev. It was during these visits that my mom found out his wife was also battling cancer. She didn't see the doctor often. The appointments were quick, as most doctor appointments are. Yet my mom never once failed to ask him how his wife was doing, reassuring him that she was praying for her.  

Thanks to genetics, I am now dealing with high blood pressure. I was recently given a referral to see this same doctor.  Although I knew of him from my mom and dad I never met him until a few weeks ago. During my first appointment  we were going over my medical history when I said, " I know we have never met but you used to treat my mom.  Do you by chance remember Mary Huffman?"   He immediately stopped writing and looked up at me. In more of a statement than a question, he said "Yes, she died a few years ago at Madigan hospital".   He removed his glasses to wipe the tears from his eyes.  After a few minutes he said “I’m sorry, I never do this but your mom …… she touched my heart".  

He got up walked across the room to hand me a Kleenex. He said," Did you know I gave your dad my cell phone number"? I laughed and said" Yes, I did!"  I thought for a split second about asking him how his wife was doing but I was afraid to know. I am not sure I would have been able to finish the appointment if she had died as well. I guess I am not as brave as my mom.

After my appointment he walked me out to the reception desk. He asked me how my dad was doing. I answered him. As he shook my hand I looked him in the eye and said," thank you for taking such good care of my mom". He smiled and said..."It was my pleasure".

I love that God allowed me to see  how, even through a very difficult time mom reached out to encourage this doctor.  She did that so beautifully through her life and even more while she was battling cancer. She would pray each morning that God would show her who she was supposed to talk with that day. She purposefully sought opportunity to bring encouragement to others.  Some days it was just a smile, or a kind word. Once she even ended up praying for a women she met in a restaurant bathroom!   These little act of kindness may not seem like much. Nothing that is going to make the evening news, but as we can see through this doctor, you never know how something you say or do will touch someone’s heart.

We will probably never know the full extent of these "little things" until we get to heaven. It reminds me of a song that was popular a few years ago by Ray Boltz , "Thank You".  Here is just a small part of the lyrics.

One by one they came
Far as your eyes could see
Each life somehow touched
By your generosity
Little things that you had done
Sacrifices you made
They were unnoticed on the earth
In heaven now proclaimed

And I know that up in heaven
You're not supposed to cry
But I am almost sure
There were tears in your eyes
As Jesus took your hand
And you stood before the Lord
He said, my child look around you
For great is your reward

To reach out, with compassion, love, and simple human kindness.  That is something we can all purpose to do!  Who in your life might need a little bit of human kindness?  

Here is the link to the song if you want to hear the entire thing and be encouraged!

Sunday, August 23, 2015

A Hawaiian Angel

My mom has been gone for over 2 years, yet yesterday I had a very vivid memory of her. I felt like I was dreaming even though I was wide awake.

It was during her last few weeks of life. She was at the hospital in the hospice room. My sisters and I took turns staying with her through the night, not wanting her to be alone. This particular night I stayed with her. It was not a good night for my mom. She was extremely restless and agitated. Nothing we did would calm her. It seemed like the more medicine the nurse gave her the more agitated she became. I just remember feeling helpless, and praying our way through the night. I was so thankful when the darkness of the night slowly faded away as the light of the new day began to form. I prayed that this day would be better. That she would be able to get some rest and feel relief from whatever was upsetting her so much.

That morning my sisters and dad returned to the hospital. The team of doctors that were in charge of her hospice care wanted to have a meeting with the family. Knowing we didn’t want my mom to be alone, especially after her difficult night, the doctor walked into the room followed by an older lady. I cannot remember if she was a nurse but he assured us that this lady would sit with my mom and take care of her while we were gone.  We left the room feeling sure that she would be watched over. About 45 minutes later we walked back into the room. The moment we entered you could feel a since of peace and calm.  The women was sitting right beside my mom, rubbing her arms and singing softly. My mom was peacefully sleeping. The most at peace she had been all night. I wanted to cry. I was so thankful that my mom was finally able to get some rest. The women saw us enter the room, very quietly got up and walked out of the room.  We never saw her again. I don’t know her name or where she came from but I have no doubt God sent her to minister peace and calm to my mom.

The last few weeks of my mom’s life were very difficult. I think during an extremely difficult emotionally draining time you enter into what I call survival mode. It’s as if your mind puts a protective shield about you so you can do what you need to do.  Now over 2 years later little memories are coming back. That particular moment with my mom was probably one of the hardest emotionally and physically. I have not allowed myself to think about that night before. It caused too much sorrow. Now enough time has passed there is not as much sorrow attached to the memories and I am able to see a little moment of joy.

One little note about that "angel" that sat with my mom. She was an older Hawaiian women. The song she was singing was in Hawaiian. The neat thing about this is my mom and dad lived in Hawaii for 3 years back in the 1970s.. It was during that time that God truly became Lord of their lives. It changed not only their lives but our families as well.  During mom’s 7 year battle with cancer, they were  able to go back to Hawaii  a few times for mini vacations. Hawaii always held a special place in my moms heart. Those trips always seemed to bring her peace. I love that God brought in this Hawaiian “angel” to sing Hawaiian songs to calm moms’ heart. He knew exactly what she needed.  God never forgot her. God truly cares for the intimate details of our lives. Sometimes it takes a little time and distance before we can see the precious details.

Wednesday, July 29, 2015

A Gift of Understanding

I had the opportunity to attend a conference last weekend.  It was 3 very full days of workshops and lectures. I heard some wonderful speakers and took a lot in. Yet the one thing that left a lasting impression on me,  stood out over all the professional speakers, was a conversation I had with a beautiful 17 year old girl.

We just finished dinner, and were waiting for our last speaker to take the stage.  A young girl came over and quietly sat down at the table next to me. We sat there for a few minutes in silence when I said Hi. She looked up and smiled and we started to talk.  We made small talk for a few minutes then things got a little deeper. She started to share with me her excitement in the fact that she would be leaving for college in 2 weeks, a day she never thought would happen.  She  proceeded to share very openly what it has been like to live with  severe depression and anxiety for the past 6 years. She was very thankful that in the last year it seemed to have lifted significantly.  She said , I do still have some bad days, yet now, they don't defeat me like they used to.  I am able to get through them  knowing they won't last. She said the hardest part has been the fact that no one, neither family nor friends was able to truly understand what she was feeling in those deepest depressing times. She felt very alone yet knew God was and continues to be with her. She holds tight to his promises in the hard days. The next words took me by surprise. With such joy and peace she said " I know what it is like to feel alone, believing that no one understands. If I can help just one other person in the midst of my struggle  to know they are not alone,  I believe my purpose for going through all this will be fulfilled!"  My eyes filled with tears. I realized what a beautiful gift she has to give to others, the gift of truly understanding what they might be going through.

"In our suffering we often ask the question Why? Why, because it is not suffering that destroys a person, it is suffering without a purpose ."  Job; The wisdom of the Cross. Christopher Ash

There are many reasons why God might allow trials and suffering in our life . I do know one reason is that suffering prepares us to be able to come along side others who are struggling.  It brings us to a place of  deep compassion, and mercy which allows us to say with complete honesty, " I get it, I understand!"  Sometimes that is all they need to know, they are not alone and that someone truly understands.  God has purpose in our trials. Once in a while he lets us SEE that purpose.  That girl at such a young age has suffered much. Although still struggling, she is seeking to minister to others. Offering them the gift that was given to her. The gift of hope, and joy she has found through Christ! The gift of understanding. What an encouragement she was to me!