Noodle Soup Part 1

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 café 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! 

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.

https://www.sarepta.com/pipeline/exon-skipping-duchenne

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, 

Amen

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!
https://youtu.be/mgCInn5dr4g

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.

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!

A wave of grief and a moment of joy.

I don’t spend a lot of time thinking about what Ryan can and can’t do. In fact I try very hard not to think about it. Once in a while though, it sneaks up out of the blue and hits me. It  takes me by surprise ,then  grief overcomes me. Last night was one of those times. I was sitting on the couch, minding my own business when my neighbors’ son pulled up into their driveway. I looked out the window and saw that he had a few friends with him. They piled  out and started chasing each other around. He looked so tall, so strong, and it hit me, reality.  He is the same age of Ryan. Their birthdays are only a few days apart. They are both 17, soon to be seniors in high school. I sat and watch him for a few minutes, and then sorrow filled my heart. That is what my son should be doing! That is what he would be doing if it wasn’t for the Duchennes. Reality.

It is times like those that bring to light the reality of what Ryan has lost. At this point, the list for what he cannot do has far exceeded what he can do. It is getting harder and harder for him to have any sense of independence. Today I was watching Ryan as he drove his chair into his room. He reach down to the stand alone air-conditioner, turned it on, then a few minutes later he went back and turned the temperature down. I got to thinking, he does this quite frequently throughout the day. I wanted to cry as I thought about it, watching him do this simple task seemed to bring him so much joy. An air-conditioner? YES! Why? Well, Ryan can control it. He can turn it on and off, he doesn’t have to wait or ask for help, this is one thing he can do, independently!  It may seem like a little thing, it isn’t driving a car like my neighbors son, but it IS something Ryan CAN do and I WILL take it, as small as it might seem, and celebrate it!

Sometimes it is a little thing that can bring a wave of grief, and sometimes it can bring about a moment of  joy. For today I am choosing to see the joy in a little thing that to most  probably seems minuet, but to us we will celebrate it as a small victory of independence for Ryan! 

Courage

cour·age

Strength in the face of pain or grief.

In the past few weeks, the word courage and courageous have been attached to a very well-known celebrity because of his choice to mutilate his body. He is being celebrated and being called courageous for trying to become something he was never meant to be. I am not trying to start a debate on whether or not he should or shouldn’t. Just stating that what he is doing is not my idea of courage. Let me share with you what I think courage looks like in everyday life!

A few weeks ago I was driving home when I noticed a women in a power wheel chair on the side of the road. As I drove past, I quickly scoped out the situation. She was being pushed by a teenage boy and I could see how much he was struggling to push her through the dirt and gravel. It took me all of 30 seconds to do a u-turn and head back down the road to where they were. As I got out of the van and walked toward them I immediately knew, from experience, what happened.  I asked her if her battery died on her wheelchair. The women looked up at me and in a laughing voice said YES! I told them I had a wheelchair van and asked if I could give them a ride home. (It was a rare occasion that I didn’t have Ryan with me). The teenager looked relieved and the women, who I believe had cerebral palsy, said in very strained, broken language, that it would be wonderful!

So began the fun of getting the chair up the ramp into the van. You have no idea how hard it is to push these power chairs. They are 350 +lbs. So the teenager and I struggled, pushing from too high up and about tipped her forward. We stopped and I asked her if she had her seat belt on, which she laughingly said, ALWAYS! We once again started to push, this time practically on our knees to get her up inside the van and then making sure she was securely fastened.

It was about 2 miles to their house and I asked her how she managed to run her chair out of battery. She said she worked at the mall and must have driven around a little too much!  I found out that she works at the mall, and that she drives her chair that 2 miles to catch the bus to get to work.  As we pulled up at her house I couldn’t help but notice she had a very long steep driveway, great this should be fun! As we very carefully backed her out of the van, making sure not to let her chair go to fast, another woman from inside the house came out to help. We did manage to get her up the driveway and safely into the house. She thanked me and I got into the van and drove off.

 I couldn’t help but think about her all the way home. I wanted to cry, well I did cry. I was so very thankful that I was able to help her.  I was thankful that I was driving down the road at just the right time!  I thought about her and how she never stopped smiling, it didn’t even seem to rattle her, I would have been in tears, bawling, if it was me!  I was also encouraged as she shared a glimpse of her life with me, that she had a job and was able to catch the bus to work, she found a way to have some sense of independence! Now THAT is what courage looks like!

I think of her when I hear the word courage, and many others.  I see courage every morning in my son Ryan’s face when I go into his room. He very rarely complains as I roll him from side to side, dressing him, and then lifting him into his wheelchair. He knows what his future hold, he can’t change that, yet he faces each day with courage and a peaceful spirit!
 I see courage when I see my friends teenage daughter, who was paralyzed in a gymnastic accident go back into that same gym, whenever she can, to help coach and encourage her fellow teammates.
 I see courage when I see another friend’s young daughter, fight a rare disease that affects her liver. This disease causing among other things, uncontrolled itching. I see her making jokes about her itching, happily helping her mom clean house, and even fight with her little brother!
 I see courage as I have watched my friend, who lost her 3 young daughters in an accident, fight for the strength and courage to get out of bed every morning and face each difficult day.
 I see courage in my friend as she is losing her mom to Alzheimer’s. Each time she sees her, she is losing more and more of the mom she once knew, yet she courageously never gives up seeking to find new ways to connect with her mom.
 I see courage in many parents as they are dealing with children with some very hard circumstance. They hug and wipe away tears from their children’s face, answering hard questions, comforting, encouraging, reassuring. They courageously manage to hold it together only long enough to be able to lock themselves in their room and let the tears flow!

 These people cannot change their circumstances but each one, in their own unique way, are finding ways to face some very difficult circumstances with courage! I am not saying these battles are easy or that they don’t get discouraged yet they have found a way, in spite of the difficulties, to courageous live each day to the fullest!

We all know people who have and continue to face challenges. I have only mentioned a few yet I know many more. Who in your life would you say is living life courageously? Please tell me, who do you think of when you hear the word courage? Please share their story and even a picture! Let’s be reminded what courage really is and what it looks like in real life!