Christmas Reflection

A few years ago we created this timeline as a way to look at how our disease and medical journey has transpired.  We have since updated the time line to add events from the last couple years.  I did not put down every ER visit, test, doctors apt. etc.  I just highlighted the main medical events.  

As I reflect back on this timeline I’m filled with many emotions.  Mostly gratitude for the ways God has carried us through.  I also feel hopeful because I know that God will never give his people trials in which he will not sustain them and bring them through to everlasting glory.  This is not to say I don’t grieve my losses on a daily basis.  I certainly do but I grieve with hope.  The Hope and Assurance I read from 2 Corinthians 4:16-17 that says: So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

I hope this holiday causes you all to pause and take time to be still. To reflect and think about what you are putting your hope in. Hope is found in the promises God has given us – promises of freedom from sin. We can find so much hope in Scripture through the gift of eternal life made possible through His son, Jesus Christ. So on that first Christmas night God not only came down, He came WAY down. As Yancey puts it in his book, THE JESUS I NEVER KNEW, Unimaginably the Maker of all things shrank down, down, down, so small as to become an ovum, a single fertilized egg barely visible to the naked eye, an egg that would divide and re-divide until a fetus took shape, enlarging cell by cell inside a nervous teenager.? To rescue us GOD became MAN and he entered this world in the same way any man does as a tiny BABY. He is our Hope. No matter what trials, temptations or pain we may suffer, we can always hold onto the hope God extends to us. I hope you all Have a Wonderful Hope Filled Christmas.

1977- Melody was born and it was a normal delivery

1989- Melody could not keep up with her peers when it came to physical activity, always came in last for the mile and walked most of it, was nicknamed peanut because I was super small.

1997- Began having syncope episodes which led to pace maker implantation for complete heart block.

1999- Jason and Mel get married

2003

- Noah was born six days past my due date.  Complicated birth which led to an emergency c-section.  My lungs began to fill with fluid, my heart rate dropped and so did Noah's. Noah hit all his milestones early and we never saw any signs of MD early on.

2005

- Melody underwent emergency pacemaker surgery to replace a lead wire.

2006

-Jonah was born.  Planned c-section.  Healthy boy.

- I had dropped a significant amount of weight this year after just having Jonah and was now under weight and we started to become concerned.  Got my thyroid checked, blood tests, saw a nutritionist etc. No real explanation.

2007

- Noah starts T-ball and we notice lack of coordination but didn't associate it with anything and never found it cause for concern.

- I had pacemaker surgery to replace another lead wire

2008

- I became pregnant with our third child and miscarried at 10 weeks. We prayed about adopting and submitted our application almost to the day of Hannah's birth.

2009

- I began to trip and fall occasionally.  We just chalked it up to me being clumsy :)

2010

- We flew to CHINA to adopt our beautiful daughter who had a multitude of heart issues the major one being poor oxygen due to only having a single ventricle. Double inlet left ventricle, pulmonary stenosis, VSD, ASD and too many others to name.

- 3 days after being home Hannah goes into major heart failure, we were given a 30% chance of survival if they operated or the option to keep her comfortable and she would not make it through the night.  God performed the first of many miracles and she had her first successful open heart surgery.

2011

- I was still falling and hadn't gotten any answers about my weight loss. After being referred to a neurologist we discovered it was a form of MD.  Which one though? Lots of tests, biopsies and doctors visits.

2012

- Noah complains of chest pain a few times.  we don't think much of it but remember being encouraged by Hannah's doctor to get EKG on our boys.  I took the boys to get tests and got a phone call that afternoon that I needed to take Noah to the Cardiologist right away.

- We were able to take Noah the next day and I was told that they might have to airlift him to UCLA or admit him to CHOC.  We were stunned and confused. UCLA  agreed to let us take him first thing in the morning.  More tests, trouble with insurance, a switch to CHLA then back to UCLA.

- May 30, 2012- We were told Noah had Restrictive Cardiomyopathy and would need a heart transplant.

- September 19 2012- Noah was put on the transplant list as a Status 2.  Lots of meds, monitoring, caths, and procedures became our new normal.

2013

- Our family goes on a make a wish trip-Disney Cruise to the Bahamas

-Tons of fundraisers put on by friends and community

- I purchase my first wheel chair-pink of coarse for longer distance walking

- Pacemaker surgery to replace battery

2014

-Genetic testing confirmed that both Noah and I have Desmin Myofibrillar Myopathy a rare form of Muscular Dystrophy.  We find out that both our heart conditions are symptoms of the disease and that it manifests different in every person.  We find out that it is a slow progressive disease that will effect all of our muscles.

- Jonah is tested and the results are negative- Praise the Lord!!!

- Hannah has second open heart surgery "The Fontan" to place a shunt to help the blood flow to her heart and they also implanted a pacemaker in her abdomen.

- Melody finally breaks down and decides to listen to doctors and gets her first set of AFO's(foot and ankle braces).

- Melody gets adaptive equipment put in her car as her legs become to weak to drive.

- Discovered weakness in Mel's swallowing and breathing

- Melody started being seen at the UCI MD clinic and learned that her breathing numbers were very weak.

- Bi-pap was delivered as well as a cough assist machine to assist with Melody's breathing

2015

- Noah moved from a status 2 on the list to a status 7(in active) Praise The Lord!!!

- continued progression of weakness for Mel

-Started walking with a cane

- We sold our house in La Habra

2016

-Noah began getting out of breathe frequently and was referred to the CHOC MD clinic

-we learned Noah's breathing numbers are mildly weak

-Noah receives his cough assist breathing machine

-Noah gets diagnosed with Torsil Coalition and has foot surgery

-Noah comes off the transplant list(Praise the Lord)

-Noah has a hard time physically getting around at summer camp and keeping up with his friends doing anything physical.

-Because of more weakness in Mel's legs she gets her first pair of full leg KAFO's but unfortunately they do not work out.

- Bought a new home in La Mirada close to church, friends,school and support

** Updated Below

2017

-Melody has surgery to insert a G-tube.  This was a much needed surgery and helped to gain 6 pounds.  It has also increased energy and made it easier to get meds and nutrition in.

-Melody has three surgeries in 6 weeks. Making it four surgeries in 10 weeks. Melody had a Ventricular Tachycardia episode that made her heart stop for 11 seconds.  It was determined Melody needed a defibrillator.  Many complications led to two more additional surgeries.

-Melody starts using a walker to get around easier at home.

- Melody now needs help getting dressed, and turned in bed

-Through overnight testing it was determined Melody needed to be put on a liter of oxygen at night.

2018

-Melody, Jason, and Noah fly to Minnesota to visit the Mayo Clinic.  We met with a doctor who is a specialist in our rare disease. We leave feeling encouraged that research is being done to help people with this disease.  Also thankful to finally find a doctor familiar with our disease.

-Noah begins to show weakness in hands, feet, and abdominal muscles

- Melody continues to get weaker and has a hard time walking without the aid of another person.

-Jason has an unexpected seizure like episode and is taken by ambulance to the ER(everything checks out fine) he follows up with many tests that all come back normal.

Hannah Turns 10

For those that have been following our story for the last eight years will understand what an amazing feat Hannah turning ten is.  Our sweet girl has had two open heart surgeries, been on oxygen, had a pacemaker put in, meds, and many doctor appointments in the last almost eight years that we have had her.  She is our miracle girl.  Hannah has double inlet left ventricle which means she only has one functioning ventricle, many holes in her heart, and array of other things.  After her two surgeries she is doing amazing and you would never know by looking at her all that she has endured.  She is a constant reminder of God's beautiful grace and mercy.  I realize that many of you who are new to my blog may not know her story.  You also may be thinking I knew about Noah and Mel but not Hannah.  It's hard to believe but Hannah's story came first and we don't talk about it as much as the rest of us because praise Jesus she is more stable and doing AMAZING.  Below is an article sharing Hannah's story from the Orange County Register and her homecoming video.






https://www.ocregister.com/2010/05/28/little-girl-mends-hearts/

https://vimeo.com/10399991






https://vimeo.com/10883744

  

Mayo Update

As I reflect back on our week in Minnesota I’m grateful for so many things.  Grateful for the Lord's provision in making this trip a reality for us. Grateful for so many peoples prayers and support. Grateful for visits with long time friends and Grateful for the opportunity to have so many appointments and tests with incredible doctors all in a weeks time.

I had heard many incredible things about the Mayo Clinic but it more than surpassed our expectations.  It is an incredible place.  I have never experienced anything quite like it.  What do I mean?  Well for starters every doctor we met with spent over an hour with us and it was clear that they studied our files and talked with other doctors at the Mayo clinic about our case.  They have a team approach.  They all work on Salary so they have the gift of time.  Everything is done onsite.  Every test, lab, research etc.  In CA we see doctors and specialist all over town.  Every procedure is scheduled weeks out, and different companies have to mail things out to you.  At mayo we were able to do tests, procedures, labs, x-rays, and many doctor visits all within a week.  Some tests that the doctors wanted after we saw them we either did same day or next day.  I joked with Jason that everyone of the staff must take Happy pills.  Everyone seems to love their job and treated you like you were very important to them.  Everything is run so efficiently and set up super well  even for people who have disabilities.  They have special needs restrooms available on every floor, the check in Kiosks you can move down to wheelchair level, the drinking fountains are normal and wheelchair height and have dixie cups for those that can’t drink from the fountain.  They really thought things through.  People come from all over the world come get care from Mayo. If you want to know more Ken Burns did a documentary that aired on PBS this week.  You can go to PBS.com to watch it. After my first appointment I downloaded the Mayo Clinic app on my phone.  This gave me access to my schedule, labs, test results, and comprehensive doctors notes and records(they take amazing transcribed notes after each visit).  All of these things are downloaded on my app within an hour of completion.  I was able to see my x-rays, blood test results, doctors notes etc.  I have had other portals here in CA but nothing is ever loaded and the doctors don’t put any notes from your 10 min visit.  The place is huge and I can’t say enough great things.

Our main reason for this visit was to see Dr. Selcen.  A doctor who has the most expertise with our specific rare disease.  When we first met Dr. Selcen we got the impression that she was just as excited to see us.  She has a passion for studying Myofibrillar Myopathies. If you look up Myofibrillar Myopathies you will see her name all over many of the publications. She is a research doctor and sees other patients with our particular Myopathy.  She is brilliant and every doctor we encountered talked about how brilliant she is.  She spent close to two hours with us at our first appointment and we met with her a total of three times.  She explained what was going on with the genes to cause this Desmin protein to aggravate the muscle fibers.  We felt like we gained a ton of understanding and felt hopeful that she is working hard to find a way to help this Myopathy.  She gave us some handouts on some current studies that are being done.  She recommended a couple antioxidant supplements.  They have done some testing and have found that one may help to slow down the aggregation of the protein in the muscle that is causing the weakness and the other helps keep the muscles that haven’t been effected energized.  They are over the counter and is no way a cure but they have found it to help.  We are looking forward to giving them a try and keeping in contact with her as more questions and symptoms arise.  She is a part of a Desmin Facebook page that she invited me to.  It’s a place to connect, share symptoms, hear about Dr. Selcens research and advances.  I told her I was passionate about helping to educate others especially doctors so they can help others that may be struggling to find a diagnosis.  She had Noah and I take pictures and video for educational purposes.  So thankful to have met her.

Another reason for our visit was to get some clarity and direction on Noah’s heart condition.  This was another positive experience.  We met with a Pediatric Cardiac transplant doctor named Dr. Johnson. This doctor knew Both Dr. Chang and Dr. Alejos our current doctors here at CHOC and UCLA.  He had wonderful things to say about them both.  We love our doctors but have felt unsettled on the fact that they do not agree with one another and it has made us question if we are doing everything wended to be doing.  Noah came into this appointment really wanting to understand his heart condition.  He left feeling like this was the first doctor to really explain everything to him.  Dr. Johnson explained to us that most people with Restrictive Cardiomyopathy do not survive past two years and that most of them do not even make it to transplant.  This is why they put them on the Transplant list right away.  This is why Dr. Chang has been concerned with him being off the list.  Dr. Johnson agreed that his EKG is one of the scariest he has seen.  However his Echo looks amazing and doesn’t make since with his EKG.  His pressures and heart looks good for someone who has RCM.  Since his EKG has been the same since his first one at 9 years of age you have to assume that its because of his muscle disease.  Dr. Johnson agreed with UCLA to keep monitoring him every three to six months and if his echo starts to look bad to list him immediately.  We asked him if he has ever seen anyone get better with RCM and he said NEVER.  Dr. Selcen brought up the point that it will be better to be transplanted  before his muscles get weaker.  This is something we will have to consider in the future.  We came to the realization that it will be a decision that Noah will have to make as he will be an adult in just a couple years.  He understand this and I think its one of the reasons he really wanted to understand his condition.  We left this appointment  feeling more at peace about the decision to keep him off the list for now and feel more confident in our doctors at UCLA. 

My visit with the pulmonologist was difficult.  She was a wonderful doctor and really helpful in explaining how my breathing muscles are being effected by my disease.  It was disheartening to see such a big decline in a year and a half.  She talked through the tough things ahead like trachs, and 24 hour ventilation. These things could be far down the road but it seems like we get closer all the time.  It’s difficult to hear the hard things but also good to prepare our hearts and minds.  My visit with the cardiologist was good.  My echo looks really good.  Even though I’m stilling having v-tach episodes, the fact that my ICD hasn’t gone off is good.  If it starts to go off then there are other meds and treatments that can be done so we felt hopeful.

This is really long so I will end with a heartfelt thank you.  Thank you to those that our invested in our story and care enough to walk along side us. Thank you for all your prayers and words of encouragement.  We felt so lifted up by all of you this last week.  

2 Corinthian 4:16-17

So we do not lose heart, though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison.

T- 3 days

T minus 3 days until we hop on an airplane and travel to MN to visit the Mayo Clinic. I have been feeling a mix of emotions as the time draws nearer. I mostly feel deep gratitude for how smooth and evident the Lord’s hand has been all over this process. It started with a conversation with a friend that led me to think about going. I have known about this specialist there that has done research on our rare disease. Just the fact that she has seen patients with our condition is helpful. I called Mayo Clinic thinking I would have to jump through many hoops and many phone calls to make this trip happen. This was not the case. The First Lady I talked to took down my insurance info and set everything up while on the phone. She registered me and told me to send all my medical documents over.  I thought this next step would be difficult so I went in person to two of my doctors to see about getting my medical files. Both places had me sign a form and printed them out right there on the spot. Whaat??? I expected to be directed to another building wait forever to sign papers and have them mailed. Nope not the case. I scanned all my documents and explained to them that I wanted to meet with a certain Neurologist at Mayo who had expertise with our disease. I told her we were willing to fly out and could spend a week. The doctor then called me herself and got more information about what we hoped to achieve at our visit. She then said she would set up apts. and procedures, and labs for us and looked forward to meeting with Both Noah and I. We got our apt. Schedule soon after that. Not only was that process smooth but we found out that Noah’s transplant Fund would cover the expenses for our trip. The Lord has provided for everything and I feel such deep gratitude. I wish that were enough, but I also feel very anxious. I’m nervous for some of the answers to some tough questions we have. Nervous for new information. At the same time I’am Hopeful. Hopeful to see someone that understands this disease and could possibly give us some encouraging news. New possibilities. I’m trying to pray boldly believing that God is big enough to give us some relief from the hardship of this disease if he chooses. My head knows that I should be ok either way trusting that his plan is Better than my own but my heart wants some relief.

Would you all pray for this trip? Pray that we would get answers regarding Both of our heart conditions. That we would get some clarity on Noahs lungs, that we would hear some encouraging new advances regarding our muscle disease, that we would get good encouraging answers to our questions. That we would process information well. That we would help Noah process things well. That we would be a good support to one another. That we would lean on the one who is bigger than disease and hardships.  

I was encouraged this week by Joseph’s story in the Bible. The suffering of Joseph physical, mental, and emotional agonies had been allowed by God so that Joseph could fulfill God’s plan to save many lives. I want to have a response of willingness, faith, humility, and meekness so that God can use me to fulfill his plan.  We would appreciate your prayers so much. Hoping to blog updates for you all during the week.

Melody

Overdue Update

I’m so sorry for not updating about Jason sooner.  To be honest it has been difficult to know just how to update when we are still left with not a lot of answers.  I kept pushing it off hoping I would have something better to give you. The biggest thing to celebrate is that all tests have come out looking fine. We are still investigating but are thankful at this point that there haven’t been any further episodes or cause for concern. No news is sometimes good news.  It took a few weeks for the nerves and anxiety that it might occur again to go away. Thankfully we all understand that  just like everything else that occurs in our family it’s all out of our control.  So we press on knowing and trusting in the one who is sovereign over all things.   

We will get another opportunity to practice patience and trust in a few weeks.  Jason, Noah, and I will be visiting the Mayo Clinic in Rochester MN.  When Noah and I were first diagnosed with Desmin Myofibrillar myopathy I researched it like crazy.  Unfortunately there wasn’t a lot I could find.  I did find a doctor  who did some research on it and wrote a few publications.  Her name is Dr. Selcen and she works out of the Mayo Clinic.  She has actual patients with our same disease. This is a big deal because all the doctors we see are not as familiar with our disease.  They can treat the symptoms but not really help with what to expect.   We had talked about going over the years but Noah was on the transplant list and life just happened.  The Lord put it on my heart again as I was chatting with a girlfriend and  he has literally helped make this trip happen down to every last detail. We leave September 22 and Both Noah and I have appointments and procedures all week long.  We would really appreciate your prayers.  We are really hoping to get some answers and gain some understanding on several big areas of our disease.  More on this in another post.  Because there is no cure for our disease these appointments can be difficult.  We know we will hear many things that will be hard to process. We are hopeful also to hear some solutions and possibilities from doctors who have experience seeing patients with our same disease.   Would you please pray for our time.  I’m hoping to blog more about our experience so we will keep you posted. 

Thank you for continuing to be our support.  We are so grateful.   

Another unexpected ER trip

So you all know that our family has been through many terrifying moments, but last night we had a situation that shook me to my core.  I’m still processing, trying to cope, and trying to help my kids work through it all.

Jason came home from work around six o clock. He walked into our room where I was helping Noah pack for his Japan trip.  He walked into the kitchen, took a bite of a muffin, walked back into our room and sat down on a chair.  He said he didn’t feel well.  I begin to ask him questions and he had a hard time answering.  Out of the blue his eyes rolled back into his head and he fell back into his chair and had some convulsions.  He was unresponsive, I was yelling for him to wake up, my other two kids ran into the room and witnessed this all happening.  I called 911 and while I was on the phone with them answering their questions he came to.  He was very confused, pale, and still not feeling quite right.  The paramedics came and took him to the hospital.  It was a whirlwind and I had never felt so helpless.  I was trying to console my younger two, while my oldest put on my shoes so that I could get to the hospital.  When we arrived to the hospital  Jason looked good and the doctors were running some tests.  The doctors are unclear why he had this episode.  We will follow up with his regular doctors today and go from there.

I never thought I would be writing an update like this about my husband on this blog.  He is our Rock, our healthy one.The one we rely for everything. I’m thankful in so many ways.  Thankful that it wasn’t worse, thankful for Noah and the ways he stepped up for me and was so calm.  

Please would you all pray for Jason, for our kids, for me as we process this and move forward to get answers.  Thankful for you all.

Bio And Q&A

Last month I had the privilege of being apart of a panel at a woman’s conference, and also had the opportunity a week later to share at a woman’s study.  The first Conference was on Counting it all joy, and the second was on handling life when your dreams are shattered.  I was so very grateful for the opportunity to share at both these venues.  It always gives me the opportunity to recount the ways Christ has been so faithful in my journey.  It encourages me to take a look back and to see that yes my body is so much weaker today but the spiritual growth is so much more vibrant and thriving. It encourages me to keep pressing on and to keep leaning in to the one that holds me in the palm of his hand.

 There are several new readers and so I thought I would recap my story and answer some of the wonderful questions I had received at both of the venues I was apart of.

To start,  I’m Melody I have been married for 18 years to my wonderful husband Jason, We have been blessed with three children.  Our oldest boy Noah is 15, our youngest son Jonah is 12 , and our beautiful daughter Hannah is 9. I will try to give you a brief background. Their is so much to tell but I promise to make it brief. Here is my background story. I grew up with a single mom who was an alcoholic drug addict until I brought her to the Lord at the age of 14. It was an incredible story of God’s redeeming power. When I was nineteen I had a pacemaker surgery for complete heart block. I was told if I had gone much longer without the pacemaker I would never have survived. I got married to my best friend at  the age of 22.  We had two boys and at the age of 31 I had suffered a miscarriage which ultimately led to our desire to adopt. In 2010 We brought home our precious daughter from China.  Three days after being home with her the doctors told us to prepare ourselves that she wasn’t going to make it.  She had a very complicated heart condition and they gave us a 30 percent chance of survival.  God chose to breathe life into her frail body and after two open heart surgeries she is thriving. A year later I was diagnosed with Muscular Dystrophy(Desmin Myofibrillar) and was told all the muscles in my body would slowly begin to atrophy and that there was no cure.  A year after adjusting to that news our oldest son was diagnosed with Restrictive Cardiomyopathy and put on the transplant list. He has been stable enough to come off the list but his heart is still very much sick. At the end of the same year we learned that not only did our son have this awful heart condition, but he also shared the same rare form of Muscular dystrophy as I. We are slowly starting to see some of his muscles begin to deteriorate. Last year I had a total of five surgeries, four of those in 10 weeks. This is just a snippet of our story. Woven through are incredible opportunities of seeing God at work, incredible answers to prayer, and a deepen faith.  

Question 1.  What lies were you tempted to believe during particular trials? How did God meet you in that to give you hope?

One of the biggest lies for me was that I felt like I couldn’t really be purposeful for the Lord.  I never realized how much of a works based mentality I had inside. I had these big dreams of adopting again. I enjoyed being involved in so many capacities at church. I was the type of person who was always serving and running to the next need.  Now that I wasn’t able to(the way I had desired anyway) I felt like I was un purposeful.  The Lord has slowly showed me how ridiculous that is. He has shown me that really all I have to do is be still and allow him to work through me.  He really doesn’t need me to do anything at all except trust in his goodness.  The book of Luke is a good example of this When Jesus visits Mary and Martha and he is more pleased with Mary who sits at his feet than Martha who is distracted trying to do everything.  

The other lie was feeling like a burden to everyone. I still struggle with this. I often forget how much joy it brought me to be able to love and care for my friends and family.  Its hard to be weak and frail and have to ask and require so much help.  It’s good for others to be given the opportunity and to be the church to one another.

2.) John Piper talks about fighting for joy in our Christian lives. He says that you cannot just flip a switch and "have joy". God has to give the joy and our job is to fight for it and to put ourselves in position to receive it. Do you think this is true when facing trials? What ways do you fight for joy or put yourself in a position to receive joy during a trial? 

Yes I agree 100% I think one of the ways to do this is to re orient our focus.  It’s super hard to get our eyes off of our circumstances. For many of us you just cant escape the hardship, its in your face constantly.  In the morning I have to make a choice to get up and focus on the promises of God, my future hope, and the things I’m thankful for or I will be a mess.  I know this because many days I’am a mess.  It’s a fight and a daily surrender. Look what Paul said about his trials in 2 Corinthians 6:10. He says: “Sorrowful, yet always rejoicing, poor yet making many rich, having nothing,  and yet possessing everything.” Paul said he was at the same time “Sorrowful” and yet still “rejoicing”. To have joy in trials is not to deny pain.  It is to recognize the fact that they can exist together.  they can co-exist in the same way that an expectant mother can go through labor and birth and still have joy in thinking about what is to come.  she has joy because she has the right focus as she considers this new baby that will be birthed into the new world.  In the same way, believers must have the right focus in order to have joy in their ongoing trials.

What did suffering teach you about God? What do you know to be more true about God now that you wouldn't have known otherwise?

It taught me that God’s not doing this to me but For me. It’s so that the works of God can be displayed.  Let's face it, it's a struggle to believe God is for us when we're drowning in pain. Even Jesus felt abandoned in the midst of His suffering, saying, “My God, my God, why have you forsaken me?” (Matthew 27:46) The refrains of God being a good God can sound hollow when our hearts and lives are broken. 

It's true that suffering that's not transformed by God is destructive. It leads us away from Him and into despair. But if we'll go to God with our pain, not only will He comfort us, He can work miracles with it. He can transform our greatest pain into our most significant triumph. 

Paul is a great example of how God redeems suffering. Paul experienced never ending hardships and persecution (2 Corinthians 11:22-33). But, his suffering produced an internal and eternal growth. It allowed him to experience God’s power in ways he couldn't otherwise, it gave him a deeper compassion for others, and it allowed him to be part of God’s work on earth. 

Understanding that suffering has a purpose doesn't always help us persevere through it. Thankfully, Jesus showed us what to do.  Jesus overcame His suffering, so we can overcome ours. As we keep our focus on Jesus, He comforts us through our suffering, allows us to experience His presence in ways we otherwise wouldn’t, and uses it for good in ways we can’t imagine.

I hope to answer more in a future blog post.  For those that are old and new to this blog thanks for visiting, I hope you leave feeling encouraged.  I’m so thankful and overwhelmed by your love and support.

What’s Going on With Noah???

(warning this is a long one)

First off I want to give big hugs and thanks to everyone for all your prayers.  It has been a crazy couple of weeks.  We are tired but super thankful.

A few weeks ago Noah called me from school to tell me that he was having chest pains.  This is not unusual for Noah to have occasional chest pains, however these were different.  They were significantly painful and instead of only lasting a minute, they lasted for over an hour.  When I went to pick him up he was clenching his chest and very uncomfortable.  I called Jason and we made the decision to take him to CHOC ER.  At CHOC they did an EKG, chest-xray, and labs.  Besides Noah’s scary EKG that he’s had since he was nine(it looks like he’s having a heart attack), everything checked out fine and we were sent home. Five days later he had a follow up with his pulmonologist(lung doctor). This doctor was following up on a recent sleep study he had. She wanted to run some labs and also check his iron levels.  We went last Monday and on Thursday she called me very concerned about his labs.  His BNP(which is used to check for heart failure) had more than doubled in a week and she told us that we needed to see his cardiologist right away. Since it was after hours when I got this call I left messages for both UCLA and his main cardiologist out of CHOC. His main cardiologist Dr. Chang texted me and asked me to come by in the morning. When we saw Dr. Chang on Friday morning he did EKG, and Echo.  He said his EKG was even worse than before.  He wanted us to go get labs drawn.  He talked with the team at UCLA and if Noah’s numbers from the labs were elevated they wanted him admitted to be able to see what was going on and available to run any further tests.  Well those numbers were elevated and Friday night we were admitted.  They did labs every 4-6 hours and the numbers went up and then stayed the same.  Noah looked great the whole time, his spirits were fine and they were all confused.  He had a few episodes of chest pain that lasted only minutes and nothing seemed to show up that would explain why.  There are different opinions within all the doctors as to why he has chest pains and why the numbers go up without any other signs of heart failure.  They eventually let him go home Sunday and will continue to follow up in a few weeks.  

We don’t have answers which can be frustrating. We just know he still has Restrictive cardiomyopathy,unexplained chest pains, a scary EKG, elevated BNP and troponin levels,he does not need to go back on the list,  and his pressures look good.  I spent the whole weekend just angry and frustrated.  Noah was trying to celebrate his birthday with friends, we were going to celebrate with family, we were going to pick up our new kitchen table, and it was hard on us to be at UCLA. I was embarrassed that we once again had drama in our lives.  I was having a pity party to say the least.  Monday I had to repent. I had a long talk with the Lord.  I was having the worst attitude.  I was not having a heart of gratitude. I was not showing patience. I was not appreciative of all they were doing to care for my son.

 We were on the same floor of the hospital that we visited so many others kids who were there in heart failure waiting for a heart.  We were at the same hospital that my dear friend kissed her husband and said goodbye to for the last time.  I had so much to be thankful for Yet I was concentrating on how much I thought this was negatively effecting my life. I couldn't see past self. This is such an emotional process.  I’m so grateful for God’s word though. Just this last week we were studying Colossians 3:12-17(The Put on Chapter)12 Put on then, as God's chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, 13 bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. 14 And above all these put on love, which binds everything together in perfect harmony. 15 And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. 16 Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. 17 And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.. 

  In the last chapter Paul was addressing Christians and telling them to Put off their old self and in this Chapter he was telling us what to put on.  It would be so easy for me to stay in my pity party and look to myself if I wasn’t in God’s word.  God’s word is transforming and this particular passage reminded me how important it is to be thankful and why.  I have been chosen by God.  SERIOUSLY how cool is that? Friends we have been chosen. It is because of what God has done for us through Christ that we are able to reflect these spiritual attributes that he asks us to put on. Christians are to be characterized by an attitude of gratitude about everything. Yes even spending a whole weekend in the hospital with your son. Why? Because we know that we do not deserve anything. Everything comes to us as a gift of God's love. Verse 17 "Whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him." I’m so thankful to have so many people in my life that reflect the qualities in this passage. That help bear one another’s burdens.  That spur me on and encourage me daily.

We are giving Noah up to the Lord daily, praying that God will continue to work in his life both physically and spiritually.  We know that their is beautiful purpose in this and none of it is wasted.  Thank you once again for your continued support in our lives.  What a blessing you all are to us.

Answering tough questions

This semester I’m doing a ladies bible study and we are going through the book of Judges.  This question below came up in our study and decided to share with you my thoughts.

Has there ever been a time when God has dramatically weakened you (physically, financially, emotionally, etc) to teach you to rely on him?  Describe that time.  What did you learn about God?  About yourself?  About your fears?

Has there ever been a time God has dramatically weakened you to teach you to rely on him? Describe that time-  This one is most likely obvious to all of you and didn’t take much thought or time for me to come up with an answer.  In the past seven years my physical body has dramatically been weakened and continues to each day.  I wish it was just for a time but unfortunately it is ongoing with no end or cure in sight.  When I was first diagnosed and my body began to weaken it was extremely difficult for me to accept help and come to terms that this was my new reality.  I realized that I thought I had to be doing and serving to be purposeful in the Lord.  I had to rely on the Lord to show me how he was going to bring purpose in the pain.  He has been faithful to show me beautiful ways that he is using this but it is still a battle and I’m growing all the time.  When it gets hard I have to remind myself to rely on him to provide the strength when all I want to do is escape and retreat into self pity.

What did you learn about God?  I learned and am still learning that God didn’t do this to me but is doing this for me and others.  It’s really not about me at all.  It’s always, always, always about him.  I just get to be the vessel that he uses to bring glory to his name.  I learned that his promises are true that he never leaves me or forsakes me.  I learned that he is the provider of all good things.  I learned that he knows better than me and his ways are better than mine.

What did you learn about yourself?  I learned and am learning that I’m super stubborn as heck.   You know the toddler stage when they say “I do it myself” yep thats me. I don’t like to appear weak and have fought hard even when it would make my life and those around me easier.  example-braces on my feet, cane, wheel chair, breathing machine, and pretty much all equipment.  I learned/am learning that I’m always fearful of being a burden on people.  That I rely too much on my own strength instead of the Lord.  That In the past I found my joy and purpose in doing instead of just being still in the Lord. That you can still be used by God just by being still.  I’m still learning things and being confronted with my ugly sin.  Just a few weeks ago when Jonah went to Sacramento for a Junior theatre festival.  I was so bitter and angry about my disease.  I would have given anything to be with him on that trip.  I was very involved in theatre growing up and this kind of stuff excites me.  I was jealous of the other parent chaperones and just grieved hard.  Even in the grief I felt the Holy spirit asking me if I had the choice to go and feel joy for a weekend would I choose it over feeling the joy of knowing God is using this terrible disease to bring glory to his name. Even if it lasts the rest of my life.  It is such an inward battle for me of knowing without a shadow of a doubt that he is using this, and wanting that to be enough but still feeling heavy grief over each loss.

About your fears?  I learned that they come when I  feel like things are out of control and I try to control things myself or think I have control. God is usually pretty quick to show me he is in control and that I can trust him.  One good example of this was when Noah wanted to go to Japan last year.  I worried about his heart and health and asked Jason to go with him.  10 weeks leading up to the trip I went through 5 surgeries with the last one being days before he would fly out.  Jason knew he couldn’t go while his wife was recovering from heart surgery and I wasn’t about to let Noah go without him.  Noah looked me in the eyes and asked what I was afraid of.  As I began to tell him my reasoning did not seem like it was appropriate.  You see my biggest desire for my kids is that they would grow in the knowledge and love for their savior and want to serve him all of their days.  Here he was wanting to go serve the Lord and share Christ and my fears were standing in his way.  I let him go and honestly I believe that God used all five of those surgeries to get me to that place. I learned that my fears keep me from fully trusting the Lord.  From believing that he is fully sovereign over all things He is continually growing me in this area.

Maybe you all can resonate with these words. Maybe this question causes you to think about a time God has dramatically weakened you. I pray that whatever you are going through that you would allow yourself to be vulnerable with people.  God uses his people to be his ministers and encouragers and we all need each other. Thank you for continuing to walk this journey with us and I promise to give an update soon.