God does not leave his children indefinitely in the depths of sorrow

 John Piper has this to say about suffering. There are nutrients that we draw out of seasons of suffering that are strengthening to the bones of our faith and sweetening to the marrow of our faith like we can’t get any other way. Eat them. Go ahead and eat them. As long as God keeps you in that season, don’t waste it by wishing and wishing, wishing you’d be out of it. Go ahead and eat the fruit that grows on that tree alone.  Savor the special promised nearness of the Lord. Psalm 34:18 says, “The Lord is near to the brokenhearted and saves the crushed in spirit.” There is a unique and special promised nearness that you will enjoy. Yes, that is a tearful, painful, true word you will enjoy that you will not have once the sun comes out again. Wait for God’s timing of healing and restoration. Psalm 30:5 says, “His anger is but for a moment, and his favor is for a lifetime. Weeping may tarry for the night, but joy comes with the morning.” I don’t think the point of that is about the clock, like sadness at dusk, joy at dawn every day. That’s not the point of that statement. The point is God does not leave his children indefinitely in the depths of sorrow. Joy comes eventually when dawn comes, and it comes in God’s timing. The older you get, the more you know that terrible things don’t have the same horrible gut punch as time goes by. In the moment of loss, when you get that phone call, that utter disappointment, that painful email, a dream is shattered, a massive disappointment, something you thought would never happen — and you feel in those first hours, “There’s no way I can live with this. There’s no way I can live with this.” God’s timing is very mysterious in its effects because the next day it’s a little different, and the next day it’s a little different. A week later it’s a little different. Everybody moves at different paces, but God uses time and grace to take away the sense of impossibility of life.

The last few weeks have wrecked me and left me broken. I have not wanted to be in this place again.  I do not want to watch my son go through this. Piper is correct in that each day it’s a little different and God in his grace continues to take the pain away as I lean into him.  I’am not unfamiliar with this place.  I have been here many times.  I have gotten hard news and wondered how I would move forward in humble obedience.  I have forgotten the ways God literally has carried me through my deepest painful times.  I know he will do it again and again. I know with certainty he will use every ounce of it for his good.  I know because I can look back and count the myriad of ways he has done so in my life.  A couple things that brought me comfort over the last few weeks were remembering that Jesus in his human form asked the Lord not once but three times if there was any other way please take this cup from me.  He understood the assignment but the thought of seeing those he loved suffer and enduring the pain was too much.  He knew the beauty that was to come but it still brought him to his knees.  I felt closer to Jesus these weeks knowing he understood my pain.  I was also reminded by a sweet conversation with a friend about the time Jesus was in the boat with his disciples and a big storm came.  The disciples were freaking out and Jesus was calmly asleep in the boat.   They woke him up and he told the storm to be quiet and the storm calmed and Jesus asked why they were so afraid.  Jesus was literally in the boat with them and they were afraid.  I could picture the crazy storm of my life and it made me realize I could run around in fear and trembling or I could snuggle up to Jesus under his warm calming embrace trusting that he can calm the storms of my life.  I want desperately to stay in the boat curled up next to my heavenly father.  The third reminder for me came at a funeral I attended yesterday of an incredibly faithful devoted servant.  The day he passed one of our elders told the wife that her husband was born for this day.  Wow! Such powerful words.  He was born for this day where he would get to meet his savior face to face.  We are so blessed to be created in God’s image, to be a vessel and imitators of him, and to get to spend eternity glorifying him. Im going to hold onto that powerful phrase.

Noah has officially been put back on the Heart Transplant List. The doctors feel that because they don’t know how quickly Noahs heart failure will progress this is best.  It also allows them time to accept the best heart for Noah.  We are still hopeful that it could be awhile before transplant.  Noah looks great.  His numbers are high but he doesn’t feel terrible.  This is encouraging to us and the doctors and also a bit confusing as he doesn’t fit the standard mold of someone with his condition. He is being closely monitored and we trust his team at UCLA. Our prayer is for Noah to continue feeling good for as long as he can.  Transplant is a wonderful life saving option.  However it comes with lots of pain as someone is losing a life to give the gift of life.  It is something we have a hard time praying for.  Our prayer has always been to heal and protect Noah’s heart.  Please pray for us all to walk in humble obedience, to trust the one who calms the storms, and to live boldly  for the day we get to meet our savior face to face.

What's going on with NOAH?

 What happened to Noah?  How did he end up in the hospital?  Weren’t you all just in Hawaii? I’m sure many of you have questions. In order to answer them all  I’m going to go back to give any new readers some helpful cliff notes. 

Almost ten years ago we found out Noah had restrictive Cardiomyopathy and we were told he would need a heart transplant. His heart wall was thickening and stiffening and his pressures were mildly elevated.  Noah spent two years waiting on the heart transplant list.  He was monitored regularly with the transplant team. After two years his pressures came down and he was moved to a status seven which is a inactive hold and he remained there for almost another two years.  We then, with the advice from the team decided to remove him from the list.  Noah has remained stable up to this point.  This past fall semester Noah began to feel a change in his symptoms.  He was getting out of breathe walking to classes, more chest pain, fast heart rate, and over all more fatigue.  The team decided to give him a holter monitor(this is a heart monitor used to check the electrical activity of the heart). We had a Telehealth apt. in November.  They decided based on Noah’s new symptoms, and a couple things picked up on the holter that they would do a heart Cath in December.  The heart Cath revealed that Noahs pressures were elevated but even more concerning was the elevated BNP lab.  BNP is a blood test that measures levels of a protein that is made by your heart and blood vessels.  When the levels are higher than normal this indicates damage to the heart and heart failure.  The team decided to put Noah on a diuretic to help remove fluid that may be building up around the heart.  This would help off load it and help the heart not have to work so hard.  We were told not to postpone our trip but to go and enjoy and repeat labs when we got back.  During our Hawaii trip it was clear to me that Noah was more tired than usual. I knew in my gut this felt different and that we were headed on the transplant list. We returned home on a Sunday, Noah had labs taken on Tuesday, and Wednesday UCLA called and said we want you to come in and see the team on Thursday.  On Thursday morning they did an ultrasound of the heart and it was concerning.  Noahs heart was now having problems dilating.  The heart’s ability to pump blood is lessened. Because of this, his elevated pressures, and his high BNP they decided to admit Noah and also do all the work up to get him back on the heart transplant list.  They first started Noah on a strong heart medication to treat heart failure.  They did not see any significant response so they weaned him off and tried another medication plan.  The goal was to get Noah stable enough to wait outside of the hospital.  He will be monitored closely.  He sees the team again next week.  Our hope and prayer is that the Lord would grant more time and Noah could avoid transplant again however it is very likely given Noah’s current symptoms that he could end up in the hospital waiting for a heart.  

I will share in the next blog post how we are all processing this information.  It has been a lot take in as you all can imagine.  One thing that is hard for people to understand is that when you see Noah he looks fine, he doesn't look like someone you would think needed a new heart.  Trust me its hard for us. his parents to understand as well.

We covet your prayers and ask that you would pray with us for God to protect Noah’s heart and move mightily through his story.

Joy And Pain

This last week our family was fortunate to take a trip to Hawaii.  It was pretty surprising that the trip happened given that we had to cancel it twice in the last two years. It took so much to make it happen. We had to Quarantine the week before, covid testing and fitting in the trip before Noah went back to school so we could all be together but we did it. We set off last week with eagerness and excitement. I wish I could say it was everything I had hoped it would be. However If I’m honest this trip was physically and emotionally rough. I knew it would be physically difficult but wasn’t expecting the flood of emotional pain. Grief is a funny thing that sneaks up on you sometimes. I couldn’t escape my grief even in a beautiful place like Hawaii. I was faced with it head on. It was continually smacking me in the face and it was unbearable at times. I found myself often feeling so guilty for being deep in my pain and having moments of not being able to be content.  I could take in Gods beauty and appreciate it but the pain of my circumstances and the losses of others was so strongly felt. It took so much out of me physically just to get t o this beautiful place. From the first day What should have been a five hour flight turned into 8 hours. When we landed in Oahu we were stuck on the Tarmac for over two hours. My body was hurting.  All my muscles were cramped, my feet were swollen, and I wanted so badly to be laying in my bed. We normally navigate the air port in my transfer wheel chair. Being without my power chair that is custom made just for me and my needs was difficult. It was also the first time I had to use the special isle wheelchair on the plane. Because our seats were in the back and it would have been too much to try and hold onto somebody to make it all the way to our seats. They basically strap you onto a metal board on wheels and you lay your arms in your lap and try not to get your limbs smooshed down the aisle. Luckily they let you on first and also bring you off last so your not a spectacle to the other passengers. it is a super tight ride. many times on this trip I was in physical pain on the brink of tears trying to hold it all in so my family wouldn’t feel bad. I pushed myself hard and my spoon reserve ran low. I also felt heavy for Noah constantly as I watched him feeling tired and  similarly not participating as much.  I couldn’t stop thinking about his future challenges, his current heart failure, and wondering how he was processing it all. I was grateful to have time with him and one of the highlights of our trip was taking him out to a special dinner with just Jason and I. Being in the same resort we stayed at six years ago gave me a clear picture of just how much this disease has progressed and made me sad and caused me to think about the future losses to come. Six years ago Jason and I shared a sweet memory of being in this beautiful adult only spa that over looked the ocean. While enjoying our time It started raining on us and it was a special time that is forever cemented in our memories. We went to enjoy that same spa. Hoping to have another beautiful experience together. It just wasn’t the same. It was so much work to just get me in the water and once in I couldn’t keep my head up or lean up against anything. We tried everything to Make me comfortable and quickly realized it just wasn’t going to work. This was so hard for me to get over. I felt sad, disappointed, and defeated. I felt sad thinking that I might have disappointed my husband . The Lord quickly reminded me that yes he’s probably disappointed and that’s ok. It is completely ok for him to be sad and disappointed. You are disappointed too.  He is also grieving these things. You don’t have to feel responsible or to blame but you have to let him be disappointed. It was good for me to hear the Holy Spirit in that moment because I can so often feel responsible and to blame. I don’t want to be the cause of others pain and disappointment. I had to remind myself that as much as I believe that God is using all of this in my life I need to believe he is using all of it in Jason’s as well, and in Noah’s, Jonah’s , and Hannah’s. That includes disappointments. He is meeting them all in their grief as well. 

I was in the word everyday and doing all that I could to reorient my focus frustrated that this was taking up space in my mind. I pushed myself hard to do things that I knew would take a toll on my body the next day. Those moments and memories were sweet and painful. Joy and pain coexisting together.  I was grateful for many things on this trip. Thankful for sunsets, thankful for Pineapple Dole Whip, thankful for being able to lay on a raft in the ocean with my husband and kids, thankful for sweet lounging with my husband, thankful for new experiences and connection. Most of all thankful that Jesus meets me in my pain and he doesn’t leave me there. Joy and pain. The Psalmist and Paul in the New Testament has taught me that they can coexist at the same time and that it’s ok as joyful Christians to feel pain and grief simultaneously.

These words from Paul Tripp were a sweet reminder to me this past week of Gods goodness to his Children. He says; Next time you face the unexpected, a moment of difficulty you really don’t want to go through, remember that such a moment doesn’t picture a God who has forgotten you, but one who is near to you and doing in you a very good thing. He is rescuing you from thinking that you can live the life you were meant to live while relying on the inadequate resources of your wisdom, experiences, righteousness, and strength; and he is transforming you into a person who lives a life shaped by radical God centered faith. He is the ultimate craftsman, and we are his clay. He will not take us off his wheel until his fingers have molded us into those who really do believe and do not doubt.

I’m so thankful that he never leaves us in our pain he is always molding us into his likeness.

New Update On Noah

 Noah had a heart cath on Monday to check the pressures in his heart. Thank you so much for those prayers. I wish I had positive news to share. Noah’s pressures were high. The same as they were when he was first listed for transplant nine years ago and his BNP that measures heart failure was crazy high. The plan is to put Noah on a Diuretic that will help remove a lot of fluid that is building up around Noah’s heart making Noah’s heart having to work harder to pump. They want him to also take an ace inhibitor that helps with heart failure. He needs to repeat labs in two weeks to see if his BNP numbers lower and we will see the team in a month. They will do another heart Cath in 3-6 months depending on the labs and his symptoms. We are good with this plan but also concerned about his high numbers. We are thankful at this time that they do not need to list him. Our prayer requests are that Noah’s numbers would drop and he could remain off the transplant list, also that Noah would be able to process all of this well and be responsible for taking his meds and taking care of himself which is not always easy for any college student. Thank you for continuing to walk this hard road with us. We are grateful for you all.

I'm Writing A Book

 I realize it has been a good while since I have done a blog post. This is always a good thing in that it typically means our life is somewhat stable, from a medical standpoint anyway 😀

One of the reasons for my absence is that I have been doing a lot of writing. With the encouragement from some dear friends and many of you who have followed my journey, I have decided to write a book. I can't believe I'm even saying this out loud😳. Yep! I'm attempting to write a book. It feels strange  because I still don’t view myself as a writer but nonetheless I’m enjoying the process. The book I’m attempting to write is on Suffering. The purpose of the book is to help people shift their perspective from why me to why not me when walking through hard trials.  It will help people walking through difficulty learn how to see God’s purposes in their lives so that they can fully trust in his sovereign plan.  It gives a glimpse into my life and reveals the ways that God met and continues to meet me in the darkest of times. My prayer is that God would put words to pen and it would be an encouragement to so many. I have included many of my previous blog posts from years past. I have a wonderful supportive team and it will be an answer to prayer to one day see this come to fruition.  I’m often amazed how God as I’m re-reading these posts has used these words to preach back to myself.  My mom was just over the other day and I was telling her how God is using these posts from years past to minister to my heart.  She pulled out a page from an old blog post I wrote that she keeps tucked in her purse. It was a blog post that I wrote many years ago explaining how I view my situation as a blessing.  It was like a balm to my heart. I so needed to be reminded of those words as I have not been feeling well. The Lord truly does draw near to the broken hearted. I think sometimes we miss it because we are expecting the Lord to take our hard completely away.  We have expectations on what we think it looks like for the Lord to draw near to us. However the Lord draws near in ways that are good for us. sometimes that means not taking the difficulty away but helping us walk through it. 

I pray that if you are walking through something hard that you would be able to recognize how the Lord draws near and I pray that it would be a sweet balm to your heart as well.

Noah Update

It's been quite awhile since I have given you all an update on Noah. Its crazy that we started this heart journey and facebook page Noah’s Heart when he was just nine years old.  He is now eighteen. An adult.  I’m still learning how to parent an adult child and Noah is learning to have Grace with me. I feel the need to be careful in my blogging as this is now Noah’s story to share so I want you to know he has granted me permission. Noah just finished up his first year at Biola.  It was not the year he had hoped it would be.  It was filled with many disappointments but he is very much looking forward to being on campus in the fall.  He recently bought his first car and got a job working at the Whittier Chick Fit A.  You can only imagine how excited his momma is😋  I’m grateful for so many things about his journey but mostly how God has sustained his heart and health.  In so many ways we have witnessed a miracle in his life and so many answered prayers.  To date he has been off the heart transplant list now for five years. This is a huge thing to celebrate and quite frankly a big miracle.  Why is this a miracle?  Well because to be honest Noah’s heart looks terrible.  We have been told by many doctors that he has the scariest EKG they have ever seen. Not comforting words for this momma. The one time we had Noah get his EKG without us we forgot to warn them and the poor tech kept asking Noah if he was feeling ok while she called for several doctors to come in.  The report has been like this since he was nine.  It presents like he is having a heart attack but no symptoms to go along with it.  His heart is still weak and he still has Restrictive Cardiomyopathy.  His pressures however are still good so as long as they stay good he can remain off the transplant list.  He is monitored every three to six months.

For those of you that are new to this blog.  Noah and I both share a rare form of muscular Dystrophy called Desmin Myopathy.  It is a slow progressive disease that over time weakens all of your muscles.  Our heart conditions are a symptom of the disease.  Even though Noah and I share this disease it presents very differently in each of us.  Our heart conditions are different and even our muscle weakness has presented differently.  

I asked Noah the folowing questions about living with Desmin Myopathy and this is what he had to say:

What has been the biggest challenge for you? 

Noah: Learning to accept that I have a disease with no cure.  I think when your younger you just kind of accept things as they come and don't really understand the weight or impact of things.  I’m not angry at God for it but I struggle to see how God is going to use me with it.  I’m not a writer like my mom so I dont’ see myself blogging about my journey 😀

What do you wish people knew about your disease?  

Noah: That I don’t want to be treated differently. That I don’t want to be defined as the sick kid or the guy with the heart condition.

How can people pray for you?

Pray for continued stable health and less doctor appointments :) Pray that God would deepen my faith and understanding.

Incline My Heart

I have been struggling and thinking through my limitations. Truthfully a lot more than I should or care to admit. Thinking about where I once was, and the struggle to see where I am. I have battled so much insecurity. This is a new one for me. I have always been relatively confident in my own skin. I’m at a stage in my journey where I depend on so many people to just function on a normal day. Its incredibly difficult to continually ask for help and even more difficult to trust that the person really doesnt mind doing it. It takes vulnerability, courage, thick skin, grace, patience, love, kindness, humility, and so much more. Basically all the fruits of the spirit and the qualities Paul asks us to put on in Colossians 3. I’m sure this will be a battle for the rest of my days. Some days I just really dont want to be needy. Everything in me just wants to do it myself. I just heard a toddler voice as I was writing that sentence 😂

I battle with my heart for contentment and look closely upon my control for comfort. When my heart is inclined toward God, I’m more willing to surrender to my story and look for the beautiful ways God’s present grace shows up. 

A prayer of David in Psalm 119: Incline my heart to perform your statutes forever, to the end.  This is David’s prayer for God to make his heart decidedly fixed for God.

I have talked about this before but its just so true in my life. When I’m able to fight the flesh and fix my eyes on Jesus and incline my heart toward God. I get to see the beauty in the hard and the assurance that he is not wasting any of it. I want to stress the “When I’m able” part though. I’m an imperfect sinner in need of God’s redeeming love every single minute of my day. I pleed with God like Paul did to remove the thorn even when I'm confident the thorn is good for me.

I have realized lately as I have struggled with being needy that I don’t think my faith would be what it is today without this thorn. I’am so much more aware of my need for Jesus. I can’t go through out my day with out being totally dependent on him to carry me through. I’m learning little by little that being needy isnt always a bad thing. It helps increase our faith because we are not relying on our own strength to carry us through. In my situation it pushes people to enter in and gives them an opportunity to serve in sacrificial ways. I have seen this play out in both strangers and loved ones. Last month my sweet husband took me to get a pedicure. He sat in a chair next to me and a lady watched him help me into the spa chair and lift my legs in and out of the water for the nail tech. The lady that was watching stopped by my husband and handed him some money. We were shocked by her generosity but it left a bigger impact on my heart. You see it gave me eyes to see that God is using this thorn to work in the hearts of those around me as well as myself. I have a friend whose boys are always so willing to help carry me down their flight of stairs each time I come to visit. Just last night as I came over for dinner they were waiting with smiles. These are teenage boys who are getting a lesson in sacrificial giving. Their willing hearts bless my heart so much. When I allow myself to stop and look at how the Lord is blessing my neediness it helps me appreciate the thorn and work through my insecurities.

How are you seeing the beauty in the hard? Are you sacrificially giving of your time to help others?

Is your Heart inclined toward God? I would love to hear the ways you have been encouraged.