The Love Of A Donor

 At the end of December it will be five months since Noah received his new heart.  We are so grateful with how well his body has responded. He has had very minimal side effects this far.  He has been able to wean off a few medications, and is slowly adjusting to his new diet.

 

We have altered our lives in different ways in order to keep Noah safe as he slowly builds up a new immune system. Unfortunately for Noah this has meant saying no constantly to lots of fun invites. You can only imagine how hard that is for a college kid.  It's a small sacrifice however in order to keep him safe. We are very aware that this is a huge gift that has been given by the love of a donor.  Our hearts felt heavy knowing that this holiday season there was immense grief felt by a family who lost their loved one.  We spent time praying as a family on Christmas Eve that the Lord would meet them in their grief and that they would know how deeply grateful we are to them.  We are grateful to all of you as well for your continued love and support.  We hope and pray that you all had a wonderful Christmas.  

Audio Interview with the family

Q & A With Lietzau's

Click on the link above to hear our interview with Jonah.  We answer some of your questions and give you a window into how we are all doing during this time of isolation.  We continue to be thankful for all your love and support.

Noahs Transplant story Part 3

I woke up this particular morning feeling grateful. Grateful that Noah survived the surgery.  Grateful for his donor, and grateful that the first twenty four hours were behind us. They took the ventilator tube out,Noah was doing well breathing on his own, and he was now off a number of medications. The doctors were very positive about the direction he was headed. Because he was doing so well I made the difficult decision of going home and getting some rest. Every time his transplant doctor came in she was almost giddy about his progress. Jonah was coming home this day from his vacation with friends and I wanted to be there for him as well.  I knew Noah was in good hands with Jason and if anything arose we had an amazing team of people who could get me back to the hospital as soon as possible.. It was hard to not be right there with him every moment but I knew I was doing the best thing for us all. The last thing we needed was for me to end up in the hospital as well. I face timed Jason and Noah often.  By the end of this day Noah was talking.  It was a tired, shaky, out of breath voice but it was so great to hear him talk.  He also sat up in a chair. Thirty hours after a transplant and he’s out of bed sitting in a chair.  This was incredible to me.  

Noah continued to do well each day surpassing the doctors expectations. He was up and walking, eating , and meeting each days goals. I was preparing myself for a setback but it never came.  God was gracious to us and because of this gracious gift it allowed me the rest my body so desperately needed.  Day five he was moved out of ICU into a regular room.  Once in a regular room they started preparing us for what life at home with a transplant would look like.  We all learned about the many medications he would be on, what they all did, and how time sensitive they were.  We learned about the importance of a low sodium heart healthy diet and foods he would no longer be able to have.  Then we learned about the many weekly appointments for labs, tests, and heart caths/biopsy he would have in the first year after transplant..  It was a lot to take in for all of us.  Most of this we had heard about but until its your turn its really difficult to understand the magnitude of it all.

Noah was discharged on Day 8.  We felt elated to be bringing him home but also nervous.  There is a bit of comfort when he is being monitored by doctors and staff.  It reminded us of the first time we brought him home after his birth.  We brought him home and felt so ill equipped for the job but you figure it out and after some time you feel more and more confident.  We are figuring things out now and feel like we are in more of a rhythm.  Medications are going smoothly and we are learning how to make heart healthy meals.  

When we arrived home from the hospital we were greeted by friends, family, community, and even fire men who lined our street.  They were holding signs and cheering.  I can’t even describe to you the overwhelming feeling of love and care I felt. In one of the hardest times of our lives, we have seen such beauty and felt so much love from God’s people.  You all know how to love well its unbelievable to me sometimes.  God continues to use you to show up for us in the most tender ways.  The cross we have been asked to bear feels lighter because of you.

Noah’s Heart Transplant Story Part 2

After getting the update that the transplant was successful and Noah was in recovery, my sweet friend Amanda drove me to the hospital where Jason and her husband were waiting in the waiting room.  We were waiting to hear when Jason and I could see Noah and were told it might be awhile.  My body started physically responding to the stress of the last thirty hours.  I was having heart burn, indigestion,  I was light headed, and every muscle in my entire body was hurting.  I was frustrated because I didn’t want to feel this way when I got to see my boy. I wanted to be strong. In my mind I felt relief that he was through the worst part of it all but my body was not reacting accordingly.  When we finally got to see him in the ICU he was intubated with his eyes half open and I thought I was going to pass out. Intubated means he had a tube down his throat that was doing the breathing for him. The room was crowded with nurses and doctors coming in every few seconds.  I was in my pink power chair trying to stay out of their way, trying not to hit anything, and desperately trying to listen to their explanations of what they were doing for him.  They all seemed pleased and excited for us. I wanted to share in their excitement but I felt like I was going to pass out and the mask around my face was not helping matters.  I was beginning to have a full blown anxiety attack. The doctors told us he would most likely be sedated the rest of he day and that we were welcome to come back and forth as much as we would like. The transplant doctor told me to try and get some rest.  Thanks doc I’m trying really I’am. I wanted to ask her if she ever had a Childs heart taken out but alas I knew she meant well and was just looking out for us so I politely refrained. We left the room to let the doctors do their job and we went to the outside patio to get some much needed air.  My feet began to swell and I was growing concerned with how my body was reacting to the stress.  Since my heart doctor was right there at UCLA, Amanda and I decided to drop in and see if he would see me.  He was well aware that Noah had just had his transplant surgery and agreed to squeeze me in .  This was God’s grace to me.  I felt a sense of relief after he had checked all my vitals, reassured me that my heart was fine and validated that this was a stressful situation.  Since Noah was going to be sedated most of the day we decided to check into the UCLA Tiverton house down the road.  This place was a short walk from UCLA and is similar to a Ronald McDonald house for families of UCLA patients.  It was nice to have a place to rest close by the hospital.  The ICU nurses had us write our phone numbers on the big white board in Noah’s room.  They assured us that they would inform us if any changes arose.  This brought me comfort and allowed me to get the rest my body needed knowing he was in good hands.  Jason went later that night to see Noah. Noah was still on the ventilator but was starting to breathe more on his own. He was a little alert and understood what was going on and could communicate by writing. The nurses had the tough job of trying to read his writing.  He likes to blame that on his homeschool English teacher( AKA mom.) I had never been more thankful for technology when  I got to face time him.  I have to admit I almost lost it when he gave me a thumbs up.  I needed that more than he will ever know.

This day was hard for me.  I was feeling every emotion deeply.  Not only was I trying to come to grips with the fact that my son no longer had his original heart but I was feeling for the family who selflessly gave him his new heart.  This heart that once gave life to somebody else. My heart grieved for this family.  It’s a huge gift and  responsibility and one that Noah will process for awhile to come. I was feeling for Noah and all the changes good and bad that come with a transplant.  I was feeling for my husband and all that was on his shoulders and, of coarse my other two kids who were also processing it all in their own ways.  What brought me the most peace was knowing that none of this was a surprise to God.  He knew the exact date and moment in time, he knew the donor, he holds my husband and kids in the palm of his hand, and when we cry out to him he delivers us from our distress.  God’s grace to me was also answering a specific prayer I had over the last ten years.  I asked God to protect Noah’s heart so that we wouldn’t be in a emergency situation.  A situation where he was in the hospital on borrowed time waiting for a heart. Thank you Lord for your sweet mercy and for hearing our cries.

Noah's Transplant Story Part 1

 Friends old and new, family, community, and strangers new to our story, thank you so so very much for journeying with us.  I can not even believe all that has transpired over the last two weeks.  

Two weeks ago today we were woken up by a phone call at 4 am.  They first called my number and my phone was on vibrate.  When they couldn’t reach me they called Jasons phone.  When we saw the area code our hearts dropped.  Jason answered the phone and in a shaky voice he just kept saying ok.  He motioned to me to come over to the phone and I motioned back to him to get me up.  We both knew I couldn’t get up on my own but when your in a adrenaline situation all logic goes out the window for a second.  He put the phone on speaker and got me out of bed and into my chair.  We sat there hearts pounding trying to take in all that the transplant coordinator was telling us.  We have the perfect heart for Noah, you need to check in by seven am, have him eat something before he comes, he doesn’t need to take his meds.  We tried to listen but so much was going through our brains.  The biggest thing was Is this really happening?  Is our son really going to get a new heart?  We have been talking about this for ten years and we knew we could get a call at any time but nothing really prepares you for the moment you get the call.  We hung up and held each other for a minute taking in all we just heard.  We took a deep breathe and went and woke Noah up.  We brought him into the living room sat on the couch and delivered the news.  He sat there stunned and said ok.  I couldn’t fight back the tears and told him it would be ok that we have been anticipating this for a long time.  We prayed together and asked him what he needed.  We began to pack, make phone calls, and deliver the news to the rest of the family.

The ride to UCLA was quiet and seemed strange to me that life was still going on all around me.  I knew that this was big and that our lives were about to change significantly.  I knew this was all God’s plan from the beginning and to quote C.S Lewis “ I have no doubt that the Lord will be good to us I just don’t know how painful that good will be.”  I lacked the physical and emotional energy needed to get through this.  It would take the Lord’s hand and all of you to help carry us through and that’s exactly what happened.  You all took care of every need before we could even think of what was needed.  Your prayers and scripture held me together.  It took almost twenty four hours before they wheeled Noah to the operating room. It was the hardest thing to watch them wheel him away knowing he would no longer have the original heart God designed for him. My body was so painfully exhausted.  Dear friends of ours got us a nearby hotel room within walking distance to the hospital.  I took some Benadryl to help me sleep and my sweet friend stayed to take care of me so Jason could wait for updates.  I didn’t move for four hours and woke up in time to hear that the transplant was a success and he was in recovery.  Praise Jesus! (Part two of this story to come soon)

I saw the Lord’s hand in preparing our hearts for this very moment in some big ways. Exactly a week before the call Noah and I had a conversation about transplant and we were talking about what we thought would be the ideal time.  Essentially we came to the conclusion that there wasn’t an ideal time in our minds and that we needed to trust that God knows best.  It was good to have this moment and I believe God was preparing our hearts.  Also the week before we got the call our good friend Jason Oakes was preparing to speak on Luke 12:22-34 at our church.  If your unfamiliar this section of Luke was on Anxiety.  Jason Oakes emailed Jason and I to ask us our thoughts on how we deal with anxiety while walking through suffering.  This caused me to study the passage and read back through previous blogposts.  We invited Jason over to talk through some of our thoughts. He came over on Thursday. It was a great evening talking through the ways in which worry equals God forgetting and trust equals God remembering and how important it is to be seeking first the kingdom of God.  This would be helpful to me in the coming weeks. Not only myself but Jonah poured into this passage and it was most encouraging to him the week of Noahs surgery. Saturday Jason and I spent the day on our patio talking through a message I was preparing for an upcoming woman’s bible study.  We talked through Joy and pain in suffering and how they coexist.  We talked through our story and the crazy year we have had so far not knowing what would come the following week.  On Sunday Jason Oakes preached the Luke 12:22 passage and our hearts were encouraged to Seek First the kingdom of God instead of seeking our own kingdom.  Tuesday afternoon Hannah was editing her testimony for her upcoming baptism and she broke down in tears.  She was overwhelmed thinking about how sick her brother was and the fact that he was going to need a new heart.  This led to a beautiful conversation about transplant and all that God had done over the last ten years for Noah and our family.  These moments were not coincidental.  God in his goodness had been preparing our hearts right up until the very moment we received that phone call.  He didn’t stop there.  He continued and continues to provide exactly what we need.

Stay tuned for part 2

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I cried out to the Lord in my troubles, and he delivered me from my distress

 It has been a month since I was discharged from the hospital and my heart is full of gratitude for all that the Lord has done to restore my health.  We never saw the magnitude of this situation coming but as I look back I can see the ways the Lord was preparing me.  A few months before I got sick Noah’s UCLA team brought on a Cardiologist from the adult side and we met with him.  I really liked this doctor and his great bedside manner.  I appreciated the way he explained things and his bluntness.  It got me thinking that I really needed to switch my care from a pediatric doctor where I wouldn’t be able to be seen at a children’s hospital to a better team and hospital.  UCLA is not close but it is a great hospital with people who not only understand heart failure but have expertise with muscular dystrophy.  I got all of my paperwork transferred to UCLA and just a week before I got sick I was seen by Dr. Cruz at UCLA.  It was a good apt. and I walked away feeling like I had made a good decision in switching my care.  This situation would be confirmed when a week later I messaged him explaining how sick I was and less than 24 hours he was on a tele health video chat with me.  He urged me to come in and told me they would have a bed waiting and we could bypass the ER.  UCLA was incredible to me and I had total piece it was where I was suppose to be.  It was amazing to me how the Lord orchestrated the timing of it all.

Since being home I have been spending time meditating, reciting, and memorizing Psalm 107.  The main theme of this chapter of Psalms is “They cried out to the Lord in their troubles and he delivered them from their distress.  I saw this to be true over and over again in the hospital.  I can’t tell you how many times I cried out to the Lord for his mercy and every time he came through.  I would cry out to take away pain, to help me breathe, to allow my husband to be with me, to not be intubated, to go home, and to be able to go back to my baseline.  There were prayers he didn’t answer like me wanting to make it to Hannah’s baptism. When that happens I have to trust that his ways are better than mine.  They always are. Her baptism is just postponed but it will happen and what a glorious day it will be.  Im just so grateful.  Sixteen days  in the hospital was a lot and so many of you have told me you were scared I wouldn’t pull through.  My heart grieves for the pain you must have felt and if I’m honest there was a moment I felt the same.   I’m grateful for all of your prayers, love and support.  Our family has been given some unique medical challenges.  It is sometimes overwhelming to me both physically and emotionally.  Each time we go through something we get an opportunity to see the magnitude of the Lord and often times it’s by the way he uses you his people.

We are coming to you once again to ask for prayer for our family.  Noah’s heart failure continues to increase.  His numbers continue to rise and honestly the doctors are even surprised he’s still at home doing ok.  It’s basically a waiting game as we try to manage it with medications while we wait for a heart.  Our hope was Noah could improve and come off the List like he did so many years ago.  The doctors have all said this is not the case and that he really needs a heart.  I can’t get myself to pray for a new heart so I’m praying the Lords will for Noah and protection over his body.  I know the Lord has purpose in all of this and we pray that he would help us to lean on him and to give us strength to endure the next wave.

What happened to Mel?

 I have been struggling to find the words to share. Some of it is Covid brain and mostly I’m still processing all that occurred over the last month.  I decided to write to let you all know the details of what happened and how I ended up in the hospital. I want to do another blog post soon sharing all the ways God met me during this difficult time. I need time though.  This was a lot to endure both physically and emotionally.

The week leading to Easter Jonah came down with what we thought was a really bad cold after he tested negative for Covid. He had a really bad cough, sore throat, fatigue, and body aches. we isolated him.  Days later I began having the same symptoms except for me I couldn’t cough.  I have respiratory weakness and an inability to cough so this lead to me not breathing well.  On Easter I was feeling horrible and my oxygen was low. I had a terrible headache and couldn’t breathe well. We decided to go to the ER.  In the ER we were told I tested positive for Influenza A. They started me on meds and I began to feel a little better. I spent the night in the ER and asked to be discharged the next day. I felt like they weren't doing much that we couldn’t do ourselves at home.  Two days at home I started to get worse. It was really hard to breathe. I called my new cardiologist at UCLA. He did a telehealth visit and recommended we come in. He said he would call ahead to make sure they had a bed for us so that we could avoid going through the ER.  They put me in the Cardiac ICU unit. Lots of doctors flooded my room. The Cardiologist were concerned. My cardiac enzyme numbers were really high. I had fluid building up around my heart causing my feet to swell up like balloons. I couldn’t breathe well on my own and was choking on the phlegm I couldn’t get up on my own. They talked about intubating me if it got to that point and they also talked about the possibility of doing a tracheotomy. Praise Jesus it never came to that.  Pulmonologist and respiratory therapists were concerned. They tried putting a tube down my nose to suction. They came in and did breathing treatments every 3-4 hours. I had 26 heparin shots in my stomache to avoid blood clots. I had over forty blood draws and a host of grueling tests during my stay. I looked pretty bruised and battered.  I stayed on this floor for 11 days. I would take a step forward and then two steps back. One night I was in a ton of abdominal pain that caused my heart to go into tachycardia. It was scary as the doctors came in and stared at the monitor and at me and had meds on stand by.  I thought this was it. I was in so much pain and didn’t think I was gonna pull through this particular night. My heart stabilized on its own and I didn’t have another episode like that again. My oxygen was still low so they had me on oxygen and I was using my Bipap ventilator a lot during the day and night. Eventually I was just using it at night and slowly began to wean off of the oxygen.  It was an incredible saving grace to be discharged with no oxygen. 

I came home on breathing treatments and meds that I would take every four hours. It felt good to sleep in my own bed and to sit and feel the sunshine on my patio. This however would be short lived as Jonah came down with Covid the second day I was home. A wonderful family from church took him out of our home to stay with him but I still ended up getting Covid a few days later landing me back in the hospital for another five days. These five days were tough as I was in isolation and the first couple days alone without my husband. I begged and pleaded with them everyday to allow my husband to come. The Lord would answer that prayer and eventually Jason was allowed to stay with me. He had to suit up and could not leave the room. I was so thankful for him and all he did to care for his wife. The Covid team gave me meds and respiratory came in every 3-4 hours for treatment.  I was still struggling to breathe but as the Covid meds began to work my body responded well and I was able to come home again off of oxygen.  Praise Jesus!

Im currently off of all my breathing treatments and pretty much back to my baseline. This is huge and something I do not take for granted. Im very aware that this could have gone very differently. 

Im so so grateful. I can’t even put into words how thankful I’am for all of you who wrote messages, cards, emails, texts, meals, gifts,etc.  All of our needs were met because of you all. You made us feel seen and loved. Your prayers, scriptures, songs meant so much and helped us get through this valley.  Thank you for continuing to walk this road with us time and time again.  You show us what it means to be Christs hands and feet and you show us that there is purpose in the pain.  I have so much more to share and when my heart is ready it will come. Thank you for your patience with me. 

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.