The Pain of Grief

 

This week has been full of a myriad of emotions for me. Monday was the first day of school for both Jonah and Hannah.  It was exciting as Hannah was starting High School for the first time and Jonah was entering his senior year but also sad as the realization hit for Jason and I that this was Jonah’s last year of High School. There were many sweet moments as I watched Jonah be the greatest big brother and Hannah have so much fun being on campus with him.  I’m grateful for their close bond.  It will be a fun year for the both of them.

As the week continued, the days got harder. I learned that one of my dear friends who has been battling cancer for the past year and a half went to be with the Lord.  While this is a wonderful thing for her to be with her heavenly father, the grief in my heart and those that love her has been heavy. Tracy and I grew close because we could relate to one another in a unique way. We both had an understanding of what it means to be touched by physical suffering. Even though we would both never choose this path for ourselves, Tracy would often say that she was thankful it brought us together and that we were on an island together. Praying for one another and entering into one another’s burdens helped us keep our eyes off of our difficult circumstances.  It was a privilege to walk along side her. I miss her deeply and I long for more time with my friend. I will do my best to live by her example of persevering in faith.

Yesterday was another emotionally difficult day.  As many of you know my form of muscular dystrophy is a slow progressive disease. This means that all the muscles in my body including the muscles that help me breathe will weaken over time.  It is becoming more of a struggle to get enough air to talk and my breathing is continuing to decline.  I have now been set up with a portable ventilator that straps to my power chair.  I will have access to a sip and puff device to give me the extra support I need outside of the home.  While I’m grateful for these devices my heart is heavy with grief.  Every constant stripping away tears at my heart.  I feel the heaviness of this loss not just for myself but for those that love me.

Its been harder to fight for joy this week. I know Satan would love nothing more than to prey on my weakness so I’m going to fight. I will run to substance and the promises that have continued to carry me each and every day.  I will take Tracy’s beautiful example of living out Isaiah 40:31 but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. I know that although my outer body is wasting away my inner body is being renewed day by day just like Paul talk about in 2 Corinthians 4:16. I love John Pipers words on grief and his acknowledgement that its real and its right.  He says however that “God does not leave his children in the depths of sorrow. Joy comes eventually and it comes in God’s timing.”  

This is a hard week and I will take the time I need to grieve these losses.  I’m not alone the Lord draws near to the broken hearted and I don’t grieve as one who has no hope.  This also he will use and I’m confident it will deepen my faith.  If you think of me please pray that I would fight for joy and run to the one who holds me in his hands and that I would not fear that this would become a barrier for people.  

Grateful for you always.

One Year Heartiversary

 We are approaching the one year anniversary of Noah’s Heart transplant. It's this coming Friday and it’s hard to believe that it’s been a year already. I have reflected a lot about that day and receiving that anticipated call about a heart for Noah.  I have thought about how different our lives are now. I have thought about the donor family and have written many drafted letters thanking them for the gift they gave our family. It's hard to write a letter of this caliber. Thank you just doesn't feel like enough. I'm hopeful with the help of the Lord to send it out on the anniversary date this Friday. We have had an array of emotions but if I had to sum up the year I would say it has definitely been a year of gratitude and adjustment. 

Gratitude for a miriad of things. Protection over Noah’s body as he adjusted to a new heart not originally designed for his body. Gratitude for the Donor family who made a sacrificial gift in the midst of their grief.  Gratitude for our quarantine time that was hard to be away from family and friends but also sweet as we had time just the five of us. Gratitude for community who continued to step in to provide for our needs in countless ways. Gratitude that Noah could continue at Biola and is still on track to graduate in the spring. I honestly could fill up pages with the things we are grateful for and the ways we saw the goodness of God in the midst of the hard this year. 

It's also been a year of adjustment. Transplant comes with many medications that are constantly being adjusted and switched, many doctors apts. labs, and tests. New and unexpected viruses from the transplant heart that brought many adjustments with medications and hospital stays. Many phone calls from the team. Things change constantly and we have to adjust. In seasons of sickness and flu it meant missing out on activities and events. This was hardest on the kids who missed lots of fun school activities.  There was adjustments to new diets as we learned what foods to avoid and ways to eat more heart healthy. A year in I can say we have adapted well to these adjustments, it has become our new normal, and the Lord has been gracious to us. 

How are we all doing? I never quite know how to answer this. Emotionally? Physically? All of the above? This is always a loaded question and the answer changes constantly.  Short answer is we are all doing remarkably well at the moment and thriving. 

Noah- He will have his heart biopsy on July 31 to check for any signs of rejection. They will do this annually. He has been in summer school and he plans to graduate from Biola this spring with a degree in accounting and then he will have another year for his masters program in accounting and then hopefully take his CPA. We are so proud of him and how hard he has persevered through all of life’s challenges. (Look for a more detailed post about Noah's health on the Caring Bridge site later this week.)

Mel- I continue to fight for joy and persevere through the physical losses of my disease. Adapting to changes with physical pain, continual loss of my voice, and more breathing support has been the biggest challenges this year. The Lord is showing me his sweet mercy and growing my faith and understanding of who he is in the midst of these challenges. I have pushed myself to do hard things like physical therapy in the pool where we are seeing huge benefits.  I have continued to work on my book with a team of amazing editors. He has also been allowing me to use my hard to minister to and comfort others walking through suffering. I see this as a gift.

Jason- I'm so grateful for this rock of mine. Since Jasons' lay off we have spent time praying and seeking what the Lord has for him next. After much prayer, we feel confident that the Lord is asking us to use our story and our situation to serve him in a bigger capacity.  We are stepping out in faith to listen to the Lord’s leading on this and are currently working on some of those things now. We hope to share more about this at a later time. The Lord has been gracious to us in providing for our financial needs each month and we are confident he will no doubt continue to provide in the months ahead. We would appreciate your prayers. It has been a gift to work side by side on these things together and Jason has graciously stepped into the role of my full time care giver. 

Jonah- Is ready to take on the world( or at least his high school) as this years Senior Class President. We are excited for him and ready to soak in every last moment of his senior year. He is involved in so many capacities and it is going to be a fun year.  Jonah has enjoyed three full weeks up at Hume this summer. He also spent a week at a leadership conference at Pepperdine College. He has spent many days practicing with the guys from his band, gotten up many early mornings to go surfing, and has enjoyed working at CFA. It’s been a great summer.

Hannah- I’m still in denial that our girl is about to head off to high school. I draw comfort that she will be on campus with her big brother this year. Hannah has already experienced a little bit of high school by taking a summer school course on campus. This allowed her to make more friends and get a class out of the way.  She enjoyed two weeks up at Hume, a week long theatre workshop, and lots of hanging out with friends. She is already looking forward to school starting.

Continue to pray that we would have hearts and lives that are overflowing with the power of God's love so that we can extend that love to others, make a difference in this world, and bring honor to Him.

Paul reminds us in 1 Corinthians 13:8 that ".God's Love never fails."

Jason's Thoughts

I always love when Jason contributes to the blog.  Please enjoy his words below:

 In our current season of life, it can feel like things move so quickly and at times feel a bit out of control.  Little things or comments can remind me of how fast life comes flying at us.  A few weeks ago, I took my daughter to school as I normally do.  I was backing the car out, making my way through the multiple cars parked in our driveway when my daughter jokingly said “just wait Dad, in a couple of years when I start driving we’ll have one more car in our driveway.  Just when I am trying to come to terms that my last child is graduating 8^th grade and moving into High School, she is reminding me that in a couple of years she will likely be driving.  It does not seem like that long ago when our kids were in the diapers and temper tantrum stage and that all I wanted was for them to be older.  Now, I actually miss those days.

This year so far has brought a lot of transitions and changes as well as updates on the medical front for our family (and we are not even halfway through the year).  Noah is about to hit the one year mark since his heart transplant in July.  As my wife mentioned in a previous post, Noah was hospitalized back in March with a virus that came from the donor heart.  The particular virus Noah has is a common virus that many of us have in our body and in a person with a normal immune system the virus is kept dormant.  For Noah, with his immune system suppressed, it became a serious complication and he had to be admitted into the hospital back where he was given high doses of an antiviral med.  Thankfully Noah began to respond to treatment…which took some time…and he was released after a week stay at UCLA.   One of the side effects of the high doses of Antiviral Meds is that it caused Noah’s White Blood Cell Count to drop to an extremely low level so we have periodically had to administer an injection at home to raise his WBC count.  Unfortunately my first attempt at administering an injection did not go well (I only got to practice on an orange in the hospital) and Noah ended up with a huge lump and a bruise on his arm.  Thankfully, someone from our church who is a nurse was willing to step in to help (I’m not sure Noah will ever let me give him an injection again). 

Overall we are thankful Noah seems to be fighting this virus and was able to return back to School.  We are thankful that his professors have been working with him to complete some of the work he missed which will allow Noah to complete his semester and stay on track to graduate in May 2024.  This is quite an accomplishment given Noah has spent a total of 21 days in the hospital since he started at BIOLA.

Also, the other big change/update this year is that I was laid off from my job in February.  This was not a complete surprise but it has caused me to step back and really seek the Lord in what He has next for our family.  As we are walking in this season which feels uncertain, we know that God is fully in control.  So we have been taking sometime to really ask the Lord what’s next…and whatever that is we want to be faithful and obedient to walk the path God has for us.  This has come with a mix of emotions but it has also taught us a deeper understanding of what it means to trust the Lord and has provided some time for us to stop and really listen to His voice.  In all honesty, this has not been particularly easy for me.  So often it is just easier for me to find my comfort and security in having a plan or a clear direction but God has chosen to challenge my faith and understanding of who He is in this season of waiting.  He has chosen to expose my weakness and areas of my life where I struggle to fully trust Him.

Over the last few months, I’ve spent some time meditating on 1 Corinthians 1:18-31.  In that passage Paul says “God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong.”  God chooses and has the power to use our weaknesses and our shortcomings which goes counter to our world’s wisdom, so that God gets the glory.  As Paul says at the end of 1 Corinthians 1 “Let him who boast, boast in the Lord”.  My prayer, is that in my weaknesses I would fully submit and trust in the strength, goodness and sovereignty of God.   

On the mat again

 This has been quite the month for the Lietzau’s.  I have to be honest I was enjoying a little bit of calm and feeling like I was able to pour into others who were in the valley.  I felt like for once I was the friend carrying their loved one on the mat to the feet of Jesus. That time didn’t last long as we find ourselves once again on the mat. I’m ever so grateful  however for precious friends like so many of you who willingly carry us to the feet of Jesus.  

Noah was admitted to UCLA hospital today. Almost a month ago Noah started having fevers and was so tired he couldn’t get out of bed for over a week.  Lab results showed that he had a virus that was passed down from his donor heart.  Because his white blood cell count is dangerously low and his body is not responding to the anti viral meds for the virus he will need IV infusions and injections for several days or weeks.  

Jason also was laid off his job last month.  We knew this Could be a possibility and we are trusting the Lord to provide the perfect job for him.  We are thankful for Gods provision this far and allowing Jason the ability to care for Noah during this time.

This is a lot but I was reminded by a friend today that even though these set backs are wearying, God is not weary in caring for Noah and our family.

Thank you for your continued prayers and your constant support of our family.

God's Grace

 I’m feeling overwhelmed with gratitude this morning as I think about God’s grace to me. I would love to share with you all a few examples of his tender loving care in hopes that it would encourage you and remind you how much your father deeply cares for you.

 I was thinking back to many conversations I had with the Lord over the last ten years pleading with him to protect Noah’s heart.  I wanted so badly to be shielded from seeing Noah collapse and suffer a heart attack or be in the hospital on borrowed time hooked to machines as he waited for a new heart.  I told God I would trust him no matter what but confessed my heart couldn’t help but be anxious and weary about walking that road.  It’s not something that held my mind captive on a daily basis but the fear would creep in from time to time and overtake me.  I talk a lot about how happy I will be when we get to heaven and no longer have to fight the flesh.  What do I mean when I say this? This is what I’m referring to.  It will be so nice to have perfect complete trust free of fear and free from battling our sin.  To always be looking vertically instead of horizontally.  I long to do this well but know I will never be able to do it perfectly here on earth. I will always be fighting the flesh until I get to heaven. 

God was so gracious to me in his timing of Noah’s heart transplant. He allowed Noah to be at home with us the morning we received that dreaded phone call.  A few months earlier and Noah would have been living in the dorms.  Noah’s heart was super sick but he didn’t feel terrible and it really didn’t interfere much with his day to day activities.  This was God’s grace to us because I did not have to watch my son suffer.  Almost six months out and Noah continues to do well with no complications.  I don’t want to lose sight of what a huge gift from the Lord that was and is to all of us.

God continues to put people in my life that show me his goodness in beautiful unexpected ways. Many of you know that I have been writing a book documenting my story and the ways God works in the hard.  It has been quite the undertaking that has been full of high’s and lows. I have questioned many times whether or not I could really do this.  When I have been in those moments it seems every time the Lord brings me the encouragement and assurance I need to keep going so I have continued to walk in obedience knowing that these will be his words not mine. The Lord has provided some amazing editors who have given of their time, talent, and resources to help me.  One saint in particular who did not know me or my story has spent hours of her time.  We FaceTimed yesterday and got to finally see each other and meet for the first time.  I can not even tell you how much I have learned from this beautiful lady. She does not know me, she lives many states away, and has asked for nothing in return. It has been a joy to interact with her and learn from her. She is so encouraging and is championing me to get this book to publication.  I got off the phone and wept.  God’s goodness to us is just so sweet.

Another beautiful reminder came in the form of service.  Years ago I got a referral to a massage therapist who worked in a Chiropractic office nearby.  I started seeing her every so often.  This gal has been through so much hard loss in her life and radiates beautiful joy.  Her sister is a quadriplegic and she helps take care of her.  She has always shown empathy for my situation and a deep curiosity of my story.  Her vulnerability with me has been a gift.  This woman takes of her time to come to my home to work on my sore tight muscles.  She also wants nothing in return but to use her gifts to bless me.  This is overwhelming to me that these two beautiful woman would show such love and kindness to me.

God’s grace and kindness to us come in many different forms.  Paul Tripp has this to say about God’s Grace:

You need it. You can’t live without it, but you can’t purchase it and you can’t earn it. It only ever comes by means of a gift, and when you receive it, you immediately realize how much you needed it all along, and you wonder how you could’ve lived so long without it.

In a fallen world, populated by selfish, lost, fearful, and rebellious people, it’s the one thing that everyone needs. And you can only give it to someone else when you have first been given it yourself, because you can't give away that which you don't have.

You see, God’s grace is the most powerful force in the universe, It reaches you where you are and takes you where God wants you to be. It has the power to do something that nothing else can do: transform you at the causal core of who you are as a human being - your heart.

For from his fullness we have all received, grace upon grace.For the law was given through Moses; grace and truth came through Jesus Christ. John 1:16-17

I hope you are able to recognize God’s amazing Grace in your life.

Mel

A beautiful day

 Jason and I are so grateful to Crossroads Multinational Nazarene church for having us come and share. It was so fun to see so many old and new friends collide for this special event. We were humbled that so many would come out in the rain to hear our story, or rather HIS story working out in our lives. I have even heard from friends who had the opportunity to watch the live stream from other states. Your encouraging words have really touched our hearts. It's a testament to what the Lord can do with willing hearts. We are so grateful that the Lord carries us, sustains us, and gives us a future hope. We are thankful that we serve a loving God who never leaves us or forsakes us. A God who showers us with his love, grace, mercy, and kindness.

Here is the Link for those who have asked and would like to watch. My voice isn’t as strong as it use to be. I pray as long as I still have one, he continues to let me use it for his glory.

https://youtu.be/oFggwlZ34ok

This picture is with those that attended College Avenue Church of The Nazarene.  The church I attended in my junior high and high school days.  So special to see so many of them.

An Invitation

 We are always so humbled and grateful for opportunities to be able to share our story and the ways God has helped us find Joy in the Hard.  We will be sharing this Saturday Jan 14th at Crossroads Church of the Nazarene in Cerritos at 2:00 pm.  If you are local we would love for you to come and join us.  This will be a special time as this is the church that my former youth leader is the current pastor of.  Jonah will be leading us in worship and you will get to hear a little bit from the whole family.

Last year was quite the year with a lot of unexpected hits.  It was hard, painful, tiring, and joyful.  It was filled with lots of opportunity to see the Lord at work in and through it all.  None of it was a surprise to God.  All of it had purpose.  Looking forward with Hope and eager anticipation this year. Hoping to see even more beauty in the hard as we press on in faith and continue to learn to suffer well.

Crossroads Multinational Church Of The Nazarene

12229 E. Del Amo Blvd

Cerritos CA 90703