Counting Our Blessings

Counting Our Blessings

Wednesday, March 14, 2018

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.

Tuesday, February 27, 2018

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. 

Friday, December 22, 2017

Nothing IS Impossible With God

I’m sitting here in the quiet overwhelmed by God’s goodness. Like seriously ugly crying.  The waterworks are flowing yet I’m smiling. You guys ever have those moments?  Why is it one moment you can feel so down and frustrated and the next you feel like your going to burst from the joy you feel inside?  This happens so much for me.  It’s easy to get down and frustrated by my circumstances.  I mean from the moment I wake up to the moment I lie down to go to sleep all I think about is how to make things physically easier for me.  I have to think about not falling on the way to the restroom, who’s going to help get me dressed for the day etc.  I feel guilty for not being the kind of wife, mother, and friend I think everyone deserves.  I get disappointed, and feel the losses greatly.  Every new loss is like a sucker punch to the gut.  Yet the Lord is constantly working on me and he constantly uses his people to bring me encouragement. This week I got the most beautiful heartfelt Christmas card in the mail from Jonah(see picture below).  Jason started to read it out loud and couldn’t make it past the third sentence.  He was overcome with emotion.  I took over and only got through the next two.  Wow! This kid blows me away by his tender heart.  It was exactly what I needed. A sweet reminder that it doesn’t matter that they have a mom who is limited in her physical abilities.  They see (more than me sometimes) how God is using it for good.  The very next day I got an unexpected card with an unexpected gift for our family and again I was taken back.  I feel like when these moments happen it’s God giving me a sweet embrace letting me know he is near and that their is purpose in the pain.

Last week Our Sermon was continuing the Christmas Story and he focused in on the fact that Nothing is Impossible with God.  It was a really good message and hard one at the same time.  He challenged us to think about what we are holding back from thinking God can do. I feel like I believe and know that he CAN do anything.  So I know that he CAN take this disease from us I just don’t think he will. I guess I’m afraid to think he will maybe out of fear of being disappointed. Which challenged me to ask myself, if I know that God can do the impossible, and work mightily through this challenge we face, would I want him to take it away?  This is something I wrestle with all the time and I have come to the conclusion that it’s ok to hate the suffering while at the same time being so grateful for it.  Jesus himself asked in Luke 22:42 “Father if you are willing, remove this cup from me.  Nevertheless not my will, but yours, be done.” So this is my prayer Father if you are willing, but not my will, but thine be done.

I pray that you would Know that All things ARE possible with God.  I pray that you would marvel at the incredible story of our Saviors Birth and realize what an incredible gift HE is.

Friday, November 3, 2017

I'll Push you

Last night I went and saw the One night only showing of “I’ll Push You”.  If you haven’t heard of the film here is a link to the trailer. It is about a man named Justin who has a debilitating disease that has left him without the use of his hands and legs.  After watching a documentary about the Camino De Santiago trek he has a yearning to go.  He brings it up to his friend Patrick who says I’ll push you.  I had been looking forward to seeing this movie for a whole host of reasons.  Mostly I was thankful that it would be bringing more awareness to what life is like with such a debilitating disease. Not just for the person who has the disease but also the people caring for that person.  Most people don’t always get a real good view on the difficulty it is to even do the simplest tasks like getting dressed and combing your hair.  I felt like this movie did a really good job portraying this aspect well.  It showed how much work his best friend patrick did on a daily basis just to get his friend ready for bed and up and ready to get on the hike each day.  I loved the tender and thoughtful moments it captured of Patrick the friend.  One thing in particular was in transferring Justin from his wheel chair to another chair. The audience saw Justin’s pants fall down.  Once transferred Patrick asked Justin if he needed his pants adjusted. Patrick was intentional in thinking of all of Justin’s needs understanding how vulnerable Justin has to feel to allow him to help.  I appreciated the sweet friendship between the two.  I was overcome with emotion that Patrick would move his family out of state to go help Justin’s wife care for their kids and Justin.  The film did a great job portraying the importance of community and friendship and really entering in to peoples lives.One particular moment in the film had me sobbing.  The last leg of the 500 mile trek was going to be super difficult terrain, high inclines, and windy weather.  They were debating if they should call it quits.  Once in town they were surprised to see a huge group of fellow hikers who waited for Patrick and Justin so that they could help ensure they had help to finish the last section.  It was touching to see strangers helping, Justin trusting others, and patrick allowing others the privilege of helping.  It's a beautiful story.  I was however sad that it really lacked depth in the purpose of our suffering.  I was wanting to hear Justin credit the Lord for redeeming him from the darkness of having a desire to end his life.  I wanted to hear both them say they have a hope in Christ that is greater then their circumstances.  Overall I recommend the movie and hope it brings awareness to many out there and a heart to want to enter in to the hard.  I would love to know your thoughts.  As always thank you for following along.


Monday, October 30, 2017

Never Alone

Thank you for allowing me to share. Not just the days that I feel so much peace I could burst but also the days that are long and weary.  Thank you for pointing my eyes back to the one who is the lifter of my head.  This road for us is one thats marked with continual loss and grief but its also one with amazing opportunity to see God at work in the most precious ways. The last two weeks there have been countless times of God working in and through his people to show us encouragement.  God used several people to speak love and truth to my heart, as I studied Joshua for bible study, he spoke to my heart in reminding me how sovereign he is and how we are never fighting the battles alone.  He poured out his love in the form of homemade meals, texts, and phone calls.

 I'm always so touched by strangers around the world that would take the time to read our story, pray, and encourage our family.  Today I got the sweetest package in the mail.  My dear friend Kelly had nominated our family to be the recipients of some kindness from The Good King.  Look them up on Facebook.  They are a non profit company who create coloring pages for kids and adults to color and write a message. They send out a story and ask people all over the world to pray over the family and color a page.  They collect all the pages and mail them out.  Today we got ours and let me tell you it was such a joy not just to me but my children as well.  We spent time pouring over each one and just smiling over the Love we felt receiving them.  He once again reminded me to trust.  Trust that he is doing a beautiful work in and through the hard.  There is purpose in the pain and I will never know the extent to which he is using this battle for his glory.  Thank you Jesus for allowing me to see a few this week.  You are so gracious.

Thank you, all, those who have walked with us near and those who are walking just as closely from a distance. I have felt so very loved. Our family has been embraced, been prayed for, and  peace keeps showing up in real ways. I know I am not facing these physical challenges alone. Hard days are coming, and I’m counting on you all to point me to the grace that I know is waiting for me in those days.

Thursday, October 19, 2017

May I run and not grow weary

Thank you to so many of you who prayed for Noah’s Cardiac transplant clinic appointment.  Last visit they pushed Noah’s appointments to every six months.  This was great news but also the longest he has gone in the five years that we have been going to clinic.  This made me anxious for some reason leading up to this appointment.  I feel like I can never fully accept the good news without always waiting for the next ball to drop.  We haven’t exactly had the most smoothest ride these past six years.  We go long enough to take a big breathe and then go straight into the next big situation.  I’m always trying to be on guard waiting and preparing myself. That might be a coping strategy of some sort.  It brings me comfort when I have all the knowledge and Im prepared. Ha! I’m not sure that’s where God wants me though.  If we are always prepared then we operate without really needing him.  I feel like I’m able to accept what we have been dealt with and trust that God is working out his plan in each situation and I know with all my heart that there is purpose in it.  I just have a hard time trusting that everything is fine and is going to stay that way.  It’s like I’m always waiting for it. Waiting for the next big tidal wave to hit. This is how I went into todays appointment.  When the doctor came in and said his heart echo’s just keep looking better.  My heart felt relief but still not able to fully celebrate.  Don’t get me wrong I can’t even begin to tell you how thankful I was to hear those words.  I’m so thankful but I still live each day wondering when it’s going to decline. I’m fearful of what could come next. They still want to do a Cardiac MRI to get a better look.  I think to myself Is this the test that creates the next tidal wave.  Why am I so fearful of what’s to come next?  I mean after all the Lord continues to show an immeasurable ways his goodness in the midst of these trials. He uses them over and over for his good.  We are just so tired and fear the emotional weariness that comes with each big wave.  Each day is a battle friends. Some days we feel strong and some days we just don’t.  I always want to be real with where I’m at.  It’s a struggle.  The last few weeks have been hard.  Noah is continually feeling the effects of his Muscular Dystrophy progressing and the doctor appointments for him have picked up.  After a wonderful meeting with Noah’s school they helped us adjust his schedule.  He comes home at lunch which has allowed him some much needed rest and availability for appointments.  It’s hard to watch his muscles start to fatigue and see things that were once easy to do become difficult. God is growing him and will no doubt continue to use him.  I want to be a good model for him of trusting and persevering.  I Know I can only do this with the Lord’s help.  Please pray for us friends.  Pray that God would meet me in my weariness. That tomorrow would be a new day.  An opportunity to meditate on Mathew 6:33-34.  That I would lay my fears at his feet, trusting that he has us all in the palm of his hands. Pray that we would not grow weary, that we would run to Jesus every time.  Thank you for allowing us to pour out our hearts and for continuing to walk this road with us.  We are grateful for you.

Friday, July 28, 2017

What's going on with the Lietzau's?

I wanted to check in with you all and give you an update on how we are all doing.

So many of you have asked when we will get our service dog.  I wish I had an exact date to share with you all.  We are eagerly waiting to be matched with just the right dog that will be able to assist me with my specific needs.  We raised all the necessary funds and are on the matching list waiting our turn. We have not been given any kind of time frame which makes it very hard to be patient.  We eagerly await the day I can start my handler training and introduce you all to our new friend.

Mel- I’m super thankful to be on the other side of those four surgeries.  The wires are securely in place, I’m slowly regaining my strength and energy, and getting back to some independence.  It feels good to not be the patient and to be Mom and wife again. It’s great just to be able to do normal things like school shopping or taking the kids for ice cream. My heart is doing good for the most part.  I have Cardiomyopathy(weakening of the heart muscle) however my heart is functioning well.  Overtime it will get weaker and weaker so we will start me on some preventative meds early to try and keep it stable.  My G-tube has been tricky getting use to the feedings and amounts. My weight has essentially stayed the same and sometimes gone down by a pound or so. My Gi is not so concerned with the number on the scale for my weight as what my albumin levels are.  If my albumin levels are good then the G-tube is serving its purpose and I’m fine and he is happy.  It’s been an adjustment but we are working out the kinks.

Noah had an amazing trip to Japan.  He fell in love with the country, enjoyed the people, the food, his team, the culture, and doing ministry.  He really wants to go back next year and even grew a heart to teach and live there in the future. Oh Boy! God has big plans for this boy.  Noah went to Hume Lake camp this year and it was very hard on him physically.  It’s a challenge at his age to have to face his limitations and make hard choices.  He tires easily, gets out of breathe, and feels the challenges of doing physical activity.  He continues to go to the Muscular Dystrophy clinic and cardiac transplant appointments.  We are noticing mild progression but more than that a matureness beyond his years as he accepts whats in front of him and relies on the Lord.  He said the other day how thankful he was for the strength God has given him up to this point.  He encourages me daily with his amazing attitude regarding his challenges.

Hannah is doing great. Since she is getting older her cardiologist wants to order a heart stress test and cardiac MRI to see how well she is tolerating activity and to see how the anatomy of her heart is doing.  It’s amazing that this sweet girl is functioning on a single ventricle and 17 other heart related issues.  You would never know it by looking at her.  She is full of energy most days and I have to remind myself to be grateful for that energy :)  She is looking forward to going to traditional school this year and still has big plans to be a cardiologist.

Jonah continues to bring the fun and funny to our family.  He is our constant entertainer.  He is a huge helper to mom and can make me smile on even the hardest of days.  He has a huge heart and constantly leads our family in bible time.He recently moved up to the middle school youth group at church. Gulp! He enjoyed a week up at Hume Lake camp with the youth group.  He had a blast.  He is enjoying the summer and looking forward to getting back into theatre when school starts. We are so thankful that God has protected his body and continues to keep him healthy.

Jason continues to be the rock of our family.  He carries so much on his shoulders that I don’t know how he does it most days.  He works hard both at his job and at home.  So thankful for the ways he pours into our children, myself, and others.  We are learning to not take little things for granted like slow dancing in the living room:) Am I the only cheesy one that does this?  Do you all hear a song and think of your spouse or a loved one? This is my recent song to Jason Ok the first line says "When your legs don't work like they use to before" yep I cried after I heard this one but then he turned around and says well this is my song to you and I was a balling mess.  We are sometimes sappy like that and I love it.  We are grieving a lot of things.  We both don't always do it well in fact it's easy to take the pain out on one another.  We need lots of grace with each other and the Lord.  It's a lot what we face on a daily basis and sometimes we do it well and sometimes we don't but at the end of the day we LOVE each other and we LOVE Jesus and we have a hope that is greater.

We are thankful for the ways God continues to meet us and provide for our needs.  We are grateful for your prayers and the ways you all walk beside us.