Update

I have been encouraged by many of you to write a post.  To be honest it hasn't been because of my lack of energy.  I have struggled with what to write and how to give an update for awhile now.   I just don’t want this blog to be a place thats filled with sadness, emptiness, heartbreak etc.  I want it to be one filled with hope, certainty, love,  joy, and so much beautiful.  I know you all  just appreciate hearing our vulnerability  so here it goes. It seems like this year has been the most trying for us. Which is crazy because we have had some rough and scary times over the last five years.  Not having our own home has gotten to us all.  It’s hard enough for a person to move from place to place but when you add in physical challenges and everyday stresses it is even more trying.  We have looming surgeries and procedures coming up and we long for the comforts of having our own beds, and our own things.  Please know that we are grateful for the ways God has provided while we search for a home that meets the needs of an unknown future with disabilities.  A home close to community who help shoulder us and lessen the load with their outpouring of help and love.  We were reminded recently of just how crucial it is to have a huge support system.  I spent two hours with a respiratory therapist who told us so many sad stories of people who don’t have good help and support and the effects it takes on their marriages and family.  We are grateful.  Grateful for all of you who pray for us and help in so many wonderful ways.  We are learning how to accept help and learning just how needed this will be for years and years to come.  It’s a hard reality to swallow knowing that you are losing more and more function.  Even harder watching your child process his loss right along side you and even harder watching your wife and child and carrying the load of it all.  It’s a daily surrender to the father for us all.  It’s battling to believe that God is faithful, that he is using this for his glory, that he is good.  Here is a recap of the family and the ways that you all can be praying.

Jason-  Please don’t forget to lift this amazing man up in prayer.  He carries so much on his shoulders.  Pray for strength for him, encouragement to get through the days, and that he would lean on and trust that God is present and cares for him and his family.

Mel- I’am slowly losing more and more strength and physical abilities.  My respiratory numbers are down and I was told it is important to get acclimated to the breathing machine.  It is putting to much strain on the heart.  Bottom line I need to wear it or I could not wake up one day. That was plenty motivation for me.  I will need a pacemaker surgery soon as well.  My pacer has moved and is protruding out causing pain. I’m trying to hold off on this for awhile. They will need to put it under the muscle this time.  It is a little more invasive with a longer recovery time.  Pray that I would not be bound by my circumstances.  That I would have a heart that desires to love and serve God with all I got.  That I would look for joy in the midst of pain.  That I would not be distracted or derailed by the hardships of this world.

Noah- We are thankful that God has continued to protect his heart.  He is still a status 7 on the heart transplant list.  He has his next heart cath on July 18th.  That is the procedure that tells us how his pressures are.  It is the test that determines if he can stay inactive or active on the heart transplant list.  Noah has begun to see a team of doctors at the CHOC Neuromuscular Clinic.  They will monitor his progression of this disease and treat as necessary.  He is having some breathing difficulty and is working with the Pulmonologist to discover what the issues are.  We also recently discovered some problem areas in his feet that will require surgery soon. Please pray he can get this done in the next few weeks so he will be recovered in time for Camp this summer.  It has been a lot more appointments for him and it is wearing on him emotionally.  He sees glimpses of what his future could look like and its been a lot for him to process.  Pray for him as he navigates the emotions of it all and for us as we try and walk through it as best as we can with him.  He recently was baptized as church.  We were so proud of his decision and even more proud of the ways we have seen God working in his heart.  He knows God is working through these challenges but is also feeling the heaviness in ways he hasn’t over the last four years.  He encourages me all the time by his willingness to accept each challenge as it comes.

Jonah- This sweet boy turned 10 recently.  He is our daily entertainment.  He brings so much joy and comic relief to our family.  God knew we would need his contagious joy in our lives.  He has had an amazing season of baseball coming into the playoffs as the second place overall team.  He remains healthy as ever.   He loves the Lord and is often eager to lead his family in the word. He shows such great empathy and compassion and has stepped up to help his momma in beautiful ways. Pray for his heart as he watches his mom lose more function and his siblings go through hard procedures. Pray that he would cast his fears on the Lord.

Hannah- We are so thankful to say that our sweet girl is doing so well.  She goes in every couple months to see her cardiologist and electrophysiologist(pacemaker doctor).  She will have a heart Cath as well this summer.  This is to check her pressures, check the shunts in her heart and to make sure she hasn’t developed any collateral veins that need to be cauterized.  She is a big helper and loves to help wherever she is needed.  She is her brother Jonah’s biggest fan and talks about baseball constantly.  She never tires of telling us how sad she is that she can not play on a team.  We are thankful for her recent decision to put her faith and trust in Jesus.  You can pray that she would continue to grow in her knowledge of what that decision means.  Pray that God would continue to protect her heart.  Pray for her upcoming procedure that there would be no surprises. 

Thank you again for all of your love and support.

The Lietzau’s