Noah Update

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

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

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

What has been the biggest challenge for you? 

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

What do you wish people knew about your disease?  

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

How can people pray for you?

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