New Update On Noah

 Noah had a heart cath on Monday to check the pressures in his heart. Thank you so much for those prayers. I wish I had positive news to share. Noah’s pressures were high. The same as they were when he was first listed for transplant nine years ago and his BNP that measures heart failure was crazy high. The plan is to put Noah on a Diuretic that will help remove a lot of fluid that is building up around Noah’s heart making Noah’s heart having to work harder to pump. They want him to also take an ace inhibitor that helps with heart failure. He needs to repeat labs in two weeks to see if his BNP numbers lower and we will see the team in a month. They will do another heart Cath in 3-6 months depending on the labs and his symptoms. We are good with this plan but also concerned about his high numbers. We are thankful at this time that they do not need to list him. Our prayer requests are that Noah’s numbers would drop and he could remain off the transplant list, also that Noah would be able to process all of this well and be responsible for taking his meds and taking care of himself which is not always easy for any college student. Thank you for continuing to walk this hard road with us. We are grateful for you all.

I'm Writing A Book

 I realize it has been a good while since I have done a blog post. This is always a good thing in that it typically means our life is somewhat stable, from a medical standpoint anyway 😀

One of the reasons for my absence is that I have been doing a lot of writing. With the encouragement from some dear friends and many of you who have followed my journey, I have decided to write a book. I can't believe I'm even saying this out loud😳. Yep! I'm attempting to write a book. It feels strange  because I still don’t view myself as a writer but nonetheless I’m enjoying the process. The book I’m attempting to write is on Suffering. The purpose of the book is to help people shift their perspective from why me to why not me when walking through hard trials.  It will help people walking through difficulty learn how to see God’s purposes in their lives so that they can fully trust in his sovereign plan.  It gives a glimpse into my life and reveals the ways that God met and continues to meet me in the darkest of times. My prayer is that God would put words to pen and it would be an encouragement to so many. I have included many of my previous blog posts from years past. I have a wonderful supportive team and it will be an answer to prayer to one day see this come to fruition.  I’m often amazed how God as I’m re-reading these posts has used these words to preach back to myself.  My mom was just over the other day and I was telling her how God is using these posts from years past to minister to my heart.  She pulled out a page from an old blog post I wrote that she keeps tucked in her purse. It was a blog post that I wrote many years ago explaining how I view my situation as a blessing.  It was like a balm to my heart. I so needed to be reminded of those words as I have not been feeling well. The Lord truly does draw near to the broken hearted. I think sometimes we miss it because we are expecting the Lord to take our hard completely away.  We have expectations on what we think it looks like for the Lord to draw near to us. However the Lord draws near in ways that are good for us. sometimes that means not taking the difficulty away but helping us walk through it. 

I pray that if you are walking through something hard that you would be able to recognize how the Lord draws near and I pray that it would be a sweet balm to your heart as well.

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.

Incline My Heart

I have been struggling and thinking through my limitations. Truthfully a lot more than I should or care to admit. Thinking about where I once was, and the struggle to see where I am. I have battled so much insecurity. This is a new one for me. I have always been relatively confident in my own skin. I’m at a stage in my journey where I depend on so many people to just function on a normal day. Its incredibly difficult to continually ask for help and even more difficult to trust that the person really doesnt mind doing it. It takes vulnerability, courage, thick skin, grace, patience, love, kindness, humility, and so much more. Basically all the fruits of the spirit and the qualities Paul asks us to put on in Colossians 3. I’m sure this will be a battle for the rest of my days. Some days I just really dont want to be needy. Everything in me just wants to do it myself. I just heard a toddler voice as I was writing that sentence 😂

I battle with my heart for contentment and look closely upon my control for comfort. When my heart is inclined toward God, I’m more willing to surrender to my story and look for the beautiful ways God’s present grace shows up. 

A prayer of David in Psalm 119: Incline my heart to perform your statutes forever, to the end.  This is David’s prayer for God to make his heart decidedly fixed for God.

I have talked about this before but its just so true in my life. When I’m able to fight the flesh and fix my eyes on Jesus and incline my heart toward God. I get to see the beauty in the hard and the assurance that he is not wasting any of it. I want to stress the “When I’m able” part though. I’m an imperfect sinner in need of God’s redeeming love every single minute of my day. I pleed with God like Paul did to remove the thorn even when I'm confident the thorn is good for me.

I have realized lately as I have struggled with being needy that I don’t think my faith would be what it is today without this thorn. I’am so much more aware of my need for Jesus. I can’t go through out my day with out being totally dependent on him to carry me through. I’m learning little by little that being needy isnt always a bad thing. It helps increase our faith because we are not relying on our own strength to carry us through. In my situation it pushes people to enter in and gives them an opportunity to serve in sacrificial ways. I have seen this play out in both strangers and loved ones. Last month my sweet husband took me to get a pedicure. He sat in a chair next to me and a lady watched him help me into the spa chair and lift my legs in and out of the water for the nail tech. The lady that was watching stopped by my husband and handed him some money. We were shocked by her generosity but it left a bigger impact on my heart. You see it gave me eyes to see that God is using this thorn to work in the hearts of those around me as well as myself. I have a friend whose boys are always so willing to help carry me down their flight of stairs each time I come to visit. Just last night as I came over for dinner they were waiting with smiles. These are teenage boys who are getting a lesson in sacrificial giving. Their willing hearts bless my heart so much. When I allow myself to stop and look at how the Lord is blessing my neediness it helps me appreciate the thorn and work through my insecurities.

How are you seeing the beauty in the hard? Are you sacrificially giving of your time to help others?

Is your Heart inclined toward God? I would love to hear the ways you have been encouraged.

How able bodied people can come along side others with Chronic illness

I have the desire to blog more this year.  I think the thing that often prevents me from accomplishing this goal besides the mental energy, is often not knowing what to write about.  I decided to pose a question on IG asking what people would like me to write about.  I was so delighted to get the topic above.  How able bodied people can come along side others with Chronic Illness.  I want to start by saying I don’t speak for all people I can only speak for me and my experience living with a chronic illness or disability. 

I love the way this question was worded. Why? Well for one I know the dear lady who asked the question and so I know her heart is to truly come along side others. The other reason is because to me it shows recognition that I’m not able bodied. It’s an acceptance. The first thing able bodied people can do is to recognize and accept the persons chronic illness or disability. This is extremely hard to do in general but especially if it’s somebody you care about. Being in denial over it and not acknowledging it can make the person not feel seen by you. How do you acknowledge it? By not being afraid to talk about it and ask questions. It doesn’t mean that it has to be your only interactions but by not ever acknowledging it or checking in to see how the person is feeling is like ignoring a huge piece of that persons life.  A person with chronic illness doesn’t want to always burden you with discussing their health issues but if you ask it helps us feel that you are truly interested. 

A chronic condition or disability isn’t going anywhere so show your friend that you aren’t either. Living with a disability can feel isolating. Show them that you are in it for the long haul. What does this look like? Check in on them frequently not just when an emergency happens. One of the things I love most is when I get an encouraging scripture, article, worship song, or somebody asking how they can specifically be praying for me. This shows me that I’m being thought of and it shows intentionality.  

Giving of your time is another huge thing you can do. We live in a busy fast paced world. You feel often like you are watching life happening all around you but aren't apart of it. People with disabilities are forced to slow down and rest a lot.  When you give of your time we know what a huge gift that is. This may look like just visiting the person and sitting with them, or it could also mean getting the person out. I often want to get out, go to the beach, take a drive, etc. but I know that it is extra work and don’t want to burden someone. When my friends have said hey can I pick you up and take you to run errands with me, or can I take you to lunch etc. I know they want to do this and I know they understand that it’s extra work. They also are understanding if I just don’t have the energy.  Don’t not invite your friend to functions because you think it will be hard on them or you think your place or function can’t accommodate their needs. Let them decide if it can’t work for them. Maybe even ask how you can best accommodate them. I was going to a ladies home bible study and before it started the host said her husband had set up a ramp for my wheel chair and asked if anything else would be helpful. She even had a special reclining chair for me. I was brought to tears that she was thinking of every way to best accommodate for my needs. It made me feel loved and seen and really wanted. 

I have had a few friends offer to take me to doctor apts. I love this because it gives them a chance to understand the disability so much more and gives my regular caretakers a much needed break. It takes vulnerability also so don’t get offended if the person doesn’t take you up on the offer. The important thing is you asked. Every time you ask to help it makes us feel cared for.

Little things go along way to brighten someone’s day, a text, a card, a sweet tea😂, a visit, a walk, a talk.  

Pouring into my family is another great way. Being full time caregivers can be tiring. So meals, running errands, house help is another great way to come along side them and me. It frees them up to help care better for our needs. 

I hope these things have been helpful. A really good book that I highly recommend on this topic is “ Just Show Up” by Jill Lynn Buteyn and Kara Tippetts. It's both written from a terminally ill person and her best friend.

Again thank you for taking the time to read this blog.  I'am always so humbled by that.  If you have a topic you would love to hear me write about.  Please drop me a message.

Mel