Month: December 2024

Faith/

Life Lately

I feel like for more than the past year anytime anyone would ask how we are, or what our family has been up to I always answer the same, busy. Unfortunately, that busy got in the way of some things that I enjoy doing, one of which is writing. I have always used writing as my way to express myself and it’s often been a therapeutic tool for me. I also have been in various seasons where other’s writing has got me through good, hard, and really bad places. So I have always thought of writing as a way to connect with and help others. 

As a homeschool mom who also has been working as a real estate agent along with several other side hustles, writing just became a hobby that I didn’t have time for. Which honestly is so unfortunate because writing has always been more than that for me. It is one of my passions and something I feel like God has called me to do. Until recently, I had not seen my avoiding taking the time to write as something that was also me being disobedient to God’s calling in my life. 

Over the last two years, one of the reasons life has felt busier than usual, we have been dealing with a lot of unexpected health issues with our youngest son. When he was five years old, he was diagnosed with arginine vasopressin deficiency, also known as diabetes insipidus. Our little guy has been incredibly brave with all his new normal consist of but it has been hard on him and our entire family.  We recently went to Texas Children’s Hospital to see a specialist as we have been trying to find the cause of his AVP-D/DI and looking for an explanation of some of his daily symptoms. One of the causes we are trying to learn more about is called Langerhans Cell Histiocytosis, which is a type of cancer. While both diseases are complicated and hard to understand, we are very hopeful and have an unexplainable peace that is only from the Lord. 

While we didn’t get a clear answer either way on whether Korbin has LCH, he will continually be monitored for at least the next 7 years for this,  we did learn a new diagnosis that explains some of his other symptoms. We learned that in addition to his AVP-D/DI, he also has a genetic mutation causing a liver disease called Gilbert’s Syndrome. Because of all the amazing people in our lives who have been offering prayers and support throughout this journey with Korbin, I have been updating via social media after each test and doctor’s appointment. Because of that, I’ve slowly been making time to write again. Sharing our journey in hopes of shedding light and hope on other’s lives. While we are still in the midst of this medical diagnosis journey with Korbin we know that God is creating a story and testimony for him that he will one day get to use as an opportunity to share the Gospel with others. 

I’ve always felt like God was calling me to share my journey with others through my writing. Through various seasons of life, God has used both the good and the devastating to draw me closer to him. I have felt that connection to writing again, even though it has just been in short social media posts updating about Korbin.  If my writing and often oversharing can do the same for just one person, then I feel like I have done what he has called me to do. So here is to the start of making sure that my writing and sharing are a priority again. 

Faith/

The Special Six

If you know anything about Jason & I,  everything we do is for our kids. Jason calls us the Special Six. From the beginning of our marriage, we have always known that having kids was our top priority. We also had conversation after conversation about what that would look like, how we would raise our kids, and our goals as a family.  Many of those conversations came from our own experiences, both good and bad; how we would do things similar to our childhood and how we would do things differently. I think every parent could agree they have had similar thoughts and conversations. 

Wanting to do things differently than how we were raised or than the experiences we had as a child isn’t always a knock to our parents or families. Looking back over the generations it seems every generation of parents change how they parent based on their experiences, trying to do more or do better than what they experienced. If we look back at our parents’ experience we can see that they were parenting in a way that was to their own capacity. Often as parents we are growing up at the same time as we are learning to be parents. 

Over the years we have made many parenting decisions that not everyone understands or agrees with. We have and continue to make good decisions and bad decisions as parents. As we have grown as adults, husband and wife, and as Christians our parenting style and decisions have also grown. We are always open and honest with our kids. We often tell them that we are far from the perfect parents and that while we are trying our best to do right by them. One day they too will look back and see things we did as parents and want to do things differently with their own children. We hope they do. We hope they continue to do better and give their own children more (emotionally, mentally, spiritually, and financially) than we can imagine. 

I was recently listening to a podcast that was talking about a book, that I need to order and read! The book talks about how our decisions as parents can have such an impact on not only our children but every generation to come. Specifically, the authors were speaking about how if you have four children by the time your family gets to their tenth generation you could have around 55,000 descendants. So I sent a text to Jason and jokingly yet seriously said hey we could impact this not just 4 kids but possibly 55,000, so you know no pressure or anything! But doesn’t that just put your role as parents into perspective of just how important it truly is? Not only how we can impact our future generations in this life but also how we can impact their relationship with the Lord and their faith in general. 

While we are always making mistakes as parents we are also learning and growing. Our goals as parents are to raise children who are spiritually, mentally, emotionally, relationally, and physically healthy.  We pray that they desire to have a relationship with God,  that they will continually grow in their faith, and that they will make Jesus the most important relationship they have. We pray that they become successful in whatever career aligns with God’s will for their lives. We pray that they continue to have a close and loving relationship with us as their parents and with their siblings. We pray that they find the spouse God has for them so they too can enjoy a long and healthy marriage. We pray that if they have children they create an amazing and healthy relationship with them. We pray that they will continue to build a legacy for our family that reflects the Gospel to others generations after generations. We pray that they understand every decision we made as parents was for them to never walk away from their relationship with God and to have a childhood they don’t have to heal from. We pray that our tenth generation can feel the effects of the effort we put into the Special Six. 

Faith/

Wept

October 2024

It’s almost 1:00 AM so what am I doing up writing? I’ve always been a night owl. Turning off my brain has always been a struggle. Sometimes a welcomed quiet time. While the kids are all asleep in their beds, I enjoy the comfort of sitting up in bed while Jason sleeps next to me either reading, writing, or working in bed. Sometimes with work assignments. Sometimes planning to quiet the to-do list in my head. Sometimes to read or scroll for relaxation.  Other times to research. It could be business ideas, home design, bible studies, or anything lying heavy on my mind. This quiet, focused time has changed lately and has turned into research time for the last two years. 

It is time to learn any and everything I can about Korbin’s Arginine Vasopressin Deficiency (Diabetes Insipidus) diagnosis.  What type of treatment is available? What kind of alternatives are there? (none.) What does his prognosis of living with this disease look like? Where is the best available care or doctor for him? You name it I’ve researched it. That research then led to learning more about the causes of this rare disease. Which led me down several paths of further research. In the last year or so that has led to narrowing that research to Langerhans Cell Histiocytosis (LCH). I’ve spent night after night scouring online Histiocytosis, LCH, AVP-D /DI groups, organizations, articles, medical journals, and personal experiences. Soaking in every bit of information my mind can absorb plus some. Watching video after video. Researching oncologists, hematologists, endocrinologists, and every pediatric hospital within a 15-hour drive. 

This month waiting for doctors to return test results, phone calls, get tests, and appointments schedule has been nothing short of heavy almost to the point of feeling tortuous. As I lay here tonight scrolling and mapping out hospital trips and weighing the costs of what the future may hold with so many unknowns and so many questions I tried even in the darkness, even as I sat alone, even when I didn’t need to be strong for anyone else, I felt myself trying to hold it all in. Trying to not let the tears escape as it is so hard to control them these days. For someone who hates to cry and seems to cry for every emotion, this has been a trying time to get myself to keep it all together. 

As I felt the weight get heavier words quickly came to my mind. As I scrolled the website of yet another children’s pediatric oncology hospital. The words replay over and over. “Jesus Wept.” at first I feel comfort in thinking God is so good and kind he’s reminding me it’s okay to fall apart with the weight of the situation. That even Jesus both equally God and man wept. Thinking of the verse in the book of John 11:35. I quickly switched apps on my phone, much like my brain with all the tabs open. I opened the Bible app and read the verse to myself again. 

I thought about how Jesus knowing the full plan, knowing every detail of what had happened to his friend Lazarus and what was going to happen, He still wept. He still felt the weight of the situation.  It was still too much for him to get it together. It was in front of a crowd of people. Not in the comfort of the dark and his bed. In the day light surrounded by those who believed him and those who ridiculed him. He wept. Knowing that when he called upon his Heavenly Father asking for Him to step in and perform a miracle only possible by him for His Glory that He would do it, Jesus still wept. 

It wasn’t about his weakness. It wasn’t about lack of faith. It wasn’t about his loss of hope. It wasn’t about him being overwhelmed by sadness. It wasn’t about the sickness his friend suffered through. It wasn’t about the finality of death. It was just about his need to trust in His father’s timing. It was about his need to call out to His Heavenly Father. It was about the deep love he felt for Lazarus. It was about the sorrow he felt in that moment.

 It was about sharing it with a crowd of believers, doubters, unbelievers, and those in between.  It was about doing It all for God’s glory. So that everyone will believe. I know without a doubt that everything Korbin is going through and everything we are dealing with is because of this broken world we live in but, God! He will use every appointment. Every procedure. Every test. Every tear. Every pain. Every hard day.  Every struggle. Every part of Korbin’s story will be for God’s glory. 

John 11:40 NIV

[40] Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?”

If you’ve made it this far just know I’ve wept. I may not have all the details but I know the outcome. Korbin’s story will be used all for God’s glory.

 So for those in our “crowd”. Those who find themselves doubting. Those who don’t believe, used to believe, or don’t know what it means to believe. To those in between. 

Keep following Korbin’s story. Keep watching as we continue to call out to our Heavenly Father. Keep watching so you can see when God takes away this “stone”. We pray that through Korbin’s story you will stand here and believe. All for His Glory. 

John 11:41-42 NIV

[41] So they took away the stone. Then Jesus looked up and said, “Father, I thank you that you have heard me. [42] I knew that you always hear me, but I said this for the benefit of the people standing here, that they may believe that you sent me.”

Faith/

Get Ready

Get ready for a flood of posts. Writing has always been an outlet for me. It’s my favorite way to communicate effectively. It gives me the time to sit with my thoughts and feelings and get them out without rushing or causing any confusion. I get to go back and read my words to make sure they make sense and that I am saying exactly what I want to say. I can go back and edit things that seem a little too harsh or find a better way to say it. I can make sure I am not missing any part of what I am trying to convey. I talk fast. I hate small talk. I have a seriously overworked ADHD brain full of all things. So writing my thoughts has just always been the best way for me to get everything out. I often find when I am overwhelmed or over-scheduled (usually both) that while I still take the time to write I am usually just getting quick notes on my phone, writing in one of the many many journals I have, making a quick update on social media, but I am not sharing on my blog like I intend to. So then I end up with ideas and journals full of things waiting to be refined and posted. Because of everything going on with our youngest, Korbin, lately, I have piled up my collection of to-be-posted blog posts. So here they come. They may seem out of order if you follow me on social media but it is just a little back-dated mom life blogging at work. So get ready!

Faith/

Korbin’s Update

Today Korbin’s endocrinologist called with his test results. 

Unfortunately, he does have Growth Hormone Deficiency (GHD). We have been expecting this would likely be the case based off of his growth charts and his endocrinologist has been very proactive with monitoring it. 

He is also due for his next brain MRI to see if there is any change in the “thickening” of his pituitary stalk. He goes every 6 months for this. We are just waiting for the hospital to get insurance approval and to schedule that. 

So before we get started with the GH replacement we will get the results from his MRI and send those to Texas Children’s for review for the Langerhans Cell Histiocytosis (LCH), which was the reason for our initial visit there.  

Once we know for sure we are good to move forward with the GH replacement it may take some time for insurance approval. It is not uncommon for it to be denied at first. 

We are incredibly grateful for his endocrinologist and Dr. McClain at Texas Children’s for their continued guidance, thoroughly looking into all of Korbin’s symptoms, and their willingness to collaborate with each other to do what’s best for Korbin.

We are thankful to be getting answers and solutions for him to feel the best he can!  He is currently being treated for the following: 

Arginine Vasopressin Deficiency aka Diabetes Insipidus 

Growth Hormone Deficiency (we do not know for sure if this is from the AVP-D/DI which is why we are still monitoring for the LCH). 

Gilbert’s Syndrome- A separate genetic mutation unrelated to the above diagnosis.   

We appreciate all the prayers as always!