Life got very busy and I’ve been quiet…

Hello friends! It’s been a little quiet here on the blog. My life got busy. I am really working on posting weekly to this blog. I absolutely love writing and sharing how I am ‘Achieving the Impossible Today”. haha get it 🙂 Anyways, let’s get to it!

New Seasons

If you are human, you’ve probably noticed that you go through different seasons during life. There may be times in your life when you are busier, happier, frustrated, or whatever it may be. New seasons can be scary, exciting, and joyous. There are new things you have to get used to and some things you have to say goodbye to (don’t worry, I am not getting rid of this blog anytime soon!!).

My life has been on the slower boat recently and I am stating to receive a little acceleration on this boat. With the extra acceleration, I am wanting to hold on to the sides because it is a new feeling and experience. As the boat picks up speed, there are some bumps along the way that I am trying to overcome as well as some wind in my face.

The season I am coming out of is a slow paced and more relaxed life. It was a very beneficial season that I am happy for. While I was living through it, there were some difficulties. I wanted to constantly be doing something or engaging with my friends. It was a resting time for what God was doing within my life and what He is calling me to.

Callings for this season

The biggest thing that God has been teaching me and continues to teach me is rest. We live in a super fast paced society and this is counterproductive in the views of our society, but I am working on taking a Sabbath every single week. In this time, I would be able to spend time with Him, pray, and give my body a break from all that is going on. I will definitely keep y’all updated on this sabbath day.

There remains, then, a Sabbath-rest for the people of God; for anyone who enters God’s rest also rests from their works, just as God did from his. Let us, therefore, make every effort to enter that rest, so that no one will perish by following their example of disobedience.

Hebrews 4:9-11 NIV

I am now getting involved with several organizations (Fearless Movement, Fearless Women Ministries, ISMRD, Craniofacial Connection, and SNJ Millennials). Majority of these organizations I am attending events, but I am also volunteering my time in a few as well 🙂

I have started an instagram page for this blog! Woohooo!! I will be posting when I am posting these blogs as well as any updates for Achieve the Impossible Today. To follow the instagram, please click here.

Overall

This new season is an exciting time for me. I can’t wait to see what God does through me within this season. I am working on making a schedule, so I can make sure I post every week for this blog. I will also be making some adjustments to the website, so keep an eye out for some changes. That’s all for now.


Thanks for stopping by and reading this blog! Make sure to follow Achieve the Impossible Today, so you don’t miss a post. I am working on posting more consistently. If you have any prayer requests, feel free to comment them or contact me. As always, He can and He will help you through everything, we just need to seek Him first.

Seasons of Life are Constantly Changing

Have you ever been in a season that you are wishing to be over with? It is extremely easy to have this thinking and quite honestly, I have these thoughts more than one would think. Our culture has shaped us into going to the next thing once we achieve something. I really believe that this has shaped us into not appreciating and enjoying the moments we are in at this very point of life.

Last week, I posted about spring break and how many doors were just flying open. The truth is I have been in this very structured and scheduled season. Due to having neurofeedback 3x a week, 2 classes, and church on Sundays, my schedule had to be extremely structured. I don’t know about you, but I love a structured life. I am not one for surprises or changes.

My typical week looked like:
– Monday: neurofeedback @ 8am, relaxing, listen to church sermon, crew at night (every other Monday)
– Tuesday: 4.5 hours of homework (max w/ 5 min breaks included), open to meet w/ one person or food prep
– Wednesday: neurofeedback @ 8am, relaxing, chores
-Thursday: 4.5 hours of homework (max w/ 5 min breaks included), open to meet w/ one person
-Friday: neurofeedback @ 8am, relaxing, chores, baking
-Saturday: 4.5 hours of homework (max w/ 5 min breaks included), crew (every other week) or meet w/ one person
-Sunday: food shopping and church

As you can see, very structured and very timely. Neurofeedback makes me a tad tired and I structure my days like I do, so I do not overdo it. I have been strapped for time and not always feeling the greatest. Recently, there’s been a protocol difference in my neurofeedback treatment. This change has made all the differences in my world.

The school semester is about finished and I am almost finished two classes. After this semester, I will have a total of eight classes to go with finishing my degree in marketing with a minor in psychology. Super exciting times!! I am continuing to take classes in the summer and planning on taking a class in the fall. There are some new things entering into my life, so a new season is upon us!

I am excited for all the ways that God has been moving, but I also really try to take it one day at a time. It is extremely easy to get overwhelmed with things going on in the world, fearful situations, personal situations, and honestly anything that comes into your life. Remember to stay planted in His Word and He will take care of all your needs.

‘Jesus answered, “It is written: ‘Man shall not live on bread alone, but on every word that comes from the mouth of God.’ ” ‘

Matthew 4:4 NIV

Thanks for stopping by and reading this blog! Make sure to follow Achieve the Impossible Today, so you don’t miss a post. I am working on posting more consistently. If you have any prayer requests, feel free to comment them or contact me. As always, He can and He will help you through everything, we just need to seek Him first.

Resting is Key

Constantly doing,
Constantly rushing,
Constantly hurrying…
But why?

Life is more than the hustle and bustle right? I find myself overdoing it and constantly doing something. When I have nothing to do, I feel I am doing something wrong. But why?? I am working on learning about rest and the Sabbath. A quote that has come into my life recently blew my mind. It is so true and wanted to share it with y’all.

People expect us to be busy, overworked. It’s become a status symbol in our society — if we are busy, we’re important, if we’re not busy, we’re almost embarrassed to admit it

Steven Covey, First Things First

Recently, my neurofeedback sessions have been leaving me with more energy than typical. A huge blessing!! I am still tired after the session, but I am capable of doing things. After neurofeedback sessions, I work on not doing too much and overloading my brain. I want my brain to have the ability to relax and learn what we are teaching it through the neurofeedback session. The last thing I wish to do is to bombard my brain. But how do we do that when it seems unnatural to take a rest??

I’ve been learning that everything comes back to this one word…time. It’s so easy to get caught in the cycle of thinking of everything that we “need” to do and how to fit everything into our schedules. Life is supposed to be packed right?!?!

This leads me into thinking and questioning…

What would Jesus do? He lived on this earth and busyness has always been a thing. It’s gotten worse and worse throughout the years. Snail mail has evolved into instant messages through our cellular devices; work no longer stays at work, you can now take it everywhere you go due to laptops; and so much more!

I did a little deep dive into the Bible and found the passage below. We are directed to go to Him to rest. Rest is something that is rarely found in the society in which we live today. We are to give Him everything that we are experiencing, so that He can fill us back up. He will give us the rest that our souls desire. Absolutely beautiful

Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.

Matthew 11:28-30 NLT

Thanks for stopping by and reading this blog! Make sure to follow Achieve the Impossible Today, so you don’t miss a post. I am working on posting more consistently. If you have any prayer requests, feel free to comment them or contact me. As always, He can and will help you through everything, we just need to seek Him.

Rare Disease Day 2022

Rare disease day is a special day for everyone who has a rare disease or knows of someone with a rare disease. There are over 300 million people living with a rare disease. Some rare diseases do not have names and/or treatment options. To find out more info about rare disease day please visit: https://www.rarediseaseday.org

Welcome back to the blog!!

Hello!! It’s been way too long since I have written a blog post. In writing this, God has just shown me what He has done in my life over the past 22 years. I am so thankful with where God has me and everything that I have had to go through. Not everything has been easy, but He has a greater purpose than I could ever imagine. He uses everything for His good! If you have any questions about what I have gone through or literally anything, I would be more than happy to answer! I love sharing my story with others 🙂

My Story

Wait, you were born with a rare disease??

-yes, it is called Alpha Mannosidosis. It’s a lysosomal storage disease meaning there is buildup of toxic materials in the cells body due to an enzyme deficiency. My body was essentially missing one enzyme and that particular enzyme created an issue with all the cells.

How could something like this happen?

-it’s due to genes. It’s a genetic disease. My parents had a 25% chance of having a kid with Alpha Mannosidosis due to having the same mutation on the MAN2B1 gene. Crazy stuff, I know!!

What happens overtime with this disease?

-Alpha Mannosidosis is a progressive disease meaning, it will become worse overtime. I personally have had symptoms of: hearing loss, cognitive issues, memory issues, processing issues, balance issues, muscle issues, bone issues, etc… This disease can lead to being in a wheelchair and having difficulties communicating and everything becoming more difficult.

Yours doesn’t seem to be progressing, why??

-There are treatments that are not technically fixes due to still being in trials, but I was given a bone marrow transplant to stop the disease from progressing. It was a long path, but was worth it. My life changed forever and I’m so thankful that I had to go through that rough journey.

Is bone marrow transplant the only option?

-yes and no. In the US, bone marrow transplant is the only option. In other countries, people get enzyme replacement therapy. The downside to that is it is a continual process and is super expensive.

How long ago was your bone marrow transplant and do you have any challenges to this day?

-18 years ago as of October and yes I do. I have had some bone issues, but majority of my challenges are more focused on my brain. The bone marrow transplant stopped the disease from progressing, but whatever was done was done. I have challenges related to my memory, processing, and a few other things.

Will these challenges ever go away?

-simple answer is we do not know. Right now, I am doing a therapy called neurofeedback and it’s essentially training  my brain how to act. There’s been so many advances in the idea of neuroplasticity and how one day I may have the possibility of having no issues related to my brain. I have prayed about this, given healing within my dreams and people have also told me that God told them that I will be completely healed. We are believing that one day I will be healed.

Whenever I see you, you have a huge smile and an amazing joy about you, how is that if you’ve gone through all this stuff?

-One answer for this… God. He has done so much that would be way too much to write within this. He has taken me from the bottom of bottoms and has given me everything that I would ever need. I have experienced the fruits of the spirit because of leaning to Him in everything. 

What would you say has been the best thing to happen to you?

-there are millions of things that happen to us every single day. I would say that it was God bringing me to church through my best friend and meeting me where I was. Not many people know this, but I’ve always wanted to remember something from when I was younger. I have absolutely no memory due to what I was born with. My memory even from a few years ago is nonexistent. But when I went to church with my best friend 3.5 years ago, God showed me a little snippet of when I was in the hospital. I was looking at myself and I was as happy as could be. My parents said that I was always a happy kid in the hospital. They couldn’t believe it, but to me it wasn’t anything out of the ordinary because I was new to this thing we call life. 

Before you go…

I just want to leave y’all with this.

I am a child of God who happened to be born with Alpha Mannosidosis. Of course the journey has been hard, but we all have challenges of our own. We are all unique and that is absolutely amazing. God has created us to work together in this world. Rare disease day is just another day, but this day shows us that even when we are different we still have our own strengths. 

Uncovering 2021

How’d We Get Here?

Somehow we are just about done the first week of 2022 and time just keeps flying by. I’ve wanted to write a review of 2021 for a little while now and apparently just getting to it now. Overall, 2021 brought me a lot of lessons and was a big development year of my walk with Christ. I am going to take you through some of 2021’s most enjoyable, hardest, and interesting periods of my life. Make sure to buckle in for this roadtrip.

Getting Seated & Situated

During Christmas of 2020, I received a 2021 planner that was set up for writing goals, what I am grateful for, lessons, etc. In the beginning of this book, there was a little section for setting an intention for the coming year and a few other fun things. Each month consisted of a monthly calendar, things to track mood, a notes section, and a monthly review. Throughout the month, I used the notes section to track everything that I did and went through the monthly review.

Intention for the Year: To become more of what God has created me to do. I will achieve this by staying in the relationship with Him, working on Uncovering Joy, getting involved with church, learning about the brain and psychology, and personal development.

Conversation Starters During a Long Journey

There has been a decent amount that has happened in 2021 and it blows my mind. I want to shine light on a few simple things that were key events, what I learned, and God being in the midst of everything.

  • Starting new habits too quickly can cause you to loose everything you were trying to build.
  • Change is okay and God will direct you to the right people.
  • Don’t idolize the issues you are facing. You will be throwing yourself pity parties. Instead, give it to God and He will get you through it.
  • Taking care of our bodies (food, exercise, etc.) because they are temples. 1 Corinthians 6:19
  • If God tells you to do an activity/pray for someone, He will make a way and help.
  • Toes are more important than one would think. (I broke one and could barely walk for a few days.)
  • God will close some doors and open other doors when we follow Him.

You Are Half Way There

In a nutshell, 2021 was a year of growth. At the beginning of the year, I was asking God for a word. This was my first time doing this, so I wasn’t sure if the word I was getting was from me or from God. Growth was my word and we grew a bunch. When I think of growth, I think of self-development and growing in a “worldly” sense. I never imagined I would grow the way I did through some of life’s circumstances. Below are three examples of growth in 2021.

One of my biggest challenges that I face as a person is change. At the beginning of the year, I found out my doctor that I had been seeing for the past four years was moving out of town. This broke me and sent me into so much unnecessary anxiety. We eventually ended up with going to my current doctor and it was a seven week period of not doing my brain therapy. Months later, we are doing the brain therapy consistently and at my house remotely.

Following God into the unknown can be a little scary. I had been praying months in advance for being a part of youth ministry. God told me June and I was going with what He had told me. A week before I start youth, I was still experiencing some of the drunk feelings with my brain. Of course, this made me a little nervous. Youth is a very overstimulating, high energy, and a few hours long. The way it looked, I was not going to be going to youth in a week. Let me tell you, a week later I went to youth and could not believe my eyes. I did not get overwhelmed. I was extremely grateful and through this, I have learned how important it is to follow what God tells us.

Diets, diets, diets. That is all you ever see online. What is the next biggest way to lose the weight for bikini season? In 2021, I went plant-based for a total of three months. During this time, I felt amazing and absolutely loved it. I transitioned back into my regular diet when my body started craving meat. I believe that our bodies will tell us what they need. Even though this was short lived, it has helped me gain control over staying gluten, oat, and dairy free. I am now learning how the female body is and how to nourish it properly.

You Are Arriving at Your Destination

2021 was definitely an interesting year. I can not believe another year has been lived and we have already entered into the next year. I have been praying for the season that I have just entered into and I am so extremely excited for this year.

God has given me the word “faith” for 2022. I have no idea what this means, but I know God will reveal it as the months go on. There have been a lot of doors that have closed in 2021 and God has been opening a lot of new doors for 2022. I am excited to share about these things in another post soon! I will share, that I am working on reading the Bible in chronological order during 2022. It can be a little daunting, but a there is a group of us going after this goal.

Looking into Achieve the Impossible Today in 2022 will be posts every other week. I will be sharing about life events, things God is teaching me, and new things for Achieve the Impossible Today.

For now, here are some photos from this past year 🙂

Being Busy…

“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”

Matthew 11:28-30 MSG

Welcome!

I’m going to start off by saying that God convicts me in my writing. Writing has given me a new sense of slowing down and planning what I’m going to be writing. This is very new to me. With writing two blogs, I have to stay on top of my writing.

Confession…

I also have a confession to make… I’ve been so busy myself that I haven’t been spending time with God, haven’t been reading my devotional, and have just been on the go.

Life can get a little crazy and that is exactly what happened this past weekend. I was out of my house Saturday and Sunday. Typically I’m home all day on Saturday’s, but not this week! And throw in Halloween on Sunday. Busy and just not enough time describe this weekend.

I am sure you have experienced what I have just experienced. (If you haven’t, please let me know your secrets!!) It is so easy to get caught up in the busy lifestyle and forget all about what is important to us in our daily lives.

So, how do we stay on top of our priorities if life gets a little busy? This may be a question I may not have all the answers to. My two recommendations would be to have a list of priorities that are worked tightly into your schedule and pray about the things you should/shouldn’t be doing.

But seek first his kingdom and his righteousness, and all these things will be given to you as well.

Matthew 6:33 NIV

Priorities/Non-Negotiable’s

I am just starting to do this in my life, so the kinks have not been all worked out just yet. If you caught my most recent blog, Planning, you most likely saw me talking about boundaries and priorities. I wrote out my priorities and went further by setting boundaries with those priorities. You can do the same, but we are just going to talk about priorities in this blog post. Below are some questions to start turning the gears.

  • What is important for you?
  • What is necessary to have in your life everyday/every week?
  • What things do you enjoy in life?
  • What is helping you to live a meaningful/purposeful/passionate life?

Once you answer these questions, you will have a list of some things. You may see a list that is perfect and lists everything that is crucial to your life. Feel free to add or delete things from this list.

By creating some priorities for your life, you will be able to see what your focuses should consist of. There will always be things that pop up and change in your schedule. If you want to take it step further, write down days of the week or a time frame that you would like to contribute to each category with your other commitments you have in life.

When we have set our priorities and have established some sort of guidelines/boundaries and implement them into our schedules, we will be able to keep up with what’s important in our lives.

I’m working on implementing my new guidelines into my life. This past weekend did not reflect the guidelines that I have established and in result of this, I am not feeling the best mentally, physically, or spiritually. I’m looking forward to getting back on track.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

John 14:27 NIV

Praying

This is something that I have recently started doing. If something comes up whether it be with friends, with family, or some sort of event; I will first pray. In doing this, I am asking God if this is what He wants me to be doing with my time. It can be a tad hard in the moment, but God always has our best interest.

For example, there was a Maverick City concert really close to where I live and God said no. I had no idea in the moment why God had said no. I was thinking along the lines of me possibly getting overwhelmed or not enjoying the concert for some reason. Instead of going to the concert, I had the ability to go to Longwood Gardens and take pictures. Photography is something that God is calling me to and He is helping me to refine my skills. While at Longwood Gardens, I also had the opportunity to spend the day with my grandparents and my mom.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:6-7 NIV

Thanks for reading today’s post about being busy in this fast-paced world! If you enjoyed the post, make sure to like and follow my blog. I am praying for y’all and if you have any specific prayer requests, feel free to leave a comment or message me directly.

Planning

Welcome to this blog! If you are new here or have been here for some time, I hope you are having an amazing week! This week’s blog is a tad shorter than typical. This past week, I have been more focused on how to get ready for the next season in my life. God has been sprinkling hints of what I will be doing in the new year and it scares me a tad. I am glad that He is telling me these things, but also working on not getting overwhelmed.

I will instruct you and teach you in the way you should go; I will counsel you with my loving eye on you.

Psalm 32:8 NIV

Preparing

As of now, I have multiple things that I will be either starting for the first time or restarting. I am starting college back up and pursuing to shadow a small group at my church. Both of these things are exciting, but can be a lot. They have multiple facets tied with them. With that being said, I am working towards creating a schedule that would help me to prepare for this new season as well as limit the overwhelmed feeling that may come about.

When we get busy with various activities, it is extremely easy to stop doing the things that have high priorities in our lives. You may be asking, “How can that be?” Yes they are our priorities, but when other things come into our lives we can forget how important our true priorities are.

Boundaries & Priorities

To fight against this possibility, I am creating a schedule with boundaries and priorities. I am going to be busy and Satan loves when we are busy. It is really easy to take our focus off of God in seasons of business. I will be putting my priorities down below.

  • God
  • People/Friends
  • Writing
  • Reading
  • School
  • Cooking

I am still working on figuring the technical schedule out, but I am being mindful of the above topics. I want to make sure that I am staying on top of my relationship with God, eating properly, and excelling in school. I am very excited for this upcoming season and know it will be here before we know it. Here are some boundaries I will be implementing.

  • Tuesdays & Wednesdays: 2 hours of school
  • Mondays, Thursdays, Fridays, & Saturdays: 1 hour of school
  • Thursdays & Sundays: food prep
  • Fridays & Saturdays: friends/fellowship
  • Sunday: church

That is all for today. Thanks for stopping by and seeing what I have going on. If you enjoyed this blog, make sure to give it a like. I post a blog every Monday and Friday. Praying for y’all and I hope to see you around!

Peep my dog Sandy, she is ready for the weekend!

Reflecting

Last week, you may have read my post titled Lucky 13. This post was about what I was born with and where I am today. In writing this, I was really looking at where I am today. I didn’t dive super deep into it and felt like I should explain what is currently happening. God has been moving in incredible ways that I truly cannot explain. Everything doesn’t feel real.

Meeting & Connecting with People

God has always put the people in my life that would help me to become the person today that everyone knows. It’s been a wild ride. I am so thankful for every person that God allows me to interact with. Due to so many wonderful people coming into my life, I want to give back and help them.

God has been putting people in my life where I have been learning from them and they are learning from me. It’s such a beautiful thing to experience. Some of these have been moments of God pushing me to pray or talk to someone. When I step back and take a look, I see what God is teaching me and leading me towards. It is simply breath taking.

My consistent prayer at this very moment is that God would use me as a vessel. My desire is that God would use me for what I was created for and that my testimony would have the power to help others because of what God has done in my own life.

Therefore, if anyone cleanses himself from what is dishonorable, he will be a vessel for honorable use, set apart as holy, useful to the master of the house, ready for every good work.

2 Timothy 2:21 ESV

Writing a book

Ever since I was a child, I have wanted to be an author. Whenever people would ask the famous question, “What do you want to be when you grow up?” I would always respond with “author” in some shape or form. The ironic thing was…English class was always a struggle for me. I hated reading, and writing was okay. A lot of people don’t know this, but I used to write poems and then would proceed to speaking these poems on stage during open mic nights. Another amazing thing…public speaking (which I absolutely love).

I am now in college and have grown to love reading and writing. God can literally move mountains. If it is His will for something to happen, it will happen. For years, I have wanted to write a book about life. I never knew how this would play out or even how to write a book. I would think about various ways my ideas could become a book. Recently, God has been pushing me to start writing a book. My friend is going to be mentoring and helping me with this whole process.

I am not sure when this book will be published, but it is in the works of being created. I am excited to watch God unfold everything during this project. In everything, God always stays faithful and will help. There are no words to explain how excited I am about this book. There’s definitely a lot of emotions tied to this because of thinking this would be impossible.

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Proverbs 3:5 NIV

Nonprofit Board

Recently, I have joined the nonprofit board of ISMRD. ISMRD is a nonprofit that helps connect families together that have been affected with a glycoprotein rare disease as well as research for these rare diseases. I am a board member and once again this is something I never even imagined. Up until this point, I would have families reaching out to find information about Alpha Mannosidosis. I get so excited to share my story and genuinely happy they found me. I am now apart of the organization that helps connect all these families together.

ISMRD truly has made an impact on my family. They helped my parents figure out what Alpha Mannosidosis was and what treatment options there were. I have found others that are around the same age as I, who have been diagnosed with Alpha Mannosidosis. These people may be living all over the world, but we have a similarity! We have been able to chat about the difficulties we face, but also everything that we love to do and what we are working towards in life.

Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

James 5:16 NIV

School

As some of you know, I am going for a bachelor’s in marketing with a psychology minor. I am currently in my second semester off from school. When Covid hit, there was a lot of stress and my brain did not know what to do and got super wacky. I decided to take a break from school. I had no idea how to do school while dealing with the symptoms I was experiencing.

I have just signed up for two classes that will be online in the spring! They will be two psychology classes and I am extremely excited about these classes. I haven’t gone to school in awhile and I have never had this joy about going to school before. God has been working on changing my heart on some things and I would say this is definitely one of them.

While I am finishing my bachelor’s degree, I will be starting to go to a bible college that is a part of my church. I will be going for the Ministry Leadership program there. This is completely driven by God. I literally have no idea why or what He will be using this for in my future.

For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.

Ephesians 2:10 NIV

Where to Next?

I am excited for everything that God is orchestrating. I am not sure what will be on the horizons, but I know that God knows the details of everything He is calling me to. As for this blog, I will be continuing to be posting every Monday and Friday. I will be updating some of the webpages on this website shortly. Very excited for everything! If you haven’t given the blog a like, make sure to do so! In liking the blog, you will be able to receive email notifications for every time I post something new!

Also, I will be a starting a monthly email shortly. The emails will be about encouragement, anything God is putting on my heart to share, as well as exciting announcements! You can sign up to my email list below 🙂

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Lucky 13

Tomorrow is a special day for me. It would be what I call my second birthday. You might be thinking it’s the day that I accepted Jesus into my life, but it is not. This day came way before that ever happened! October 16th marks the day that I received my bone marrow transplant. This procedure essentially changed my life forever.

Born Rare

I was born rare. We are all different and that is amazing! We should not be the same because that would be super boring!! During my early years of growing up, I had many difficulties. I was not meeting the developmental markers that kids typically meet. My parents knew something was up and I am so thankful they did not give up. Eventually they got a diagnosis of me having Alpha Mannosidosis at 3.5 years old.

Alpha-mannosidosis is a rare genetic disorder characterized by a deficiency of the enzyme alpha-D-mannosidase…The symptoms and severity of the disorder are highly variable. Symptoms may include distinctive facial features, skeletal abnormalities, hearing loss, intellectual disability, and dysfunction of the immune system. 

Cited from: www.rarediseases.org

Every person who has this rare disease, has a different variation. It is similar to autism as it has a spectrum of its own. Some are worse than what I dealt with while others are better than what I dealt with. This disease progresses and overtime it will affect bones, the brain, and muscles.

Decisions, Decisions…

There are not many treatment options. Today, in certain countries you can either do a Bone Marrow Transplant (BMT) and/or Enzyme Replacement Therapy (ERT). In the US at that time and to this day, the only option is BMT. My parents had to make the decision to go forward with a BMT or let the disease run its course for the rest of my life. BMTs are very risky and my parents knew that going into this. If they had gone with not doing anything, there was a possibility of me being in a wheel chair, not communicating, psychosis, etc. My parents knew the risk of going the BMT route, but saw the opportunity it would give me in possibly having a somewhat normal life.

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Proverbs 3:5-6 NIV

And so with that, I had a BMT a year after my diagnosis at 4.5 years old. I was the 13th person in the world to receive a BMT for Alpha Mannosidosis. My memory has been affected with what I was born with, so I have no memory of the BMT. I have one memory that God gave me while being in the hospital and that was me smiling. Alpha Mannosdosis has severely impacted my memory. I am quite happy to not remember being in the hospital during that time and to have that happy moment from God.

Life Today

It has been (almost) 18 years since that BMT and I am so grateful, thankful, and joyful that my parents chose to go with having me go through it. This was most likely the hardest decision of their lives. It has impacted my life for the greater good and now is allowing me to impact people around the world. Even though, there have been many ups, downs, twists, and turns I have been granted a life that seemed very much impossible.

I do still have some challenges to this day, but that’s due to the Alpha Mannosidosis progression that happened before the transplant. I have also been in several car accidents and they did not help with what I was already experiencing. Even though my life is not the ‘normal’ that everyone faces, I am thankful for the life God has given me and everything that He has put into my path.

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, and I know that full well.

Psalm 139:13-14 NIV

I am constantly doing different things whether it be with my church, cooking, reading, writing, spending time with friends, or speaking about Alpha Mannosidosis. This would not have been possible if I never received the bone marrow transplant (almost) 18 years ago and I am so excited to keep doing the things that no one in my family thought I would be capable of doing.

Faith & Friends

This past weekend, I went on a retreat with my university’s Chi Alpha group. We spent the weekend learning, praying, worshipping, and fellowshipping with one another. I personally had an amazing time and loved every single part of this weekend trip.

Cars & Traveling

We traveled about three hours away from our university and I was not 100% sure how the car ride was going to go. I get a lot of car anxiety (been in three accidents) and so cars are not my forte. I gotta tell ya, its really fun going in a car with three other friends and traveling together! We stopped for food and everything. Even though it was longer than I am used to, I had no worries about being in the car.

During the retreat, they focused heavily on the idea of idols. Which to me is kinda funny because my first time reading through the New Testament, God was speaking idols/idolatry to me. I honestly thought that was the only thing that the New Testament was about; boy I was wrong!! To me, idols are more about celebrities or anyone who is popular and following everything they do. I was very confused when I was reading about idolatry. My definition was somewhat correct, but somewhat not…

Idolatry

This weekend, we dove into what idols really are. One question that was asked was, “What would you see in the mirror when you looked back at yourself?” Harry Potter was being referenced in this instance. The question comes from Dumbledore when looking into the magical mirror that shows deepest, most desperate desire of our hearts.

When I ponder and ask God about this question, I get ‘love’. I am still working on unpacking what this word means and asking God about this. I believe I desire to love people in the correct ways. I have received love and want to be able to express love to other people in a way they can receive it. So what would you see?

Continuing on with idols, there are four sources in which they stem from. This was very fascinating to me due to knowing very little before this retreat! The idols get broken down into Power, Control, Comfort, and Acceptance. They are pretty self-explanatory, but were very mind opening for me. The ‘love’ word that comes to mind would fall into the control category for me. I want to be able to control the way in which I can love people and hope they receive it the way in which I want them to.

Silence & Solitude

We wrapped up the weekend with some alone time with God. We practiced an exercise that allows us to go into the presence of God and to help us learn how to listen to Gods voice. I really enjoyed this exercise and have put it below. It has been adapted from Bridgetown Church

  1. Relax: Let your mind and body calm down. Try slowly reading through a psalm, attending to your breath, or repeating a simple prayer.
  2. Surrender and Detach: Sometimes called yielding or surrender, practice releasing your anxieties, the circumstances of your life, and your will over to God in prayer.
  3. Look: The heart of prayer is looking at God, looking at you in love. Spend time considering, looking at, contemplating God. Look beyond the other thoughts that crop up, redirecting your mind as needed back to the Father.
  4. Listen: It’s been said that the primary posture of a disciple of Jesus is sitting at his feet and listening. God has direct access to your mind–in the stillness, listen to what the Lord might be saying to you.
  5. Love: End your time by resting in God’s love, anchoring yourself in the peace of his presence.

Here are some pictures from this past weekend!

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