Being David in a Goliath World

When I was child, my favorite Bible Story was David and Goliath. I could relate to David on so many levels and I still relate to him to this day! As a child of the 90's, VeggieTales was my thing, and my favorite one was "Dave and Giant Pickle” and my favorite scene was when Dave sang "Why can't little guys do big things to?" As a little girl needing a shot every night to help me grow, this song made me so excited!

Despite nightly shots from 7 to 14-years old, at 4"8, I am the average height for a woman with TS who has NOT been treated with growth hormone therapy. Unfortunately, this has led to some discrimination when it comes to looking and keeping a job. I must work a lot harder to sell myself to potential employers during face-to-face interviews. The last 2 jobs I was offered were phone interviews and that helped me greatly. I was literally offered the job in less than 10 minutes! I have not had the same success with face-to-face interviews. I do not why because I interview very well. It is just people do not seem willing to give me the chance. I know this is a very common problem for my sisters as this is an issue discussed at every conference. 

I am learning that like David, I can't let these issues stand in my way. I must confront them and keep going despite of it. Is it frustrating? TOTALLY! Is it worth it? 100%! Like David, when I go into anything like a job interview or even meeting new people, I must suit up! I must know who I am, and God is, before going into those battles or I would just run away. One of the biggest tools in my arsenal is my words and vocabulary! I am very linguist and real wordsmith. I love words! I use this love of words to help people see me for my age. I don't come off as a show-off because this who I am, and it is natural. I do not put on a show with my words, but it helps me navigate social situations and for people to take me seriously. It levels the social playing-field. 

There are all things that make us different. We all have challenges like David and just like David, God gives the tools to overcome these challenges for His glory. God has given us His word. He has given us His strength. We need to learn like just David did, how to not let past labels dictate who we are today. These can be labels we give ourselves, through a diagnosis, and other people. We need to remind ourselves daily that we are not defined by those labels. Once we define who Who's we are, and what we are, we are ready for battle! 

In Our Weakness

2 Corinthians 12: 9-10

9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

What are you going through right now? Do you feel weak- physically and emotionally? Perhaps, you may feel a little bit both! I am going through a rough patch physically because of Turner Syndrome. Well, it is a consolation to know I am not alone, and other sisters have gone through this, it is very hard to know, that it happened much older for them. So, here I am 35, and having to think about things no 35 y/o should have to think about it. I get scared! Mornings are the hardest for me right now because of the amenia and I can very moody just because I don't feel good most of the time! To add to this, my treatment plan has been tweaked and while I am much more stable, it is hard to know if it is because of the change made. Sometimes, I also wonder if my moodiness is because of the change in my treatment plan. I do think the change is temporary, but I am not sure about that. 

There have been times during my time in the hospital, and since I got home where I will literally cry out to God to help me. Moments when everything seems to much to much and I am tired. Where I feel at the end of myself. Some days all I can do is keep going. I know I must keep as much normalcy as possibly even when I don't feel good at all. If I didn't push myself (not too much), I would be more depressed and anxious. I do know my body and if it tells me something, I will listen but so far, I don't feel the need to make any changes. 

Despite everything, I do see God working things out for in me in other ways. Before I got sick, I really couldn't see what God WAS doing for me and that He was interceding on my behalf. Now, I can see it and am able to appreciate it. I can trust God a lot more, even though somethings it is still struggle. While sometimes, I still think "it's all on me," more and more often I realize that is not this case because I can see God going before me and working things out and that is what keeps me going. 

So, no matter what you are through, know you are strongest in your weakness. Use this for your advantage! Try and see the big picture. If things are not going well for you in one way, look at how well things are going in another area! Make a daily effort to look for ways God is working in your life. This will help you feel calmer and more centered because you starting to see God work in ways you did not see before. 

On Unanswerable Questions

There are questions, we all want answers to. These are questions that can weigh you down and keep you up at night. These questions go way deeper than "What's for dinner." These are questions about things that have caused us great pain.

Let me tell you mine. My question is "Why did my sister have to pass away and why did I get to live?" My sister had a severe congenital heart defect (CHD). She was born in July 1982 and passed away December 1982. When my mom was pregnant with me, they did not know I was fighting for my life and only have a 2% chance of being born alive. When I was born and it was discovered I was a girl, because of my sister, my heart was checked immediately. It was completely fine. This is amazing because heart defects are one of the causes of the 98% high mortality rate during the pregnancy of someone with Turner Syndrome. This makes my question even so much stronger! In my darkest moments, I do think it should have been and not my sister. Sometimes I think she would have been the better daughter, sister, and Aunt to little Zachary. Sometimes, I feel God could have used her a lot more than me. Sometimes, I think she could have done so much better in life, gone far farther, achieved more if she had the opportunity. 

I know my questions are normal, I know "Survivor's guilt" is a very real thing. I can give myself grace in those moments. The thing that gets me through those times is the promise that one day this question be answered. One day, I will understand. One day, I will meet my sister and we’re able to all the things sisters do this side of heaven and more! 

Things happens that we simply will not be too able to have an answer to this side of heaven. Parents’ divorce, kids develop cancer and pass away, a drunk driver can take the life of 2 brothers the night before their sister's wedding. These are just some examples. What we need to remember though is we live in a fallen world. God did not say this life would easy or that there would be freedom from tragedy. He did promise us peace. He promised to never leave us or forsake us. He promised us a day when there would be no more tears or pain. 

My Uncle passed away very unexpectedly the beginning of the year. When we saw him for the last time last December, he could not stop talking about heaven. At his funeral, we played a song about heaven and now every time I hear it, I cannot help but think of him. The song is called Hymn of Heaven by Phil Wickham My Uncle did not go to church. He was an outdoors man, and very much a reader. He loved the living in the woods. When my mom offered to help move him closer to us, he said "I need my woods." He knew His God. He knew the Bible inside and out. Listen to the song below, and worship Him and know that one day, your questions will be answered, and pain and tears will be no more! Praise God! 

Lessons Learned In the Hositial

I was in the hospital for 4 days and 3 nights because of something that can happen with Turner Syndrome. We still do not know why it happened. I take my treatments religiously because I know this can happen if you are not consistent with your treatment regimen. I kept blaming myself- until I got home and checked the situation, and saw I was consistent with everything- just as I had thought. There is NO explanation to what happened.

On Thursday morning, I woke up in complete medical distress. I could not stop moaning and could not stop crying. When I saw my mother for the first time that day, I grabbed onto her and moaning, all I could say was "Help me!!!!!" She told me to message my Dr, but I told her this is not one of those situations but that I need to get to the emergency room right away. I had seen post on Facebook from other ladies in the past who had this happen to them, so I know what to do and the protocol to recovery. 

I have learned lately, that you can learn about God and see God in every situation- if you look it to. There were some God-sightings for sure though-out this experience. 

1) I had an appointment with my hand surgeon that morning... the lady who got me scheduled for my CT-Scan, looked at me and my mom told her I was very sick, and she was taking me to the ER. She told her to take me to the Advance Urgent Care onsite and they could transport via ambulance. At Urgent Care, they took my vitals immediately and my blood pressure was dangerously low, and my heart was racing. Once they connected me to the IV, my BP improved almost immediately, and my heart rate settled. They called for the ambulance, and I was transported across the street. When we got there, they were stunned to find me already connected to an IV because "they never do that!" Who knows what could have happened if I wasn't connected to an IV right away?!!! It was MIRACLE. 

2). I learned that I have a major influence in my family! On Friday, I just started crying and telling my Mom, "I need my baby!" She asked me to text my sister-in-law to see if they could come down on Sunday. She texed me back within 30 minutes and told me my brother had to work, but they would be on their way as soon as he gets off! My time in the hospital brought my whole family together! I couldn't have asked for anything more!!! 

3) Most of the Dr's knew Turner Syndrome at the hospital. My Dr after I was admitted knows someone with TS! This made everything so much less traumatic. This was really blessing and when I had to advocate for myself, they did listen to me. 

4) I had a LOT of visitors and was prayed over. I can't say how much that meant to be. It showed me how much people do care about me. I tend to think that I don’t matter, and I have nothing to offer people so when I had people come into visit me it told me, I was loved, and I do have something to offer. Their visits meant the world to me, and I will NEVER forget those wonderful people. I learned God knows exactly what we need, and He will work to the ends of the Earth to provide it for us. They wanted me transferred to another, but I had been transferred it would have been a lot harder for me have visitors because of the location. Where they did send was convenient for people, so I was visited. My mom told them not to send me where they wanted to because it would be too far away. She fought for the best hospital that didn't make it impossible for them and other visitors to come and comfort me. 

5) On Saturday night, I was depressed. I hated my body and I hate myself. I was tired of everything must be a struggle for me - my health, finding a good job, making social connections. All I could do was cry out to God and said, "I need you!" and He came. He told me He was with me and everything is going to be OK. I learned sometimes, all we may able us is "Jesus, I need you!" or as I told to my mom moaning "Help me!!!!!" 

6) I tend to put work ahead of everything and sadly it can be idol to me. When I was in the hospital and even now (I can't go back to work on Wednesday), that my physical, mental and spiritual health are the most importand thing and work is secondary. It woke me up and helped me reshift my priorioties. Seeing new blood transfered into my system and getting 5 blood transfusions, I learned the very fragility of life. I was told at discharge, I had lost blood that I basically had whole new blood in my system. 

Find Your Voice

 If you are like me, confrontation is hard. Speaking up in general is challenging. You keep wondering if what you have to say matters. You wonder if you have anything to contribute. You wonder if your feelings matter. You wonder if what you have to say is important. Well, I am here to tell you have a voice! It is important! You must use it! Why? Well, God has given each of us a message only we can say. Even people who are non-verbal have a voice! They talk through adaptative technology, PEC Cards, and body language. Just because they cannot talk verbally, doesn't mean they can't talk! It only means the way they communicate is different than ours and that is alright! Since we have established that every human has voice, we can establish the fact that if we do not use the individual voice God has given us, that we are not able to be all God made us to be. 

For some of us, we may find we find a way to communicate in a way other than words that is easier and more comfortable for us! People communicate in painting and other art mediums, music, writing and many other ways. If you are more comfortable with this don't be afraid to use it! As a matter of fact, I encourage you to use it regularly. The more you communicate in the way that is most comfortable for you, the easier it will be. I prefer to communicate through writing. I remember when I was a teenager, when my mother and I would have a fight, after we calmed down, I wrote out a letter to her apologizing and what I was really feeling. These letters made things a lot better for my mother and me. I was able to communicate to her in a way that was the most comfortable for me. My therapist recommended recently that because of my anxiety, when I need to talk to my boss about something, to write it out and put in the office. I have done this sometimes and it has really helped, and I have never questioned why I put it in writing and did not say it verbally. If I am asked, I would say that because of anxiety, it is easier for me to initiate some communication through writing before it is verbally discussed. Anxiety is major mental health issue, and a lot of people deal with it so any employer would need to understand and cannot discriminate because of it. 

I hope this encourages you. I hope you feel better that you can communicate in many ways outside of words. When we do not use our "voice", the world misses out on who God made us individually to be. I know it is scary. I know it can be hard to trust people when we have been so hurt in the past!!! I have beat that drum and I know what is like! I have learned that if you don't past it, we are not giving people in our life right now a chance. It is not fair to them or to us. We need to learn our way to communicate like I stated above and when we should respond. For example, I learned I cannot talk to people in moments of anxiety, and I need to cool down first. Once I cool down, I can communicate from a less emotional state of mind. When I talk it becomes more based on facts then emotional. 

You have a voice. You are important! You have something to offer! Your feelings matter!! If you think anything less, they are from the Devil himself! Do not let him win!!!! 

Serving Is Healing

When I was in 8th grade, I went through an extremely dark period in my life. During that summer in 2003, my entire personality changed. I stopped writing. I wrote a lot before then. I stopped singing. I turned my back on God. I became extremely suicidal and depressed. I behaved horribly because I had so much anger. I would draw a picture of a stick person and would draw lines going out from the stick person. I would write words like "mistake" and trash." This was how I expressed my emotions to my parents about how I saw myself.

I started 8th grade and a few weeks afterwards the seizures and tics started. My depression and suicidal thoughts also become more severe. I had a Special Education teacher that year who happened to be a Christian. She had my one of my brothers previously and knew my parents. She knew I was being raised in a Christian home. Despite it being a public school, she prayed for me when we were in the classroom alone together. She would tell me that God had a plan for my life and  He was going to use me. I can still hear her saying "Kick Satan in the butt!" She told me that God was going to use  what I was going through. She would remind me of Jeremiah 29:11 that reads "For I know the plans I have for you." declares the Lord. "Plans to prosper you and not harm you. Plans to give you a hope and a future.

She had the gift of discernment and knew I needed to actually see what she was talking about- that I needed to tangibly see God using me and His plan for me. Early into the school year, she talked to the teachers in the Daily Living Skills class for children with severe disabilities. After talking to my mom, she asked them if I could help out in their classroom on a regular basis. I would see them in the mornings before school, when I went to school in the morning (I was unable to handle a full day of school so flip-flopped my morning and afternoon classes with adapted assignments). I helped them out on field trips, took some of them to the cafeteria to get their lunches and helped them bring it back to their classroom. I would have lunch with them everyday. I remember my time in that classroom and how much it helped me see that there a purpose for my life. I helped the teachers with the kids but I got so much more out of being in that classroom then I probably gave. I found my purpose in life and that was to help kids with disabilities. I did not stop working with them after I went on High School. I continued to hang out them and have lunch with them. I considered it to be safe place for me when I couldn't emotionally handle being in the regular lunch room. I remained a part of the community and it changed my life forever. I was able to heal because I was given the opportunity to serves these kids and their teachers and truly make an impact. These were the kids that were often ignored but I was able to connect to them. I was able to see beyond my own pain and think about others and although I was still depressed and suicidal I was able to hang out that lifeline and it saved my life.

My time in their classroom actually lead to the major I chose and the career that I love- Early Childhood Development and Education. Yes, these kids  were not early childhood but I was able to think about a career in education because of my time with them. I decided in 8th grade by working with them that I wanted to a Preschool teacher. I want to work with children like them but at a much younger age before they begin school. I want to work in an inclusive classroom where they are taught with their typically developing in a way that is appropriate for them. I want to work with their parents and guide them through the Special Education process. I want to tell them my story and give them hope if they want to hear it. I was once in a preschool classroom like that- as a Special Needs student. My mom would literally carry me in to school because I could not walk very well.  I want to give them hope for their children and learn that a diagnoses is only a diagnosis. It is such a small part of their child.

Serving and thinking of others is truly one of the best cures for depression. If I hadn't been able to spend time with those kids everyday I would have missed out on knowing what it is I am suppose to do! We get so caught up in how we are feel that we forget that there are other people going through things that are much more challenging. When we serve them, we feel better and we find our true healing. Serving those kids in 8th grade and High School was what healed me.

We live in a world where we are told told to "look out for number 1." We place our identity on petty things like the number of likes we get on facebook, our degrees, our careers. Wouldn't we feel less anxious if we focused less on ourselves but focusing on others instead? Isn't that what Jesus did? He did not think of Himself at all. Remember what you do for the least of these, you do onto God. 

What is Rest?

What does it mean to rest in God? This is a question in which I have wracked my brain to find the answer for. Let's get going! There is a lot of meat to this biblical issue of rest. 

We are a society, where the more you do, the more successful you are or the more successful you will be. 

We are on hyper-overdrive with commitments, text and emails to respond to, phone calls to make. The list goes on and on. We are overstimulated but because of the nature of our society, we do feel overly stimulated. This is why we need to hyper-vigilant of our mental health. Anxiety and and depression are on the rise, because of the face pace in our society. We are not in Mayberry anymore- as nice as that would be. Let's digest ways to find rest though our relationship with Jesus. 

The first thing is that worry and faith cannot coexist together. When we pray and start worrying about what we pray for, we in effect cancel out what we had just prayed. 

We can only find spiritual rest when we stop trying to do things in our own strength and when we invite God to bring spiritual rest and renewal. 

When we acknowledge who God is and that He is the creator of us and everything we see, our spirits lift. We learn to rest in God when we remember He is our helps and hope. True rest can be found simply by praising Him for who He is- despite how we feel in the given moment. 

Here are two ways to find rest in God. 

Casting Your Cares- casting Him our cares like a fisherman cast fish. When we give our worries to God, we are assigned help, rest and hope for getting through it. 

Release Attachment to Outcome- No longer living in fear of "what-if's or lose faith when things don't go our way. When we pray this way, we trust God with the outcome and give Him control. 

I hope this helps you and I find REAL rest in a society that forgets what real rest is! 

When Fear Calls

Fear is an ugly 4 letter word. It is draining. Fear can lead into depression. It can also cause one to feel discontent. 

I was listening to a podcast this afternoon. It is of a sermon. The Pastor had an illustration that really helped me. I am very visual and what he said really stayed with me. He had his phone keep going off while he was talking. To make a long story short, he said he did that on purpose. He said he wanted to show that no matter how many times a phone may ring (or in this case fear), we do not need to answer it.  We can dismiss it. He also took it a step further saying that Satan calls, we can decide to dismiss him. If he want us to feel bad about ourselves, we can dismiss that to. 

There are going to be days where fear calls us more than other. There will days when Satan tries constantly to get through to us. We have a choice if we answer the call or dismiss it. Somedays, it will be harder to dismiss the call the others. Days when we don't feel good physically are a good example about days when it is harder to dismiss Satan's calls. This is because we are weaker and more vulnerable when we do not feel good. 

I hope this helps you as much as it helped me. I am going to wrap this up with a song and a verse to encourage us as we learn to decline those calls from fear and from Satan! 

Psalm 31:25- She is clothed with strength and dignity, and she laughs without fear of the future

Joy Beyond Circumstance

One of the things that we learned during the pandemic that mental health is a crisis here in this country. Mental illnesses such as depression and anxiety are getting diagnosed at a much younger age. People with Mental Illness are unable to get the help they need because mental health issues are typically not covered by insurance. I personally know this and am impacted. 

So how do we find joy in difficult circumstances? I did some research and I found helpful insight. I am personally dealing this, so this is as much for me as for you. Let's distinguish the difference between happiness and joy. 

Happiness- feeling that life is good and you can help but smile.

Joy- Feeling great pleasure that is limitless, life-defining and transformative. 

In other words- happiness is circumstantial and we only feel it when everything is going our way. Joy transcends any circumstance and is limitless. 

Nehemiah 8:10 tells us, "The Joy of the Lord is our strength." 

Let's discuss how we get there. 

The first thing that we need to do is realize that there is an enemy that is waiting to use present circumstances against us. He will use anything opportunity to shake and attack our faith. When we say, "Nothing is going to steal my joy!", we are saying that God is bigger than any problem we face, and we are choosing to trust Him. We need to the Lord immediately when we recognize we are under attack. We need to stand on the truth of God's worked and refuse to let the devil rattle our faith. We have the power to change the structure of our brains by redirecting our thoughts. if we are more conscious about what we are putting into our mind, we will change the way we think. This does not happen overnight and takes a lot of practice. I also find it interesting that another way to fill our mind with truth is with habitual gratitude. I think this is because it helps us to remember what God did for us in the past and that He can do it again. 

I hope this helps you as much has helped me! 

Good Judge/Bad Judge

I am currently reading 1 Corinthians and I just read commentary on 1 Corinthians 4 this morning and something really struck me. Paul did not care what they thought of him. He did not even judge himself! He didn't judge himself because as humans, he realized our estimation of ourselves is usually wrong. We are either too hard or too easy on ourselves. He knew the Lord was the judge of him. He knew his righteousness came from Jesus- not from anything he did. 

I felt convicted reading that because I judge myself extremally harsh. Knowing God is my judge, brought me a little peace to because I know He loved me enough to send His son to die for me and loves me so much He would do it again. Don't think this is easy for me to say- it is hard for me to say and believe. It starts with beginning by remember God is and how big He is and how small we are by comparison. When we acknowledge how big He is, we can say "Who am I too judge?" When we think of judgement, we tend to think about the type of people we judge and don't realize how often we judge ourselves.  I am currently learning how vital it is to focus on God and not on myself. I need to remind myself constantly who God is in relation to MY life. We are much harder on ourselves then the people around us. We are very inwardly directed as society so people don't think about us as often we think of ourselves or as much as we think they think of us. 

Some action steps: 

1: Identify ways you judge yourself. 

2) Look at the situation though God's eyes using the Bible as your frame of reference

3) God give you grace- ask him to help you do the same. This is something you cannot do without His help. 

Victim to Victor

Let's be honest! Life can be cruel, and people can be even crueler! We can do absolutely nothing wrong and be completely blindsided the next minute! I have been a victim of people telling me what I cannot do. I was told to my face that I would not about to anything. I have been denied jobs and worse because of people not giving me a chance and putting me in a box because I look a different way and act a different way. They don’t understand that if they work with me, I can achieve my goals and their goals! I do my best and do all the right things such as regularly touching base and asking questions. 

I should have peace, but while I know I do all the right things and leave no stone unturned; I take everything- including what other people say and do onto myself. In other words, I take their words and actions and make them apart of my identity, so I feel miserable, anxious, and depressed. 

God says in His word, we are more the conquerors in Him, and no weapon against us still stand. We are called to be victors instead of victims. How do we stop seeing ourselves as victims? I think it is sometimes easier to live as victims because we get to hold onto instead of moving forward. Moving forward seems scarier. I know for me, sometimes I fall into a mindset that I DESERVE to miserable because "IT IS MY FAULT." This is personalizing a situation and not seeing the many aspects of the situation that may indeed not be 1. Be your fault 2. Could be more about the other person then it reflects you. 

Here are some practical steps you and I can take starting today to move us from victim to victor.

1. Don't personalize the situation if you did everything you could and do not understand. There may be moving parts behind the scenes that have nothing to do with you. 

2. Memorize scripture that show victory. My personal go-to verse for such situations is Proverbs 31:25 - She is clothed with strength and dignity, and she laughs without fear of the future.

3. Write down the opposite of what you are thinking and feeling. Train your brain to focus on positive things and not negative things. 

4. Go to God first. It is easy to vent to friends first and this seems to be our natural go-to but our natural go-should be to go to God first. 

March 9, 2004- Choosing Hope

 

                                         

March 9, 2004 changed my life forever. Before I go into that day, I must tell you what lead up to this day because it is just as important! This blog entry will go into the darkest time of my life and I tell it because it is so important. even if it reaches one person. Several years later, it is a story that still reaches people and helps them choose life.

I turned 14 in May of 2003. I won't into the why but that summer I became extremely suicidal. I had even written a suicide note. I started 8th grade that fall. I started having seizures nonstop almost immediately at the beginning of the school year and my depression went even deeper. Between my depression and seizures, I could not attend school full time and was almost kept in 8th grade and almost placed on in in-home instruction. On December 2, 2003 I was in the ER all day mainly because of the severity of the seizures. It ended up being a waste of time and no one saw me that day except for a Child Life Specialist.  When I got home, I went into a total meltdown and telling my mother "I just want to die!" and "I am going to kill myself" repeatedly. This was ironically also the anniversary of my sister's death. I will never forget the love and strength and calmness she showed that day.  We put on Princess Diaries, and I fell asleep with my head on Mom's lap. The next day, she had me home from school. She made several phones including my Youth Pastor, Dr, school, and put me on every prayer chain she could find. My Dr immediately referred me to see a psychiatrist and got an appointment only because I was suicidal. They had no openings and had to squeeze me in. 

Three months later, my Grandfather completed suicide. I will never forget anything that happened that day. Getting home from school and Mom saying she had to check on Grandpa because Dad had not heard from him all day and it was out of character. I remember the Police Officer knocking on our door to check on my brother and I who were minors at the time and to make sure someone would be with us soon. I remember picking up the phone and Mom telling me to put my brother on. I remember him talking to her and will never forget how he handled me so well. He said "No! No! No!' to Mom so I knew something was very wrong. He told me to sit down and said, "Grandpa killed himself this afternoon." I will NEVER forget what he said to me after that most importantly. It still speaks to me today. It was like God speaking through him. He told me. "Stop! I know what you are thinking! Stop!" (he knew I was thinking if our grandfather could kill himself so can I) "You have something that Grandpa did not have. You have hope!" I will NEVER forget that. 

My Grandfather's decision made me see what would happen to my family if I went through with my plans and I knew I simply could not do it. 2 months after his suicide, I turned 15 and survived the most awful year of my life when I wasn’t even sure I'd see 15, I knew I had chosen life for good! I will never forget that my Youth Group had put a huge Surprise Birthday party.. cake, decorations and presents included. It was the first time in that whole year where I was able to laugh, smile and be happy! I hadn't been that happy for so long it took a long time for me to get use to it. The depression and seizures were still there. I still had see my Psychiatrist often but I knew I survived and that was the biggest hurdle. I have not been off an anti-depressant since I was 14 but I am a fighter. 

His decision to complete suicide is what ultimately drove me to CHOOSE LIFE! It took a LONG TIME. I had so many people praying for me. They prayed I'd choose life, see the light, and find my way back God (I turned my back on Him the summer of 2003). I started attending Youth Group at a new church which I'd attend until I was 28. I didn't really like Youth Group because I didn't fit in and no one really understood me. I would attend Central Ohio Nazarene Youth International Winter Retreat in West Virginia with them and 600 other teens all 4 years of High School. This the best part of Youth Group for me. I never felt so close to God and felt His presence in such a powerful way to that point! Those 4 Winter Retreats changed everything for me more then all my appointments with my psychiatrist. I felt so close to God and felt His presence in t

My last Winter Retreat in 2008 when I was a Senior was the one that brought about total healing for me. I didn't spend too much time with my Youth Group that weekend because after the first service we had I knew I needed to be alone and figure things out, let go of anger over my seizures, and just had a lot to work through. I got right with God that weekend and came back to Him. I remember coming home and feeling a freedom I had not felt in 4 years. One of my classmates even commented on my demeanor the next day.  

Because I chose life I graduated from high school. I have been able to travel a lot and see friends around the country. I graduated from college with honors. I became an aunt in 2017 to the most precious little boy.  I learned how to cook. I work full time in my field. I have been able enjoy so much all because of 2 simple words... choose life! That's literally all it takes. 

I hope you never have to learn things the way I did. I hope you never have to go through everything I went through that horrible year This story does have take-aways though no matter who you are.

1) You matter to people more than you know.

2) There are so many blessing in everyday life. 

3) Healing is slow sometimes, but it is there.

4) Hope is always there and comes from people you least expect it to. 

5). Choosing life is an everyday decision and life is more than just getting through the day. Life is inside us, it is in the blessings, it's in those quiet moments and family noisiness! It is in the mundane and extraordinary! 

HAPPY TURNER SYNDROME AWARNESS MONTH 2024!!!!

Happy Awareness Month to my beautiful and amazing, perfectly and wonderful butterfly sisters, their parents and families! This is a very important month for the TS community. Dr offices, social media, schools and workplaces are being filled with information on Turner Syndrome with the goal to raise awareness and facilitate research to improve quality of life for every butterfly and their families! TS sisters, you know how much I love you! I have said this many times and I will say it again- I am only a text away if you need anything! If you want my number, I will gladly give it to you! You are so important to me, and I won't stop fighting for you!

So, this blog is going to be a little different. I wanted to share WHY awareness is so important and why we do what we do. This blog may be hard for some to read but it isn't meant to scare you. It is meant to motivate you to be the change you want to see.

Jennifer Garret-Jones' little sister, Cassie, was 34 when she passed away from complications due to Turner Syndrome. I followed their story when all of this happened, and Cassie and her family really touched my life with their story. I direct messaged Jennifer asking her kindly to help me share Cassie's story. She graciously has done so! Here is what she gave me in response. I haven't changed anything or taken anything out! I hope this inspires you. I think what she says here can also save lives because she says her family learned about TS through their experience. Cassie's death sadly may not have happened if her medical team listened to her family from the beginning and had knowledge of Turner Syndrome.

Here is Cassie’s story. It is long but it so important so please read to completion!!!!!! 

Cassandra Mae (Garrett) Garrett

February 2, 1986 ~ December 18, 2020 (age 34)

Cassandra “Cassie” Mae Garrett was born February 2, 1986. She grew up in Tuttle, was a National Championship Cheerleader, showed pigs, and was an FFA Sweetheart & Officer. In college she was in Alpha Gamma Delta sorority, RLCC honors program and school pride program, and graduated with two degrees in Early Childhood and Deaf Education. With a servant's heart and a special love for children, the Lord used her gifts to teach Preschool and Kindergarten in public and private schools, as a Children's Pastor, and through retail and restaurant industries. No matter the role, she was always drawn to serving others, and she was a friend to all. Cassie had a pure love for her family and especially her German Shepherd "Bear". She was proud to have accomplished independence by purchasing her first home and car and was on her way to soon becoming a foster parent. Cassie was a devoted member of her church, faithful to Jesus, and leaned into her faith in both triumphs and when facing obstacles. As a result, she has impacted lives in more than 40 countries.

What most people never knew throughout her very active and successful life is Cassie had Turner Syndrome (TS). She followed all recommended protocols, including having heart tests just months before the beginning of her end. With no warning signs, on January 30, 2020, Cassie had a massive aortic dissection. The severity and impact of the tear could have been lessened if the ER staff had been educated on TS and had provided a CT scan immediately upon check-in. 

Cassie’s family had beat the ambulance to the hospital and prepared the intake staff that this could be an aortic dissection. Unfortunately, the EMT assumed Cassie just had severe indigestion due to excessive burping (every 15 to 60 seconds) and normal blood pressure and ultrasound. During check-in, her family helped her click the chest pain box. In the triage room, when her BP and EKG looked normal, her family told the staff they were taught by professionals it could still be her heart even if these tests come back normal. When she finally got back to the ER room, Cassie and her family were again ignored and treated like it was indigestion. Her pain was below her chest and not where you would expect typical heart pain. Her family even pulled up articles from Turner Syndrome Society of the U.S. and the Turner Syndrome Foundation websites that showed probable aortic dissection, but to no avail. It wasn’t until the doctor decided to do a CT scan of the stomach that he found it was indeed an aortic dissection. By the time she got into surgery – nine hours after arrival - her main blood vessel tore from inside her heart valve all the way down to her hip, and the surgeon gave her no hope of survival. 

Cassie survived the initial heart surgery. However, it was almost five months before she would go home due to systemic complications that were a result of TS. It was two weeks before an ICU Intensivist doctor finally asked, “Tell me what you’ve been trying to tell me.” The blood vessels of TS Girls are narrow and leak fluid into the body quickly causing fluid overload which can impact the heart, blood vessels, veins, and entire body. Cassie had interstitial edema, meaning fluids were between the vessels and skin and connective tissue and so on, impacting the lungs. She had Vasoplegia which was the cause of her low Blood Pressure issues and exacerbated by surgery. Unbeknownst to her (it never showed up on scans), Cassie had partial anomalous pulmonary venous connection where one of the veins connected from her lung to her heart was misplaced. She had pulmonary valve and other coronary artery abnormalities as well. As a result, she ended up having multiple surgeries to remove fluid from around her lungs. She also had very narrow nasal canals, so had to breathe through her mouth which required an oxygen mask instead of a nasal canula. 

The feeding tube was a great battle in and of itself. For Cassie, food had to go in the J tube to intestine and medications in the G tube to the stomach. It had to be flushed every 4 hours with warm water or coke or it got clogged, which meant she had to go back into surgery to have it replaced. Her feeding had to stay below 50 most of the time. This became such an issue that her family kept a sign posted by her machines and bed as a constant reminder. 

All of this happened during the start of Covid when the world shut down. Cassie’s family had to get a disability lawyer to use the Disability Care Act to get permission for her Momma to stay as her Advocate. We share all of this not to alarm you, but so you can be educated on things to consider should you or your loved one with TS require surgery. Cassie’s intensivist doctor said, "This is a very complex case. We will do what we can do here, but the most powerful thing is we hope for the best," and he pointed his hands up to God. Indeed, Cassie and her family’s faith in God, the healing power of Jesus Christ, and the way they ushered in the presence of God into her ICU rooms is why Cassie survived her long hospital stay. The girl battled with so much faith, fire, and grace! But her family had to fight just as hard – advocating for her with doctors and nurses and through their Christian faith. 

When she left the hospital after 69 days, Cassie was moved to a specialty rehab hospital where they repeated many of the same mistakes that the hospital had due to lack of knowledge about TS. But Cassie pulled through, and after 134 days (4.5 months), she got to go home where her hometown welcomed her with a parade of more than 90 friends and family lining the streets with purple shirts, welcome home signs, and balloons in honor of Cassie and to shine a light on TS awareness! 

What is important for Turner Syndrome families to know, based on Cassie’s experience is:

A) Make sure your TS Girl wears a medical bracelet 24/7 stating: High probability of aortic dissection; Require CT Scan to confirm.

B) When you call 911, talk to EMT, and arrive at the hospital, if your TS Girl is having chest pain or even stomach pain, demand a CT Scan. Keep in mind the aorta can tear at various points along the blood vessel.

C) Make sure your TS Girl has an Advocate (or two) who understands TS complications with them 24/7 so they can fight on their behalf. Use the Disability Cares Act if you have to. For adults, remind them when they check-in to sign a form for their chosen Advocate/s to be able to access all their medical information and speak with doctors. This will empower you to fight for them if they’re rushed into surgery. 

D) Make sure anyone treating your TS Girl understands the probability of leaky, narrow blood vessels causing fluid overload. As a result, insist on them using a Vein Finder anytime they have to get an IV, labs, etc. as it will be much easier on them. 

E) If they have to get a feeding tube, make sure the nurses and IR team understand they need to be handled differently due to TS. For Cassie, food had to go in J tube, meds in G tube, and flush every 4 hours. 

F) Consider an oxygen mask over a nasal canula if they have narrow nasal canals. 

G) Make sure your TS Girl has all paperwork in order now, including an Advance Directive, Medical Power of Attorney, Durable Power of Attorney, and Will (all different documents). It is extremely difficult for a trusted family member to keep her car, home, and bills taken care of if they do not provide them authority in advance. Advise your TS Girl to keep a copy of these files saved on email that she and her Durable POA can both access from their cell email anytime to easily forward to medical staff in emergent situations. Also make sure the Durable POA has the code to her cell and essential passwords such as email, medical apps, etc. 

H) Grow your faith and your fight! They will be your rock, your hope, your salvation, and your peace. 

Just as her family tried to get the medical staff to consider, Cassie’s Turner Syndrome diagnosis led to an aortic dissection. The aortic dissection led to heart failure, which led to her death – as was stated as cause of death on her death certificate. In her last week on earth, no one knew she only had days left. She wasn’t feeling well, but she did not have Covid like many suspected. The family learned after it was too late her difficulty breathing was due to fluid overload again. She had gone to the ER that Monday and they said her symptoms were not bad enough to keep her since they had too many Covid patients filling beds, so to bring her back if her symptoms worsen or if she gets Covid. That Friday, Cassie died peacefully. 

Her family believes Cassie caught a glimpse of Heaven during one of her surgeries. There came a point when Cassie was tired of fighting and was ready to go to her Eternal Home, and when that moment came, she asked her Momma to go get her prescriptions, cuddled up in her favorite chair with her hands tucked in prayer position beside her face, and Cassie went to her Heavenly home peacefully at the age of 34 that Friday, December 18, 2020. When Cassie opened her eyes that final moment, she was in the presence of Jesus. She fought the good fight, finished her race, and kept her faith.  She won her final battle. Cassie’s fight and faith will forever be a light to all who hear her story. And her family will continue to Advocate for Turner Syndrome awareness and education so more TS Girls and their loved ones can grow their faith and their fight, like Cassie. 

Written by her sister, Jennifer Jones, 2/2/24

  

If you have a butterfly in your life, I have a very special challenge for you!!! Please tell at least one person in your life about Turner Syndrome!! It can be as simple as saying it is a genetic condition that results in the complete or partial absence of the 2nd X chromosome. When you tell someone, tell the butterfly in your life what you have done! It will mean more to them then you will ever know! 

Praying Angels

I am having a minor surgery/procedure on Tuesday. It reminds me of a simple, yet powerful truth. People have been praying for me all my life- even when my parents were expecting me- they were praying for me. 

I was so little and no recollection of it, but I am told from the time I was a baby, whenever I had a surgery, there would be a crowd of people from the church in the waiting room while I was in OR praying for me and the medical team operating on me. 

As I got older and could understand what was going on and was so scared and traumatized, the Senior Pastor would meet with me in the pre-surgery room. He would ask me what Bible verses I wanted him to read, and he would read them out loud to me. He would pray for me and tell me how much God loved me, that I was going to be okay, and God had a plan for my life and was going to use me. I haven't had any much contact with this Pastor in years, but I hope and pray that he realizes I will never forget that and that he has made such a huge impact on me. He was there for me before every surgery- no matter how small. He knew I was only a child so any surgery in my eyes was scary and traumatizing. He made me feel so at peace that I never cried going to the OR. I was able to brave and know I was going to just fine! 

When I was 14, I went through a very deep depression with suicidal ideation. Once again, these prayers angels stepped up and prayed for me! I remember one time, I started to have a seizure during church. I walked to the Youth Room where I was free to do what I had to do (remember these are Pseudo Seizures). During this time, one of the youth leaders came in to check on me. She loved me through the seizure, and I don't think she said much to me. She just wanted me to know I was not alone and know she was there for me. When I was still in the Youth Room resting, she got a bunch of people to go into the Prayer Room. She then came back and told me to come to Prayer Room. She said there were people who wanted to pray for me, and the Pastor wanted to anoint me (I was having medical test the next day). 20 years later, I still remember that. I remember my parents there in the Prayer Room waiting for me with everyone else. It was a special moment that moved me to tears. 

When I graduated from college, it was such a humbling experience because I remembered all the people praying for all my life and seeing their prayers answered in such a powerful way- my college graduation! I have no doubt it was their prayers for me even as a baby that led me to that moment! It was not only a testament to my determination but also to those who prayed for me all my life and the God who heard their prayers and answered them.

You will never know the impact that you make on someone's life just by doing little things. Little acts of love, kindness and just praying for someone speaks volumes! I don't think these people can understand how much their prayers mean to me. I know without about their prayers for me continue to do this. I am trying to show you, that what you do matter, what you say matters! You have a value that you may not know you to have to the people in your life! There is something you bring the table that if not for you there would be an irreplaceable void! You matter! You are an angel to someone! 

    

 

Backpack

Last week, I had a meditation on being an overcover. One thing that really stuck out at me, I am going to write about today. 

How many of us have baggage that we carry around daily? These can range from anxiety to depression, financial concerns, jobs, and so much more. 

Towards the end of the meditation, they were talking about backpacks and books. Imagine you are carrying a backpack with lots of books. Now I want you to title the books with the things you are carry daily. For example, if you deal with anxiety- title one of your books "Anxiety." If you have health issues, title one of the books "Health Issues." Whatever you are facing, make a title for it! After you have done this, imagine giving that backpack to Jesus. It will be hard and tempting to not take the backpack from Him but do your best and know that even if you do snatch it back, He will love you anyway and is willing to take it back from you again and again. Just because you take it back, it doesn't mean you have to carry it again. You can keep handing the backpack to Him as often as you need. To be honest, this is something we must practice daily. It is a daily act of surrender.                         

Now, I took this exercise to another level by drawing a backpack in my journal. I titled it "Backpack to Jesus" and drew books, titling that books with the things I carry daily. This helped me really drive the point into my mind. When I find myself batting with the "books", I remember what I drew, and it stops me in my tracks, and I remember I gave it to Jesus. So far, I have noticed a considerable difference. 

We were not meant to shoulder the burdens that we carry. It isn't ours to begin with. It belongs to God. The battle is not ours’s to fight. We live in a society where it is all about self-help. There are so many self-help books that tell you how to "fix things." While some of these books may be helpful, they are only really a band-aid fix to the bigger problem. The thing is we can’t fix things on our owns. The bigger problem is our need to be in control. It is in this control, that we think we find what we are looking for, but it will only lead to a dead-end each time. 

My application for you is to draw your backpack. Draw books in your backpack of things that you carry. On the top of your backpack, write "Backpack to Jesus." When you catch yourself carrying the things in your backpack, remind yourself that you gave the backpack to Jesus. Remember, it is not going to be a one and done decision but is one you will make daily. The more you practice, the easier it will be and the less you must think about doing it!