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!  

Circumstances, Identity and 2024

WELCOME TO 2024!!!!! 

This blog is going to be to as much for myself as it is for you. It can be very hard not to let our circumstances become our identity. We tend to think that our circumstances are what make up our identity but that is not the way it works. They are two separate things.

Let me start with an example. There are a two very private aspects of Turner Syndrome that I do not talk about or want people to know about. It is not something I am embarrassed about but it is something I have really comes to term with. It just does not define me! I put my treatment on twice a week and that is it. It has not always been an easy road but compared to my sisters, my family has made it a lot easier to accept. I am so accepting of it now that I do not want people to know because it does not define me. 

This is an example of how I put a distance between myself and a circumstance that I have no control over. I wish I could say this about every situation I am in but that is simply not the case. God has been faithful in helping me trust Him more but when things are not the way I want them, I place my identity in these circumstances and up berating myself, beating myself up, and not feeling like I am enough. I get so angry and frustrated because while I can accept the example I gave above; I struggle to accept smaller things!!!! 

In 2024, I desperately want my identity to be solely on who I am in Christ and in what He says I am in. How do we get to a place of acceptance and separate our distance from circumstances and our identity? In the about example, I have learned to accept it simply because there is nothing, I can do about it! I realized as a teenager; I would rather make peace with it because it makes no sense in my mind to let something that I have no control to determine how I feel. I can often be heard saying "It is what it is." I know this will not work everyone but for me it worked. I felt more in control in a situation in which I cannot change. 

In 2024, there will be things that test us. There will be challenges. Things will happen that we have no control over. For those of you like be in control like me, when you put distance between your circumstances and your identity, you are in a way taking control of that situation. It doesn't define you. You can see the situation differently and thus you will behave differently. 

I encourage you to work on this in 2024 if you struggle with this area as much I do. I am just as guilty as anyone when it comes to this topic, and I will be walking alongside you in this journey of changing it. Are you ready to see yourself differently? Are you ready to see yourself as God sees you and not the circumstances you find yourself?  Let's do this! 

Just Do You!

I have not been called to the wisdom of this world

But to a God who's calling out to me

And even though the world may think

I'm losing touch with reality

It would be crazy

To choose this world over eternity

Crazy By Mercy Me 

I am a Christian who was raised in a devout Christian home. I am so thankful for this and wouldn't change it. However, I was not exposed to a lot of things I am now exposed to daily such as cussing and smoking. When I started working in food service, I realized just how different I am. I admit I am exposed to things daily I am not use to because of my up bringing. I am seeing things about myself I didn't see before and how different I am. I know I stand out for not taking smoke breaks and not cussing. Some day’s it is very hard not wanting to conform so I can fit in better. These challenges are growing me, stretching me and having me think about not only what I believe but why I believe it. This is whole new ballgame in an arena I never have had to enter! 

Despite the differences that make me stand out, I can't count how many hugs I get from the people I work with daily. Daily, I am told "I love you, Molly!" and "I am so glad you're here!” It makes me know I am making a difference. I am a very quiet person and not very talkative about my faith. A part of is because I am introvert but a part of it is because I know actions speak louder than words, so I let my actions talk for me. Most of the people I work with know I am a Christian and I am not ashamed of it anymore. I just am not go preaching on Vegas strip. I know there are plenty of Christians who talk the walk but do not actually walk the walk which sadly has resulted in people not being wanting to think about becoming a Christian or going to church because of the things they hear Christians say. Churches are dying and struggling. 

So, how do I stay away from caving into the things I see daily? Somedays I honestly don't know how I stay grounded... except to say it must be God helping me. When I see smoking, I think about what a slim chance I had in being here- 2% - and I don't want to destroy it with things that are unhealthy and put me at risk. I have already been through so much medically and will go through so much medically in the future that I don't want to do anything I know will make things worse. I do not cuss because I have other ways to articulate what I am wanting to say that are much more professional and just sound better.

I do not judge anyone- in fact I am probably one of the least judgmental people you'll know. Everyone has a right to do what they want and say what they want. I don't think any less of my coworkers just because they smoke. It is just to put it very simply, not something I want to do personally just like cussing. I am fine with this and accept it. I know this who I am, and I am not going apologize for it. 

What sets you apart? In what ways are you different and don't go the status-quo? It does not have to be being a Christian. Whatever it is, please know it is okay. You never know that how one aspect of you is making a difference! It is hard. I know how hard it is! I live it every day! The thing is if you try to conform, you will be very uncomfortable because it is not who you are meant to be and you doing something you really do not want to do just so you fit in. I'd rather be uncomfortable being different than being uncomfortable for doing something I know is not me!