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! 

My Turner Syndrome Story with Multiple Diagnosis

I am a unique butterfly. I have Turner Syndrome with multiple diagnosis. I have also been clinically diagnosed with Tourette's Syndrome, Pseudo Seizures, Severe Clinical Depression, OCD and Generalized Anxiety Disorder! Just to add fun to mix, I also have Nonverbal Learning Disability which affects 99% of girls and women with TS to some degree or another. NLD causes me to have intense social anxiety and have a hard time navigating social settings. A part of NLD I had when I was younger, but not now is the inability to interpret social cues. Having NLD has impacted my ability to drive because I have visual-spatial issues and issues with depth perception. Intellectually, like most butterflies I have normal to above average intelligence and am verbally gifted. 

I was born in 1989 in Columbus, Ohio, weighing 5 lbs. and 15 ounces. My doctors and folks knew something was very different about me early on. My parents were told I’d never walk or talk, and my prognosis was not good. If they said there was a 10% chance of something bad happening, it’d happen to me. I could not keep any food down. Before I was one year old, I had two major surgeries. The first one was a Nissen surgery where they opened me up and twisted my esophagus to prevent me from getting sick. After that surgery, I went back into the OR for another surgery to insert a feeding tube. I was on the feeding tube long enough that it affected my development substantially. I was delayed in learning to walk and talk. I learned to walk using a walker. 

Fast forward to 7 years later- 1996. I was not growing or gaining weight. My medical team discussed reinserting my feeding tube. My amazing mother was adamant about that not happening. She also knew the doctors where stumped, and something told her they were on the wrong track. She knew my well-being depended on her finding the answers, not my medical team. She started researching multiple medical conditions. To make a long story short, when she stumbled upon Turner Syndrome, she just knew. 

At first, my doctors were adamant that I did not have Turner Syndrome. She wouldn't hear it and basically told them "You are going to run a karyotype." A karyotype is a simple blood test that looks at chromosomes. They did that and it came back positive. I have classic Turner Syndrome or XO type. My second X chromosome is completely absent, and I only had a 2% chance of being born alive. Turner Syndrome explained my feeding issues as an infant, my frequent ear infections and sinus infections, my social problems, and so much more. Today, TS does not affect me all the much except socially, emotionally, and cognitively in Math. Physically, Turner Syndrome has caused me to have progressive hearing loss, a horseshoe kidney (with no issues), some minor heart defects that need annual monitoring but not a real concern at this present time, and hypothyroidism which is well controlled with medicine. I also routinely have high liver enzymes but again no issues there and it is not much of a concern. 

The day I was diagnosed with Turner Syndrome, my mom called my Pastor and asked if he could come over that night so they could all pray for me. They prayed a long time for me. I don't remember this or seeing them actively praying for me. I just know it happened. My oldest brother was told to distract me and play with me so I wouldn't know anything (they wanted to wait until after the holidays as I was diagnosed the week before Thanksgiving and was only 7). In retrospect, I can say in many ways the prayers they prayed that night were answered. When I had all the testing done to see what parts of TS I had and didn't have, it turned out to affect my body at the lower end of the spectrum and still does today. I can accept parts of TS that can be extremally hard for us to accept. When Mom sat me down and told me I said, "It's going to be okay, We've got this," or something along that line. I asked Jesus in my heart a days after my mom sat down and told me. I knew the scope of what the next few months and years would look like with medical test, specialist, night shots to help me grow, and surgeries. I knew I couldn't do it without a relationship with God. Today, I can still say that I cannot live with all these diagnosis without a relationship with God. 

In 7th grade, I noticed very subtle jerks in my head. In a foreboding sort of way, I told my mother I thought I had Tourette's. At the end of 7th grade, my brother Matthew graduated from college. He got engaged and a few weeks later, she broke the engagement. She blamed me. That summer I became depressed and very suicidal. In the beginning of 8th grade, the tics really started, but they were so much than that- they were also seizures. Very long story short, several tests were done locally to see what was going on with no answers. I was transferred to Cincinnati Children's for neurology where I was diagnosed with Tourette's syndrome and Pseudo Seizures. My pediatrician called the best child/adolescent psychiatrist and got me in as an emergency. He diagnosed me with Severe Clinical Depression and Generalized Anxiety Disorder. 

All my diagnosis is a lot to deal with. Luckily, the Tourette's and Pseudo Seizures are pretty under control. I still have them when I am tired, depressed, anxious, or in a lot of pain. I deal with depression and anxiety still today, but I am much stronger than I use to be. 

I would not take any of this away from me. It also doesn't define me! I graduated from college with honors in a degree of Early Childhood Development and Education. I learned in college that a diagnosis truly means nothing! I am so much more and THAT is what I want you to know. I am a daughter, a little Sister, and an aunt to a precious little boy. I am a traveler. I have been to 38 states! I travel by myself often. I fly more often by myself than with family. I love to read, go to church, being funny, writing, and watching shows that make me laugh! I have done everything no one but my parents said I could do! 

I want to make a difference in children's lives. I want to make a difference in the lives of their families. I want to work with all kinds of children - especially with children who have medical challenges and disabilities. I want their parents to hear my story and let it give them hope for their bundle of joy! The ideal job for me would be working an inclusive preschool classroom with children with disabilities and/or medical challenges learn alongside their typically developing peers. I want to tell their parents my story and tell them what I wish my parents were told. 

I have days when it is hard. It is hard to feel different. It feels frustrating and you wish things would just work for you like you see it does for everyone else. It is so easy to compare yourself to others and feel yourself fall way short. This journey is NOT easy, but I can honestly say I am thankful for the journey. I wouldn't take anything way. If my story can just give one person hope; if my story gets just one person to choose life if they are suicidal like I once was for the longest time, I know I have done my part, and know my journey isn't in vain. I will continue to choose life every day and encourage others to do the same. I am thankful I chose life so I can take other people by the hand and help them choose it for themselves. 

Today, I am 34, and currently work in food service which has worked out well because I have been able to learn skills that don't come naturally to me because of Nonverbal Learning Disabilities such as interacting with people and seeing the big picture. It will help me go back into childcare when I am ready.

My parents raised me like they would if their daughter didn't have a medical condition. They were realistic but they also raised the bar high. In a sense their attitude was "You WILL learn how to talk to people, you WILL learn how to travel on your own, you WILL learn how take care of yourself and advocate for yourself, you WILL work independently without outside help." They never held me back from doing what I want to do- like going to college and graduating from college, flying the country myself, and giving me the tools to be a functional adult by teaching me basic fiscal responsibility and literacy, learning how to interact with people and so much more. 

What about you? What sets you apart and makes you different? My biggest advice for anyone is to find your support system... for me that has always been my immediate family and every church I've gone to. Learn about yourself and what your skill sets are... learn your weakness. Learn how to make your weaknesses work for you and not against you. Be true to who you are and don't be afraid to advocate for yourself. Choose to go beyond the labels that people have put on you. You are so much more than that. Don't let the nay-sayers win!!!!!! You've got this! 

2023- The Mountains and Valleys

I will be honest and come right out and say it! 2023 was a hard year! I know some on you echo that sentiment and that is okay.

2023 for myself, was a lot of changes, a lot of job searching, tears, and so much more. Still even in the bad it is important to look at the good.

In March, I had my annual cardiology appointment. Before I saw my cardiologist, I had a cardiac MRI because I was due for more extensive imaging then the echo. When I was asked what kind of music I wanted to listen to, I said Christian. Lo, and behold, one of the first songs to play was Evidence by Josh Baldwin. I knew the results were going to be fine when I heard that, and I felt God and my biological sister and fellow heart warrior with me in a very tangible way. I will never that!!!  The verse that leads to the chorus and the chorus goes like this.

Evidence by Josh Baldwin 

Help me remember when I'm weak

Fear may come, but fear will leave

You lead my heart to victory

You are my strength and You always will be

I see the evidence of Your goodness

All over my life, all over my life

I see Your promises in fulfillment

All over my life, all over my life

The results of my MRI came back with some changes and some enlargement and very minor leaking in my aorta. My cardiologist said this could because of my Turner Syndrome or bicuspid aortic valve. He said it only requires monitoring and that it is nothing to be to be concerned at this time, and when he measured my heart using the Clinical Guidelines for Turner Syndrome, they were right in the healthy range! 

In April, I put in my 2 weeks’ notice to Panera Bread after 2 years and 6 months. This was a job I thoroughly loved, and I loved my customers, and they loved me. My last day was May 2nd. When I put in my notice, I immediately gave my regular customers the courtesy of knowing. They REALLY went all out for me those last 2 weeks. I received so many hugs, cards with money in it,  had one customer bring me in flowers my last day, and another customer asked if she could pray for me, to which I responded "Yes."

Then, the move! Oh, the move!!! The move was supposed to take to place in late June but the construction on the apartment was not done and the move date kept getting pushed back. The keys were given on July 6th, and the move-in day was Monday July 10th.

Two days after move-in day, on Wednesday July 12, I flew out to Houston, Texas to attend the TSSUS National Turner Syndrome Conference and was there until the following Tuesday. This was the first one since the Pandemic. There were over 600 people at the conference, and more than half of attendees were girls and woman withTS. This was by far one of the highlights of the year for me. During the conference, we learned a lot about mental health issues in TS, social issues and role-played social situations, employment issues, and physical health issues. Outside of the conference, I went to the movies 2 times with my roommates, took a bus tour of Houston, went to the Aquarium, went to the Houston Museum of Natural Science and did every exhibit there- giving priority to the butterfly exhibit where we surrounded by tons of beautiful butterflies! We had dinner at restaurants with our TS sisters, and we took a bus trip to the Houston NASA Space Center after the conference let out that Sunday! 

When I got home, my nephew was here! Yay! However, I had a very routine Dr. appt the day after I got back, that quickly became anything but and it was scary and touch and go the 2 weeks afterwards until I could get the testing done, Fortunately, the results were good. I have to follow-up testing in January, but the results are not expected to change. Depending on the results, I can go on a once-a-year schedule. It is something that doesn't require surgery now but could someday. 

The Sunday after I got back from Houston, and getting scary news from my Dr, I started attending a new church. This was hard. I loved my old church home so much and had been there since I was 27 and it was the church I grew most spiritually and was baptized on Easter Sunday 2019. It was very scary starting over, in a church where I knew no one and had absolutely no connections. Fortunately, that has gotten much better and is continuing to improve. 

The biggest hurdle was work.... I started a job (while will remain unnamed) and was there for 5 weeks. It was a hard 5 weeks as I was not getting the hours I needed, and it just wasn't a good fit. During this time, I had interviews at child care centers by all of which I was turned down. I had many meltdowns over this situation. I continue to sometimes because I feel a little at dead-end career wise. Things turned around a little when I got a phone interview at Wendy's and was literally hired within 10 minutes. It was a Thursday night. My last day of work at the other place was Friday. On Saturday, I came in for the first part of my orientation and the rest is history. The people I work with are amazing and treat me well. I feel like I fit in and I feel loved. It isn't a cure but a band-aid. I want so much more for myself and will begin looking for what that is in the Spring.

This basically sums it up. Did you have more valleys or more mountains this year? If you feel alone in the valley, know that is okay and you are not alone. This year was hard for a lot of people for a lot of various reason- living paycheck by paycheck while dealing with inflation, moves, job transitions. We can only do the best we can with the cards we are dealt for that day. That is all we can expect of ourselves and of those around us. 

As we wrap up this year, please know it is okay to go into a new year not having all the answers. It is okay to overwhelmed and sad when looking at the challenges. Acknowledge those feelings and don't run from them. Just look for the joy and light in the year, during the darkness. It may take time, but it is there however faint just the sun above the clouds on a rainy day.

Butterflies @ Olive Garden!!!!! 

My AMAZING roomates!!!!! 

Experiences Having A Genetic Condition Has Given Me

Having a complex and rare gentic medical condition (1 in 2,000) can be hard! It can require having to be seen by mulitple doctors, multiple surgeries, and even needles. It can even mean having to learn how to live in an adult world with the height of a child! It can mean a lot of challenges socially and emotionally, Most people think that a medical condition thinks you are disabled, but with Turner Syndrome it is in most cases not like that at all! We have normal to above average intellegence and live very full lives! We just have a genetic medical condiiton that causes bumps in our lives. 

I have had SO many AMAZING experiences because of having Turner Syndrome that I can honestly say as that much as having TS has taken away from me, it has also enriched my life so many ways! Here are some of the fun and amazing things I have gotten to experience just because I have TS! Most have taken place at a National Turner Syndrome Conference unless otherwise specified. 

1) See Mount Rainer and the Pacific Ocean    

2) Spend a day in Estes Park/Rocky Mountain National Park with a butterfly and her amazing parents who let me tag along!

3) Fly to Phoenix the day before my 29th birthday and getting to spend my birthday with one of my friends at the Grand Canynon and spending the night there! 

4) Getting to go Disneyland and California Adventures.    

5) Getting a behind-the-scences tour of the Grand Old Opery and Ryman!

6) 2 road trips to Sedona with my friend!

7) Going to Washington DC and getting a tour of the Capital and Fords Theature. Seeing all the momuments and most museums with my friends. 

8) Going to Stockyards in both Dallas and Fort Worth.

9) Going to the Nashville Zoo, Phoenix Zoo, Dallas Zoo and Fort Worth Zoo.    

10) Spending a weekend with 3 friends in Chicago on the Navy Peir, going on a ferris wheel at night to see the Chicago skyline, and fireworks over the pier. Got to see a lot of Chicago outside of the peir to.

11) Going to Houston, Texas. Going to the Houston Musuem of Natural Science, getting a bus tour of Houston, going to the downtown aquarium, see the city lit up at night. Going to the Houston NASA Space Center!

These are just the main experiences that I have the privelege of having and on the hard days, I realize how blessed I am to have this condition because of everything and everyone it has added to my life!!! 

2 Sisters- 1 Story

In Memory of: Corrie Elizabeth Van Gilder

July 1982- December 1982

I have written my story of living with Turner Syndrome many times, but I have neglected to share a huge part of my story. My story isn’t complete with her. 

Before I tell this story, it is important to know my parents decided when they were expecting my oldest brother that they would not do prenatal testing done on him or any of their future children. They also decided they would not know our gender until our birth. This is because they felt God would give them the children they needed and that everything would work out as it was meant to. This means they did not know the odds my sister and I were facing. I am grateful for this to this day. 

My sister was born in July 1982- 7 years before me. It became appearent fast that she was very sick. It was discovered she was born with a severe heart defect. From what I’ve been told she had a missing pulmonary artery. Before the heart surgery, my parents were warned there was a chance she may not survive and sadly she didn’t make it through the surgery and passed away on the operating table. I have known about her as soon as I was old enough to know and when the conversation comes about siblings, I also always add her. As a child and to this day, I simply say “I have a sister, but she lives with Jesus, and I’ve never meant her.”

Our stories become one the day I was born. When I was born, and they saw I am a female, they immediately ran test on my heart to make sure I didn’t have same the defect as my sister. Her heart defect wasn’t genetic, and I think they did this for my parents at their request for their peace of mind. My heart came out completely healthy! This is how I know Corrie (with God) is intervening on my behalf and keeping me safe. 

There are other signs of Corrie’s impact on my health and Turner Syndrome journey. My prognosis wasn’t good. My parents were told by many specialists I’d never walk or talk. I had severe eating issues (which was a major red flag for Turner Syndrome that they missed for 7 years). I know Corrie and God are the reasons that I can walk and talk and do everything that the Doctor’s said wouldn’t be possible. 

My sister has shaped how I see TS because I have been blessed to live the life here, she sadly missed. It keeps things into perspective. I see her in me having TS because I think wanted me to have sisters to take care of me on this side of heaven until we are united. 

I imagine her looking down at me at the National TS Conferences having tons of fun with my sisters, saw me graduate from college, celebrated the day we became Aunt’s to our nephew, Zachary. I imagine her being partly why I have Classic TS but am overall very healthy. I have no doubt she played a role in me surviving the 2% chance I had of being born alive. 

Corrie and I really two sisters with one story. I can’t wait to continue to see our stories connect and write themselves. I love my sister, Corrie and grateful for her fingerprints all over my life from the other side. I am grateful for all the signs she gives me to know she is there and being the protective big sister! This is very paraphrased story. I could go on about our story! 

Winter the Dolphin

The story of Winter the Dolphin is one of my favorite stories! It is a true to story of a dolphin who was in the ropes of crab trap off the coastal waters on Florida on December 10, 2005. Sadly the rope cut off the blood flow to Winter's tail was cut off leaving it having to be  amputated. She couldn't go on without a tail because it would have caused too much damage to her spine because of more pressure being put on it. It made her swim unnaturally from side to side and not up and down. 

If you have seen the movie, Dolphin Tail, you can see how frustrated she gets and how they keep having to make different prosthetic tails to make her comfortable. She would get angry if one didn't feel right and fight against it  and literally taking it off. Finally, after much research they made her a prosthetic tail made of silicone and plastic. Today, she lives at Clearwater Marine Aquarium where she continues to inspire people with physical disabilities all over the world! I have actually been there and meant her. It was an amazing experience. 

Like Winter, we get trapped. We get trapped in circumstances beyond our control, medical conditions, sin, depression, anxiety, mental health issues. If Winter didn't her new tail, she would not have made it! If she didn't past the trauma of what happened and the emotions (which you learn in the movie are very evident in her) then she wouldn't have been motivated to where the tail that worked for her. We have a choice just like Winter- do we want to be mad and angry and be complacent when it comes to our circumstances. Do we want to keep tangled in the sins that so easily trap us? What if we know there was a better a way- like a new tail for Winter but refuse to "try it on for size." There is a better way! There is a new "tail" to give us a different direction. Winter couldn't do it on her own. She was completely dependent on the maker of her tail and we are completely dependent on the only One who can fix us and make us whole again. The choice is ours. 

Hebrews 12 1-3 

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. 3 Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.