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.

The Pilot

I tend to come up with my deepest thoughts during the night. Lately, I have been struggling spiritually. I won't go into details. Suffice it to say, one of the biggest issues I have is giving up control. I feel like I need to control things and if I do not then things will fall apart- that I can't trust God and only myself. 

Last week, I woke up in the middle of the night and had an epiphany.  One of my most favorite things to do is fly! I realized that when I get on the plane, I trust the Pilot to know what he doing. There are so many similarities between a Pilot and God.

1) We rarely see the Pilot but we know he (or she) is guiding the plane and we trust they have the licenses  and knowledge to get us where we are going safely. 

2) We seldom see the Pilot but we know they are.

3) We can't see the Pilot but we hear his voice and can feel his presence when he speaks over the microphone. 

If you are like me, remember this! Once I had this big epiphany, I suddenly made sense why we can trust God! If we can trust the Pilot on our adventure, certainly we can trust the Pilot of our lives. 

Pleasing

How many of  you are eager to please? Sure, there are some good things about being a perfectionist- it motivates you to get to work on time, wanting to succeed and meet expectation. How do you know when it become an issue. 

Colossians 3: 23-24 

23 Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, 24 since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving.

This is a verse that my therapist and I have gone over quite frequently. I get so worked up on how people see me. I worry if I meeting their expectations. I have been thinking about this verse a lot lately and how I have completely forgotten Who I work for. It isn't my boss, it isn't even my customers I'm suppose for! It isn't your boss you work for, your clients or whatever is applicable. I know a lot of my friends have this same anxiety and I am not alone in this type of anxiety, 

When we think of Colossians 3: 23-24, it forces our thinking to take a complete 360! It flips what we think to be reality and flips it like a pancake! Think of what this verse REALLY means! It means to me, we work for our Heavenly Father. Our Father who loved us enough to die for us before He even knew us! Isn't it nice to know that He is our boss? The One we work for only wants the best for us and as He says in Jeremiah 29:11 has good plans is our Boss according to this verse. Let that sink in for moment, 

What does working for God and not for man look like? It means not striving for perfection in order to meet the standards of your earthly boss. It is being a light in you're work place. it means giving each day to God before you go about what you do. It means praying for the people you work with and the people you serve. It means doing the right thing even if others don't. 

Another thing I have been thinking about that relates to this is projecting. I tend to project that something bad is going to happen- not something good. Instead of thinking what I am doing right or could be doing right, I think what I could be doing wrong- or just assume I doing a bad job and doing things wrong. How anxiety applicable is that?! Seriously? I am working really hard on changing this paradigm- I have good days and bad days. I encourage you to ask yourself what you project as well! 

I hope this helps relieve some anxiety you may be having or can help someone you know. You are permitted to share these blog post. Don't forget Who is your Boss! Love you all! 

The NEW Diagnosis

In 2010, I went to Canada with my family to camp and see the sights. We were in a very remote part of Canada where there was little help for emergences. After a beautiful hike, I feel on a slippery rock on the water and fell down right on my left wrist! I have a high tolerance for pain but it was hard to bare. There was a slight amazing miracle that happened though right after my fall. A nice guy came to where my family lead me so I could lay down and they put a cold compress on my head. He asked if we needed help and he would do what he could. More remarkable then that, he said he was Pastor and asked us if it was okay if he prayed for me. After we said yes, he put his hand on my head and prayed for me.

Because the area was so remote, we couldn't can any help until we entered the US 3 days later! We didn't think much of it. We didn't think it was broken. After we got back, my mother took me to ER immediately well the others stayed home and unloaded the car. It turns out I had 2 compress fractures! I had surgery on it a week later.

Over the years, I have dealt with issues on and off and until now it was diagnosed at tendonitis. In November, literally after I clocked out of my job, my wrist started hurting again. The Dr. who did my surgery and seen me after, it didn't take my new insurance. It was actually a blessing in disguise although he was wonderful. I now I have a new orthopedist and after seeing my x-rays just taking at that initial appointment and after he compared it to x-rays a few years ago, he immediately diagnosed me after seeing this new x-ray was worse then before. He is very proactive which I love! After putting me on prednisone for a week with no success, he put me in OT. I am making progress there but the pain is still high sometimes.

It is hard being in pain and knowing that even OT will not take it completely. I have wondered recently "why?" and I came up with some answers. I try to be in control of everything. I worry about so many things I simply can't control- job performance, when I can be on my own, etc. With the pain- I don't know when will it come. Some days it will be pretty calm and the next day it is horrible! I have thought maybe the reason this is happening is to remind myself to trust God even when I don't understand! I can't control the pain myself. I am not in control of what people think of me at work and how I am doing. I have learned and am continuing to learn that I can't control everything. It is hard. I am learning that in order to have peace, you have to give up control. It seems really weird! You would think being being in control brings you peace. It doesn't because it only burdens you! You are dealing with more fires then you need to. We were never meant to be in control. Our society tells us we are in control and that we have power over our destiny. This is a lie straight from the devil himself that sadly too many people fall into. 

Whatever you are trying to control, remember you won't have peace until you let it go. It will only tie down. I am a part of a group of ladies with Turner Syndrome who meet every Thursday. It is a huge blessing. One of the things we discussed this past Thursday is that God is not surprised by anything at happens in our lives and our world. He wasn't surprised when the pandemic disturbed our daily lives. He wasn't surprised when I fell in Canada. There is some peace that comes knowing nothing takes God surprise- even though we are!! Wouldn't it make sense to instead of trying to control things, let God who already knows everything have control? 

Right after the fall........ 

Mindfulness Part 1- Noting

Last time at the end of my blog, I brought up the topic of mindfulness. Mindfulness is key to handling our emotions and spiritually embrace our identity in Christ. This won't see clear right away but I promise the more we dive into this topic, you will see the connection! I wasn't able to start begin making process emotionally and spiritually until I made the connection with mindfulness.

I use the Calm app which is a meditation app I HIGHLY recommend you try out- especially if you have severe clinical depression and General Anxiety Disorder like myself. I use to be turned off to the concept of meditation but when I started using the Calm app, I learned mediation is not what most people think it is! ALL of the topics I write about here, I have learned from the Calm app. The Calm app has help change my life! 

Let's get started! The first area of mindfulness I want to teach you is called NOTING. 

Mental noting is "The practice of using a simple “note” to calmly name – as a whisper in the mind – what we are experiencing. Though it can take a while to learn, and can be awkward at first, with practice, mental noting can become second nature."

"Noting in meditation has many functions. The primary one is keeping the meditator present – sometimes it is called an ‘anchor’ to the present. The mind is less likely to wander off if one keeps up a steady stream of relaxed noting. If the mind does wander, the noting practice can make it easier to reestablish mindfulness."

This is how it works. If you feel scared, you say "scared, scared" (the 2 time rule is important)! When you say those words, it grounds you. The next step of noting is to not judge what you are feeling or classify them as good or bad. The 3 step (and this is my favorite) is to picture yourself putting it (the feeling) on a cloud and letting it go! The thing with thoughts is we so easily hold on them like a best friend. We forget the impermanence of what we are feeling or of a situation (we're go more into this later)! 

This week, practice the mindful practice of noting. Again, remember it is VERY important for you to say the feeling 2 times for this practice to work. Remember not to put a label on what it is. Just accept it as it and let it go! You may have to do this several times and that is okay! 

I have learned so much on the topic of mindfulness and I can't wait to share it with you. I hope as we explore this important topic, you will see progress in your own mental health! We also will be continue to use the book Defined by Stephen and Alex Kendrick as we explore this topic to help us make the spiritual connection!

https://www.insightmeditationcenter.org/books-articles/mental-noting/