The Road to Gideon James

I have almost always had a dachshund. I was born into a family that had one. Her name was Nicki. We had to put her down when I was 7 so I do not remember her too well. I remember crying the night before we put down, so I know I had some form of attachment to her. When I was 10, God led us to Caleb! He was an amazing little boy!!!! We had him until I was 27 in 2016, when we sadly had to put him down. He was 17 and we had him for that length of time. My family let me make the decision of when we put him down which meant a lot to me, and it helped me with the grieving process.

For 9 years, I was without a puppy. I now know after getting Gideon, I waited too long. There were issues with timing and just regular logistics. Now it was possible to get a puppy and that is what I did!!! I knew this was going to MY puppy and dog and because of that, I have known for years that my baby would be named Gideon- Gideon James. Gideon is my favorite biblical prophet, and his story means so much to me and I see myself in Gideon. I chose the name James for his middle name because James in one of my favorite chapters in the Bible. Caleb had a biblical name, and it was also important to me to keep up with that theme. 

Gideon is amazing! He is helping me in so many ways already! I think the biggest thing so far is he has really taught me about God's love for us! I love him so much! He is a puppy, so he does things that I do not like but I love him, and those moments do not make me love him any less! I may get frustrated with him, but I don't give on him! God is that way with us!!! We may do things that He does not like, but He loves us nonetheless! Like I would never think of giving up on Gideon, God never thinks about giving up on us! 

I am so thankful for my therapist! She went above and beyond to make Gideon identified as an emotional service dog (ESA) and it was finally approved! This allows him to let me without monthly fees and a deposit! He is also allowed to go to public places with me. It is such a blessing! I also learned that God does provide through that situation. 

Gideon is 2 months old! He was born on the same day as my nephew! This was how we knew it was right! I will never wait 9 years again! He has really increased my quality of life! 

2024 In Review

How was 2024 for you? I hope it was good year for you!  2024 was a remarkable and life-altering year for me.

In February, I was hired for what I thought was a great job and long story short, they let me go. It was devastating to say the least! God made a way though. I had applied for unemployment because you never know if you don't try. The State found I was "unjustifiably terminated" and received compensation. The compensation was nice but what really helped me was being told by the State that I did nothing wrong! Unfortunately, employment can be very hard for TS butterflies because of discrimination and our Nonverbal Learning Disability. I am working on those issues and am also learning to drive through a vendor with a State Agency. We knew I would not be able to learn to drive through a traditional driving school and if I learned how to drive it could only be through an agency that teaches people like me how to drive and God provided there!  

I was home for a month getting my mental health and spiritual health on track. In early April, I received a text from someone who worked with me at Wendy's saying they really wanted me back and if I wanted to go back, they would take me back immediately and they did! God provided there! If I were at the old place, I would not have a day during the week for things like learning to drive, doctor appointments, and more. I work Tuesdays-Saturdays which temporally is exactly what I need. I also learned what I want to do which is to be Pharmacy Tech! 

In July, I attended the National Turner Syndrome Conference in Orlando, Fl and I went to Disney World with my TS sisters! I learned a lot about mental health in TS and discovered I had to get my act together or it could become bad, and I did. I now have a Social Worker on my team until I can get into a psychiatrist and my meds were adjusted with the help of a psychiatrist. The medicine and dosages I am on is working so well! My Social Worker checks on me once a month. 

In August, I had a huge medical emergency because of Turner Syndrome. I am involved with many Facebook groups for TS and have read post from my TS sisters, so I knew it was possible and I knew I needed to get the hospital right away. I do not know what would have happened if I did not it was a possible issue for TS and was able to communicate that to my family and the medical staff. It literally saved my life! I was admitted and it was storybook treatment from what I read when my sisters went through it! I was admitted and had 5 blood transfusions as well as 2 iron infusions. At one point, the nurse told my mom outside they could have lost me and at discharge I was told by a nurse "You practically all have new blood!" I will NEVER forget those 6 words! I had so many close calls and this was probably the closest call I had! I am grateful to be still here! 

Spiritually, 2024 will be the year I experienced the most growth and my mental health is reaping the benefits. I can see where God has provided for me in big ways- like Wendy's taking me when they did not have to. I will never forget that Wendy's offered me my job back and that they wanted me back! I didn't have to run begging. I saw God in the people who visited me from my former church and my current one and made me so loved. I saw God in so many ways! It was not always an easy road and there were some very hard things I went through. I am still dealing with severe pain in my hand. I am still working through what the hospitalization means for my future and that is hard, and I am still processing! We will never know what happened and that is something I need to deal with as well! 

I’ll suffice it to say, I can see God working through it. It isn’t easy but then God never promised us easy. He just promised He will get us through it! So, no matter what baggage you brought with you into 2025, or what you will go through remember God is for you and not against you! Look for Him in the little ways He proves Himself to you! You are not alone! 

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!!!!