It's Time to Rest

 

Hey guys 👋 I wrote here about 7 years and completion. I feel like God is also instructing me now to rest. We just had a winter storm with the most snow I've ever seen here in Texas and I felt like it was another reminder that it is time to finally take a step back from the blog and social media. I know not only does my body need to continue to focus on resting and healing, but my girls and husband have been the ones to miss out when I've been so sick. My oldest starts school next year so I figured that's perfect for planning to step into this new role, but give me quality time with my family until then. 

 

 

 

 

February 28th is not only Rare Disease Day, but will be the 1st Annual Rare MALS, MTS, NCS, SMAS, and PCS Awareness Day. May is also EDS & HSD Awareness Month. You can read my previous Rare Disease Day post here and my EDS Awareness Month post here. There's also an Awareness section for all my posts that explain the illnesses I have and share any knowledge for friends and family who've never heard about them, or others who are like me that eat up more detailed explanations or research on diagnosis and treatment. 

 

 

Why I feel like I can now agree to a break is that I have finished writing about my surgery and recovery so far organized in the Germany section. I created a specific post of what I've learned on my journey with multiple vascular compressions as well. If you are experiencing opposition and trying to find hope in the pain, please look at "My Journey" and start with the first few posts. They still give me inspiration and encouragement when I look back at them now because those feelings were so very real and the suffering so evident. The Faith section also has some different posts listed if you are struggling or love finding new songs to help get you through.

 

Family is a little more self explanatory, but I hope to add a lot more to that section when I return :)

He Believes in Me

 

 

This has been one of my favorite singers since I found her songs last year. I would never expect for her to come out with a song and video recently that not only shares about POTS (one of the illnesses I have), but shows what I have in my husband. There's quite a story to how God led me to him, but I would never truly understand at the time how important it was to find the right partner who could help me survive some of the things life has thrown at us. 

 

I have wanted to write a post to dedicate to him since I created this blog, but even now I still keep typing and deleting trying to find the right words. How could I write or describe what he does and continues to do these past 10 years together? This is why I ask you to watch the video above. From never making me feel bad or guilty on the days I can't get out of bed, having to watch me in pain or suffer feeling helpless, hugging me as I cry in his arms for the billionth time, giving me endless foot and back rubs trying to distract me, telling me we would do whatever it takes even if it's getting me to Germany, having to hug and kiss me goodbye and trust it wouldn't be the last time, telling me to stop cleaning when he knows I'm overdoing it and tells me to go get in bed, saying no to get-togethers because he knows I don't feel well enough, being protective about making sure no matter the consequences that I stay safe and don't get COVID, all the things he does without ever requiring praise or appreciation and will actually try to sway me to not post this even though he's my blog editor.

 

Something he and I learned early on in our relationship was the five love languages. Mine had actually been gifts, but it's completely changed the last few years. I realize he is the gift and our time together will always be the only thing I want from him. I'm so grateful we've had more time ️

Birthday Thoughts

When you have chronic pain or rare illness, you can't help be confronted with your mortality. Some that experience this life it's very easy to think about when we finally go to be with Jesus and no longer suffering. I know this might be the opposite of my usual posts, but I feel like I had a lot of times the past year to think about when I'm gone and the opportunity I still have being on this earth now at 34. 

I knew that God saved my life when I had my 2nd child. I remember telling my sister there was a reason that doctor said we couldn't wait and needed an emergency c section, and if I hadn't been on the operating table when I hemorrhaged, well, not quite sure if my daughter and I would have survived. There is a testimony within so many details of that story from God giving us peace because that on call doctor was the one who actually delivered my husband to my food server going through the exact same thing with a daughter the same age at home. Although I thought my purpose and second chance at life were different than I originally thought, I would see that He'd give me extra time to write my story and give hope to others.

We don't know what we will experience in this life. It might be chronic illness. It might be loss of a loved one. I remember bringing up to my husband how guilty I felt when I learned about my EDS and how there were signs both our girls had it. He said the most perfect thing. If our girls never experience hardships how will they ever learn to fight and overcome? That rocked my world. It reminds me that I didn't know how I could ever see my suffering and pain as positive or say I was thankful for it because of what it's done to my family, but you know what? As my faith has grown and God has showed incredible moments, beautiful moments in the most unexpected and ugly, hard, trying times, I now completely understand and can say I wouldn't change it. I hope that one day if I'm no longer on this earth, that my husband and girls will see the glory in God's plan even when it's unfathomable how they can deal or go on in grief.

I think back to my friend who had lost her sister of cancer way too young, way too healthy, way too beautiful, way too kind, way too unfair. How can you see the plan in that or any goodness from it? I sat and cried with my friend. All that came to my mind was how we that lose people will never take for granted a moment with those we love. We make an effort to see them because we know life isn't guaranteed and we cherish the time we do have together. People who know that feeling that you can't even put into words are given that gift of perspective. Does it take away the pain or sadness? Of course not. But it's why our faith comes into play during these times. My reasoning for this post is to share my faith and that life is so much better when you give it to God. He makes you see light in the darkest of times. I don't know what's in store for the rest of my life, but God has done so much in me I can't not share about Him.

Many times I've had to pray for reassurance because as humans doubt and worry seem at every corner. It's ok to ask for that peace or help to go on. When I realized that, it was life changing. I had a lot of weak moments and I still will, but when I pray and say God I need some encouragement, He has ALWAYS answered my prayer. That is why I will continue writing about the times He shows me how He's working and how He's been there. Because when we are in it, oh, how it can be hard to see the whys or any possible goodness of the worst possible things. But He can heal and show us comfort during those times if we let Him.

I remember my grandmother talking about when she would die and even drive around looking at her burial plot with us. At the time I thought it was so morbid and wondered how she could do that. Shortly after my husband and I were engaged we went to a marriage class and they talked about death and how it can actually be a gift to plan and discuss before it happens. Instead of having to stress about all the funeral details, loved ones can remember and celebrate the life they lived. I hope in sharing this that it can change your idea about death and preparing for it. Becoming at peace that we are not in control and if it happens, I want my loved ones to know I'm ok.