I officially shared this with all my facebook friends last month, so now I want to share this with you.
I have not talked about this much other than a brief mention here and there. When something awful consumes your life, you have to have places that are sacred from it. This blog has been that for me and will continue to be that. When life is hard, sometimes we just want need to escape from it. For some of us, that is survival. We still get to make life as normal as possible.
But it is time to share part of my story. In some ways, it is why this blog was created. It was a place that could just be beautiful, not like the reality that I faced every day. It could be a sacred space, something that I could not do with my life…make it absent of all the bad things. At least the bad thing I needed to have time and space to be able to process it.
There’s much more to the story, but here is the just of it all. It is what I recently shared with my facebook friends when I realized so many did not know what was going on.
One of the main reasons I am sharing this here with you is to help anyone who reads this to realize that beautiful lives don’t just happen. We create them. Even in the midst of some really hard and messy things. Even in the midst of the mess, we can do some beautiful things. Yes, the bad is still a reality. But it is not my whole life, nor do I ever plan on it defining my whole life. And neither should you.
My life is far from perfect. Most people would not want to trade places with me. I do not think and live the way I do because my life is easy or perfect, or always beautiful. We make it beautiful by how we live it. We create the beauty. My life definitely should have come with a warning label. Beauty not included. You must create your own.
So this is what we are dealing with and where we are with it.
David has Huntington’s Disease. It’s a fatal neurodegenerative disease that causes the progressive deterioration of nerve cells in the brain. It’s like a cross between Parkinson’s, Alzheimer’s, and a little (okay a lot) schizophrenia thrown in just to keep it fun.
We have been living this reality for a very long time. I haven’t talked much about it just to try and live as normal of a life as possible, but he’s been progressing more quickly lately, and it consumes a lot more of daily life now. I’ve been doing this for years. Soon he will require more care than I can give him at home, which is a seriously hard step to take, but I know we are on the doorstep of it. This disease is like that. It can take some fairly big leaps very suddenly.
I don’t know where this will all be in a year or five years. A lot has changed in the past year for him. So while we don’t know what today or tomorrow will bring, I do know that God is already there. This might be a strange concept to some…how God is there when this horrible thing is happening. We have seen Him show up in many ways on this journey. And while it is our human nature to worry about tomorrow, it is a waste of our imagination. He doesn’t give me what I need for the next step today. He will give that to me when I get there.
No matter what your story is, how hard things might be, always remember…
Beautiful lives don’t just happen. We create them. Even in the midst of some pretty hard and messy stuff.
So tonight, we are going to focus on family, good food, and enjoy our people.
Life. Beauty not included. You must create your own. -Topaz
Shine on, beautiful people. I intend to.
Love,
Topaz
Praying for David, you and your family.
Thank you, Laura. We’ll take all the prayers we can get.
I want you to know I’m praying for you, David and your family. As you know you’re not alone. God is always with you. He will never leave you. As you move forward on this journey, call out to God, thank him, love him, draw him closer and closer to you with every breath you take. He’s listening. Seek his face continually.
Hi Chris, thank you. I would never have survived this far without Him. It is a daily walk. Sometimes moment by moment.
so sorry you are living in a hard and difficult place. You will be rewarded for the things you are doing someday. God sees you and He thinks of you all the time. He sets or stands right beside you. You are in constant contact with him. ….because He said in one of His promises I will never leave you nor forsake you and in your hardest times He is closer and the sweetest….seek the Holy scriptures. Phil 4:6-7 and Psalms 46:1 and Phil 4:13 have brought me much comfort since I’ve learned this 74 year old women has stage one cancer….we are human with a lot of fragile things going on in our lives….but God is with us even when we can’t understand or see him in things or in a smile from someone or a prayer from prayer warriors or a thinking of you card. He is with us in the sunsets and the sunrises telling us He loves us…..you are in my thoughts and prayers
That was BEAUTIFUL, Anita. Thank you so much. I’m praying for you, too. <3
Thanks you for this post. It’s a beautiful reminder to live and love in the present, rather than acting out of fear for the future.
I have to admit I learned that one the hard way, Rebecca. lol It takes its toll on your health, and when you get there, you realized all the worrying beforehand did nothing, and I found that God was already there when I got there. Thank you.
Sending prayers for David and for your strength. ❤️
Thank you so much, Natasha. I appreciate it. <3
I will be praying. And just so you know, you are an inspiration to me.
Thank you so much, Mary. I appreciate that. <3 That is so sweet of you to say and just made my day. I will be back blogging regularly soon, and I also am starting a facebook group. I'm looking forward to getting to know some of you wonderful women and make some new friendships.
Praying for strength wisdom and peace for you both
Thank you, Connie. I appreciate that.
You are such a beautiful soul- I’m so glad you shared this with your readers here. Praying always for you and David. I can’t even fathom how difficult this journey has been for you both and how challenging it will become. I thank God for walking through it with you and strengthening you through every faithful step. I am so sorry you have to bear such a tragic burden. You are setting such an incredible example for us all in how to endure long-suffering faithfully. In the depths of darkness, you are the epitome of “The Art of a Beautiful Life”.
And there’s still so much more to the story. It has indeed been long and hard. But in so many ways, it was part of the reason behind this blog. It was all I was doing and thinking to get through this and find ways to still create a beautiful life. We just naturally blog about what we know and do. I really wanted to let people know that we can still create beauty in the midst of the mess. God has been there in so many beautiful ways. I don’t know how people go through things like this without Him.
You have been such a beautiful and faithful friend through all of this. I SO appreciate you. <3