So here we are. The third day Of another adventure or crazy crossroads or whatever you call it. Back to driving around the streets and roads of a strange town. Navigating through strange grocery stores and watching out for old folks crossing streets. Snapping pictures of houses for sale on my iPad out the car window. logging info and numbers and options.
Hanging out at hotspots for WIFI. Scouring craigslist and papers and online sights for a job that catches our eye, or that we would actually qualify for. Wondering if we are totally loco and if we are using the brains God gave us properly.
We can’t forget that we felt like God really, really wanted us to check Florida out. That we felt it was time to move out of Lancaster. That He has all the power and holds all the pieces to the puzzle in His hand. That He will delegate them out in His time and His way.
Montana still holds a big piece of our hearts and minds. It’s where our hearts can return to and immediately feel a connection, and that Home feeling. Whether it’s wise to move back is still a question in our minds. Whether God wants us to is also a question.
The fear of making a wrong choice can easily cloud my enthusiasm. Why am I so afraid we will get it wrong? After all, we serve a loving Father who has promised to guide us with His eye! Why do I fear the unknown when He has never let us down in the past?
No matter where we live, what we do, or who we come in contact with, our God is never going to let go. I need to firmly remind myself of that!
So I am writing to remind myself of my commitment to my Father
Believe God will work out our future.
That He knows our yesterday.
That He knows that we are only humans, doing our best to follow our all-knowing Father.
That we can only do the best that we can do.
That when we do make a decision, we can rest in knowing He will work it out for our good.
That He will bring us to a place of knowing and peace.
Last night, we watched the sun set at the beach. It was so glorious and it made my heart ache in all kinds of places. I wondered where we would be if our life had been written with a different story. If Kierra’s ending would have been different. If her beginning in Heaven had not come yet.
On Friday, we were at a wonderful meeting at the Clinic in Stasburg. It was a special day for families of children with Yoder Dystonia. I came away, feeling overwhelmed and encouraged and totally amazed. The science of the cells dividing. the amazing surgical injections being done with the tiny babies inside pregnant rats. The beautiful cerebellum of the brain that has a distinct leafy appearance. The fact that is even more beautiful in these kids, because it is extra tiny and totally unique. The questions that surround from the time of conception until the time of their Heavenly beginning.
They have come so far. But still have so many really important questions that need answering. The term Yoder Dystonia for these children has been changed to NCS. Which stands for Nepher Cerebellum Syndrome. There. I hope I got it right.:)
There were six Dr that shared about their findings and treatment options. It was so very educational! From the Clinic Doctors to the older gentleman with the wonderful London accent!
So far, there is still no cure for NCS. Their quest for understanding exactly what is happening should give them more specific answers as to how to treat it best. It seems like when one of the specific cells divide there is extra trauma then usual. This may cause a host of complications. WD73 is the gene that is affected in this process. Even having the cell divide a fraction of a centimeter different then ‘usual’ can cause amazing differences. And this is only 1 cell in the enormous world of your DNA. Think of paying off a loan with 3% interest over 30 years versus 3.05% interest over 30 years. Now imagine the difference it makes in a human if the cell divides even a teeny tiny fraction of a difference then usual. Over the course of time, it will make a BIG difference!
So questions that come up are things like, does the mother need an extra protein or amino acid during pregnancy? Is the baby fine until late in the pregnancy when it lacks something that would effect the way the brain develops? Are they born with this or do they develop symptoms after birth?
Research is still in progress. NCS is taking longer then nearly any other disorder they have experienced to unwrap. I see God’s awesome creation all over this amazing search to understand NCS. We are WONDERFULLY created!
And all these sweet children….well, they are the handiwork of God too! Because they cannot breathe without His touch on their lives! All the parents that were there…whether they had lost their children or not, were living examples of love. Love that reaches beyond the normal, and embraces the gift of life!
So once again, in a totally different way, I choose to reach beyond the normal of an expected life and embrace whatever God has planned for us. In Florida. Or somewhere else….You show us, God…we’ll do our best to catch on and follow!
Will you join me? Whatever you are facing…embrace it, with the arms of our Father bracing yours!