Updated: Jul 14, 2022
I am realizing hope is a central theme for our family. With this post included, I have used the word hope in the title of 4 of our 13 blog posts.
I went back and read those posts to see how my thoughts on hope have changed over the past few years. Generally, I think the same central idea exists, that there is joy to be had in this life, even if it looks different than you thought it would.
The first days after diagnosis feel pretty hopeless, so you cling to the moments that bring you out of the darkness. For us, hope was connecting with other SMARD families. We got to talk with people who have traveled this road. Not every story was a happy one, but every family brought us peace and hope that there was still life to be lived on the other side of the mountain in front of us.
The danger in holding onto hope that will get you to the other side of the mountain is that there is likely another mountain waiting for you on the other side. And that mountain won’t be quite like the last one.
According to my trusty Google search, “hope is an optimistic state of mind that is based on an expectation of positive outcomes with respect to events and circumstances in one's life”. If you aren’t careful, you will lose hope when you see the new mountain in front of you because you were expecting something different. You were holding out hope that there was something better on the other side, but please don’t forget about the mountain you just moved. That was a positive outcome. You did it. You conquered it. Now you can set your sights on the next mountain with hopeful expectation and an optimistic state of mind.
Hope keeps you moving forward when times are hard. Hope cannot, however, be placed in a box with specific requirements and deadlines. It is important to set goals and to pray fervently for the desires of your heart, but if you limit today’s joy while you hold onto hope for tomorrow, you are missing out.
For those who don’t know, a gene therapy clinical trial was approved for SMARD by the FDA at the end of 2021. Now 8 months after approval, we still sit and wait to hear if Brooks will be included in the trial. It has been an exciting time to know we helped fundraise for vital research that could change the future for existing and especially future SMARD patients. On the other hand, we have felt a little helpless waiting to hear about something we cannot control.
The past few weeks especially, I have been reminded that there is so much in this life out of my control. I do however get to control my mindset. I get to choose faith and to choose hope.
As I wrote in “Hope over Fear” on 4/6/20, “sometimes we wait for God’s miracles, like gene therapy, and we fail to recognize the miracle we are living.”
Brooks is a miracle today. We have to recognize that living with hope is believing God’s Word, clinging to His truth, and knowing there will be peace and joy along the way, even when the outcomes are not what we expected or not on our timeline. We will continue to press on with hopeful confidence, but without expectation for the things we cannot control.
Cute photos by @Joa Brance Photography: https://joabrance.zenfolio.com/