Fear Not

Today is it normally a day filled with many emotions, both good and bad. When you have a diagnosis such as ours you tend to never forget the particulars of that day. Everything from what you were wearing, to every word out of the doctors mouth.

I typically try to be as positive as can on this day, trying to focus on good things and how many positive things have come into our life since diagnosis.

It’s hard though, and it stings when we think back to the day we heard MLD for the first time!

Today though, I now have another reason to remember this day. Today on Sept 20, 2024 I got an email accepting Eli and I into a Joe Dispenza retreat in Orlando Florida in Oct!

I have been following Joe for many years but not putting in the work as much as I should have been. I have talked to the kids about him and his meditations, but we have never done any meditations together. That will change now as we want to prepare as best as possible for the retreat.

There is not much as parents that we can do for Eli and Ella when it comes to MLD, so I have been looking at his retreats for some time believing some day we would make it there!

Thanks to my friend Kristin, who reached out on FB a year ago, I started working with her on my own meditations. Fast forward to about two months ago and my dear friend Christie told me about an organization that gives grants for his retreats. Give to Give.

Of course we applied as soon as it opened for the Orlando retreat and we waited. Every day I checked my email hoping and praying we would get picked. After three weeks went by, I looked up to God and just said “if you want us there, we will be there, but I have to let go and surrender” it was one of the first times in my life that I truly surrendered. I didn’t realize how good it actually feels to let go!!!

Another two weeks went by and last Friday, I opened my phone and saw the email that Eli was accepted!!! I will go as his caregiver!!

The tears were streaming down my face and I immediately texted Christie and Kristin to let them know! Two seconds later my FT rang and the the three of us were celebrating together! The joy that they expressed for Eli and I was palpable!

My hope is that this can help all of us in some way form or fashion

I am beyond grateful,

Special thanks to Christie and Kristin and of course Give to Give for choosing Eli 💙

~ by Rebecca on September 27, 2024.

Posted in Along the way, Joe Dispenza retreat, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, anxiety, challenge, clinical trial, day by day, eli and ella, family, gene therapy, God, grateful, gratitude, healing, hope, joe dispenza, journey, joy, learning, life, Love, meditation, MLD, never give up, normalcy, Orlando, rare disease, retreat, sorrow, special needs, strength, warriors