Fear Not

It’s ironic because in 20 days we will “celebrate” D day. Celebrate because Eli and Ella are here living their best life possible. September starts Leukodystrophy awareness month, and it’s the month that we first heard the dreadful words Metachromatic Leukodystrophy. This moment I have to say, is the best way to start the month. Seeing our son on this stage smiling for his senior pictures.

Almost 11 years ago we walked into a hospital for an MRI, never imagining that when we walked out, our life would NEVER be the same.

That night of diagnosis, after trying to remember everything that the doctor told us, we went to bed in silence, looking at each other wondering what to say. We never thought we would ever smile or laugh again, let alone sleep through the night.

The most important thing we (thought) we knew, was that we were faced with the fact that there were no real treatments for MLD and definitely no cure. She warned us that without a viable treatment, he would be lucky to see 13.

At 7 years of age we thought we might have 6 years left with Eli, if we were lucky.

A few days later, a chance encounter searching MLD, had me finding a video of Amazing Sam on you tube, who was almost Eli’s age and just diagnosed with MLD. From this video, I found Sam’s mom Jolene, who introduced me on Facebook to a mom who had two kids with MLD, one who recently finished treatment. Amy and her encouragement helped to change my belief about the doctors words that their was nothing we could do to save Eli (and soon enough Ella)

So, today as the tears flowed watching him sit for his senior photos, I couldn’t help but think of the people that played a part in this moment. So many to think of, and be grateful for.

So often, I am reminded of Eli singing while we were in the hospital about never giving up. This song will never leave me, and it has become the song about our journey… their journey. While I sat there today, I heard him in my mind, singing about never giving up, and closed my eyes at the miracle that I was witnessing.

11 years later and none of us ever gave up! We thank God every day for this gift of life!

~ by Rebecca on August 31, 2023.

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, anxiety, challenge, changes, clinical trial, day by day, eli and ella, family, gene therapy, God, gratitude, hope, journey, joy, learning, lessons, life, Love, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, parenting special needs, parents magazine, rare disease, sadness, senior year, special needs, strength, thankful, today show, warriors