Fear Not

The school year is quickly coming to an end and soon we will get to witness the greatest gift, as Eli walks across that stage to get his diploma.

It’s a dream we only imagined after hearing “terminal illness” Eleven and a half years ago.

Watching how far Eli has come in those years had been nothing short of a miracle.

At the time of diagnosis, and not knowing what his future would hold, we didn’t like to think too far ahead. Now that we are IN that future that we never knew we would see, we are still faced with challenges, they just look different.

Life is good, we make the most of it, but as we get ready for Eli’s surgery Tuesday, MLD comes back to the forefront of my mind.

This amazing young man of ours doesn’t want another surgery, he doesn’t quite understand why he has to get it, and now that he is an adult, he just has to trust us. He does a good job believing us, and knowing that we would never do anything unless it was necessary. Unfortunately, this is one of those necessary things. People who have MLD and have sludge or polyps in their gallbladder have a very high percentage that their gall bladder issues can turn cancerous. As my friend stated, it’s like a ticking time bomb and there is no need to wait any longer. Ei has had polyps for quite some time that they have been monitoring, and as much as I hate the idea of another surgery, it’s time.

I know it’s a “small” surgery, but every time your child goes under, is another moment that you are reminded of what brought you to this present moment.

I believe the surgery will go smoothly, and this hurdle will become just another bump in the road. I also know that this isn’t the end of surgeries for him, and possibly Ella. His back is getting worse, the pain is more now than ever, and his hips aren’t in the best position anymore.

My God, how can we contemplate all the things that may lie ahead? We can’t! We would lose hope, question our faith, and it could make us spiral if we continue to dwell on the unknown future.

We do have a choice on how we will face what lies ahead.

Once again, we will choose to follow the lead of Eli. He is trusting, so we will trust. He is living in the moment, so we will choose to focus on today only. His faith is unwavering, so we have no choice, but to follow his lead, and Live Like Eli!

~ by Rebecca on March 24, 2024.

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living
Tags: acceptance, changes, day by day, disability, eli and ella, faith, family, Fear, gene therapy, God, gratitude, hope, journey, joy, learning, life, live, live like Eli, Love, memories, metachromatic leukodystrophy, MLD, never give up, present moment, rare disease, sorrow, special needs, strength, surgery, warriors