Fear Not

These were the words that Eli asked me last night as he was getting ready to get in the shower. It doesn’t happen often, but sometime I see a glimpse of a typical developing teenager, asking questions that many of us as adults ask and just as no one can know for sure what the answer to that question would be, I think I have a better chance at knowing what the answer would be for Eli.

It’s a pain like no other when he goes deep, asking questions that we surely can’t answer. Conversations that I dread to get into, yet when he’s ready to ask, I am there to listen and do my best to help ease his soul.

Hut and I had a conversation a few month back about The Pool of Siloam opening for the first time in Jerusalem in over 2000 years! It is a very holy site where Jesus healed a blind man. I think 10 years ago I would have jumped on this opportunity to take the kids there, believing that anything is possible if it is Gods will. Now, not so much, and not because I don’t believe in God, but because when he told me, I felt a burst of anger at thinking we don’t need to go there, if God wanted to heal Eli and Ella, he could do it anywhere. As of now, it’s just not in the cards.

So, when The topic came up last night and I got down on my knees to cry with him, all I could wonder, was if miracles that big still happen in this day and age. I don’t know the answer, but I do know that we have been a part of some pretty incredible miracles the last ten years. Maybe not the size that Eli is asking for, but nonetheless miracles.

It does make me wonder though, Eli has the most beautiful childlike spirit, believing without seeing and has more faith than a mustard seed, yet the mountain still remains.

Last night when I saw past the MLD and just listened to a young man talking to his mom, I thanked God during this whole sacred conversation. Going back and forth, crying, praying and questioning. Many question I couldn’t answer, but that’s ok. I’m glad he asked.

Maybe as Evan said “ he’s finally starting to realize things,” The disease has actually protected him for so long because most of the time he just goes with the flow and lives in the moment. Last night was different and I felt bad for Evan too, because he got to see something in Eli that he has never seen before. He heard Eli ask some really hard questions but he also helped in his own beautiful way to answer them.

“Why did God let me come here with this disability? I don’t want to have MLD anymore and I want to pray for him to heal me”

That was just a snapshot of the tough questions and although I really don’t have answers for them, but there is one thing that is for SURE, and Evan and I both made sure he knew what that was.

Eli is here to make a difference in the world, to show others how to love, to teach us to live in the moment, but most importantly to love, and be loved. He is changing the world just by doing what God has chosen him to come here to do.

It might not be the answer he wanted to hear but there is nothing more true than what we said. He is an inspiration! Whether God heals him physically or not, I can’t answer that, but I can guarantee that through Eli God has helped other people, in more ways than we will ever know.

Eli is going through it all right now, it’s deep, and at times dark. Please continue to pray for the light to shine through to him and from him, so he knows just how special he is, even in a body that less than perfect:

Eli pumping iron at school. Photo credo Mr. Kinch

~ by Rebecca on February 28, 2023.

Posted in Diagnosed
Tags: acceptance, anxiety, can God still perform miracles, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, healing, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, Questions, sorrow, special needs, strength, warriors