11 years living with MLD
11 years ago today our life changed on a dime.
Most of you have heard our story from the beginning, some have not.
The funny thing about that day, is I still remember what I was wearing, what we did in the waiting room, how the clock seemed to tick backwards as we waited for him to finish his MRI. Thats how it is when a pivotal moment happens. You seem to have hyper awareness of everything surrounding that day and it never leaves you.
They took him late, saying that another child needed to stay in his MRI longer, and we would want that same respect if it was our child. Of course we agreed and tried to pass time playing games with Eli while he was on his loopy meds. When it was his turn we kissed him goodbye and thought we had an hour to wait. After an hour, they came to tell us that they needed to keep him sedated longer to add contrast. Immediately, I knew this meant they found something. Darting out to the playground to call family and friends to ask them to pray was all I could do.
Back to the waiting room, and the technicians and nurses who were chatting us up not long ago, suddenly their smiles turned into blank stares as they passed us in the waiting room. They must have known, known that our life was going to change even before we knew it.
When hours had passed I had called the doctors office from the waiting room to make sure we talked to her before we left. The receptionist answered, asking if I was Mrs. Vivian. My heart sank as I answered “yes” She told me we could not leave until we saw the doctor.
After what seemed like days, they finally came to get us to say that Eli was finished. We walked back and we happily saw him sitting up in bed waiting for us. I remember looking at his smile, so innocent and pure. Joyful, even after being sedated for two hours. The doctor, along with a child life therapist was there with Eli. He would keep the kids busy while the dr took us into “the room”
I felt sad for her, as I could see it in her eyes. She didn’t want to say what she had to, she fidgeted a bit until I asked her to spit it out.
Did he have a brain tumor? No she replied. “He has a disease called Metachromatic Leukodystrophy. Clearly I thought there had to be a treatment, so I asked what we could do. She just stared at us and said “there is no cure” and “He might make it to 15 but there is no viable treatment”
I didn’t hear much that came out of Dr. Hopkins mouth that day, but I did hear progressive, terminal, and genetic. I only let that thought cross my mind briefly, because SURELY, our other kids would be ok.
We didn’t cry, we walked back to Eli and got him out of that bed as fast as we could to head home. A 45 minute ride that never seemed to end. Calling family and friends, not even believing what was coming out of our mouths.
We arrived home, friends had the boys and I remember when I saw them, my heart just sank. How could we tell our 11 and 13 year old boys that their brother had a terminal illness … and there might be more bad news to come.
I do remember a couple things that Hut and I agreed on (shocking I know)
- We would be honest from the start, with Eric, Evan, and Eli, even Ella to a point.
- We would not settle for “no treatment options”, we would never stop believing that we would find a way to save Eli’s life… and little did we know three weeks later fight for Ella’s life as well.
Our journey was just beginning and it has been filled with cup draining moments, along with cup filling moments.
With tears in my eyes, I can say that it has not been easy and it has affected everyone …albeit differently.
My baby boy, my terror for the first three years on this earth, turned loving and Godly young boy, how? Why? It’s so unfair when children get sick. And the thought of genetic testing for the rest of the kids, made me sick to my stomach.
Yet today is about Eli, His fight started 11 years ago today and I don’t believe he has ever stopped fighting.
He is my inspiration, my hero!
Our story is old, it’s been told many times, but to US this story is our life. This story won’t EVER be a thing of our past, but will continue until we are no longer hear to share it ourselves.
Sometimes, it’s healthy to look back, but for me, the only thing I get out of looking back now, is to be reminded just how far we have come when they said we never would!
💗💙
Fear Not 