Fear Not

Maybe it’s by choice or maybe not… Maybe it’s out of fear or maybe you simply have learned to block things out and only see what you want to see. If one day you see the thing you are most afraid of , then what’s next? To truly open my eyes I have to prepare myself for the reality that might be right in front of me… staring at me… Trying to break me down with every single step.

This week I was playing football with Eli in the backyard and of course he likes to win so that means he has to score… In comes Mom as the steady QB and as Ella quit before we could get the first pass off, Eli was the man! Getting every single handoff or short pass there was. As I Watched him run I felt as though my eyes were being opened for the first time in a while… I could see it all and my heart sank. The yard is not long but Eli would have to run from one end to the other to score and sometimes he would breakaway from me and go the whole length of the yard. On this day he could not make it one time from one end to the other without falling. We kept playing but now each pass or handoff became a check for me to watch every move he was making. Was it his ankles or legs causing this? Was it his muscles becoming weaker or does he just seem to not have that much control over his legs anymore?   I didn’t and still don’t have the answer but I do know that something is different and it’s not what I ever wanted to believe. 

The next day my phone rang at work and it was the nurse…something was wrong with Eli but they couldn’t quite explain it. A teacher saw him having a staring spell then his balance was off and he was stumbling more than ever. This was followed by some confusing statements at recess. Obviously Eli needed to be picked up and checked on. He seemed ok… Maybe a bit slow and his legs were not great but maybe he was just tired. Our minds raced…. What is going on? 

If anyone has been around any of us they hear us tell Eli “Stand up.” It is a statement that repeated maybe 20-30 times a day and it’s a simple reminder for him to straighten his legs as much as he can. I want to scream “Don’t let this disease win!!!” Like he/we/anyone can do anything about it anyway but his legs being bent is something that will continue to make his muscles tighter which will make him bend more…. It is a vicious cycle. The fact is, they hurt…his muscles are tight. He try’s to hard to do everything “right” but It’s not easy and us”willing” this disease to not get any worse is not working. 

So now that I am looking with my eyes wide open, I am questioning everything . One of the biggest things being this “miracle” that we asked for and prayed for. Is it still a miracle if they continue to progress… If Eli can no longer walk will I still believe this is our miracle? Can I get past the anger and sadness of what MLD has already taken and what it might continue to take? And Ella… My precious daughter that I thought we would surely save from this disease… If the disease is progressing in Eli, surely there is a good chance it will in Ella. Her stamina is already worse, her left foot turning in, her hip pain…but I have chosen to believe these things were before GT took over.

Maybe I am a fool… maybe I just can’t bare to see what is really going on or maybe I just wish to continue to believe that MLD will not win against these two! I just know every ankle turn, every hip pain, and every trip and fall makes me question everything…what’s next. 
Everyone says “just live” I get it … I am… We are and they are. I just pray that God gives us the strength to deal with whatever comes next. 

Eli is obsessed with snapchat filters:)

Please pray for his legs… Strength and for us to be doing all we can for him.

Ella running at a fundraiser at school! She did awesome!

The best dog/pillow Ozzy and Eli 

Ella’s 2nd grade school pic

~ by Rebecca on October 7, 2016.

Posted in Diagnosed, Life after diagnosis
Tags: Eli and Ellas Prayer Warriors, gene therapy, metachromatic leukodystrophy, MLD