Fear Not

Sitting in the Toys R Us parking lot this morning, I was one of four cars and before I realized it I think I had been sitting there for almost a half hour. It’s funny how you can get taken back to a moment in time and get lost in it. Today I went back to where I probably should not go and as I learn every time, it’s not a place you want to get lost for too long.

One day shortly after Eli’s diagnosis we went to CHOP to see a metabolic doctor… we needed confirmation of the diagnosis we received at DuPont. As you can imagine the emotions were high and nerves were shot. After seeing one of the better doctors we were told that most likely Eli did not have MLD. His symptoms did not match what MLD symptoms should be at this point. “There are many other lysosomal storage disorders that it could be.” Off to the lab we went for 11 more vials of blood to find out what disease Eli had since MLD was pretty much ruled out in her mind.

With my nerves a bit calmer and the thoughts that Eli might not be dying from this horrific disease running through my head we were finished up and headed to Toys R Us. This kid definitely deserved a toy!

Those thoughts were short lived as we came out from the store and I hopped into the back seat with Eli…just being closer to him made me feel better. My cell phone rang and it was Dr. Brogan…the blood test they did at DuPont came back and it was most definitely MLD. CRUSHED…. There were no other words to describe as I listened to him on the other line…just an hour earlier they were so confident it was not MLD and now here we were, reality smacking us right in the face. I remember opening up the bag and then his new wrestler…handing it to him as he was just so happy to have a new toy and here I was …his mother …devastated, heartbroken and forever changed…in the Toys R Us parking lot.

It’s not often I go back to this moment but maybe in anticipation of Eli’s Birthday tomorrow I am feeling a bit more emotional…knowing that every single birthday will be just as special as it ever was but now I have learned to cherish it just a bit more.

As my relationship with Eli started rocky (no need for all my Eli supports to chime in here) I would tell anyone and everyone how challenging he was…yup…you were screwed if I ran into you anywhere the first three years of Eli’s life and happen to ask me how he was doing. Most times I am sure I would end up crying and I am sure people learned to go the other way when they would see me in the future. It was not until he was around three that things starting changing and we both began really liking each other. It was great!! The child who I could not figure out was now turning into a kid that had the most contagious laugh, loved to snuggle, and always wanted to pray for people who needed it.

Today things are a lot different with Eli. He is the kid who does things when asked just once …he complains about nothing…works hard for most things that are simple to others…goes with the flow and the list goes on and on. If you know him you know these things are true and more. As his mother I have watched him struggle with so many things and it is not easy. Last week I was looking for a water bottle for school and the first three we found were too hard for him to open. Every new bottle we would try I would watch him to see how he handled it… he never would get upset just realize that he couldn’t do it and he would try his next favorite. No moaning or complaining about not being able to do it or not getting his favorite one…yet there I am hiding the tears in my eyes because my baby boy can’t open a water bottle…IT SUCKS! Yet, he is stronger mentally than I could ever imagine. It’s not fair but this is his life and thank goodness he does not know any different…I do though and boy does it hurt. I never realized that I could feel such a pain without being able to do anything about it.

Tonight I will put any sadness out of my mind when it comes to Eli because tomorrow is his birthday and because today I watched him run off of the bus… into the house, give me a kiss and get himself a snack. What a gift that he is still able to do these things. He is a fighter, a gift, a miracle and he is MY HERO!

~ by Rebecca on September 2, 2014.

Posted in Life after diagnosis
Tags: Birthday, Eli and Ellas Prayer Warriors, Fighter, Hero, metachromatic leukodystrophy, MLD, strength