When trusting your gut leads you to the unthinkable
These pictures were taken in July and August of 2012, just a few weeks prior to Eli’s diagnosis.
People have often asked me how we knew something was wrong with Eli, or what symptoms he had before diagnosis, and I normally say there weren’t many, and the ones he did have were subtle. Our sweet Ella on the other hand had none that we could see. Her MRI shortly after diagnosis would tell a different story.
For about a year before diagnosis, we would notice some slight intention tremors in Eli’s hands. These were chalked up to dehydration at the doctors.
As you can see in the one picture, Eli would stand a bit guarded. His arms were always a bit bent at the elbows, never really straightening out. He also seemed to be a bit slower than Eric and Evan, and thankfully we had something to base his differences on.
Like I said, these few things were pretty subtle, but there was one thing in particular that led me to believe something was going on.
Eli’s field day in kindergarten… a day, or I should say a moment, that is seared into my being.
I will never forget watching him that day. It was a beautiful day outside and I was excited to be there just as I had been for the boys in previous years. We went from event to event until it was his turn to do the sac race. You know, you pick up the sac, jump in, grab the sides and hop to your partner. Well, if you have ever seen anything in slow motion, this was what it was like watching him. Suddenly it hit me that something was wrong and it was so painful watching him.
When it was his turn, he grabbed the sac and tried to get in, I will break here and admit I am the crazy mom screaming his name to “come on”. I could see that he just couldn’t seem to understand what he was supposed to do. Maybe he did, but he couldn’t put the three things together. Get in, hold the sac, and hop. I could see him thinking and trying, but it never clicked, so he just ran with the sac in hand to his partner.
It was in this moment that I knew my smart, God loving, girl crazy son had something going on that seemed to be challenging his brain. This began a quest for answers.
We started pushing for answers, but no one seemed to think that anything was wrong. I knew otherwise. Some doctor visits amounted to no answers, so I pushed to go see a neurologist. I really thought maybe, just maybe he had a mild CP.
After an appointment at CHOP with a neurologist, we left being told that he didn’t need an MRI, that he just had a developmental delay.
I refused to settle for that answer, and made and appointment at DuPont.
Summer was over and we went to see the young neurologist at DuPont. She did a good exam, but ultimately said he did not need an MRI. I looked at her and disagreed in the nicest way. She only later told us that the only reason she agreed was because she saw something in me, and believed in that moment that she would trust my feeling. We scheduled the MRI for Sept 20th and we waited.
On this night 11 years ago, when we were going to sleep, I was uneasy, and I remember Hut and I talking wondering if we would find anything out tomorrow. We just wanted to know, no matter what.
I had a dream…
There was a cross made of light and words. Actually the words made the cross. Words that I knew meant something, very personal to my beliefs, and words that made me realize that I would have nothing but my faith going into this MRI. I knew in my soul that our lives were going to change, but I could never have imagined how much!
We may have had an idea something was going on, but no amount of questionable sac races, tremors, “he’s ok” conversations, could have EVER prepared us for what was waiting for us when we walked through that hospital door on Sept 20th.
Fear Not 