When you realize it can be hard for everyone
Imagine having a friend from the time you were born, or a friend from kindergarten that you grew up playing baseball with, did slip and slides with and spent numerous hours with doing typical friend stuff. I would imagine it’s a great feeling, at least it has been for me, as I have watched my boys as they grew up, having this throughout their life. Now imagine your best friend gets “sick”, gets diagnosed with a disease that no one knows much about. A disease that would take him out of the country for a year, and more weeks over the next ten years. During that time, your friend is going through some of the hardest days of his young life, with his mind and body. Your journey thankfully continues on the typical trajectory of growing up, trying to figure out this life and slowly maturing as you are getting closer to adulthood. You are on the path that most get to take, but unfortunately that friend who you you grew up with and made a million memories with, seems to be “stuck” at a certain point, both mentally and physically, but more mentally. I imagine that must be really hard. To watch your friend take a different path, as the distance between you two becomes greater by the months and years. I would imagine it hurts and maybe you don’t even know it hurts but it’s different, and different can be scary, it can be filed with many unanswerable questions. I personally, would like to believe the love and friendship is still there but it is different… how can it not be. It’s ok, you are not alone as we are all hurting about what once was.
A couple weeks ago I reached out to Ethan and Chase asking them if they could take Eli to school one day before the end of the school year. I mean let’s face it, it can’t be that much fun getting dropped off every day by your mom, especially when she asks annoying questions and sings off key the whole way there. The boys were very responsive and we picked today as the day that Eli would go with his friends to school!!!
I felt like a little kid this morning! I woke late and quickly remembered they were getting him! As I jumped up out of bed, I ran to tell him that he has a special ride to school today! He greeted me in typical Eli fashion, never too high or low, but he was excited. The boys were here a few minutes later and I watched them get out of their car to help Eli. I couldn’t help but smile with a tear in my eye. Something so simple as a ride to school would make Eli’s day, and mine too!!!
I imagine this is how it would be daily if he was “typical” but he’s not and that’s ok. He’s better than typical and he’s ours forever.
I recently got some good advice when none of Ella’s “friends” invited her to their house before the dance. A teacher expressed that she is loved and cared about, but there is almost no way possible for other kids her age to understand compassion and empathy at this age. (Although parents can) It opened my eyes a bit more to the truths of how their disease not only affects us, but others as well. Mr. Kinch also would go on about Eli’s friends, and expressing to me that he thought it might be harder for Eli’s friends then I realized. How did I never think of this? Maybe I was so wrapped up in my sorrow, that I never put myself I their shoes… I will try to do better.
So, today when they arrived to get Eli, I not only saw the boys that were all once really great buds, but I saw the young men, that they have grown up to become, and for a second I realized that I am not the only one who has been challenged over the years watching this diagnosis change him. I think we are more alike then I realized.
For so very long I have focused too much energy on what Eli has missed out on since MLD has changed him. It’s hard, and it feels like a weight sitting on my chest, more times then I would care to admit. I never really thought of how it affected others outside of our family. I never thought that these boys who were such a huge part of his life could have gone through their own hurt or confusion over the years about what was happening or how to treat Eli. How to move forward with their friendship, when he seems to stay still. Friends who once scootered around the block together, are now driving around that same block, Eli can just watch from afar as their life goes on doing things that typical developing kids normally do. Yet, I’m sure it has affected them too! I’m sorry I didn’t recognize this sooner. I have loved one since birth and the other not long after when the boys met in kindergarten.
After school they texted to see if they could also bring him home which I was thrilled about. As they drove home listening to rap music (one of Eli’s favorites) they decided to stop at Wendy’s for a frosty, capping off the day in the best way! When I walked in the door from getting Ella, I walked right down to his room, and saw a big smile on his face. He told me that it was a great day being with his buddies and he hopes to do it again sometime. When we went to bed that night, we said a prayer of thanks to God for this special memory and a prayer of thanks for Ethan and Chase. Of course it was Eli’s idea, which is just another reason that he is so incredibly special.
I thank Mr. Kinch and Ash for helping me to see things a bit different, for helping me realize that this journey of life we are on is about learning and loving it all. For growth doesn’t happen when things are always as we want them to be, but in those moments that we are challenged to change and grow THROUGH them.
I believe that life doesn’t happen to us, but for us. It’s what we do with it that matters.
Fear Not 