Healing all around
I have thought about Sept 20th for a long time. I have thought about the sadness that comes with that day, but I decided that this year I would choose differently, but how remained the question. A few months ago I made the decision to find a way to give back to our community who has been so supportive of us over the years. I knew it couldn’t end there, so when we entered The Seashore House at CHOP, it hit me that we could find a way to give back to some that were less fortunate and maybe heal a little more along the way.
Living in the hospital for 7 weeks opened my eyes to how incredibly blessed we are. From day one there were stories of sadness, and it seemed to just get worse.
I have to admit, I went in a bit judge-mental when I saw our “room” How could anyone live in half of a hospital room for weeks on end. (Actually we did this twice before in Italy, so it should have been no surprise) Boy was I wrong! A closet as wide as an ironing board and a bathroom that I was not allowed to use. By the end of day one, we had a baby for a roommate who cried almost 24 hours a day. Eli had to heal and this seemed to be impossible the first two days.
We were promised a new room, but I didn’t know who it would be with. I told the social worker that it could be anyone but the boy who seems to fight with everyone. We definitely didn’t want him. I can’t have a problem kid with Eli, as he has such a long road ahead of him. The next day, I found out that we were moving but… yup, we were going with the one I didn’t want and we had no choice.
Well, God had plans and his plans aren’t mine so I guess he knew better. We moved in with our roommate and from the first step in the room I felt defeated! Food on the floor, the half filled bottles everywhere, extra food on the bed, I could not imagine how this could work. Not only that, but there were no parents with him, no rules, and not much awareness between right and wrong. This was going to be a nightmare I thought, and it was at first, until I started realizing that I was put in that room for a reason. I might never know the full reason, but I soon would learn, that he needed to be loved, to be seen and he needed to be heard. That’s what I tried to do, and every day I felt more and more thankful that I was there for him. Funny part of the story is, I truly grew to love this young man, care about his life and when I changed, things changed. Not just for him but for ME!
Our nights were spent going on walks to the garden, we would feed the birds and get ice cream. An hour trip around the hospital soon turned into two hours out of our room, walking to the main cafeteria, going outside to chat and get our nightly snack, saying hello to the same people we saw every night and the smiles grew bigger, on both of us.
Eli likes rules, he doesn’t talk back and he knows what is expected of him. The issues in the room were unexpected foreign to him, he didn’t like it. It was challenging to say the least. He would ask to get moved and then we would talk about how maybe we were put together for a reason. We would talk about the fact that we would get to leave soon and I would remind him how many people love him and that not everyone has that, this was just temporary, I would say. These talks would help for a bit, thankfully.
After about a week with our new roommate, the nurses started commenting to me how he was different, he wasn’t as angry. He was easier for the therapists and nurses, and more willing to listen. They wouldn’t even question our escapades anymore as we went around the hospital after therapies were over. We would grab our hall pass and wheel out. Racing down the ramp with our friend Jana and her mom and going to the fountain almost every night. We learned about each other and became friends.
Fast forward to week six, getting read to graduate shortly, we did switch rooms toward the end. We had about a week in another room and it actually worked out, because it was a transition to helping us leave each other. As much as he was dependent on me, I became dependent on him, to let me help him and be there for him.
We continued our dinners together and even went to the cafeteria almost every night the three of us. We knew the guards and they even tried their best to help us find fireworks on the 4th of July. That was our big escape that night, where we left and walked out front of the hospital to watch what came up high enough from behind a building not too far away. It was truly a site to see, not the fireworks but the three of us laughing and making some memories to last a lifetime.
Eric… Eric was our roommate and I grew to love and accept him for who he was, not who I though he should be or how I thought he should act. You are only a product of your environment, Eric, Eli, me, and everyone in the world. We are a product of what we are shown and taught and also the choices that we make … and that doesn’t have to be a bad thing, even when so many things seem stacked against you. I learned from that young man with the not so great environment just how quickly your heart can change and as it is changing, it can also be healing!
So as this 10 year anniversary Diagnosis Day “celebration” is upon us, I am a different person then I was last year, I am filled with gratitude for life, and for “normal” days that we never thought we would have, but just as importantly, I am thankful for the young man Eric, who helped me heal a little more than I would have without him.
Thank you for helping us giveback to those like Eric, because there are many more people and families that need help as well! I hope we can continue to support those that need to heal and in doing so WE will no doubt be helping ourselves heal along the way!!




Laundry giveback
~ by Rebecca on September 15, 2022.
Posted in Along the way, Diagnosed, living
Tags: acceptance, eli and ella, Eliandellasprayerwarriors, gene therapy, giving back, God, healing, hope, journey, joy, learning, Love, metachromatic leukodystrophy, MLD, never give up