Madelena and I were talking about why hard things happen, and why there is so much sadness in the world.
She determined that this life was full of sorrow, but that the hope that we find through our connection to spiritual things can help us deal with the heartache and trauma that we all face. With a childlike innocence, she is confident that we will be together again as a family, and that everything will work out. She feels that it is her mission in life to remind people to be happy, to comfort them, and spread hope.
Our kids have a super rare disease, and have not met many other people with MLD, especially the juvenile form that they have. Recently, I realized that it would be helpful to Madelena to connect with someone who has had similar experiences. In Baltimore, there is a young man named Greg with the same diagnosis and similar challenges to Madelena’s. His mother, Pam, and I discussed it, and decided it would be positive for both of them to have an MLD friend. We are both very protective of our children, and don’t want to cause them any more pain or sadness, and so we cautiously introduced them to one another on FaceTime.
This has been wonderful for Madelena, who revels in delight that there is someone who she feels understands her. She loves chatting with Greg and feeling a connection with another person who is so positive and hopeful, despite difficult circumstances. It is a relief for Madelena to talk to someone who knows what it is like to do rigorous (and never ending) physical therapy, and be frustrated with the limitations of their body.
Their conversations are hilarious, as both of them are giddy to talk to each other and have challenges with their memory. I sit by Madelena, and Greg’s mom sits with him as the kids talk, because two teenagers with poor impulse control and low inhibition need to be watched!
It is a wonder to me how similar Greg and Madelena are. They both have an innocent and hopeful outlook on life, and have an intense desire to "do good." They both have lost their inhibitions (thanks to the MLD) and aren’t afraid to display their tender and sweet personalities. What is interesting to me is how they both love to nurture plants, and want connections with everyone. It is like they are living out the aftermath of a near-death experience. They have set everything else aside and are intently focused on love, connections and nurturing.
Greg is on a mission to educate the world about MLD, and has a goal to be on "The Ellen DeGeneres Show" to get the word out and educate people about this disease. This is a whole new idea for Madelena, and she squeals with delight when she talks to anyone about it.
Both Madelena and Greg love to give and serve. Greg makes bracelets, and Madelena’s latest kick is to pass candy out to the kids at her high school. This started after Christmas when we gave her several bags of candy to pass out, because she was constantly raiding our pantry for goodies to share at school. She calls herself the ‘Candy Girl,’ and feels it is her personal mission to bring happiness to whoever is in her line of sight at school. With a new batch of candies this morning, and an Easter bunny bag to carry them in, she couldn’t wait to get to school to start passing them out.
I asked her how she decides who to give the candy to, and she replied that she gives them to whomever is near, but she especially seeks out the kids who are sad, because she just knows that the small gift will brighten their day. I asked her how she knows who is sad, and she blithely said that she "just knows," she can feel it.
Madelena has always been an emotional sponge, and easily taps in to another’s emotional state. This gift that she has, and her desire to spread joy and acceptance make my heart so full it could burst.
This Easter, as we ponder the gift of the Savior’s atonement, it comforts me to think of the promise that all can be restored, that all wrongs can be righted, and that all hurts can be healed. Witnessing the pure love and hope of Greg and Madelena confirms this, and proves that even amid trials, hope springs eternal, and love knows no bounds.