Many children dream of growing up and finding someone to love more than anything else. From movies like “Forrest Gump,” and books by Nicholas Sparks, people are engrained with the vision of finding the love of their life to spend the remainder of their time with. They see so many people live “happily ever after,” and thus want to create their own fairytale ending.
Opening up yourself to another person, and detailing all of your vulnerabilities and weaknesses can be a daunting task. Just ask anybody who has opened up their lives to a potential significant other. It is an important step in finding one’s self, but at the same time it comes with a heavy price. But what happens when one has a sibling with disabilities? Do you tell your potential suitor immediately about this extra baggage you hold? Do you not talk about your siblings because you think that “ignorance is bliss?” The answers are not blatantly clear, and people go about it different ways. But, the aforementioned issue is one that siblings of children with disabilities often face, as the world often is narrow-minded in being affluent with all types of people in our world. As big of an issue this is, it especially hits home to me, as it was an issue that I too had to overcome as I dove into the part of my life where I was to open myself up to love somebody new, and have somebody new fully love me.
I have a sister named Katie, who has a genetic disease called Metachromatic Leukodystrophy or MLD for short. MLD is recessive genetic disorder which results in the loss of muscle function from the disintegration of myelin around the nerves. This disease afflicted Katie at 7 years old, and after a Bone Marrow Transplant over 16 years ago, she is still with us today, but is in a wheelchair and requires a substantial amount of help to live her daily life. But nonetheless, she is relatively healthy and will always be my hero.
Despite idolizing Katie for all that she has been through, creating a serious relationship with somebody new is still extremely scary. Everyone can remember their first date, or their first outing with that special someone they love. It brings excitement and joy, but it also brings a bit of uncertainty and fear. What do I say or do to get that second date? How can I come across as some amazing person? The questions perplex all of us as we try to do everything right to please that special someone and win them over. But for siblings of children with disabilities, the unique living condition often times makes the issue even harder.
I remember the first time I went out with a girl. It was a school basketball game, and I picked her up and just went and had a good time. My school won, of course, but thats irrelevant. One date led to another, and we spent a few months together sharing our lives and creating a bond. But throughout this time, I never could fully explain the life I lived to this girl. We came from extremely different backgrounds, and I felt that I could expose my true self to this individual. I was afraid of what she may think, and as a crazy teenager trying make the relationship last, I thought by ignoring the issue all together everything would work out. Boy was I wrong. After trying to live this fake narrative, I realized that it was just tearing me up inside. I was sad, angry, and purely confused on why this person could not show me that she cared enough to fully understand my situation and embrace my situation at its face value. She had met Katie multiple times, but never sought to create any type of relationship. I was heartbroken at watching this unfold, and extremely worried of if I was ever going to find someone who could embrace this life with me and love my sister as much as I do.
Fast forward a year.
I was working at a summer camp for children with disabilities for Young Life Capernaum in the summer of 2015. I was leading a few boys at this came for the week, and had traveled to Williams, Arizona to show these kids God’s unconditional love, and provide them a place to find a multitude of new friends. At this camp was kids with disabilities, including my sister Katie, buddies who are able bodied teens serving the Lord, and adult leaders who selflessly serve the Lord and work in this great ministry. It was a crazy week as I was filled with excitement leading my club’s boys cabin, as well as I was excited to see my sister have easily the best week of her life. But really it was one of the two best weeks of her life as she had already been to the camp before. But if you know Katie, you know she is slow to communicate and speak. But at this camp, she talks and communicated better than any other time in her life. The power of the Holy Spirit is real! But even more exciting for me was that I met a young girl who fully understood my life! Our club was paired up with a few girls from Jackson, Mississippi who had volunteered to serve as buddies to our friends with disabilities at the camp. They were smart, loving, gracious girls who had a heart to serve other. But one in particular not only had a servants heart, but stole my heart right from the start.
A tall, beautiful, brown hair, green eyed girl by the name of Makenna immediately caught my eye and proceeded to steal my heart. Makenna was a buddy from Mississippi who was paired up with our club. She had a heart as big as the world, and worked tirelessly to serve our friends, Katie being included. I caught on, over time, that she had seen something special in me as well, and we ultimately started talking after the completion of camp. Makenna went home to Mississippi, and I went back to California, but the 2000 mile separation didn’t stop this relationship from brewing.
The fall of 2015 ensued and Makenna and I visited each other many times. I went to Mississippi and got the Southern feel of SEC football and Southern hospitality. Makenna came to California and saw the Golden Gate Bridge and visited Disneyland. We had amazing times and never wanted them to end. But the most important thing I realized from this relationship was the love and concern Makenna not shared for me but for my sister as well.
Katie got real sick after summer camp, and spent a significant amount of time in the hospital. Despite being 2000 miles away, Makenna displayed compassion and concern much more than I had seen from some people 2 miles away. Makenna’s loving heart was displayed for my sister, and as a brother, seeing someone love you and your sister so much is more than I could ever ask for. Makenna has made me a better person, and has given me the faith that every sibling of a child with a disability can grow up and find someone to love them and the unique life they live.
Siblings of children with disabilities often face fear of finding someone to love them and their siblings. Sadly, often times they shield themselves form engaging in relationships, but even as they do it is frequent that they never find that special someone who truly understands it. The summer of 2015 was the best moment of my life. I met Makenna and instantly obtained solace and satisfaction knowing that there are amazing people in this world who truly embrace God’s love and share upon all who are in His kingdom. I met Makenna and we have shared amazing times together and look forward to our future together. For that I am forever grateful. But to the siblings of children with disabilities who make up the biggest minority in our world, I am confident that you too can open up your hearts to others and find the special someone who will love you and your special sibling so much. Nothing is ever easy, but if you follow your heart and always know right from wrong, you will find the fish in your sea who is just right for you, and for who you are just right for.
By: Michael Deauville