Know the signs, fight for victory! This is the new tagline for The Marfan Foundation. My daughter, Hadley, and I had the opportunity to attend the annual Marfan conference in Hollywood at the beginning of this month. My daughter is fifteen and has Marfan syndrome (a connective tissue disorder) and has struggled with an enlarged aorta, severe vision problems, scoliosis and the list goes on. It was truly a life changing experience as we found a new “family” and support group. We also benefited from the wealth of information that was provided from some of the most renowned doctors in the country. Most inspiring was watching near strangers unite under one purpose. While Marfan syndrome is what we have been faced with, the number of syndromes, ailments and conditions one can be affected with is daunting. Although the symptoms and affects do vary, all children with special needs can benefit from defining what victory means to them. At the end of the conference, each individual was challenged to do just that. These personal victories varied from physical, emotional to service oriented.
PHYSICAL: There was a darling three-year-old girl I met at the conference who is severely affected with Marfan syndrome. At her young age, she has already suffered through countless surgeries and has many physical challenges. Victory for her means learning to walk. This is so humbling to me because the concerns I have for my daughter seem less severe in comparison. However, my greatest concern for her is her physical health. What can we do to inspire our children to push for physically victories even within their limitations? For those children who can’t walk and may be confined to a wheel chair, we can do the walking for them. Just getting them outside and moving around can be so helpful. For those with more abilities, bike rides, jogs and a variety exercise can be modified for each individual child.
EMOTIONAL: I met a beautiful teenage girl who was as tall as my daughter, 6’3”! They were instant soul mates! Victory for them is simple: loving themselves. These girls are well on their way! They don’t slouch, they hold their heads up high and surprisingly enough, both wish they were taller. It’s vital to help our children achieve this victory. It is possible even with an imperfect situation. A healthy self-esteem truly determines a child’s happiness and well being in life.
SERVICE: Although I am not personally affected with Marfan syndrome, it will forever be a part of my life. Not only does my daughter have it, her future children have a 50% chance of also having Marfan syndrome. It is not unusual to meet families that have several members affected. This is the reality. Victory for me means…making Marfan syndrome a household name. I have determined to get involved and do whatever it takes to help make this happen. Research and awareness is vital in helping to better the lives of those affected. It is empowering to be able to do something when I know I’m powerless in “fixing” my daughter. These opportunities to be involved are often available in most special needs groups.
I think one of the most difficult aspects of having a special needs child is altering our view of how we envisioned their life to be. Everything changes in an instant when they receive a difficult and life altering diagnoses. I find strength and hope in knowing that my daughter can be victorious, even if it is in a different way than I expected. True victory is taking what we are given and making the most of it!
