Lotte Diomede
Because I like to relax, enjoy myself with my family, and take a respite from all the requirements of the daily grind, I have started SMILE Mass. This foundation seeks to enable individuals and families with a disabled member to enjoy a getaway similar to those who have no special needs.
I know how difficult traveling with a handicapped family member can be; I speak of it first hand. My son Nicholas was born premature in 2000 with buildup of fluid on his brain. This condition, known as Hydrocephaly, creates many disadvantages for a growing child. Nicholas faces numerous obstacles every single day of his life, everything from getting out of bed to feeding himself – things an individual with a normal functioning brain can do for themselves multiple times daily. He has been in a wheelchair his entire life and requires constant assistance from our family, his teachers, and friends.
In addition, Nicholas is on a special diet, which requires that he not consume any sugar or carbohydrates, which could bring on a seizure. He also has sensory issues, which cause him to get nervous and sometimes hyperventilate in unfamiliar surroundings. He requires oxygen at night, and receives medication five times every day.
Why am I telling you all this? Because even though Nicholas has these obstacles, he can smile at the warmth of the sun on his face; he senses when I am relaxed and enjoying time with my family; he knows when those around him are content. He is an amazing inspiration to the rest of my family. I consider us fortunate that Nicholas is always happy. He rarely complains. His spirit is my lifeline. Knowing the big struggles he goes through every day puts my life in perspective.
He has a sister who is 16 years old, who never resents when thing don’t always go her way. The sacrifices she has had to make over the years are not always easy to justify as a parent. Until now, I could only dream of a vacation where we had all the equipment we needed, a place where my daughter can feel just as special, a place away from home where we could build memories that would last a lifetime.
It is this dream that I would like to make a reality for any family that experiences a similar situation in life. I feel so lucky to have great friends and family who believe in my mission to change lives, one family at a time. I owe my mission to Nicholas and if it weren’t for him, who knows if this is the path I would have chosen.
