This is Nathan. He is a sweet and cuddly boy who has completely captured our hearts.
We knew shortly after he was born that something wasn’t right. He wasn’t doing normal baby things like breathing and eating on his own. He was whisked away to the NICU. As the hours, days, and weeks unfolded we learned about medical abnormalities affecting his brain, spine, heart, and kidneys. At two weeks old we had the official diagnosis of Cri du chat Syndrome. We were devastated as this was not the life we were envisioning for our son.
Although we face many difficulties, his life is not a burden, it is beautiful.
Over the last few years Nathan has become our teacher. He is continually teaching us about unconditional love and patience. He has proven his worth, not by what he accomplishes, but by being present in our lives. It is a joy to know him.
His favorite things are listening to music, being outside, balls that rattle and shake, toys that spin, dolls with big eyes, and his big brother. Nathan eats primarily with a feeding tube, walks short distances with the help of a walker, and his (favorite) words are “mama,” “more,” “bite,” “go”, and “bye-bye.”
It’s incredible to us that someone who is nonverbal is able to get his point across rather effectively with use of his body language, eye contact, and adapted sign language. Even though he can’t talk, he has the best sense of humor.
Our life is beautiful and I do believe with my heart that Nathan is a gift from God, true to the meaning of the name Nathan.
To read about the beginning of Nathan’s diagnosis and a bunch of practical information we learned along the way, check out Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent.
Follow our journey living with Cri du chat Syndrome at kathymcclelland.com.
