Tuesday, June 11, 2013
"My Little Sweet Pea"
With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.
Today's post is from Chris Langan, Ilah's Dad
Sweet Pea, Stinkerella, Princess, Taparella, Sweet Ilah - these are just a few of my nicknames for my Ilah, who was diagnosed with Rett Syndrome when she was barely three years old. She is eleven now and still the light of our lives.
My wife and I were barely into our thirties - and at the time the diagnosis was certainly a kick in the gut. I found myself mourning for my daughter's future, as well as my family's - looking forward constantly into what life would be like in ten, twenty, forty years.
What we have learned, though, is that every day presents its challenges, many of them not even Rett related. Living and dealing with in the moment is the only way to keep sane. We have four kids now, and although Rett has changed the way we live our lives, it does not define our family. It has become just "a thing we deal with," another one of life's challenges to be conquered.
Living with Rett has even managed to teach me a few things. I have learned what it truly means to be a father. Being Ilah's dad has allowed me to maintain a tenderness I might have lost with growing older. It has taught me a patience and tolerance for others. It has taught me that doctors don't know everything and it's okay to challenge them. It has strengthened my marriage - my wife and I had no choice but to face these challenges arm in arm, or be torn apart. It has taught me that the little stuff is unimportant, especially in the face of my child's health.
Ilah is the sweetest, happiest, most loving daughter I could've ever hoped for. She loves to cuddle and be close (especially with me, she is definitely Daddy's girl). She loves to read and listen to music and watch TV. She loves to play with other kids. She is just a normal kid, who happens to have Rett; we are just a normal family, and we all love her so.