It’s hard to put in words what this school year has been like. To say it’s been challenging is an understatement.
Having a child diagnosed with Keratoconus has been one of the hardest and greatest challenges I have had to deal with. To witness the effects of this on a daily basis has been difficult, to say the least.
Watching your child who you thought could see well become a visually impaired child and then loss complete vision in his left eye is heartbreaking. Seeing the changes that it caused in his daily life and the disruptions that have occured because of it have been overwhelming at times.
We have had to adopt to a new way of life and thinking. What used to be taken for granted is gone. And while sometimes, even if just for a minute, I’d like to forget that he has this disease, the new daily rituals of care and maintenance make it extremely difficult.The grief of this disease comes in waves. I grieve for what has been loss and the changes that he has had to endure. I’m fearful of the toll this disease has had and may take on him, as well as my family. At times I find myself angry at the fact that he has to go through this. Although, this is normal and I’m learning to accept all this, I find myself drawing on his courage.
Every single accomplishment that he has had and the obstacles he has overcome this past year have been a celebration. I have cheered, laughed, and cried with absolute joy and been astonished by his complete strength.
Although this disease has pushed me to the edge and back again, I have become his biggest advovcate and cheerleader. Whether I am crusading for health care, services, doctor’s office or operating room.
I have become a spokesperson and campaigner in bringing awareness to this disease.
I have become well versed in the knowledge, treatment and care of the disease so much, I may know too much.
Yet, through this all, I’ve leaned and cried on many shoulders. My love for him surprises me everyday and fuels my determination to raise awareness.
This disease does not define him. It is only a small part of him.