For Patty Ramos, managing her son Armani's type 1 diabetes feels like driving at night without any lights on.
"You just don't know," she says.
Since Armani's diagnosis in 2007, Ramos hasn't yet slept an entire night, always worried, always checking his blood sugar level just to be sure.
Armani, who also has autism, receives seven shots of insulin a day. His first prick of the day comes before he's even awake, Ramos says.
The Oak Lawn mom says she feels guilty she didn't recognize the signs of the disease. Armani was always thirsty, always going to the bathroom. But she didn't think anything about it since it was a hot summer. But when his dad, Martin, took him to the doctor for his school physical, he ended up in the emergency room. His blood sugar level exceeded 800, 100 times the normal range.
She's amazed how quickly the family went from never seeing the needles to daily injections. When she brought him home after the diagnosis she remembers scrambling to hide all the sweets in the house and his fighting each shot. "That is the torment of the pain you go through at first," she says.
She quickly immersed herself in learning about type 1 diabetes, seeking out support groups, doctors, nurses. She wanted to make it go away, she admits. But little by little, she learned it would be her family's reality.
Her focus since has been on managing Armani's levels and on educating the public that type 1 isn't type 2 diabetes. It's an autoimmune disease, not something she did to cause it. The misconceptions infuriate her. "I feel like I am in a box and no one is hearing me."
His sisters, Bianca, 9, and Anisa, 5, are now taking part in a sibling study on type 1 diabetes.
"I just can't find any peace. The only way I find peace is educating and advocating," Ramos says.
HOW WE DO IT
"MY BEST tips and/or advice is to raise your child with love, compassion and patience. Having a child with special needs is just a label to me. To me, my child is the strongest little boy I know and he makes me stronger each day.
"I know he will accomplish great things and do everything and anything other little boys do. All you can do is let them try to do things and most of the time I am amazed on how quickly and easily he figures out how to do them."
Erin Grady, Palatine
"RYAN inspires me all the time. He's a magnet for making people smile. We'll be in line at the grocery store and he'll blow a kiss to someone and they'll respond by saying he's just made my day and I say 'he's made my life'."
Jayme Rybka, Frankfort
Best advice received: "Try to find a way to overcome the anguish and the meltdown and just be strong. Just look at the bright side. It could be much worse. He is a normal, healthy child just like before he was diagnosed and in the end it will work out fine."
Worst times: "Every night and when he's away from me."
One thing she's learned: She had to get over the guilt she felt.
Her hopes for the future: "A more carefree life for my child."