As a mom to a child with a rare disorder I face many challenges everyday.
My son’s disorder requires me to weigh everything he eats and account for it, give medication twice daily and get him to drink his medical formula twice daily.
The hardest part of dealing with my sons disorder is his diet restrictions and having to explain to my son that he is different from most children his age and why he can’t eat things that others can.
I feel bad that he can’t buy the same school lunches like the children in his school. He never really asks for anything he isn’t suppose to have but there are days where he has had his protein allowance for the day and he asks for more food. When this happens the only thing he is allowed are “free foods” which are foods with little to no protein in them, for example, applesauce.
One day when he wanted more food and already had his daily limit he said to me “I wish I could eat a lot of protein like everyone else,” it broke my heart to hear that.
Another challenge we faced was when my daughter was born. At the time Evan was five and understood that she did not have Tyrosinemia like he did. But no matter how hard we tried to explain to him, he couldn’t get why she wouldn’t have it when she was older like him. He would always say that she was going to drink medical formula and take medicine like him when she was a kid. He just thought she didn’t have to do it as a baby. And when she had a bottle he would always say she was drinking Tyrex, which was his medical formula when he was younger.
It is very difficult to accept that he is the only one in the family that has to struggle with this.
No matter how much we love and support him that is one thing he is alone in and something that we will never understand on the same level as him. I’m sure as he gets older there will be a whole new level of challenges to face, but for now we take it day by day.
Every time I look at his sweet smiling face or receive a big hug from him, it makes me not worry about any of the challenges we face or will need to face in the future.
I wouldn’t change anything about him, Tyrosinemia is a part of him and his story.
Article written by Amanda, Evan’s mom.
