I can not take my children out to do anything without Lillian being stared at, questioned in the eyes of other people. That upsets me, very much. My two year old daughter can not tell you how this makes her feel. While she has words and a great vocabulary, these are the things I want you to know on her behalf.
There is NOTHING wrong with my child.
Just because my child looks visibly different than your "average" child doesn't mean that there is something wrong with her. It really hurts me when people ask me what's wrong with her. There is NOTHING wrong with my baby, she is perfect!
She is NOT disabled
Technically, Lillian's diagnosis qualifies her to be stereotyped as disabled. I really HATE that word. My child isn't disabled. She is DIFFERENTLY ABLED! Calling my child disabled is saying that she will never be able to do things and that she can't accomplish her dreams. While doing certain things is challenging for Lillian, she always finds a way to adapt to the task. She can do anything she wants to do with the love, support, and encouragement from the people who are closest to her. It takes a little work at times to achieve milestones, but no matter what she makes it work.
She sees you staring
We see you staring at her. You think you are subtle, but you aren't. You may not know, but she's asked me many times "who is that?" when she feels like she's being stared at. She knows she is different, you staring at her doesn't help the situation any. If you have any questions about her or her condition, ask us! I'd rather explain to you and fill in the gaps, because the staring is painful.
She isn't fragile
Lillian is your typical two year old child. She is going to run, fall, and get scraped up. While I would like for her to exercise a little more caution, she doesn't. If she wants to play with your child, you don't have to worry that your child is going to do any harm to my child. She is a tough little girl. She is two years old and has had five surgeries. She falls and says "boomy" and gets right back up.
We can hear the whispering
I have very good hearing. I can hear all those, "look at that little girl, I wonder what's wrong with her." and "that poor baby" comments. Don't whisper about us, it's offensive and very hurtful. Ask me, it's not that hard or too much for me to ask.
She doesn't want your pity
She doesn't need your pity. I really really HATE the sentence, "that poor baby, I feel so bad for her". Why? There is NO REASON to feel bad for her. She may be differently abled, but she is stronger than most adults are. She has a fire in her eys. She doesn't let her disability stop her. Why should you feel sorry for her, when she doesn't feel sorry for herself? She doesn't want your pity. She wants your love, support, encouragement, and help if she needs it.
She is not in any way weak
My child is strong. She is fierce. She can do anything that she puts her mind and heart on. She is two years old and just completed surgery number five, with surgery six to be scheduled within the coming weeks. She is strong enough to handle just about anything life or any person can throw at her.
Lillian is a loveable, happy go lucky, typical two year old girl. We may have to jump some hurdles and work a little bit harder, but we don't let that stop us. She is destined for great things. We have achieved so much in our two years and I can't see how brightly her light shines on the rest of the world and the positive influence that she will bring to her graduating class. Before you go assuming things about me and my child, you should ask us. Get the full story, let us show you who Lillian is in the inside, rather than her outer appearance.
There is NOTHING wrong with my child.
Just because my child looks visibly different than your "average" child doesn't mean that there is something wrong with her. It really hurts me when people ask me what's wrong with her. There is NOTHING wrong with my baby, she is perfect!
She is NOT disabled
Technically, Lillian's diagnosis qualifies her to be stereotyped as disabled. I really HATE that word. My child isn't disabled. She is DIFFERENTLY ABLED! Calling my child disabled is saying that she will never be able to do things and that she can't accomplish her dreams. While doing certain things is challenging for Lillian, she always finds a way to adapt to the task. She can do anything she wants to do with the love, support, and encouragement from the people who are closest to her. It takes a little work at times to achieve milestones, but no matter what she makes it work.
She sees you staring
We see you staring at her. You think you are subtle, but you aren't. You may not know, but she's asked me many times "who is that?" when she feels like she's being stared at. She knows she is different, you staring at her doesn't help the situation any. If you have any questions about her or her condition, ask us! I'd rather explain to you and fill in the gaps, because the staring is painful.
She isn't fragile
Lillian is your typical two year old child. She is going to run, fall, and get scraped up. While I would like for her to exercise a little more caution, she doesn't. If she wants to play with your child, you don't have to worry that your child is going to do any harm to my child. She is a tough little girl. She is two years old and has had five surgeries. She falls and says "boomy" and gets right back up.
We can hear the whispering
I have very good hearing. I can hear all those, "look at that little girl, I wonder what's wrong with her." and "that poor baby" comments. Don't whisper about us, it's offensive and very hurtful. Ask me, it's not that hard or too much for me to ask.
She doesn't want your pity
She doesn't need your pity. I really really HATE the sentence, "that poor baby, I feel so bad for her". Why? There is NO REASON to feel bad for her. She may be differently abled, but she is stronger than most adults are. She has a fire in her eys. She doesn't let her disability stop her. Why should you feel sorry for her, when she doesn't feel sorry for herself? She doesn't want your pity. She wants your love, support, encouragement, and help if she needs it.
She is not in any way weak
My child is strong. She is fierce. She can do anything that she puts her mind and heart on. She is two years old and just completed surgery number five, with surgery six to be scheduled within the coming weeks. She is strong enough to handle just about anything life or any person can throw at her.
Lillian is a loveable, happy go lucky, typical two year old girl. We may have to jump some hurdles and work a little bit harder, but we don't let that stop us. She is destined for great things. We have achieved so much in our two years and I can't see how brightly her light shines on the rest of the world and the positive influence that she will bring to her graduating class. Before you go assuming things about me and my child, you should ask us. Get the full story, let us show you who Lillian is in the inside, rather than her outer appearance.