By Guest Blogger Selena Ariana ("Lena Bug"), Age 4, as told to her grandmother, Marylou Moeller.
I am my mother’s first child; and though she didn’t give birth to me, I got to her as fast as I could. We first saw each other when I was 7 months old. My birth mother was very young and afraid of the problems I have. When they brought me to my mom, I could see fear in her eyes also, but what helped me was the love I saw in her face. My neurological condition forces my body to bend backwards. I have no control over my extremities, I cannot walk or talk or eat properly. My eyesight was very bad when I came to my home and met my mom and dad.
When I lived with my birth mother, I rarely went to the doctor, but now, I go all the time. One of the doctors fixed my eye, another tests me constantly to monitor my progress. A very kind doctor works in Ft. Worth and he helps me most of all. I trust him almost as much as I trust my mother, because my mother trusts him. I can see it in her face and hear it in her voice.
You’d think all these situations would be hard for a mother to deal with. Well, you don’t know my mom. She talks softly to me, she touches me gently and moves me around with a kindness and concern that makes me love her and trust her to take good care of me. I know sometimes she has to do things that are hard for her. Sometimes after a difficult procedure or a painful reality hits her, I hear her leave the house and go outside. I can always tell she’s been crying when she comes back, but she never scolds me or in any way acts like I am any different from my brother or the other children who come here to play with him. Sometimes they play with me, too, though I can only listen and watch them. I like to be included. My mom makes sure I am.
Some of the people who come to our house call me a foster child, but my mother calls me her baby. She tells me all the time that one day I will be a real part of the family and those “CPS” people will not come and ask questions about me anymore.
The day after I came to my home, my mother bought me really cute clothes and put bows in my hair every day, no matter if I went somewhere, or if we just stayed home together. Now I have lots of bows – a whole big bag-full – and every day she puts a different one in my hair after she brushes it.
My mom’s priority isn’t her house - it’s her family. If I need attention, she stops whatever she’s doing and helps me. In the mornings, she sings me a “wake up” song and touches my face and kisses me. Then, if I don’t have to go to school, we snuggle for a long time. She tells me, “This might be the day you walk or talk, and if you try, I’ll help you.” I always smile when she talks to me. At night, she sings me another song before I go to bed and she kisses me again…of course, she’s very affectionate and kisses me every time she sees me through the day.
My mom made a decision to have a feeding tube put in my stomach. That was a hard day for her, but the doctors said they had to do it so I wouldn’t aspirate my food into my lungs and die. Because I have a “button” in my tummy, that’s how I get the majority of my food. One day Mom and Dad told me we were going to New York and we all got up very early and got on a plane. I still had my pajamas on. When my mother pulled my shirt up to hook my feeding tube onto the button, the button was gone. A little balloon holds it in my stomach. During the night, the balloon deflated and the button fell out. Here we were, high in the sky and she had no way to feed me. When the buttons come out, immediately my body starts to close up the hole. To open the hole is very painful. My mom worked very slowly and carefully, not hurting me, and finally got a little stirrer for coffee into the small hole she made. When we got to New York, we went to the hospital, but they wouldn’t do anything because they hadn’t done the surgery on my button. My sweet mother fed me through that coffee stirrer and took care of me the entire time we were on vacation; many times giving up her own fun because she was so worried about me. When we got back home, the kind doctor in Ft. Worth was flabbergasted that she knew how to take such good care of me.
Mom doesn’t lie to me. Last November, my mom, dad, little brother, all my aunts and uncles, some of my nurses and lots of friends went to court and now I am really home. My mom and dad adopted me. I’m a very lucky, very happy little girl. I have the very best mom. I’m called a “special needs” child and that’s good because I have a very special mother.
– By Selena Ariana. Call me Lena Bug – that’s what mom does.
Disability.gov launched its first-ever Stories of Strength contest in order to give visitors a chance to share their stories. This month's contest asked applicants to explain what quality makes their Mom strong. A special thank you from our team to everyone who shared their stories.