Lucy Update


From Lucy's Desk :: She Loves To Draw

At the moment, Lucy is busy in the kitchen frying potatoes. Working in the kitchen without the aide of her mother brings her a sense of accomplishment and great joy. Yesterday she fried me eggs and then eggs in a nest (SO MUCH FOOD!). She sat beside me and watched me take a bite and asked, "What do you think, mommy?" I said that it was delicious (which it really was) and she started to cry. "It's just happy tears, mommy," she explained, embarrassed. "I know it's silly."

Lucy's medication causes her to have little control over her emotions and temper. She is struggling with getting incredibly frustrated and angry with her brother. To be fair, her brother doesn't often make it easy. A few times, she has flown off and punched him in the arm and immediately started crying because that's not what she wanted to do. The tears just infuriate her and she sometimes runs off to her room or outside to the swing hanging from the huge oak tree. I can see her from the kitchen window as she sits out there. She looks so defeated and confused. She talks to herself--like she's trying to reason with herself--or she sings. One day she cut all the tall leaves from the lilies and tied them into cute little bell-shaped dolls. She did that until she was calm enough to come back inside and be around the rest of us. "I made this," she said, handing me the doll. "It helped."

Most of her seizure activity happens at night. She isn't aware of it until she wakes up soaked in urine. She used to try to hide it, ashamed, but we have finally convinced her to wake us up and let us know so we can help her change her bedclothes and get her comfortable again. This activity prevents her from sleeping well, as you can imagine. It also causes a great deal of embarrassment. She sees her friends across the street having sleepovers. They never invite her (which makes me sad) but I know Lucy is secretly glad they don't invite her. She had one sleepover at her grandma's and had a seizure that caused her to soak the bed. My mom found her sitting in the room with her head in her lap, the light on, not knowing what to do because she didn't want to have to wake grandma up and explain.

Being social with kids her age is difficult for Lucy. She is about the size of a younger teenager. She has already hit puberty and is maturing. The girl's her age are half her size and still look very much like little girls. Because of this, I think her peers think she's weird--besides the fact she sometimes has absent seizures that probably look odd to those around her who don't understand. She has come home on more than one occasion in tears but her daddy put a stop to that by talking to the girls and their daddys.

All in all, Lucy is doing an extraordinary job and I am very proud of her. I know this is hard and confusing, but she's a trooper. She did so well last year in school suffering through seizures at a time when we didn't understand what she was dealing with. I know she will handle this year well, too. She can't do gymnastics at the moment, which breaks her heart, but we keep plenty of art supplies at the ready for her. If she can keep her hands busy, she seems to find a measure of peace. The girl LOVES to create, just like her mommy and daddy.

What's my biggest fear? I am afraid Lucy will have a seizure during the night that she struggles to come out of. She holds her breath during seizures and I try hard not to dwell on that for very long because I won't sleep either. The other night, I found myself staring at her as she slept--watching her body tremble and jerk. I cried and decided I just had to go to sleep and let her be. God has to take over for me...

And I have to be willing to trust Him.

~Gia

2 comments

  1. Gia and Roger, I pray everything goes well for your family. I could see the pain in your eyes when I saw you both in Nashville. The both of you need to stay strong together as when one is weak the other is strong. That is balanced strength that makes you one.

    Benjamin E. Rios

    ReplyDelete
  2. Gia and Roger, I pray everything goes well for your family. I could see the pain in your eyes when I saw you both in Nashville. The both of you need to stay strong together as when one is weak the other is strong. That is balanced strength that makes you one.

    Benjamin E. Rios

    ReplyDelete