We have a pretty routine life. I developed a routine years ago because I knew it was better for children. I knew it would be key to keeping my sanity as the most important job I'll ever do. A stay at home mom. Today we woke up bright and early. It was our first day of headstart and everyone was busting at the seams with excitement. I woke little Quinn up with a kiss and a tickle. She happened to sleep all night in her bed which happens rarely. Most nights she ends up in my bed mid-night. She's never been a good sleeper. We get up and she is obviously tired and not too happy about it. I leave ample time because rushing with her stresses her out and she has a tantrum so we go slow. The first thing I ask her is if she is hungry. She shakes her head yes. The next few minutes I know will ensue of me deciphering what she wants to eat to avoid a meltdown on this first important day. She says she wants "si-ul" I know her well enough to know she is asking for cereal.
Then she says "ma I unt si-ul in a tu if oh ilk"
no lie exactly as that is typed is what I hear. After a few seconds I ask her to repeat. I know I have to get it this time or she is going to flip out and lose it. Finally I discover 10 seconds of silence after her repeat what she wants. She wanted cereal In a cup with no milk. Phew catastrophe averted. I have had people laugh at me when I tell them I'm scared to not understand her. Most of the time I can get her to repeat herself more than once but sometimes once is it and you can see the frustration behind her eyes. Imagine speaking a different language than your child.
I know there is a beautiful and complex little girl behind those big brown eyes just wanting someone to understand her. To laugh at her jokes and to share her frustrations and fears.
How do you explain to a 4 year old the complexity of delayed speech and the fact I want to understand her but can't. She was frustrated today because a little girl at school called her a baby. I told her not to worry.
She said "moma me ad. Me ot una o to tool. A dirl at tool call me bitty baby" (momma me sad. Me not wanna go to school. A girl at school called me a bitty baby" I said what girl was it. Did you know her. She said "no a bue dre" (a Blue dress) I'm sure the girl called her that because she's unusually petite which is something I'm sure she'll be glad about later in life but trying to explain it now is near impossible.
Most days I spend listening intently and guessing, like a Neverending game of charades that losing could mean an hour of screaming, frustration and anger. I've seen toddler outbursts and these are different these are outbursts of a child not knowing why someone is ignoring them, even though that's not the case it's how it feels for her.
Remember when your baby was a newborn and either had colic and you felt helpless and defeated or maybe your friends baby had and you realized how hard it was. Having ANSD is like having a colicky preschooler. When a bad day happens and frustration comes intertwined with hearing loss. Nothing I say or do matters.
The thing with ANSD is some days I understand most everything out of her mouth and other days I understand nothing and I fight to get through and guess what she's saying. All anyone wants to be in life is heard. We spend most our lives looking for someone willing to listen to us. More than anything I want to be that for her now. One day I will be. That is my goal. I refuse to let her go through life without being heard. It doesn't matter what road we have to take. no matter how hard it is and how many days I feel like I failed. I want her to look back at childhood and remember, no matter how hard it got. No matter how frustrated her and I were that her and, I we never gave up on each other.
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