lila marie von-schnitzel. no that's not her real name, but that's what i call her.
in the morning, she yells from her room. mawm! mawwwwwwm?
i yell, liiiiiiiiiiii-laaaaaaa! i hear you, as i stumble out of bed.
she hippopotamus stomps all through the hallway yelling, EAT!
i have waited to hear the word mom for 4 years. i would hear other girls her age yelling for their mother in the hallway at church and i wanted it to be for me. grief is like that sometimes. it just kind of yells at you when you least expect it.
in the past, lila would say mama if i asked her to repeat it, but now it has meaning behind it. and that is key. actually that is huge. words have meaning behind them. they carry weight.
and as i think about this for her, it makes me want to cry. i love words. and isn't it fitting that my daughter would have very little? that God would show Himself to me through my daughter who can't communicate with me the way i want her too or the way others expect her to?
and so here we are, with our own language. half signs. half words. half understanding sometimes but fully understanding that it doesn't really matter how she speaks or how strange we look communicating together. we're talking to each other, however clumsy it appears.
sometimes i'm so excited that she's communicating, i find it difficult to punish her.
donnnn-tuh! (don't!) and she slaps my hand away as we cross the street. she has sunglasses on and her purse full of popsicle sticks, an old phone, and some pennies. she looks at me with sass-a-frassness. and i try not to laugh.
i sign and say, stop. the cars will hit you. and i clap my hands. she gets tickled about the clap and laughs at me. and then i laugh. lila marie, you are too much. and she grabs a cart and says, dis won. ook. dis won (this one, look, this one), pointing to the giant-cart that we don't need, but must ride in or tantrums abound. for a child with few recognizable words, she's quite bossy.
and i always think, wait. who's being taught the lesson here?
oh, that's right. me. i feel God whispering to me, this isn't even about you and lila. it's about me and you.
because i don't like clumsy and awkward. and i don't like "no label" for her special needs label. i'm sitting in the uncomfortable.
you know, where growth happens. in the mundane and awkward spaces of our lives.
regardless, she's changing and growing up... brimming with personality and independence. and without language it feels counterintuitive, like trying to eat a steak with chopsticks. but she's getting there.
her school and her teachers are an incredible blessing. i'm a little bit obsessed with her teachers and lila obviously is too. as seen when she dressed up like her speech therapist for halloween (and her therapist dressed up like lila! still can't get over the cuteness of the whole thing).
i sat in her class for the halloween party and tried my very hardest not to cry. one, because reality slaps me in the face... my child has great developmental needs. oh ya. this isn't normal.
and two, because the love and dedication oozing from the teachers is an incredible vision. you are a treasure and an answer to many prayers for this mother who felt alone in her struggle to get help for her daughter. so many people told me no. she'll catch up! she'll be fine.
and there i am yelling/begging/crying on the phone (my 80th phone call), she's not fine! she looks fine, but she's not fine. please help her.
and when i look at the people who finally believed me and who believe in sweet lila, i have an overwhelming sense of gratitude.
special needs teachers are a gift to this world. thank you to all of you who have dedicated your lives to this profession.
and thanks to all of you who continue praying for her. she is making great strides this year and we can't wait to see what the future holds for her. regardless of what label she gets (or doesn't get).