Wednesday, November 14, 2012

her words.

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).






62 comments:

  1. Oh Jami,

    I can't even stand how much I love your lila. She is just the most delightful little thing.

    And I love you too, and I love that you write about this with so much boldness. And I love how Lila blesses me over and over again even without many words. And it's crazy to think that's how God is building His kingdom. Through a lot of us with all kinds of special needs.

    ReplyDelete
    Replies
    1. man i'm so glad that someone who sees lila every sunday and works with her in the classroom knows and loves her differences. you are a blessing.

      Delete
  2. posts like this are why i read your blog. she is precious, jami. so very precious.

    ReplyDelete
    Replies
    1. and this is why you need to live in my attic.

      Delete
  3. what a wonderful post.
    and it brings back some memories over
    the struggles i had with my little boy (and
    still kind of continue to have but it's mostly me).
    praying for your sweet girl and for you tonight.
    xoxo

    ReplyDelete
    Replies
    1. i know, they could care less, huh? it's just us mothers!

      Delete
  4. Sounds like you are doing well- I think it's really awesome you are putting forth such an effort to communicate with her. My sign language professor was just telling us today that her kids became verbal faster when they signed first so I thought it was super interesting that you do that with Lila a bit, obviously it works. I love your blog, it's always uplifting.

    ReplyDelete
    Replies
    1. i need to take a signing class! i want to learn more. it's so helpful for her.

      Delete
  5. I can imagine it would be difficult to not see your child progressing in the same ways as other children...but there is something else she has that they may not...her heart is so full and she finds more creative ways to get across her needs...that is SOOOO smart! I adore your writing and soul behind this and think you have a great blog!

    ReplyDelete
    Replies
    1. it's true! she's gifted in other areas and hey, she helps me see Jesus. that's a pretty amazing gift. :)

      Delete
  6. A label for Lila - Sweet Little Learning Girl. You have a great, adorable family. Thank you for sharing your story.

    ReplyDelete
  7. praise jesus.
    LOVE this post.
    elijah said mama on his own in january. at three. and now, nearly a year later? he is talking SO much. sometimes we can even understand.
    we too are ridiculous grateful for special needs teachers and therapists, GIFTS indeed. so yes. i am learning umpteen lessons, too. and i am mad weepy and thankful to read another mama's words that echo my own.

    so glad you shared sweet lila some more. love you. #presson xo

    ReplyDelete
    Replies
    1. first of all, you are so sweet and generous! i got your necklace and earrings in the mail. what a treasure!

      and second, yes...i pray that she makes leaps and bounds improvements this coming year like your sweet boy. :)

      Delete
  8. Omg, I am crying. Happy for you. sending this straight away to my sped friends! Go Lila!

    ReplyDelete
  9. Well shoot. I'm reading and looking at these pictures along side your incredible playlist and I feel like crying. Quit doing that to me. This post is a blessing this morning because one of my best friends has a 4 year old daughter with undiagnosed developmental disabilities and hasn't yet heard the words "mama". In fact she's never even received a hug from her daughter with true meaning behind it. I grieve for her and realize that I take those very things for granted far too often. I am passing along this post to her today. ~Bri~

    ReplyDelete
    Replies
    1. the music kinda gets you, huh. LOL. i will never turn it off!
      thanks for your sweet words. :)

      Delete
  10. That last picture is just beautiful, made me cry

    ReplyDelete
    Replies
    1. i cry looking at them too.glad i'm not alone. :)

      Delete
  11. Her and her ST dressing up as on another just might be the cutest thing I've ever heard! What's blessing they are to her!

    ReplyDelete
  12. i will never tire of how God uses the difficult to bring glory to Him and draw us to closer dependence on Him. never.
    you are such a blessing.

    ReplyDelete
    Replies
    1. you are my biggest encourager. you win.

      Delete
  13. This is so touching. Thinking of you and your sweet girl. God Bless you both.

    ReplyDelete
  14. I am fully convinced there is no such thing as a "normal" person. We all have special needs, they might just be more hidden. You are truly showing the love of Christ to her by caring for her despite her inability to communicate like people typically do. This is how God is constantly treating us--with patience and love in spite of our inability to do anything for him.

    ReplyDelete
    Replies
    1. you're right. we're all weirdos. and yes, sanctification station. thanks for your sweet words.

      Delete
  15. She's the sweetest! I get you about not wanting to punish them. I'm the same way with Timothy. Somehow his speech is so much clearer when he is being defiant. I'm the bad parent trying not to let him see my smirk and giggle when he's being naughty.

    ReplyDelete
    Replies
    1. seriously, she can make those words come out when she's angry!

      Delete
  16. Jamie,
    Your words always strike a chord in my heart. Your words are beautiful. You are beautiful and that sweet Lila is BEAUTIFUL!

    ReplyDelete
  17. Jami this post was so great! Lyla is such a beauty and I'm so glad that she's finally getting the correct education that fits her needs! Praying for your family...for healing...and for your heart sweet Mama!:)

    ReplyDelete
  18. Jami this post was so great! Lyla is such a beauty and I'm so glad that she's finally getting the correct education that fits her needs! Praying for your family...for healing...and for your heart sweet Mama!:)

    ReplyDelete
  19. I couldn't agree more. My sister-in-law teaches special needs. Now, as I hear more about her job and today having a special needs child of my own, I realize how much their job has gone unnoticed by me in the past. Now, I really see it, and I see how truly gifted they are to do what they do. Invaluable in my book. She has helped me so much with my Lil'. So glad to hear of Lila's improvements. I can absolutely relate to your own little language as well. It really puts me out there in public, where typically I would prefer to blend into the crowd. But, I have never been more thankful for a selfish discomfort in my life because it has revealed those ugly parts of my heart I would so desperately try to keep hidden. Keep on playin' player. Thanks for the post. :)

    ReplyDelete
    Replies
    1. it's true...sanctification station!

      Delete
  20. she's such a beautiful little girl. praise God that His grace can be seen through your little one. He is working, relentlessly working.

    ReplyDelete
    Replies
    1. i read those last words over and over. relentlessly working.
      love those words.

      Delete
  21. Thanks you for sharing this part of your story with us. I see God in your response to the challenges you face in your mothering and it is both an encouragement and a "dude step up your spiritual game" to me in mine. So yep. I appreciate learning from your words, and from the smiles and sassafras of your little lady. God bless yall real good.

    ReplyDelete
  22. From a mama w a little guy with autism - believe me, she is just beginning to amaze you!!!! she will continue to knock your socks off, leave you breathless & hammer more nails in strengthening your board of faith than few others can do in this world!!!

    keep on lovin'.

    ReplyDelete
  23. as a mama to a bright beautiful frustrating 3 yr old bluebird with sensory processing disorder and "maybe something else we are just going to observe"that appears to be fine but isnt quite... i appreciate reading your heart and rejoice with you over triumphs! also incredibly thankful for teachers that just love.
    will be praying for you and lila!

    ReplyDelete
  24. Oh Jami.. you are such a great Mom, Lila is so blessed to have you. God did a great job pairing you two! thanks for inspiring us all!

    ReplyDelete
  25. I love this post. I love the love you have for your sweet girl and for our Father. Bless her. Bless you and Bless those sweet teachers. I'm so happy that you guys have found a place that brings such happiness to your family.

    ReplyDelete
  26. This is beautiful. Thank you for sharing your words and Lila's with us. What a reminder that He is good and kind and wise. Praying you and your girl have sweet & even sassy exhanges in the days to come. xo

    ReplyDelete
    Replies
    1. i know, i fast forward to her at 16. hilarious!

      Delete
  27. It is so good to hear she is doing well. You are right, however clumsy it appears, you are communicating and communicating with ones mother is so important in this life. I wish you all the best.

    ReplyDelete
  28. I cried through this whole post! I love your heart.

    ReplyDelete
  29. a prayer goes out to you and your sweet family.

    ReplyDelete
  30. Yes, God bless our kids' special teachers. They go above and beyond and keep on even when they hit the same developmental/emotional wall with our little buggers again and again. And God bless you, Jami, for being open and honest on this journey, and for not giving up the fight for what is best for little Lila Marie Von-Schnitzel, even when the drs told you to. You rock, a thousandy-times-ten. I'm praying for her. We finally got a label for our "unknown" kid this year: autism. He's nine. There were a lot of no label years. His older brother has autism and bipolar disorder and wears his ASD very differently so we didn't see that one coming. But God had provided Isaac with almost all the therapies he needed, even without the label.

    ReplyDelete
    Replies
    1. it's true. why do i keep wanting a label?? it's so weird.

      Delete
    2. It's natural, human momness! If we have a name then ok, we can research it, and we can shoot lasers at it and gosh darn it, we can fix it. But you're right. No label=total reliance on Him. <3

      Delete
  31. I think you could have hiked up her scrubs at least another 2 inches!! She is so sweet!

    ReplyDelete
  32. these posts sit with me, resonate with me so much. steak with chopsticks. genius words. and i love special needs teachers, too.

    ReplyDelete
  33. Your daughter is inspiring. Look at that face! And your love for her overwhelms me--God is good, Jami.

    ReplyDelete
    Replies
    1. he is good. thanks for the reminder. :) you're always such a great encouragement to me.

      Delete
  34. Beautiful post. Lila is gorgeous and I have no doubt she will do great things in her life. :-) Praying for you, I know patience can be hard when there is so much unknown and you are looking for answers. Trust in God's timing and know that you are the best mother for Lila, He hand picked you for her!

    ReplyDelete
  35. What an amazing school she seems to be at! She's so blessed to have parents willing to address things head on right away. I bet Lila will continue to blow you away. I will be praying for your family.

    ReplyDelete
  36. I can't really get over the sweetness of that face. What a gift, that you're sharing her progress with us.

    ReplyDelete
  37. Hi Jami, first visit to your blog and got reading about Lila and the previous post you did for lee jeans.. So they are different but had a story I wanted to encourage you with- My little sister Tanha was born with a rare sydrome called Perabon (I don't even know the spelling- not even google does) , she was born with a cleft pallet but was lucky enough to be ok otherwise(this syndrom usually results in missing limbs), anyway, straight to the point- she was the last of my parents 4 children and it was a big scare, we didnt know she had this condition for a while and was blue and not breathing great. Then my mom got her on oxygen and many operations, tears, wierd feeding methods, tongue ties and speech therapy later and Tanz is one of the most loved 13 year olds you could ever meet. We have a big age gap but flip I love her, and even though they could never totally fix her mouth and her speech isnt perfect she is super confident and funky and adventurous. Infact she is the most fearless of my younger siblings. I know this is very different to what Lila might be going through, but I just wanted to encourage you that different sometimes means stronger, bolder..In our church of 1000 people most people know my sister, people just love her:) No doubt in my mind, Lila will only be stronger for a slightly harder start:)

    ReplyDelete
  38. Stop it. She dressed as her speech therapist and her speech therapist dressed as her??! Can't stand it. So cute.

    ReplyDelete
  39. I love this post! I think about you and sweet Lila all the time. She is truly a gift from God. This reminds me how important my job really is to all of these children and their parents!

    ReplyDelete
  40. Reading about the communication problems with Lila reminded me of similar issue a friend of mine had with her daughter. They tested her hearing and it came back perfectly fine. Eventually they tested her eyes and learned that she needed glasses. After a few months of wearing glasses her speech and communication skills improved greatly. I felt I should share this with you just in case it was something that had been overlooked for you as well.

    ReplyDelete

leave a message after the beep.