Thursday, April 10, 2014

today in the unknown

today we have a doctor's appointment today for lila.
with her special developmental specialist. we will sit in the office for 2 hours while he plays with her and asks her questions. he is so incredible with her.
but i've done this before. i've watched him take down his notes and think, what is he writing? i know she did that skill set all wrong. he asked her to draw mommy and she drew a spider. with a unibrow. i mean, that's more creative than just drawing a human.

it's not a question of if she's a normal kid, i know she's not a normal almost 6 year old. her brain works completely different. her speech is at a 2 year old's level and she's almost 6. i know that. i really know that in so many ways.

but when you hear a label, something different happens. that is to be carried around. it can be carried around as a burden or as a tool set, my brain knows that. but what will we choose to do? likely, we will swim in and out of both ways of thinking.

this morning, with wet hair and the kitchen house undone with mess, i wanted to process before i go into that office this afternoon and face the unknown. order in my thoughts, perhaps.

i could come out of there still walking in the unknown or i could walk out having a label. the label is bittersweet to me: it could be helpful as she moves into kindergarten for her teachers and for her therapists to better care for her. it could be hurtful if people see the label and not the lila.

oh, that they would see beyond the disability.

i am struck by one thought this morning: that even though all this feels so heavy and earth shattering in this moment, it's just a breath. this life. i can do all of this because my focus isn't on caring for lila but that God is caring for me during this very short life we have walking with sweet lila. i don't have to fear the diagnosis because God has already known all of this before he made the stars. he will show us the way like he always has.

and he is near. his nearness is better than a good diagnosis or avoiding hard things. both of which stare at me today asking me what i really believe. this is not a sad moment, it is a moment in which God's great goodness shines light into our mundane and proclaims that Jesus is better.

that is what i will speak today in the doctor's office when i ask my questions and when i thank the doctor for his time. when i gather up lila's drawings and when i tell lila that i just love her spiders. more spiders, i'll say. there aren't enough spiders on that paper. 

29 comments:

  1. Yes, Jami! Thank you for this! Your perspective challenges me today. To whoosh back out of my locked in gaze at the minutiae and look down through the lens of "God's great goodness shining light into the mundane." He is in everything, eh? And He has gone before everything, and He holds all things together. Amen, sister.

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    1. amen and amen. (and i still forget!)

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  2. God is really trying to get us to understand this, i believe. it is happening all around me. people preaching about it from the pulpit in Tennessee, God speaking it to my heart...to my sister's heart....to my friend's heart.....to your heart. God wants us to get this right now. thank you for your obedience to put it down in words. you may not even realize it is obedience, but God is using you to speak to us. God is using Lila to speak to us.

    she is already a vessel of Christ! speaking to those around her, to those far away through you! God is using her!...and her awesome little spiders. ;)

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  3. Thinking of ya'll today! We had a similar appointment last July and we came home with the same diagnosis we had before we got there (and waited a year for the appointment), feeling better and also still confused. We desperately just wanted a label, no matter what it was. I pray Lila and Rylie will continue to teach us more about Him everyday. Big hugs today, how blessed to call these little "not normal" wonderful silly kids ours.

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    1. so true. it is so comforting to know that i'm not in this alone. so glad to have met you!

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  4. "and he is near. his nearness is better than a good diagnosis or avoiding hard things. both of which stare at me today asking me what i really believe. this is not a sad moment, it is a moment in which God's great goodness shines light into our mundane and proclaims that Jesus is better"

    that really spoke to me today! thank you! hoping to have a similar appointment with my son in the future! those developmental drs sure are hard to get into. praying for you and for lila today.

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  5. love your blog. you are such a good mom!

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  6. I have Cerebral Palsy- and once when I was sick of people seeing my CP instead of me, I wrote this:

    When you look at me,
    Do you know who I am?
    Or do you simply see my disability?
    Why should how I appear
    define how you perceive me?
    It seems you do not realize
    the extent of my ability.
    Perhaps you simply do not know
    that overcoming challenges is my reality.
    I am tired of fighting
    against the mistaken perceptions of this society.
    I am tired of having to prove myself-
    I am NOT my disability.
    From now on I am letting go
    of what you think of me.
    I am going to live my life, and flourish
    In my own definition of who I can be.
    I am moving beyond limitations.
    You have caged me in incapability
    and low expectations-
    But I hold the key.
    And my own determination
    Shall set me free.

    You are an amazing mom. My mom fought every day for me, and I'll never stop being thankful for her. Thank you for how well you love Lila- it is beautiful and an example of Christ's love.

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    1. This is beautifully written. As the mom of two wonderful, differently abled kids, I admire your strength. Your mother did a wonderful job.

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  7. I posted earlier but my comment got eaten by the blogosphere or something. But I'm kind of glad it didn't go through because God reminded me of something and I wanted to share it with you. Last week when we were talking the specialist she told us something that I need to keep reminding myself. Timothy has aspergers but aspergers (or autism, or whatever other label a child gets) is just a name and every name has to bow at the foot of Jesus. Like you said God knew when he created Lila and he chose to make her that way. (just like he chose to make Timothy the way he is) No label good or bad or scary, really can change that. My favorite scripture passage is Jeremiah 29:11-14 (one verse isn't enough for me. ha) I won't post the whole thing here but read it. I think it will bless you. Love you

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  8. Lila is beautiful and she has the best Mom. I just want to give you all a HUG! God Bless you Jami and family!

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  9. Jami, this is so beautiful. I'm about to graduate from college with a degree in Speech Pathology and I want to help families like yours and precious kids like Lila. Reading your journey with her constantly reminds me why I'm passionate about this profession. I'm not a mom so it's easy to just think of being a speech therapist as a job but it's so much more. Thank you so much for your vulnerability online and your courage as you discover more and more about your daughter!

    Kailey

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    1. it is so much more. you guys are a gift to us!! truly. you must feel unappreciated lots, but you are such a treasure to families like ours.

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  10. "i don't have to fear the diagnosis because God has already known all of this before he made the stars. he will show us the way like he always has." You're going to have to stop making me ugly cry every time I come over here, okay? Tucking this one away to pull out over and over in the days and years to come. I have a tiny star tattooed on the top of my foot; more layers of meaning every day.

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    1. agh!! i love that. a tatoo to remind me of who god made us all to be. maybe i should look into it. :)

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  11. thank you for your honesty. it's liberating us.
    your sincere heart hanging onto Jesus is exactly it.

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    1. thank you for your sweet words. seriously. :)

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  12. reading this this morning was like a breath of fresh Spirit-filled air...THANK YOU...

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  13. I'm crying. My problems feel so much bigger than just the breath this is. Thanks for this. *exhale.*

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