Tuesday, July 24, 2012

i had plans.

i have found many other activities to keep me from writing this out.

i have tortured myself by making apricot jam. i have meticulously stenciled a moroccan print on my dining room wall(the before and after coming soon). i have written about other things on this blog. i have been a little bit of a zombie, lost in my thoughts.

it can be painful to face reality when it is not how you thought it should go. in fact, i planned it to go much differently. you know, when you map out your life and then ask God to bless your plans? like humans do?

i sat in the waiting room, playing with lila nervously as we waited to see the new doctor.

Ook. ook. see! lila turned my face to a bin of oversized blocks. her way of telling me to look at something.
nato sat and built blocks with her. he kept building them even when lila moved onto a different toy. he was nervous.

i was too. kind of. but i was ready. i needed to hear something. tell me anything. i'm tired of doing this by myself. just tell me what's wrong, and we'll move forward.

when the sweet doctor called us into the room, he said, i'm going to test lila and talk with you guys. back and forth. just know that i'm always testing her, so don't prompt her.

no problem.

and he would ask her to do something and she would look at me and i would point or talk to her in a language she understood. our language.

remember, you can't interject. i have duct tape in the drawer if you need it. the doctor had a dry sense of humor and i liked him immediately.

oh gosh. i'm sorry. i shrunk down in my chair. how is she going to get through this without me?

i didn't realize that i helped her make sense of the world so much.

and it was painful to watch her struggle with colors. at 3 and 1/2 years old. simple color recognition. or directions. or most things that he asked her to do, she could not fully. i wanted to jump up and say, stop! that's not how she does it. she can only understand it this way. 

but i knew this needed to happen. isn't this what i've wanted for 2 years now? someone to tell me something isn't right?

by the end of the evaluation, he let lila play and told us that there were some options here. perhaps she still couldn't hear. that would be unlikely after tubes and a passed hearing test in at least one ear.

because if hearing was the problem and it was fixed she would have caught up by now.

no one has told us that yet. i knew it in my gut but no one has actually said the words.

or she could have a severe learning disability. but she doesn't exactly fit the bill of any particular disorder. definitely not autism.

or, he said with a sigh. we need to look at her chromosomes. this could be DNA related. excuse me? i thought she was simply delayed.

an extensive blood test will tell us this. as he was saying things like fragile X, chromosome disorder, and other DNA terms, i prayed that i would just keep me together and hear the doctor's prognosis. i wanted to say, your words are too heavy for my ears but they just kept falling out of his mouth.

and so i kept listening.

you're not pregnant are you?


no.

well, let's get bloodtests back before you guys think about more kids. i'm not saying to stop, i'm saying you have things to think about.

no more biological kids. what? i'm supposed to get to decide that. on my own terms. when i want to decide that. i have plans, doctor.

and we'll need to think about putting lila in a better school district. you can't stay in the one you're in if you want the best care for lila.

moving? no. we're in our forever house. we love this neighborhood. we love our church and our son's school and we have plans here.

and so we walked out of the doctors appointment with blank stares.
and with some direction.
but not the direction i had planned to walk in.

are you ok with me going back to work, honey?
ya. i mean, there's nothing we can do right now.

and i shut the car door and turned up the music and lila sang.
i sang too. and i cried.

all of my plans were failing me. they were crashing down and crushing me.

and the next day, i just cried all day. just all day long. off and on randomly. laying hopes and dreams on an alter one minute, choosing to trust that God is bigger than what feels immensely painful and heavy. and the other minute thinking too far ahead. what will all of this look like when she's a grown adult?

and as i prayed it out, a question popped up in my head.

what are you grieving?

i had plans for her. i wanted her to be something.

i have plans for her. why does your life glorify me more than her life? i knit lila together in your womb just so. just exactly so.

they were such gentle words and yet they pierced right through me.  my ugly heart gushed open. i have such a narrow perspective of God and what he can and can't do.

my sin overwhelms me.

i love to think i can control things and that i don't need a savior. that's what i'm saying when i don't trust in the Lord. i can do this better than you, God. you who made the universe and everything in it.
yet here i am, again, learning i can not control anything.

i am learning this week, in a tangible way, that God uses all of life to glorify himself. even in a broken world and even in suffering. and that i am not in control of what this looks like. i am not a savior. in fact, i desperately need a savior.

i am learning that we are just tiny stories in a larger story of redemption and that this life is but a breath. but a tiny breath. and yet i look at my daughter with such small eyes.

lord, have mercy on me. give me new eyes, for my daughter and for this world that is passing away quickly. i have such a small perspective of your goodness. help me to think outside what my eyes can see and what my heart feels sometimes. lila has always been yours. i am her mother for a small time. and you have made her perfectly with plans and a purpose. i pray for healing, but i also pray your will be done and not mine. because you are Good and Just and i can trust in You.


(i am not ashamed to write out my struggles with trusting in the Lord and my faith. i am not ashamed that lila will read this one day. i will not live privately in hard moments when i need others to stand with me in this and pray for us. if that means working this out in front of my inter web friends, then so be it. i know writing openly like this isn't for everyone, but it's right for our family.)


96 comments:

  1. Jami, I love your heart. And your honesty about the hard stuff. And your ability to keep the humor in the rough times. Your sweet Lila is a perfect creation of our Lord and He has amazing plans for her. Praying for you guys! - Holly

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  2. i just want you to know how proud i am of you. i cry everytime i read your blog. be it from laughter or not. i am proud of you for writing this. for processing this aloud. it is a blessing to others. you are allowing your life to be more than just your life... and that is such a beautiful thing. thank you. i will be praying for you and nato & lila. i will be praying for healing, but also for your heart to be able to grasp how big our God is. and how precious her life is. at the very same time, i am sorry. not because it's bad, but because it really is hard when your plans don't turn out the way you... planned. xo

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  3. Jami ~
    I am praying for your baby girl and for your family!
    Sometimes when we are taken in to situations that seem so difficult and not controllable by us that is when God does a miracle ~ Then we can know without a doubt that it was only because of Him! I love that promise!

    Ephesians 3:20
    20 Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.

    Hugs and prayers,
    Lori

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  4. I am so blessed to have read this post today. You are a blessing. Thank you for sharing so openly you real and true struggles. Our journey are never what we want or thinkwe would want.... But God uses our lives to bring more people to him. If we had perfect. And wonderful lives ( ya know the world's perfect) well who would ever have a need for a Savior. Praying for you and your family as you walk thru these hard times.

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  5. Oh Jami...have you been reading my diary again? You really should stop that.

    But really...this speaks right to where I am. My husband and I just experienced a loss and I've been reeling ever since. God...I had plans to be a mom. You put that in me, right?!

    I stop trusting so easy. I lose faith too quickly.

    Thanks for this reminder to set myself aside today...and let God be glorified even through that pains I don't understand.

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  6. "I knit her just exactly so."
    Wow, I'm crying just reading those words. He did, didn't he? It's so easy to forget somehow. I'll be praying for Lila and all of you. He is more than able to see you through this- now and in the future. I'm so glad you're sharing this. I know it can't always be easy, but I love how honest you are about your own failings (not trusting, being in control, etc).. It really makes me think of my own issues with not trusting God fully, or only when need him.

    Hugs! (is that dumb? That's dumb. Forget the hug part)

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  7. God Bless you and your family. I am in awe of your ability to express yourself: your faith, your struggles, your love for God, your husband, your children. I read a lot of blogs, Jami, but only yours can make me laugh and cry and feel like I've known you my whole life in the space of 3 minutes. I'm praying for you. And thank you for being....well....you. :) God knew what he was doing with you as much as he knows what he's doing with Lila. Remember that.

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  9. Thanks for writing this out and sharing it here. You have a gift with words and, I believe, a real ministry here with how you share them.

    I have a cousin who has faced enormous struggles in becoming a mom, including a stillborn daughter and preemie twins with cerebral palsy and autism. She's one of the most remarkable people I've ever met. Anyway, several years ago she shared this story with me and even though it's written specifically to parents of children with disabilities, I think of it often when my plans don't seem to match up with God's.

    http://www.our-kids.org/Archives/Holland.html

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  10. My word. I just cried and cried. Bless you sweet Jami. Bless that sweet Lila! I'm praying for you friend! The Lord DID knit her perfectly in your womb and he does have mighty plans for her! It may not be what we envisioned, but He is so much better than us. Your honesty and raw emotion will be a blessing to so many. Praying for you all as you continue on this journey. Much love.

    Annie

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  11. Praying for answers for you sweet mama. Life is tough. I feel like right when I'm sure I've got it all down, God sheds light on another area I need grace.

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  12. Jami, I love you for having such a real and honest faith. And the ability to convey it so eloquently.
    Good luck as you continue to gather & assess the information about Lila. You are so brave. So brave. And not alone!

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  13. New reader here!

    Just wanted to say... You are in my prayers! It can be so, so difficult to give EVERYTHING to God... But I've always held onto Jeremiah 29:11. He has such an incredible plan...

    Hang in there, momma! I love this post and how absolutely OPEN you are!

    Xoxoxoxo!

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  14. Jami, thank you for this beautiful post. I was in tears not even half way through. Thank you for being an inspiration, I hope you can feel comfort as the days go by. I'm so sorry that you have this trial, but I now when you trust in the Lord you will come out on top. Best of luck to your family, they are in my prayers.

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  15. praying for you and your sweet family. thank you for being vulnerable. and praise God that His ways are higher than ours, His thoughts are higher than ours, that He does have a plan for each of us (isa. 55:8-9, 11) - even when we want to control it!

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  16. Praying for you all, Jami. Thank you for writing this. I love your perspective and willingness to learn see your precious little girl the way He sees her... she is fearfully and wonderfully made!

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  17. Thank you for writing these words. They are exactly what I needed this morning. I will be praying for your family. Your little girl is so blessed to have a mama who will fight for her and pray for her and trust God for her future.

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  18. God's got this. In the meantime, prayers of comfort and peace surpassing understanding to you. :)

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  19. i love you even more than before for writing this (not trying to be creepy). i will pray for you. just so you know, God is not following "my plans" right now (health wise). Your post really reminded me that I'm trying to be my own Savior. Thank you.

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  20. praying for you and your family! I love that you are so open and honest..I know when I have struggled under a very heavy burden, I too find comfort in talking and expressing my heart out loud. I ran across a post this morning I thought you would like. http://topofthepagewithleslie.blogspot.com/2012/07/on-discerning-gods-will.html

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  21. *giant hug*

    Gods plan is ALWAYS the best, and the human mind is often incapable of completely understanding it. Your Lila is beautiful, and she will have a beautiful life, Inshallah. Lots of love, prayers and positive energy.

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  22. I have walked in your shoes with all the questions and lapses of faith, temporary as they were. My beautiful daughter is now 42 and has taught me and so many so much in love, faith and beauty. God IS Just. Hang in there and give it over to Him. He is molding a work of beauty so great it will continually awe you. Great joy will come to your life through your daughter. Blessings upon you all.

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  23. Your honesty is so wonderful and lovely and reminds me that I need to trust God more and I need to humble my own selfish heart to his plans.
    Lifting up prayers for your family. Because he is Good and Just and we can trust Him to do marvelous things.

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  24. You have my prayers, both for your faith in God. May it be BIG and may it be UNWAVERING. and praying for that cutie, Lila. She is precious & perfect & is just as God intended her. Just know you are loved by so many and have our support. -Ashley O

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  25. This isn't a post about Lila as much as its a post about surrender. Lila and the details are the circumstances through which God is revealing himself to you; it's your story, your version of being transformed. And one thing I've thought of a lot lately is that we don't get to choose our stories. He gives us our cup to drink, and through it prunes us and shows us a greater depth of His love. Each of us with different stories, each of us learning the same things, that He is good. And He is enough. Thank you for such an honest look at how hard it is to say not my will, Lord, but yours. My heart nods in agreement.

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  26. Good for you Jami for getting out all of your honest feelings. You're human just like the rest of us. Much love! It's hard when things don't turn out the way we thought and even more difficult to know that we never really had any control either.

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  27. I love your honesty. You writing it out for all of us to read makes me reflect on how I might be doing similar things. I appreciate you and your heart to share such intimate things with strangers :) I'll be praying for your healing and for God's will to be done in your family. You are right, our God is a GOOD God, who knows exactly what we need. Sometimes that is painful to realize that our will is not God's will, even when you have the best of intentions. God is always GOOD.

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  28. My family and I are praying for you and your family, Jami. I can think of 5 million Bible verses of encouragement for you in a time like this, but I keep coming back to the one in Psalm about God knowing us, even in our mother's womb, just like you already shared. Instead of me offering you some type of hope, your post has offered ME hope, and pointed me back to Jesus-in my small, stressful life situations I am facing.
    :) I think God wants me to hear from Him today, and I just wanted to thank you for being that instrument. I love that HE loves us that richly and deeply.
    take hope in that. He loves YOU that richly and deeply.
    Ephesians 3:18-19 (NLT)
    nd may you have the power to understand, as all God's people should, how wide, how long, how high, and how deep HISlove is.
    May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God.
    <3

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  29. I'm a new follower of your blog but wanted to tell you how much I appreciate your candidness - in your family matters, in your struggles with trusting our Savior, all of it. I see myself in your writings a lot and can relate with a lot of what you say. Thank you for sharing - my prayers are with you and your family!

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  30. Oh Jami. This post opened old wounds for me. In a good way.

    There is something about a delayed diagnosis that stings. The unknown. The guilt. "Our plan" we thought had culminated itself when we met our sweet, perfect baby on the day she was born, before we knew.

    But you know? She is still perfect. And sweet. It's just a harder road. But we can do hard things. We can. You can.

    Praying for you as you work this out. Online. And otherwise. Proud of you for sharing. She will want to read this. She will be happy to read this. She will NEED to read this. It screams of your reliance on Christ.

    Thank you for sharing with us.

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  31. Your transparency is phenomenal. Thank you for allowing us to go on this journey with your family! We're all on this crazy ride together - praying for all of you...

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  32. your reflections are beautiful and encouraging. praying for you always!

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  33. My prayers are with you in your struggle Jami! I want to sincerely thank you for writing so openly. I don't comment often but really admire this about you.

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  34. I'm crying with you. I hope you get the answers you need in order to help your beautiful girl in the best way possible soon. God does have plans for our lives but I don't think it's really a sin to struggle when those plans seem kind of crappy to our eyes. I will be praying for you and your sweet baby.

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  35. I really, really appreciated this post in light of some areas God is exposing in my own life. There were a few things you wrote that really hit home, and I feel God is using those words to reach my heart!

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  36. I only "know you" thru your blog, but I am sending love to you so hard my heart hurts. Hang in there.

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  37. So very blessed by your decision to share the workings of the Lord in your heart and in your family. Praying for you, your precious family and your Perfectly, intentionally, put together little girl.

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  38. i am so sorry you are having to go through this, but i do know you of anyone can handle this. you are just what lila needs because god made you her mother. i will be praying for you and your sweet girl. p.s. those pics of her are amazing.

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  39. thank you for sharing, so wildly and openly. praying for the many dicisions (and answers) ahead of you.

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  40. Jami, I'm sorry your family is going through this rough time. Keep trusting, His plan is better than anything you could ever imagine. Praying for you guys.

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  41. praying for you sweet Jami. i love your heart. so so much. you are the perfect mamma for sweet lila. she was knit. YOU were knit. your walk with HIM is inspiring!! loveyou!

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  42. oh girl...
    my heart hurts for you.
    and for all of us...
    for i think most of us moms would have reacted the exact same way.
    we are sinful.
    we do have such a tiny perspective.
    oh i will keep you in my prayers.
    and somehow, this is what makes the interwebs so awesome...
    we can join alongside you in these times...
    learning along with you.
    isn't that what these struggles are for?
    obvs they are WAY harder on you right now...
    but the beauty of it is that we can all see God and how His ways are supreme.
    He has plans...
    for lila...
    for you...
    for all of us.
    bless you... bless you...
    keep sharing!
    God is doing good stuff through you!
    xo

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  43. I will pray with you. She is precious and so are you. What a great perspective!

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  44. Jami, this is why I read your blog. Your real life struggles and the way you share your heart and walk with the Lord challenges me. Sure I love your cute crafts and other fun tips, but I can find that on other blogs. Thanks for writing the way you do. Praying for your heart.

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  45. it is always such a blessing to read your blog. Whether you are telling a hilarious story or you are laying your heart out there. Our stories, are really the Lord's stories. Psalm 119 says, "your testimonies are my delight,"
    In God's eye, your story is perfect. It is in HIS hands.
    It's hard sometimes. Like you said, we have our own plans for our lives. How often does God have to remind us that we are His, that He already has our lives mapped out. Perfectly. Wow.
    I am praying for you and your family, especially sweet Lila.
    God is so good. I am excited to hear what He has in store for you, if there is a move and some changes in store.
    I'm at my desk at work and just today hung a cute sign that will give me a constant, great reminder.
    "Trust in the Lord with ALL your heart and lean not on your own understanding;" Proverbs 3:5

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  46. Thank you for sharing your heart... beautiful.

    Have you read the poem "Welcome to Holland"? http://www.our-kids.org/Archives/Holland.html

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  47. Jami, I swear you must be one of the strongest women I've ever known, and I don't even really 'know' you. Lila is so lucky to have you as her mother, and in the end I know you will trust in the Lord and it all will work out. Not necessarily as you have planned, but it will work out. Sending many many hugs your way.

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  48. Thanks for your honesty in sharing this! I just started following your blog a few months back. (No matter how I say that I still sound like a stalker!) We have a Lila too! Hugs! :)

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  49. It's amazing how God has used you to help me work on my own heart and my issues with surrendering everything to Him. Unreal.

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  50. So sorry to hear of your struggles but so encouraged to read your heart. What a blessing that Lilah has you for a mother. Really.

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  51. My daughter Brittany connected me to your blog when I started doing one of my own. I have been checking back in on yours and love your writing style. This was such an open honest post. Thank you so much for sharing. Can't wait to see what God has in store for your daughter.

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  52. When Lila reads this someday she will know that her mother loved her, wanted the best for her, and put her trust in God to take care of her children. That is an incredible legacy to leave and not one to be ashamed of. Praying you are infused with God's peace and perspective in the days ahead. *hugs*

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  53. isn't it amazing how the LORDs spoken word hits the heart like a ton of bricks? lila is a rockstar now, and in her own world. so while it is sad that she isn't making milestones like other children; she is not sad. as far as she is concerned nothing is wrong.

    my son, dallas, has duane's sydrome....and in his own world he is SUPERMAN. LORD willing, i will always allow him to believe that.

    kids that are outside the norm rock and as long as they are loved and put in the right, stimulating environment can grow up to love jesus just as much, if not more, than the kid next door....after all, that's really all that matters in the life...

    peace.

    the york family

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  54. Prayer for you to find endurance, faith, and greater trust in God now more than ever He will stretch you when you don't want to move another inch. We are on the autism path and an unknown path for our youngest. Hang in there and reach out for help. Hugs to you.

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  55. i read this post and you are such an amazing mom. and i immediately thought "where is that poem about holland" and even though i saw 2 other people posted it i will 3rd their recommendation because I read this whenever life doesn't go as *I* had planned. http://www.poemhunter.com/poem/welcome-to-holland/

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  56. Lila was perfect before you knew about her issues and she still is and you know this. The plans can still be the same however the journey to get there may have changed, a few more hills and bumps in the road but a powerful journey all the same.

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  57. Jami
    Your words, as always, pierce my heart, come when needed and show me what faith and love look like. Thank you. I am a special education teacher and my students are 18-22. When I meet them, sometimes I forget that they were once small and their parents were once afraid and unsure. Your words today remind me that each one of them are made in God's perfect image and they are there for me, to change my heart and show me what acceptance and love are all about. Lila is a unique and beautiful child with a world of possibilities in front of her...God knew EXACTLY what He was doing when He gave her to you. She will show you how to learn, she will change who you thought you were, because that is God's plan. Prayers to you during this time of uncertainty.
    Sarah

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  58. Oh, Jami. Oh, sweet sister. Once again, I'm right there with you. This last week we recieved the news that one boy has severe ADHD and the other has autism spectrum disorder, all while transitioning our oldest son from partial hospitalization into the day program at an autism school. And I'm reeling and struggling to let go and find hope in this all. But you are right. He did knit them together just so. They are the same amazing kids they were before we heard diagnosis, ominous terms or prognosis. The words haven't changed them.
    I will pray for our hearts. And I will pray for healing for both your sweet girl and my dear boys. The bigger the pile of poo, the more fruit you can grow. ( I just coined that but feel free to use it) ; )

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  59. I am praying for you and your family but mostly Lila. May she one day know the great love God has for her that He put her in such a wonderful, loving, supportive family. God is good. May He continue to bless your family.

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  60. This wrecked my heart. I'll pray, for her, but for you, too. He is already using her for greater things than you could plan for. And it's so cool how He is using YOU, too.
    p.s. I am so in love with your play list right now. Ohhmeee this woman's work.

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  61. Love this. Beautiful writing, friend, and beautiful heart. Thanks for letting us learn with and through you. And those pictures of Lila are precious. You captured her so well. I hope Kate and Lila grow up to be great friends. Praying for your little family.

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  62. I have read your blog for a long time and never commented until today. I know I know, shame on me. I started because my friend Kristin posted about her friend Jami having a best friend who was trying to adopt a little girl from Ethiopia - so I fell in love with both your blog and Emily's in one fell swoop. This post hit me hard. I hope you know that despite being so very human, you have spread God's message. The line about Him knitting her perfectly in your womb is powerful stuff. For some reason it made me think of the song by Martina McBride - In my daughters eyes. I will be praying for all of you as your journey continues and you learn more of how to help little miss gorgeous.

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  63. Psalm 115:3

    New Living Translation (NLT)

    3 Our God is in the heavens,
    and he does as he wishes

    He has a plan. And he loves you.

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  64. I cried for you and your family as I read this. Not out of saddness but because the love is so evident. Prayers for you all. I've read your blog for awhile and never commented before. I admire your strength. You are the exact mother she needs.

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  65. What a beautiful post. Lila is perfectly made, just the way God intended her to be. He is going to use her for big things. He doesn't make mistakes! Doctors say what they must, don't let the insensitive words keep you from walking the path God puts you on. More kids or not, all is in His hands. Take courage, because nothing can steal us from His love!

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  66. Thank you for sharing. As someone who worked in Special Education for over 10 years with children with all types of disabilities, I am happy to see parents who love their child for who they are. Far too often I saw many parents try to mold their child to fit in and be "normal", only resulting in an unhappy child and unhappy parent. God made Lila the way she is for a reason, and as she grows and as you share her story, it will not only open eyes, but hearts as well.

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  67. jami, you've soothed my own soul by sharing your heart here. so grateful for your heart for HIM and for your precious lila. she is a special gift. praying that as you learn about all of her uniqueness, that you grow deep in the strength of the father and lean hard into his ready arms.

    i love you, friend. xo

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  68. Praying for you friend. Can't imagine what that appointment was like for you. Thank you for sharing your heart.

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  69. I think it is ok to grieve our dreams, ones we had for ourselves, or for our children. Although, dwelling and self pity are where our sin nature comes in, and i don't think you are doing that at all, you are seeing the big picture already, that God has a perfect plan, although most of the time it is never what we pictured. You are an amazing mom jami, you are doing a great job! I can't wait to see how God uses Lila

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  70. Bless you, Jami. Can't help but think that God is already using your sweet girl to minister to others...and I can only imagine how her precious life and story might draw others closer to the Father and help them understand His unfailing love and most perfect plan.

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  71. Jami, I cant imagine all of that coming down on you in one visit.
    Beautiful Lila is just the way God created her to be...perfect in His sight. Love on her, and keep doing what you're doing-loving her as "your girl." I'm praying for you all in this time of uncertainty and fear. Love to you!

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  72. Jami Nato......you just make my heart really happy. Everything about you.

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  73. Jami, I've stalked your blog for a while now. It's about time you know that you bless my heart with every post whether I'm laughing or crying. You have a way of letting people see into your heart that is so refreshing! You challenge me to be a better mom, wife and follower of Christ. I will be praying for you as you tread these difficult and unknown waters, knowing that we have hope in Him who can see the bigger picture of it all. Thank you for sharing your heart!

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  74. Jami continue to lean on Him. He absolutely knit Lila perfectly together. I pray strength and understanding of His awesome plans for you and your family. Thanks for sharing your heart.

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  75. Jami-

    Read your blog regularly and I'm always so impressed at your ability to put into words whats in your heart. After finding out at 16 weeks that my daughter, now 18 months, was missing her left forearm and hand I had the same thoughts, I had a plan for her, she was going to be perfect. Someone wrote this to me and it was good perspective...It's like you think you're going on vacation to Hawaii and you get off the plane in Ireland. It's not Hawaii, not what you expected, but it's still beautiful. God has a plan for your daughter and mine. Not just for them but to teach us something through them. You guys will be in my prayers.

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  76. The Lord doesn't waste parents. Lila has a purpose and He has plans for you as well. You have been chosen to be her mom. Bless you, Lila and your family.

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  77. What a perfect mother you are for Lila.

    And what a worshipful heart you have...even in the midst of some of the hardest trials I can imagine facing as a momma.

    We all love you!

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  78. Wow, Jami. What a beautiful post and what a beautiful heart you have. You've articulated perfectly what's been happening in my heart lately..."God uses all of life to glorify himself. even in a broken world and even in suffering. and that i am not in control of what this looks like." Working on making babies for the past 2 years has been the most painful thing I've been through but I so believe that God is good and that he's glorified through all of it.

    Thanks for writing this. It really spoke to me.

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  79. Thank you so much for sharing your heart and your struggles, Jami.

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  80. Brings tears to my eyes. I shared this post w/two friends that I know can relate. I know your post will bless them too. Sending prayers your way.

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  81. I've probably said this before, but one of the reasons I love your blog is that you do share your struggles. The fact that you don't live privately in hard moments is of immense comfort to me as I struggle with my own hard moments and wonder, sometimes, if the people I see at church and whose blogs I read are struggling at all, or if it's just me that God has chosen to send the really crappy things to. I'm not thankful that other people get crappy circumstances--but I'm thankful when people share theirs, and their feelings about them, so that I know I'm not alone in struggling with my lot.
    For the past few years, God's plans have seemed almost always very different from what I planned and prayed for. It hurts. I know the dark fears we carry for our children and their futures, and how they can overwhelm us. I've been in doctor's offices trying to see my child through their eyes--and I know that hurts, too.
    I'm so sorry for your pain and your daughter's struggles, and I hope and pray that you will find amazing help and answers for her. I am so sorry for the struggle--but so grateful that you share it. Thank you.

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  82. Your little Lila is so sweet! I keep thinking about you all and praying for you. It is really hard when our plans don't line up with the plans the Lord has for us. I believe and trust that the Lord has plans for Lila and her life! Hang in there and believe! Love you guys!

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  83. I love hearing your heart. Your real (not afraid to express it) heart. Refreshing. Thinking of you and the unknowns ahead. Strength!!

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  84. Beautiful. I definitely needed to read this today. I love your heart, your honesty, and your brokenness. Praying for your sweet family. Xoxo

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  85. Beautiful. I definitely needed to read this today. I love your heart, your honesty, and your brokenness. Praying for your sweet family. Xoxo

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  86. Thank you for sharing so openly about your life. It is amazing given the nature of many to pretend to have it all put together. I only know you through reading your posts, but as you have written God has created your little darling and loves her far greater than anyone can even imagine. I will pray for strength for your family and that our Creator will show you his love and mercy in this situation.

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  87. I love your perspective, faults and all. Because it's real. It's how I often look at things in my own life. It's human. It's expected. Thank you for reminding me that His plan is already in place, even when we want to re-knit the things that He has already made perfect in His eyes. I often worry about the future of my own children, one in particular. When I think I'm going to crack out of frustration and wanting to "fix" things, I remember that all of God's plans are laid out before me and I remember that taking a deep breath leads to refocusing and trusting that, like you said, I am a mother for a short time and our time here is like a speck compared to all of our time spent in eternity. Carry on, warrior mom!!

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  88. I love your little Lila though I have never met her except through you. I wish I could hug you both. Thank you for living out loud. You have a gift for showing a perspective I would never have considered. Tears for your pain. Cheers for Lila and the plans God has for her.

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  89. well, goodness.
    this kind of writing is right for me, too.
    and when your name comes to mind, i promise to pray for you, and lila, too.
    i am constantly humbled by how HE brings beauty from sadness.
    my heart swells at the thought.

    my best friends husband is in the hospital...forever...unless God heals him. he is 41, has 6 children. he cannot move a muscle, speak, or do anything for himself, but his mind is perfect.
    this disease has ravaged his body and is stealing his life, but God, in His complete sovereignty, has brought some of the most beautiful things out of this sadness.
    like a restored marriage, love renewed, husband and wife knit together more tightly than ever.
    pure beauty.

    and i don't tell you this to steal form your story, sweetie.
    only to stand with you in the fact that He has this and is very much in control, which you well know.

    what a treasure, that sweet lila.
    praying.
    xo

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  90. thank you for sharing this. you are one strong woman and so, so smart for not keeping it bottled up inside. praying for you & your sweet family <3

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  91. Just catching up on reading ... And even though we are not real life friends I feel like I've failed you in not supporting you through this time. I wish I could hug you and love on Lila and cry and grieve and then fall on my knees in conviction because I have my plans too and I fail in this way in trusting god. Of course I know it in my head, but how often I act on my heart which says my way is best. Yuck. Praying for clear direction ...

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  92. I am so honored to be reading this piece of your journey, thank you for sharing. I have a lump in my throat for how broken, beautiful, redemptive and sacred life with God is...your words were pure worship, it's not always pretty but it's honest.

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  93. So I just found your blog via Jones Design Co.'s blog and reading your words has been like surgery on my heart (the convicting "i've been so lame" kind). I know it can't be easy to put yourself out there and being brutally honest about your sin and struggles but I praise the Lord for your courage and humility! I hear my own thoughts in your writings and the Lord has used it to bring to light my own sins of control and entitlement. I'm so thankful for your transparency and I'm confident the Lord has used your journey to also help others in their own because you ALWAYS point to the cross and to Christ! He is our only hope! I look forward to seeing how the Lord glorifies Himself through your family!

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  94. Thank you so much for your honesty. I too know the feeling of having a doctor change my plans. Our son was diagnosed with severe autism 5 years ago and nothing has been predictable since. The journey has been incredible. Incredibly wonderful and incredibly hard. So many tears and so many moments of sheer joy at goals attained. I never know what I am waking up to in the morning. There is so much still ahead but God has revealed himself so profoundly to us through this experience that nothing seems to have the power to break us. I am so very grateful to have found your blog and to share in your story. The power of knowing you are not alone is life affirming. Sending you love and blessings all the way from Australia xo

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