Thursday, December 9, 2010

Autism.


I honestly don't even want to write this...it makes me weep. I am going to do so because I think it's important to remember the journey God takes us through in life. If we forget the path we've taken, we will be unable to extol him with the glory He so rightly deserves. Really what is life about anyway? Giving God glory.

"Consider it pure joy". Those words have been running through my mind and have been piercing my heart all day long. God tells us that we should be joyful in trials because it helps us to learn to persevere... it helps us become mature and complete in Him. Those words from James 1 are truth. Sometimes the truth hurts a little bit, yet still remains true.

Yesterday, our two year old daughter Isabella was diagnosed with autism.

Just saying that leaves my heart aching. It seems so real.

Back up a bit...

The second we laid eyes on that tiny little girl, I knew we were meant for each other. When I was pregnant with Bella, I remember praying to God one night, "God, if this little person inside me is "imperfect" in any way, I would be honored to call her my own"... What an ironic prayer? Where did those feelings in my heart come from? What the world regards as imperfect, God regards as beautiful...

Bella has been late in meeting all of her milestones (but we attributed that to her being a preemie and were told she'd catch up). Well, when Bella turned one I started noticing her falling more behind. I also noticed a few things that seemed a bit "different" from other kids her age. Namely, the fact that she rarely responded to her name, made eye contact, or granted me that winning smile of hers. Yes, friends... you must work hard for a smile... but it's so worth it:)

In the midst of this I started my Masters in Special Education. Not really because of Bella. I love helping kids learn who really NEED help. I think Special Ed. teachers are amazing. I know I am a patient person and I believed God could use me in this capacity. Well, as I was researching autism for my classes, I started analyzing Bella (of course). It was like I was reading a book written about her. Most doctors brushed my questions off stating, "well most babies do this" or "that's perfectly normal". I finally convinced Bella's pediatrician here to refer us to a specialist. It took almost half a year to get the appointment we went to yesterday. That is partly our fault because we've been traveling so much and partly the military's because they would not approve us for an appointment unless we came home.... so we did.

At the appointment she was observed for two hours. The Neurodevelopmental Pediatricians and a Speech Therapist worked with her while asking me questions and looking into her file. They then went away for 30 minutes and came back in the room (looking serious and a bit somber)....you know, the eyes that pity you....knowing they have some "news". They went through all of the observations and explained that Bella met and exceeded the checklist for autism spectrum disorder. Then they said it, "Bella has autism". I had held it together up to that point. But, when she said it... I lost it. I was alone in this room, looking at the love of my life and feeling like I had lost all sense of grounding. Like someone had tipped my life upside down and given me a few shakes for good measure. I cried, not because I wasn't expecting it... I was. I cried for Bella, then I cried for Josh. I knew this news was going to be harder for him to hear because he's been away from her for so long. He cannot hold her and kiss her to make it ok. I finally composed myself and told the doctor I was SO THANKFUL to finally hear those words come out of someone's mouth...

I got into my car and wept. Then composed myself again. I wasn't even sure why I was so sad. I think I was sad for my Bella. Only because she now has this label that people will use to try and "define" her... I will never let her be defined by a label. I can promise you that....

I was thankful for the diagnosis...and here's why...

Imagine (if you have children) never hearing your daughter say "mommy". She's never said it to me. But, it's ok. She says it in the way she holds me and kisses me. Imagine asking your child to do something 14 times and never, not once even getting eye contact. Imagine leaving your child at nursery and them not even noticing you left. Imagine trying to make a list 3 pages long for your babysitter (just to help them not encounter a melt down). :)

It all makes sense... that's why I am thankful. It explains why I work so hard with her and see such minor results. Minor results for me and Bella are major. I love them. I will read her 30 books a day just to get her to say a word we've been working on! So friends, I am not sad. I am not questioning God on this. I am thanking him for giving Josh and I such a gift. I have felt humbled to hear many of you (family/friends)s tell us that "if any couple could handle this, it's you".... humbled because we have to work really hard to be strong.... to be that couple.

We will rejoice in our suffering. I don't even consider it suffering. We will rejoice in our Bella. We love her endlessly. We also love all of the encouraging words we've received. We truly cherish your prayers!

A friend sent me some encouraging words from Psalm 34 (I selected my favorite parts)...

1 I will extol the LORD at all times;
his praise will always be on my lips.
2 I will glory in the LORD;
let the afflicted hear and rejoice.
3 Glorify the LORD with me;
let us exalt his name together.

4 I sought the LORD, and he answered me;
he delivered me from all my fears.
5 Those who look to him are radiant;
their faces are never covered with shame.
6 This poor man called, and the LORD heard him;
he saved him out of all his troubles.
7 The angel of the LORD encamps around those who fear him,
and he delivers them.

8 Taste and see that the LORD is good;
blessed is the one who takes refuge in him.
9 Fear the LORD, you his holy people,
for those who fear him lack nothing.
10 The lions may grow weak and hungry,
but those who seek the LORD lack no good thing.

and...

17 The righteous cry out, and the LORD hears them;
he delivers them from all their troubles.
18 The LORD is close to the brokenhearted
and saves those who are crushed in spirit.

Lastly, Josh. I know this was hard to read. I love you. Bella loves you. We will be together soon and will enjoy each other once again... you are my dream.

17 comments:

  1. Annie, I'm weeping too and at a total loss for words. Praise the Lord for His good gifts to us, for His grace and strength that sustain us at every step and for the joy He gives in the midst of it all.

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  2. oh annie, my heart is so heavy. i honestly wish there was something that i could do or say to encourage you in all of this, but the truth is, your heart and your words have so encouraged me. God has truly equipped you with His love and His perspective. even now, in all the scariness and unknown, you are glorifying Him. you are truly amazing. love love love to you and your little angel. hope to shower you both with hugs and kisses if it works for you to come this weekend!

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  3. I am crying too, sweet Annie! What a SPECIAL, perfect gift God has given you. I'm so serious. She is so beautiful. Cannot wait for you to hold your husband and for her to hold her daddy again. I am thankful for Bella, she is so beautiful....cannot wait to meet her one day.

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  4. Annie, what a moving post. Thank you for sharing your heart and being such an encouragement to us all. I greatly admire your courage and am inspired by your surrender. Blessings will be showered upon your family because of your willingness to praise the Lord in these times! Love you.

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  5. Weeping and rejoicing with you, Annie and Josh! Thank you for sharing with us and being such a HUGE encouragement. You've been on my heart this week! Praying for your precious family, friend.

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  6. Annie, again, your glorifying of God in all circumstances is a great reminder to me:) Your opening paragraph says it all. Thank you for your words and sharing your story (all for God's glory).


    The carefully chosen words throughout this post are beautiful. Although Bella (and you and Josh) are faced w/different circumstances than many, the realization that this isn't "news" to God is amazing. We will wrap you in prayer as you navigate this different road!

    What a special girl you have, for such a special mommy and daddy!

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  7. Dear Annie and Josh,

    You don't know me but I felt compelled to write just a few words after reading your blog. Thank God for Bella's honest, real, struggling but loving parents! If you don't feel scared, you are not human. But there is so much hope in your words and outlook! I work with children who have been diagnosed with Autism. Yes, the life you imagined with Bella will most likely not be quite what you had pictured. Bella has so much to experience and learn and so do you and Josh. The three of you will be better and different people because of it! Our Father is able to help when we've reached the end of ourselves at any given moment. Seek out quality Early Intervention services for Bella. Given the right keys (in small increments!) to unlock the communication part of Bella, you will see growth and change! Consider finding a support group for you and Josh or find another family who is raising a child with Autism. I'm adding the 3 of you to my prayer list. You are loved and cared for by many!

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  8. Annie,

    I just read your blog (after sending you a message on FB). What an encouragement you are to me! We are praying for you, Josh and sweet Bella.

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  9. Read this today and thought of you...

    And God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work. 2 Corinthians 9:8

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  10. Earls family,

    I don't actually know you, but I've been reading your blog for a while because I'm trying to learn about the lives of Navy chaplains and their families. Which is to say I feel like I know you a little bit!

    I just felt moved to write something because I was overwhelmed by the immensity of your current situation. Our family is praying for you. May you have peace, strength and wisdom through this very trying time and in the future.

    May the grace and love of our Heavenly Father be with you always.

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  11. Thank you all for your encouraging words. I just read them and really needed the refreshing perspective you all had to offer. God is good, we appreciate our family and friends (and even those we don't know) who are praying for us!

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  12. Kelley D told me to read your blog for the news. I was immediately filled with chills at the thought of what youre going through. Its amazing to read this and know that God truly has filled you with His all surpassing peace and love. God is certainly in control and picked two unbelievable parents for this sweet child. To think He was preparing you for her even through your prayers and through your new studies. My prayer for you now is that God will give you peace as to which direction to take her in with treatment. Many kisses to sweet Bella from the Johnsons!

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  13. Annie, I have been following your blog since your dad had you up in church about 6 months ago. What an inspiration you are to so many. Having a daughter with special needs myself, I can truly relate to your devastation in learning of Bella's disability. My heart is so heavy for you and your family. Always remember that you are your daughter's biggest advocate. Be her voice. You are a wonderful mommy! Take comfort in knowing that our Father in Heaven has big plans for your family. While we are all God's children, He has chosen our girls as his "special ones". Bella will do great things and make you so proud.
    Hold your head high. You will have your family together soon. HE IS ABLE.

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  14. Annie,

    I just read this entry. I haven't seen any new blog posts on FB newsfeed from you in a bit, and thought I'd check you out. I'm also wanting to start a blog. Anyway...

    Your entry is strong and courageous. I am so thankful that you have answers. Being a special education teacher, I encounter parents all the time who sound like you and their children soar. They rejoice in their children, view their children as precious gifts, and accept their children for who they are. I love how you said she will not be defined by her diagnosis...AMEN to that. It's a lesson that much of society must learn...another job I believe you were created for!!

    I'm praying for you, Josh, and beautiful Bella.

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  15. Annie!! Thank you for writing about Bella! She is beautiful! I agree 100% with what Joy said and see it daily working with children with Autism in my classroom! And it's parents like YOU who make our job easier because you refuse to allow your children to be definied by labels. You understand what it is to celebrate small successes and you have HOPE. You are positive, but you're also REAL and human. You will make a fantastic teacher! I will be praying for you, Bella and Josh!

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  16. Annie, Josh grew up around the corner from me and my son's birthday is the day after his. I also teach SPED and I have worked with several autistic students and it does take diligence on the parents part to deal with the meltdowns and the arm flapping and the lack of eye contact BUT as you say the milestones are so much more rewarding and once you have their affection, it is a lifetime deal! I had one little boy who did not read at all and two years later he was getting commended on his test. It took consistent work between school and home and looking for that spark that would interest him. His started with sharks, wolves,and snakes and then I encouraged him to make his own books rather than a book report. He and I would read several books on a subject and then he would retell the information to me and I would typed it and he would search for pictures on the internet. We would print the book, have it laminated and he would practice reading his book and then share it with different classes. He was a perfectionist and always wanted to do well. The stress of not doing well and showing that he wasn't sure of a concept would lead to a melt down. He has made great strides and is now going to be mainstreaming for reading, math, science and ss. PE is a difficult period for him because he misinterprets actions and intents. You are so lucky that Bella was diagnosed early and that God gave you a leading in this direction and that you are an informed and educated advocate for her. I can tell that she will be a successful, loving daughter with wonderful parents and grandparents behind her all the way! Just know that routine and some choice in her life will be beneficial. A picture board of her day would be a great place to start right now. Transition times can be hard for them so preparation is essential. Each child is unique and I know you will discover what works for her. God Bless you and Josh and Sweet Little Bella

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  17. I just stumbled across your blog in an extremely random way, and have to say thank you. My son has a disease called Cystic Fibrosis and much of the way you feel and write mirrors my feelings and emotions. Psalm 34 has become a very cherished piece of scripture in our home. Thank you for your raw writing and your desire to bring God glory, nothing you do will be in vain when you keep that as your focus! Thanks again, and all the best to your sweet family!

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