Tuesday, December 27, 2016

Unreal Holiday Expectations


Expectations.
This holiday season I found myself being full of seasonal expectations.  I expected that I would enjoy shopping for just the perfect gifts, decorating, making holiday treats, and just being surrounded by my lovely family and friends (which I did, for the most part).  With all of these blessings in my life, I still found myself in tears on Christmas day, again...and for the most painful reason.  My expectations.  
This seems to happen quite often.... and typically involves our sweet Bella's inability to thrive during holiday festivities.  Just typing "inability to thrive" makes me sad in my heart because the point of Christmas is not to thrive in the hustle and bustle, but it's truly a celebration of the birth of hope in life, Jesus Christ.  Bella has it figured out and she is teaching me every year to just stop.  Just stop forcing my festive expectations upon her sensory filled mind.  Of course it is my goal to always include our girl in everything we do but sometimes, it's simply too hard for her.  It's too hard to go to a "candle-light service" when her favorite thing to do in life is "blow out candles" and "play the drums on stage".... yes, my expectations were crushed as we had to remove her to the baby cry-room.  
It's always too hard to be surrounded by Christmas gifts for the entire extended family when she simply wants to rip open any and every gift she can get her hands on --- especially those that don't belong to her (I love my sweet and patient family in these times...they are so good to Bella and let her open many of their gifts).  My expectations were crushed as she tantrumed and fought me to the point I had to pin her down to get her calm :(.... on Christmas Day.... I hated it.  I hate my expectations. I praise God in these times for the overwhelming peace he gives me when I just want to cry or yell.  I look into her eyes and try to feel her pain and lack of understanding.  I stroke her sweet face and wipe her tears as I am careful not to get kicked or slapped.
I woke up last night however and God put a song in my heart.  He reminded me (and of course used his number one missionary to my heart -- Bella -- that there is something that IS worthy of my expectations, His long expected son, Jesus Christ, the true and worthy reason for this season).  I sang this to myself and was amazed at how my heart was full of joy with words written in the early 1700's. I publicly praise God today that God gave me Bella.  She simply reminds me to look to Him in all situations, every day of the year, especially as we celebrate the most important day....Christ's birth. 

Charles Wesley
Come, thou long expected Jesus,
born to set thy people free;
from our fears and sins release us,
let us find our rest in thee.
Israel's strength and consolation,
hope of all the earth thou art;
dear desire of every nation,
joy of every longing heart.

Monday, July 25, 2016

I Am Not Sorry...I'm Lucky.

     Someone asked me the other day about Bella and when I told them she was diagnosed with moderate/severe autism, the first thing they said (with that sad look they always give me) was, "I'm so sorry".  I actually love when people say this to me because it allows for me to share the hope and joy that can only be found in Christ through hardship.

I usually respond with...

"Oh please don't say sorry, because she's beautiful inside and out!  You see she was God's unique gift to me.  I am an imperfect person. God knew that I would need a daily reminder of Him in my life to break my pride, help me fight for joy, and always seek His strength...so he gave me the most beautiful gift, my Bella".

Then I usually continue on.....

Without autism, I know I would be someone different, a lesser version of myself.  I would be more selfish as my life would seemingly be easier and my focus on worldly "things" which are dust.  I would be more prideful as my family would be "perfect" (I know I would have been the mom who would brag and compare, and I'm thankful I'm not).  I have learned to be more merciful to others and gracious to those who are hurting....because I know what it feels like.  So really, I feel like God looked at the path I was following (the wide and easy one) and placed Bella in it....changing my direction, forcing me to walk the narrow and hard path....the one that leads to Him.

What greater gift could a human ask for?

Last night at 2 am I heard some familiar giggles.  As I struggled to open my eyes, I felt as though  I was dreaming and rolled over hoping that was the case.  Although I knew in my heart it was not a dream.  It was our Bella and she awoke for the day, at 2am.  It's something she's done since she was little and something she may do her whole life due to her autism.  People with autism don't produce melatonin (what naturally helps us sleep) properly.  We are so used to her sleep patterns here, it's no longer a topic of discussion....it's just a day for stronger coffee.  So yes, I was awake at 2am like a mother with a newborn, but sometimes at night....on those nights....I lay in bed and ponder with God, a quiet time alone that I wouldn't have had otherwise.  Some nights I pray, some nights I'm angry and cry, some nights I just fall back to sleep.  But God knows my struggle.

Autism is a uniquely challenging diagnosis.  It is hard to understand and frankly, if I could get inside my daughters body for even 5 minutes, to feel what it's like, I think my perspectives would be enlightened and my patience for her increased.  To have a 7 year old still in diapers at night who (in some way) needs help cleaning, bathing, using the restroom, eating, crossing the street, ect is something that I have learned to not only accept but seek to find joy through.  I desire to serve her and pray to do so every day of my life ...the way Christ serves me.   Unselfishly and full of grace.

I am so lucky and so thankful.  I am not sorry to be her mom.  She is a literally gift from God.  True, there are days where I waiver, complain, and question God's faith in me as her mom but, in the end I know she was given to me with divine intentions.

REGARDING THE DAILY STRUGGLE...
2 Corinthians 4:17 "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all"

REGARDING GOD'S DIVINE GIFT OF AUTISM....
Exodus 4:11  "The Lord said to him, 'who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord?"

REGARDING JOY IN AUTISM....
James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything".


In Christ,

Annie


Sunday, June 5, 2016

When Disability Crushes You

"Hallowed Be Your Name"
I pondered The Lord's Prayer today. I was literally captivated by the depth behind each sentence displayed before me in God's word.  I mean, this prayer is God breathed, and I realized that I have never truly allowed it to pierce my heart the way it should.  Not only did Christ share the prayer as a formula in which we can speak with Him, but He also outlined the way our hearts and souls should seek out fulfillment and joy in Him.  Here is the prayer...

Matthew 6:9-13New International Version (NIV)

“This, then, is how you should pray:
“‘Our Father in heaven,
hallowed be your name,
10 your kingdom come,
your will be done,
    on earth as it is in heaven.
11 Give us today our daily bread.
12 And forgive us our debts,
    as we also have forgiven our debtors.
13 And lead us not into temptation,[a]
    but deliver us from the evil one.[b]
As I read the prayer, God kept pointing me to the word "hallowed".  I asked myself, "How do I hallow God's name?" and began studying this command.  If you go through the Bible, you find that God goes by many names.  To hallow His name is to magnify the many amazing aspects of His nature and declare them as holy.  That the chief end of all we do everyday as Christians should point back to God and give him the glory He is due.  It hit me, as I struggled through a day full of emotional and physically intense autism tantrums, that I was unable to hallow His name in the face of autism at times.  Then God spoke to me.

He whispered in my ear, Annie.... stop.... listen....I am....

El Shaddai - The Lord God Almighty (I made heaven and earth and all that inhabit it....Bella's autism is not unknown to me and I have a plan for her).

Jehovah Rapha - The Lord That Heals (I can heal sick hearts and souls, I can allow sickness to teach you to be close to me, I can heal autism....but I probably won't and it will make your relationship with me more rich and Bella's life one that leads others to myself, her creator God).

Jehovah Shammah - The Lord is There (I am there when you are alone and hopeless, I capture every tear you shed in my name on behalf of your children....they are not wasted).

Jehovah Shalom - The Lord is Peace (When the day is impossible and there is nothing left to give, I am your peace....I am also Bella's peace even amidst tantrum...I know her).

It's as if God knew we as humans would inevitably seek hope and joy in literally anything and everything BUT Him.  Are we to find fulfillment in easy days and perfect jobs? No.  In perfect kids and a perfect spouse? No. In our health? No. Why? Because all of these things are imperfect, they fail us everyday in some way.  So what are we left with when disaster strikes, autism breaks us, our spouses fail us, our kids get sick, or death creeps through our doorstep?  God....and his many, glorious names.  When God allowed me to be Bella's mom, he gave me the best gift.  He took a heart that was selfish and prideful and crushed it.....then slowly rebuilt it piece by piece into something inclined to Him.  I am thankful and today I hallow his name in the face of disability:)

Monday, February 22, 2016

Help My Unbelief

Be warned, this involves poop...but don't worry it gets cleaner and much more wholesome:)

The other night while I was changing wrestling with my two year old and her stinky diaper, I noticed my 7 year old running around without clothing and whimpering as she whispered the words "I pooped".  My heart sunk when I realized she too had pooped but not in the toilet or in a diaper.  She didn't make it to the toilet.  Knowing she doesn't yet know how to clean herself completely, she was basically a running-poop-smearing-time-bomb (I told you poop was involved).  I had to finish with the little one before I could catch the big one.

Yes, sweet Bells had an accident on the floor... then, out of concern, she had tried to clean it by using the shower curtain, my towels, her hands, and even her mouth.  Once I caught her, I mustered up enough motherly-mercy (despite my frustration at the present situation) to look into Bella's sweet eyes and tell her that I loved her and that it was ok.  Yes, it really was ok.  I was going be ok, she was going to be ok.... despite the lingering smell on my hands no matter how hard I scrubbed.  She didn't mean to do it, she doesn't mean to do a lot of things 7 year olds shouldn't do, she has autism.  

Parenting a child with a disability is challenging.  I am usually unfazed by the out workings of autism, but some days are harder.  On this day we had company coming, I had places to be, things to do, and I didn't have time to scrub fecal matter off the walls.  In an instant I allowed selfish, unloving, and sinful thoughts into my heart.  As Bella walked off I audibly mumbled "Nice, a 2 year old and 7 year old in diapers...this is so ridiculous" as if I knew God could hear me.  Oh and Bella could literally hear me, and although she doesn't respond like other kids, her poor little heart must break at my reaction to her sometimes:(

I realized something this week.  When I respond to autism in this manner (with selfishness, anger, resentment) it boils down to one thing: unbelief.

In the Bible, God talks constantly about belief....belief that Jesus Christ is sufficient and can do all things.  When I allow sinful thoughts about my daughter and her disability into my heart, I am calling into question God's promises in her life.  That he created her for a purpose, and that purpose is being revealed daily....even as I scrub poop off the walls.  

Mark 9:21-24 talks about unbelief.  In this passage a boy (from childhood) had been convulsing, his body was completely out of control and his father mourned for him believing him to be possessed by an evil spirit.  Then Jesus steps in and reminds him to believe...

21 Jesus asked the boy’s father, “How long has he been like this?”
“From childhood,” he answered. 
22 “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”
23 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”
24 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”
The next few verses explain how Jesus (in his perfect mercy) chooses to heal the boy.  
What hit me in this passage was when the father says to Jesus, "But if you can do anything...help us" and Jesus responds with .... "If you can?" (He's probably like, 'really dude, I created the universe, I'm pretty sure I can').
I don't often pray for complete healing of autism because I know it's a life-long disability.  But why not?  Jesus continues in the next verses and says, "Everything is possible for one who believes"....and he did many miraculous healings in the Bible.  In fact, whenever Jesus came across the results of sin (sickness, death, possession, blindness, lameness ect), He healed it.  It's as if he couldn't resist restoring from sin, washing things clean, helping the blind see and the lame walk...
...could He do this for Bella?  Should I believe? Yes I should.  If I pray and truly believe, does that mean Bella will be cured of autism today, tomorrow, 20 years from now....maybe, and maybe not.  One thing I do know is that I believe all things are possible in Christ.  Think about it this way.... If you have a loved one who has died (even after your constant prayers for healing) does that mean God isn't sufficient and maybe we just "didn't believe"?  No it doesn't!  He created all things for His glory and for His purposes.  He numbers our days.  He is still sufficient when healing doesn't take place because the ultimate healing has already taken place.  Jesus Christ.  He came and died on the cross for sin.  That my friends was the ultimate healing.  That is something you should believe in!
So, I will continue to pray for Bella's healing and I do believe that all things are possible in Christ.  My hope and joy in life come from Christ who died to heal me .... and Bella ... of the sin that corrupts us.  After researching Biblical truths about salvation and disability, I believe Bella is already a part of God's kingdom as she has not yet been able to fully comprehend salvation.  She has a heavenly body awaiting her that is even more beautiful than the one on earth (if that's possible) -- one without autism.  To God be the  glory.  I do believe Lord....continue to help my unbelief.





Saturday, January 30, 2016

Fear of the Future: Parenting a Child With Life-Long Disability

     The other day I was sitting on the couch about to stand up and I asked my sweet Bella to help me up (it's a fun game we play because she loves pulling heavy things....it's a sensory thing with autism).  She came gladly and grabbed my hand as I pretended to be an old lady needing her help to stand saying, "Oh Bella help, I can't get up" in my best old lady voice.  After she helped me up, and while giggling with delight, she skipped away and my heart suddenly and unexpectedly sank.... my mind flashed me forward decades.

     I was an old lady sitting in a chair, asking Bella to help me stand up because I literally couldn't.  Bella was a woman, she was still living with us and still needed me desperately.  The older version of myself felt helpless and hopeless because my body was failing and yet my sweet child (now adult) was still in need of me.  Not only in need emotionally, but also physically.  She still needed sensory input, still needed to swing and jump.  She needed me to pick her up, help her bathe, and change her clothes.  My heart broke inside.  A solitary tear began to stream down my face as I flashed back to the present.  The future was so hopeless.  I felt so scared I almost threw up.  What is going to happen when I get old?  Then the tears really started to flow when my mind allowed me to think of my own death....what will happen when I die?  Who will love her like me?  Who will watch out for her safety and well being?  How will she ever understand the loss of a parent? How will my loss affect her?  I ran into the other room at this point gasping for air as if I was about to hyperventilate and found the loving arms of my husband.  He silently held me and told me it was going to be ok.  His hot tears found my face and we began to pray for her future.  Sometimes a prayer is the only way I can cope with my greatest fears.

     These are low thoughts, I know.  Friends, if you have a child with life-long disability I know you've been in this place, the one I just explained.  I often try to push out the thoughts of my death because I begin to panic.  My sweet husband often reminds me of the ways in which we will financially provide for her and some of the plans we can make to be sure she is taken care of... but, it's still a very hard topic for me.

GOD'S TRUTHS AMIDST MY FEARS:

Psalm 121:5-8
The Lord watches over you
the Lord is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.

The Lord will keep you from all harm
he will watch over your life;
the Lord will watch over your coming and going
both now and forevermore.

Friends, the Lord created our children and will watch over them forever, long after we are gone.  It's a terribly hard and gloriously amazing promise.  But to dig even deeper....He created them for a purpose....

Psalm 149:13-14
For you formed my inward parts; you knitted me together in my mother's womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.

Exodus 4:11
Then the Lord said to him, "Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?

John 9:2-3 (to read more that I have written regarding special needs parenting and this verse click here)
"His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
'Neither this man nor his parents sinned', said Jesus, 'but this happened so that the words of God may be displayed in him".

Here's the hope.  Here's the place where you and I can find joy amidst our fears.  In the knowledge that God made his creation exactly the way he intended.  There was no mistake.  He looks at your child with such love and is pleased with them.  He will watch over them long after we are able.  He will use their imperfections to stretch us, teach us, and mold us into better people.  After all, when are we closest to God?...well, it's when we are calling out to him for strength and asking for wisdom.  As a special needs parent that is EVERY SECOND...OF EVERYDAY.  To God be the glory.








Thursday, January 28, 2016

Jar of Tears: Finding Joy Through Disability

Welcome Weary Soul.


Today I want invite you to take a journey with me.  One that I desperately need to take.  One I've been praying about for many years as a mother of a child with life-long disability.  This journey is for those who are physically or spiritually broken, often hopeless, and in desperate need of a constant beacon of joy in their life as they walk this unique path of parenting.


In Psalm 56:8 it says of our Creator God,

You keep track of all my sorrows.
You have collected all my tears in your bottle.
You have recorded each one in your book.

Today's truth is that God knows your joys and sorrows. As I dig through scripture to understand God's purpose in suffering, this blog will serve as my virtual jar of tears.  There is something beautiful about this portrait of a God collecting and cherishing the pain of His creation.  What a personal and precious act .... visualizing the way He comprehends every ounce of our doubt, pain, uncertainty, anger and joy?!

I am about to begin an in depth Biblical study on the ways God purposes my/your child's disability for something beautiful...

....for hope
....for joy
....for His glory
....and for my/your good!

I know those statement can be painfully hard to hear. You may be rolling your eyes at me already.  I know this because sometimes I don't believe them.  Why would God make my child seemingly imperfect?  Why would he allow her to suffer? Why doesn't He heal her?  What purpose could disability serve for good in my life as a parent?  Why at times do I lose heart and feel angry at God?

If you promise to open your heart with me,  I plan to thoroughly prove to you that God knows your pain, He feels it, He sees it, and He purposes it for something great.  If you don't believe me, I understand and know that I am already praying for your heart.  That as I work through God's promises to you and me, that you would see Him in a very real way, as the divine Creator of your disabled child who loves them even more than you! Now, if you are reading this and do not have a disabled child and are fighting for joy generally, these truths are for you too!

My plan is to compile my joyful and painful "tears" then share Biblical truths about each of them to help keep the beacon of joy lit in my heart (topics like depression, loss, anger, frustration, pride, hopelessness, bitterness ect). Once my study has been prayerfully and sufficiently compiled,  I pray that God allows me to put this together in a book or study of sorts, which can be shared with other families like mine.

The day my daughter was diagnosed with autism was painful (read more by clicking the link).  I searched everywhere for a compilation of scriptures and truths that were just for me (a parent of a child with a disability), and my search came up lacking.  So today I am putting one together.  I hope that one day, a mother like myself can be blessed by this compilation of scriptural truths about disability and finding joy in God.


Side Note:
I know many of you followed my family when we shared our life on www.navychaplainastory.blogspot.com.  That blog was beyond therapeutic for me personally as I struggled through life during deployments and an autism diagnosis.  Please feel free to recount that journey by visiting the blog and learn more about our family! I decided to take a break from the family blog, finish my Masters in Special Eduction, and now to start fresh on this newly focused journey!