A Thousand Times

I sit by the bathtub.  In the same spot I always sit (right next to the tub on the cold floor).  It's bath time for my Bella and she often tries to jump out naked and run through the house wet or dump all of the shampoos so...I'm on duty:)

Remember the way you used to watch your infant as they soaked in the bath, conscious of the water level, the temperature, and the amount of shampoo or soap they had access to (as they may dump or drink it)....that's me, with my precious nine year old who has autism. I left the room the other day and she had turned the water so hot that her skin had turned purple, but she didn't make a sound and just sat there motionless as I frantically scooped her out burning my hands in the process.

....I grab the soap, and demonstrate how to put it on a washcloth and lather.  I place it into my child's hands and she looks confused.  I show her how to clean herself and she tries to copy, but doesn't understand the concept.  Soon, she begins to sing her favorite song and drops the wash cloth into the water washing all the soap off.

....I lather my hands with shampoo and conditioner and place them into her hands.  I demonstrate how to move her hands around her head so the lather reaches every surface.  I then place a bit into her hands to see what she does...she pats her head once and begins to laugh then dumps all of shampoo from the bottle into the water as she sings the same song as before and looks off into space.

....she is 9, and we have done this a thousand times, and never yet succeeded.  But tonight it didn't make me sad or disappointed.  I looked at her happy little face as she sang her favorite song and was thankful for her joy.  Weird I know.

It's so strange how God can fill me with little deposits of joy in times where I know I should be tired or broken from seemingly repeated failures.  I often feel completely lost as to how to help my daughter care for herself.  The statistics don't lie, she will outlive me.  The thought of this is too overwhelming to continue discussing.  It's why we have tried a THOUSANDS TIMES to get bath time right.  I want to break through the barriers of autism so that I can control the outcome.  So that my child can grow to have ANY FORM of self sufficiency.  I want this for her future and for my tormented momma heart.  Friends.... I simply can't control autism and I feel like God keeps placing Psalm 139 in front of me as a precious reminder of His plan for me and my family.

I have highlighted the parts of this passage below that shout to my soul.

I could cry.

We are so loved.  Bella included....

Psalm 139

Search Me, O God, and Know My Heart

O Lord, you have searched me and known me!
2 You know when I sit down and when I rise up;
    you discern my thoughts from afar.
3 You search out my path and my lying down
    and are acquainted with all my ways.
4 Even before a word is on my tongue,
    behold, O Lord, you know it altogether.
5 You hem me in, behind and before,
    and lay your hand upon me.
6 Such knowledge is too wonderful for me;
    it is high; I cannot attain it.

7 Where shall I go from your Spirit?
    Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
    If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
    and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
    and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
    and the light about me be night,”
12 even the darkness is not dark to you;
    the night is bright as the day,
    for darkness is as light with you.

13 For you formed my inward parts;
    you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.[a]
Wonderful are your works;
    my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

17 How precious to me are your thoughts, O God!
    How vast is the sum of them!
18 If I would count them, they are more than the sand.
    I awake, and I am still with you.

I mean, I feel like God is fighting for my heart to turn towards His truth as he speaks to my heart....

"Annie, this word is FOR YOU"

"Annie, I have hemmed you in (you are secure in me and always will be)

 "I created your children and they are perfect...Bella's frame was not hidden from me when I created her and planned her days WITH AUTISM before she came to be"

"When Bella wakes you up each night at 2am, I am with you..... every time"

I just had to share this as I feel like so many of us (myself included) forget that God's word is living and active.  We go about our days searching for things to fill us up with joy and find that nothing seems to quench our thirst.  If there is one thing I have learned as a parent of a child with life long disability, it is that God cannot be replaced.  WE CANNOT LOOK TO OUR SPOUSES, CHILDREN, OR CIRCUMSTANCES FOR LIFE GIVING JOY.  They will fail us a thousand times over.

Now, go fill yourself up in His Word.

Hugs.

Life-long Suffering & Refinement

It's been some of the hardest few months with autism that I can remember....ever.

Two moves full of change, four months of 3am wake-ups, self-harm (she has bruises from punching her own face), elopement, screaming, throwing, flailing, holes in walls, poop on floors, public outbursts, anxiety....the list could go on.  

My poor girl.  It's hard.

I hate saying it's hard for me though because I don't have autism.  I bet it's a million times harder for our Bella to exist with autism than it is for me to be her caregiver?  I am so often told, "Annie, I don't know how you do it?" and  I laugh inside when someone states this, because I utterly fail at motherhood ALL DAY LONG.  Truly, apart from God's endless amounts of mercy and grace, I would be a miserable human who would have to mask my stress through some form of unhealthy physical, mental, or emotional addiction.  It's in the statistics people, special needs parenting (or any other form of life-long or life-altering stress/ailment) can lead down some pretty dark paths. When you go down these dark paths you must find a source of light or  a way to "fill yourself up" so to speak.  So, I get secretly excited when someone gives me seemingly undo "mom-props"  because this is the moment I get share how weak I am and how strong God is! 

If I were to simply lay it out for someone who wanted to know where I find hope in suffering, I'd use the word refinement. I would immediately point to scripture and the way God is spoken of as the "refiners fire".  I would say His fire is painful and often soul shattering but it's worth it in the way it changes us.

John Piper lays it out nicely in speaking of God as a refiner....

"He is a refiner's fire, and that makes all the difference. A refiner's fire does not destroy indiscriminately like a forest fire. A refiner's fire does not consume completely like the fire of an incinerator. A refiner's fire refines. It purifies. It melts down the bar of silver or gold, separates out the impurities that ruin its value, burns them up, and leaves the silver and gold intact...The furnace of affliction in the family of God is always for refinement, never for destruction."

God sends trials to test us, cleanse us, and mold us, yet we are never fully consumed by such trials. His purpose is for His own glory and our delight.  I know that sounds harsh, but God is glorified in the life of a believer when, in the depths of despair they can call out praises to Him.  

I feel as though I am in a constant refinement in this life, and if refinement results in the purification of my heart and my imperfections as a mom, wife, friend, and child of God....then I consider myself extremely fortunate.  What would be truly unfortunate for me (knowing my weaknesses) would be living a life without refinement.  Sure, it would seem easier ...but it would also result in my pride and selfishness being allowed to ignite and flourish within me.  I would be so ugly inside.

In the last few months I have had these thoughts and God has swiftly spoken back to my heart:

"This is hard..."  God- Consider it pure joy that this trial points you to Me child.

"This is our life forever isn't it?"... God- I know the plans I have for you...plans to give you hope...

"Why is it so hard right now?"... God- The testing of your faith produces endurance...

"This will pass right?" God- I am with you always....

I know many of you reading this are struggling.  I know this because I have cried with you and prayed for you.  What I will say is this.....I genuinely hope you are experiencing God's refinement right now my friends ....because the result is a beautiful, soul-satisfying life in Christ.  Without God, finding hope in suffering is like using buckets to bail yourself out a boat with a gaping hole in it....sure there are moments where you feel like "I got this" but ultimately you are still sinking.

1 Peter 5:10

"And after you have suffered a little while, the God of all grace, who has called you to this eternal glory in Christ, will himself restore, confirm, strengthen, and establish you"

If you need Christ in your life or simply prayer, please let me know!  I suffer along side you friend.

In Christ,

Annie

**Note: as I was writing this, Bella escaped our home out front door in her undies (it's 30 degrees out) and tried to go inside a neighbors home (we don't know them and I'm certain they would be shocked by the sight of my half naked 9 year old at their door). Alas, I caught her, and all is well...** 

**and people wonder why I'm a tad cray-cray

** he, he

Clinging to Sinking Sand: Disability in the Hardest Moments

The other day I rubbed my eyes desperately as I realized that I was falling asleep on the mothering job:)  I was sitting down on the couch to quick eat my lunch and had dozed off in the sitting position. I wondered to myself "Why are you so exhausted?".  After all, I had lessons to plan for work, a house to clean, a three year old who wanted to play horsey, and in an hour I needed to pick up the other one.
Then I remembered (as if I had forced it out of thought), that I had been awoken for the fifth day in a row by our sweet Bella at 3 am.  Autism sleep patterns are hard.

...."What was that?" I think to myself..."No it can't be her?"
...."Maybe it was just a thump?"  Nope, she's awake....and it's 3 am again.  She pounds at her door to be opened because it is locked for her safety at night.  We lock it because she has escaped the home before and we couldn't sleep knowing what an escape could mean if we were asleep.

.... She is laughing hysterically, asking for her iPad.  She will not fall back to sleep no matter what I give her, I know that from years of this.....I give in, I let her have her iPad, and try to lay back down...but she tries to escape every half-hour until I finally open her door and sit with her (this is the usual scenario).  She's done this on and off since she was born (not sleeping), but some stretches are harder and longer than others.

A few nights ago,  I was so tired from the numerous days of waking up that I didn't hear her pounding.

I woke up panicked when she started kicking at her door and I sprinted sleeplessly to her room.  I walked in and she was laughing (as usual) but....something was different... it smelled terrible.  My heart sank as I looked at my feet and found poop all over the floor (in numerous locations).  She had pooped herself.  She wasn't embarrassed and she truly thought it was funny.   I looked at it and felt angry and sad all at the same time.  I raised my voice and asked her "Why would you do this?"....she responded by saying "iPad" and laughed again.  I'm angry....angry because she still wears diapers to sleep and she's eight.... angry because she has no understanding of self-care or that pooping on the floor is not normal.....angry because she's eight and cannot exist in the same way as a typical child.  Just so angry. But even more....I am so very sad. Sad that I failed to wake up for her.  Sad because she couldn't get out and I didn't help her. Sad because I can't fix autism.  It's vicious.... this guilt I carry as a special needs mom.

....I cried as I scrubbed the floor at 3 am trying not to wake my three year old or my husband with my sobs and gags from the smell.  "This is my life" I selfishly said to myself in my heart and...."so unfair".

It is amazing, however, how God can graciously correct my hearts perception.  If it seems like I speak about disability often, it's because God speaks to me through it.  He gave me this hymn as I tearfully existed this last week scrubbing fecal matter off the floor:

"My hope is built on nothing less than Jesus love and righteousness...
I dare not trust the sweetest frame,
But wholly trust in Jesus name.
On Christ the solid rock I stand,
All other ground is sinking sand...
...all other ground is sinking sand."

This is a hymn written in 1834 which resounds in my heart today....

How dare I attempt to rely on anything but Christ as my rock.  Nothing this life has to offer (even the most beautiful things), can satisfy my thirsty soul.  When selfishness, sadness, and despair creep in and I am tempted to ask God why, He reminds me of the why.... and the answer is always..... for His glory.

God did not make a mistake with Bella.  He did not mess up.  He knew she was for us and that through her I would need more of Him.  For this I am desperately thankful.

He has graced me to be a special needs mom and continues to remind me that my child is a precious gift.  It's a beautiful and painful existence as a Christian special needs parent.  Beautiful, because the embodiment of Christ's love for us must exist between me and my daughter at all times.  In the way that I love her, Christ loves us despite our inability to reciprocate that love back to Him perfectly.... He understands our needs although we cannot express them.

....He is always present.
....He is sacrificial.
....He is selfless.
....His love never fails.
....He is my solid rock

I look at the way God loves me and desire to love Bella and others in this manner.  I am reminded that every "other thing" is sinking sand apart from Christ who is my rock:)

Matthew 7:24-27
24 “Anyone who listens to my teaching and follows it is wise, like a person who builds a house on solid rock. 25 Though the rain comes in torrents and the floodwaters rise and the winds beat against that house, it won’t collapse because it is built on bedrock. 26 But anyone who hears my teaching and doesn’t obey it is foolish, like a person who builds a house on sand. 27 When the rains and floods come and the winds beat against that house, it will collapse with a mighty crash.”

Motherhood & Grace

Motherhood...

...it's one of the most amazing experiences any human could ever have.  Only God could have dreamt up the miracle that is pregnancy.  He created us mom's with everything we need to sustain life within us, yet he also grants us the grace to nurture our little sinful humans outside the womb....physically, mentally, and spiritually... it's beautiful....and so, so very hard.  I believe this nurturing spirit is also present within those mommies who can't carry their own, and have adopted :)

Motherhood has blessed me in ways I cannot even put into words.  I've never loved anything more passionately than my children.  I would literally give my life for them, in fact I realized today that I truly do lay down my life (my wants, desires, needs) for my children.  It makes me look up and want to thank Christ for the way he laid down his life for me.  I want to love my kids like Christ loves me, every day.  It's so very hard to accomplish though, mostly because I feel that Satan tries to target us when we are down...when we are tired...when we fail and think we are inadequate.  He whispers, "You're no good at this"  OR  "Look at that mom, she has it together"

In fact, I feel like we moms fall into the "comparison trap" all the time. Here's a very real example that happened to me last week:

My sweet Bella has been regressing in anxiety and behaviors of late and become extremely physical and volatile.  If you look at her face you will see bruises from her hitting herself out of frustration.  I've prayed through tears that God would ease her pain and that I would have extra reserves of patience and love towards her in the mean time.  Well on Friday, after a morning of tantrums which left ME with actual marks on MY body, I tried to hold my chin up (like we moms do so often).  I packed lunches, cleaned the house for showing, did laundry, dressed my kids and myself, and headed to drop the first kid off.  When we arrived in Addie's class, her teacher had moved the classroom around (which was a change for Bella and meant she couldn't locate her favorite doll).  It was the big mother's day event that morning, so all of the preK moms were in the class waiting to watch the performance (many who I'd never met....who didn't know Bella has autism).  I saw a big meltdown coming over the room change and did my best to calm Bella so we could sneak off quietly...

...nope....
.....bookcases were overturned, toys flying in the air, screams, and kids getting hurt. EVERY SINGLE MOM was looking at me wondering why my 8 year old was acting this way.  I finally calmed her down, got out of the room, and as I held back a tear whispered an apology to Addie's teacher (who had just cleaned the whole class to welcome the moms).  I was embarrassed, tired, I wanted to cry... but I didn't have time because Bella needed to get to school.  Well,  here's where the interesting mommy comparisons took place...

...while I was feeling frustrated, sad, and inadequate I pull up to Bella's school, drop her off and hear a mom say to her husband (as I walked away), "Look at her honey, she's the one I was talking about, she has it together and always looks nice, I could never be like her"

....I wanted to turn around and shake her sweet face and yell...

"NO! Don't get sucked into appearances fellow mommy! If you could walk in my shoes this morning....if you could see the scratch marks on my back from today's tantrum...if you could look into my hurting heart and see that it is by God's grace (and some lipstick) that I smile and seem "put together".  Just because I curled my hair today, doesn't mean my life is perfect or you want to be like me... believe me!"

I didn't say any of that but I wanted to.....

I drove back to Addie's school for her performance and asked God why?  Why do you allow motherhood to be hard? Why can't I seem to fix my kids?  God clearly heard me, because I walked into Addie's classroom and got pulled aside by a mom who went on and on to described how my calm interaction with Bella during "the bookcase episode" touched her heart.  She saw deeper beyond my red lipstick and appearances.   I was able to explain to her how any goodness (whatsoever ) that was within me as a mom ... flows from Christ!  I thanked her for sharing with me because it was a testimony of God hearing me ask "why".  It's as if he answered "This hardship is for my glory sweet child".

So today on Mother's Day, as my sweet husband is deployed and my girls play around the house, I thank God for using motherhood to teach me more about Him and his goodness and grace.

Ladies, lets give ourselves a break today.  Lets look beyond the pictures we see on Facebook or Instagram that seem so "perfect" and start digging deeper into ways we can reflect Christ to others through our struggle. I fail at this so often, but I know that God gave me my children on loan. He created them and loves them more than I ever could!

With love,

a mommy

He Makes All Things Beautiful

Have you ever prayed for fresh perspective, or what I would call "a refreshing from the Holy Spirit"? It's a prayer I pray often in life because for some reason, I need constant reminding.  I'm simply imperfect in the way I love others and more importantly, the way I love God.  I find myself begging God to allow his Spirit to fall afresh on my heart and incline it towards Him in all I do.  This spans all aspects of my life...family, friends, God, and even my children.  Sometimes we need a fresh perspective....a holy outlook...a new love for our spouses, a more patient and hopeful love towards our children, or even a more passionate love for God's word as we combat the hardships of life.

God allowed me a moment of perspective today on behalf of Bella.  He must have known I needed it. I've actually had a few dreams where I wake up with actual tears on my face from sleepy sorrows. In these "nightmares" I am in my 80's and Bella is in her 50's.  She still has autism and in a few of the dreams I am so old I cannot save her from escaping the house because I can't run.  Clearly I have an unhealthy fear of her future as I believe dreams weave deep into our subconscious.

The perspective for me came from a trip to the store.  As I'm walking the isles I hear a faint groaning. I immediately know what it is because my Bella makes those noises.  I know that it comes from someone with a disability.  Instead of gawking (as many do) I smile in my heart as I see a mother of a disabled adult boy sweetly holding his hand, guiding him through the isles.  He is humming and slobbering and I hear her singing along as she gently wipes the spit from his mouth.  I had to hold back the tears because God moved me just then.  He opened my eyes to see the beauty between that mother and her disabled adult/child.  He wanted to show me it would be ok....because God gave me a unique gift, Bella.  I walked out of the store and my soul was filled as God proclaimed: "I am Bella's God and your life will be more beautiful because of her".  At that moment I honestly felt jealous of the mother and wished I had Bella at my side....instead of dreading another embarrassing outing where she screams or tantrums....I was being refreshed and reminded, God is so good and her presence is soul filling for me.  I came home, gave Bella a hug and as I looked on the wall I noticed a verse I have hanging....

Ecclesiastes 3:11 "He has made everything beautiful in its time..."

My life as a special needs mother is a beautiful journey, not because it's easy.... but because God has a plan.  He is making everything beautiful each day. He is refreshing my heart each minute and turning it towards His ways.  If you are reading this and your heart is empty towards Christ, ask him for refreshment.  He has a plan...his timing is not ours...he makes all things beautiful, even the hard things.

Annie

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.

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