Sunday, September 17, 2017

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.”

Sunday, May 14, 2017

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

Tuesday, January 17, 2017

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

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.