Peace, Love, and Butterflies

First, I have recently been reminded of the amount of faithful brothers and sisters in Christ who pray for our family (and Bella specifically), Josh and I thank you from the bottom of our hearts.  The prayers are felt so vividly, I cannot put it into words.

Second, I just read the last post I wrote and realized I needed to update you on Bella's progress.  She is almost recovered completely from her period of regression, to God be the glory.  After many, many tough days and nights, we fought and prayed through her struggles and came out stronger (with a few extra grey hairs to boot).  She has now adjusted to the presence of her sister (she's still distant but mildly interested), she has also stopped the incessant screaming sessions and all-nighters!  We changed a few things at school to make her less frustrated, added some new supplements through Dr. Sears (which I will fill you in on later), and started essential oils (more to come on this too...wow, impressed to say the least).

Third, and here's my hippie story:
So Bella gets therapy 4 days a week for 2.5 hours each session in home.  Applied Behavioral Therapy is hard work for kids with autism as it stretches them to "be present" at all times listening to their therapist and interacting with their surroundings (which at times can be excruciatingly hard).  Each session we start Bella off with a walk to the park to help her unwind and meet her stimulus needs.  She often cries when therapy starts and I hurt for her because she essentially spends her entire day until 5:30 doing some sort of autism therapy or school:( So, as a mom... I hurt for her and feel, at times, that I may be pushing her too hard.  Here's where it gets hippie...

...about mid January we were walking and a butterfly followed Bella for about four minutes down the path to the park.  I helped point it out to her and silently marveled at the way it bounced beautifully and carelessly through the air around her.  I noted the sweet moment and thanked the Lord for giving it to us.  Then the next week, it happened again on our way.  Then again, and again, and again... as if this butterfly was waiting for the very moment my sweet daughter would walk by to follow her.  Then, yesterday as Bella was having a tough tantrum and I was exhausted from the day with her precious teething sister, it came directly to our home.  I was pushing Bella on the swing and it flew by my face, almost hitting me!  I stopped and was filled with this strange sense of God's grace in my life.  I suddenly realized that this butterfly meant so much to me (hippie or crazy not sure) --- I closed my eyes and it was as if God was showing me that Bella is much like this delicate creature.  Think about it, butterflies don't start off flying.  There is a detailed and somewhat strenuous process that they go through as caterpillars to become the beautiful creatures that result:

"One day, the caterpillar stops eating, hangs upside down from a twig or leaf and spins itself a silky cocoon or molts into a shiny chrysalis. Within its protective casing, the caterpillar radically transforms its body, eventually emerging as a butterfly"

I laughed when I read "spins itself" because Bella does her fair share of spinning :) I literally almost cried as the butterfly flew by my face because I needed that reminder so desperately.  That God created Bella and is continually molding her into the person he has planned her to be.  She is shamelessly gorgeous, I know.  But, her little heart is precious too!  She works so hard to learn and strive and I thank God for the beautiful reminders he keeps sending me.  It's in the little things, I pray the eyes of my heart are always open to finding them.

Peace, Love, and Butterflies.

This Season of Regression

Matthew 11:29-30

New International Version (NIV)

29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

My husband and I were discussing the season of life we are in right now.  It's a hard season like winter is hard....it is dark, cold, and difficult to thrive in yet we find shelter from it in the warmth of a fire, safely nuzzled in our homes. It's a season of regression for Bella, a season of busy work schedules for Josh, a season of newborn babies, master's homework, and lack of sleep.  This is the season we are in and I have to tell you friends, Matthew 11:29-30 is my shelter today.

What does it mean to take Christ's yoke upon us?  I am not scholar of the Word but a yoke was used on oxen in days of old to carry heavy loads, it helped bare the weight.  Josh and I discussed this season and decided that no amount of extra sleep, or good days for Bella, or smiles from Adeline will help us function in times of suffering.  We MUST bare the weight of suffering WITH Christ, in unison.  I have found no other way to deal with lifelong disability.  I woke today feeling joy although my sweet Bella left me with little sleep.  She often wakes up at night (as she did last night from 1am-6am) and jumps on her bed, repeatedly screams phrases 100's of times, screams in anger, laughs hysterically... you get the picture.  As I was laying in bed watching the hours pass I pondered this life.  I wondered how God decided that Josh and I were strong enough for this season. That we could handle 24 hours of extreme tantrums, chairs being thrown, dents in the floor from computers being thrown... I awoke feeling blessed and I cannot explain this apart from the yoke of Christ.

Bella has been in a state of regression for the past six months and it is heartbreaking for us to watch.  We have seen the doctor, worked with therapists, changed school settings, and are still searching for the missing piece to "fix her".  The reality is, God is in control and he may not "fix her" today or any day.  I will diligently fight to help my sweet child become less frustrated, to stop hitting herself repeated, to stop screaming.  I will try my best to ignore her tantrums and reward her good behavior.... but all this pales in comparison to my prayers on her behalf to a merciful God who may choose to ease her pain.

When she was asleep, with tears running down my face, I begged God to begin healing her again (like he has done in the past).  I asked him to end regression and ease the pain I see in her face and throughout her body when she tries functioning in this world.  He may choose to do so, or he may not....but, He knows.  He hears me.  He woke me this morning to Adeline...my sweet tempered/divinely calm baby who smiled at my face and showed me it's ok.  To a husband who holds me when I cry and does late night runs to buy things to brighten my day.

God is good.  His burden is light and easy and something I cling to today.

I love my life.

Christmas and Autism

Christmas is my favorite time of year!! As a child I used to peak under my door to see if I could get a glimpse of Santa's boot as he filled my house with presents.  My parents did a great job with Santa-antics, while still building a firm understanding of the true "Reason for the Season", the birth of Jesus Christ.

Before I became a parent, I imagined myself with kids... being that mom who went "all out" to make sure my offspring believed in Santa!  I still think the idea of Santa is magical....and I we all know I love magical things (hint: HP fan).  So, why does Christmas always leave me with a feeling of regret?  Well, it's because our Bella doesn't understand the concept of Santa, never has.  When she was younger, I tried to start some of the traditions that most households uphold (nativities, advents...ect), only to realize she would break the angels wings off and try to eat baby Jesus.  Poor baby Jesus ;) Our recent trip to a holiday light show reminded me of her sensory processing issues:(  Oh and Santa involves long lines (she really hates waiting).  So, I'm left with the realization that the whole "You better be good because Santa and his elves are watching" just won't fly.  In fact, this new "Elf on the Shelf" idea (genius by the way), is not something we can participate in because she has no understanding to connect the idea of "if I'm good, a magical person will make presents appear".  So much pressure on you parents... I do not envy you:)

Bella cares about spinning, laughing, tickles, and love.  She cares not one ounce about how many presents she will receive or if her sister will get more than her.  You know what?  It's a relief.  I often feel bad for parents of typical children because there is so much pressure at Christmas time.  So, although it sometimes saddens me that we have yet to be able to help Bella believe in Santa, I realize there is someone far more real who she needs to know.

Bella needs to know Jesus.  I could spend a year trying to help her understand the concept of Santa, or spend a lifetime talking about Jesus, praying to Jesus, praying on her behalf to Jesus.  

Today, I am thankful that autism shows me I need Jesus.  Today I am refocusing my efforts on Christ, and proclaiming his birth to my children.  Maybe one day Bella and Adeline will understand the concept of Santa (which would be so wonderful), but even more importantly the knowledge that Christ was born as a man, was crucified, and died for their sins.  That they can know the power of His  might (which far exceeds magic).

That is what Christmas means to me.  Don't let the hustle and bustle of the season take away from its true meaning:)