Our New Blog Location

Hi blog friends,

It's been a while, I know! I (Annie) finally finished my Masters in Special Education.  It kept me extremely busy so blogging was basically impossible.  I just started a new blog which can be followed at www.joyindisability.blogspot.com! I thank you for checking in with us and I would love for you to join me (Annie) as I embark on a journey through scripture to find the true source of joy in life and disability.... through Christ!

The Bearded Man

I live in a town that really has no slums.  It's an upper to middle class utopia where the streets are squeaky clean and are filled with soccer-moms and suburbans.  There are shopping complexes and Starbucks every few miles so you will never be left wanting :)  Needless to say, the homeless population is low.  In fact, I can name the specific homeless people according to the outfits they wear and the streets where they reside.  I often wonder at these individuals. What happened to them that they roam these polished roads with their random belongings?  What misfortunes became them? Was it circumstance or choice that placed them there? I probably know the answer but it still intrigues me.

One of these individuals I lovingly call "the bearded man".  He wears brown from head to toe and his face is so covered in an unshaven beard that you can barely see his eyes.  He seems middle-aged but it's honestly hard to tell.  He never seems to be clean, never changes, and drags around a trash can.  I have mentioned him a few times to my husband because the bearded man seems extremely disconnected from reality (staring into the air, playing with sticks, mumbling ect.).

I have a weird obsession with the homeless.  I know money is often misused, so food is a great and sustainable resource I often try to give them. God spoke to me the other day through the bearded man, and I wanted share how...  I had always wanted to be able to give the bearded man food but had been nervous about it because he seemed a bit unstable face-to-face.  A couple weeks ago, I drove up to a grocery store and JACKPOT .... I saw the bearded man.  Side-note: You can now call me a homeless stalker. There he was, in all his hairy-dirtiness with his signature trashcan close behind him.  I ran into the store (which happened to be a high-end organic place) and got him the best sandwich with the most expensive fresh cuts of turkey and dressings. I strutted up to counter so proud of this gift I was about to give....a gift that was going to taste sooooo good....a gift that he didn't pay for but I gladly gave.....something he needed to help nourish himself.  I timed it out so that when he walked away, I set it on his trash can and hurried to hide in my car and stalk watch him.  I couldn't wait for him to see his gift.  A few minutes passed and he walked out, looked at the sandwich curiously then he did something that surprised me..... he tossed it onto the ground and walked away:(

Deep sigh.  In my head I was thinking "that was Boars Head meat, what a shame" :) I was so weirdly sad.  I wanted so badly for the bearded man to see it, rip it open, and inhale it. Instead he tossed it on the ground in all it's "expensive organic" glory.  I drove home feeling confused and a little hurt.  I don't know why I cared so much.  Then a thought creeped into my heart "Annie, you do it everyday".  God was speaking to me in the totally weird way he does.  God reminded me that every day he watches over me, ponders at my actions, and desires to provide for me.  He wants me to know him as this provider, comforter, giver of good and nourishing things.  He wants me to be thankful and partake of His goodness.  Yet there I was, going about my daily routine never thinking of Him, thanking Him, or asking Him for help. It must break God's heart. Then I had an even more profound thought......this same God, in all his mercy, offered his Son Jesus Christ on the cross for the sins of the world as a free gift-- a gift he gives to soccer moms and the bearded men alike.  A gift that you yourself may not have accepted.  He offers salvation to the dirtiest of sinners (one of them being me) and it is undeserved yet freely given.  I ask you today, have you every wondered at your source of nourishment?  Have you encountered God? Do you know how much he cares for you friend?  The source of nourishment God has to offer will quench your earthly desires and replace them with a pure heart....a heart so nourished it is constantly being filled with gifts of joy, patience, and love.

You've heard this one before but maybe have never taken it to heart? Do you believe?

16 "For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.
17 For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him.
John 3:16-17

I know, I'm weird.  Either way.... I'm trying again bearded man, so consider yourself stalked.

Autism Mom: Why Vaccines Are a Tough Topic For Me

I hate conflict, I hate it so much. I'm a lover, not a fighter:)

When I got married my super-hot/outspoken/confrontational husband informed me that I will do just anything to NOT confront a problem and that I needed to stand up for my beliefs.  In fact, the thought of someone disagreeing with me literally causes me physical anxiety.  So, with that said, I am about to put my big girl panties on and touch on something extremely controversial.  It's a topic that promotes polarizing views and unfortunately a lot of name calling.  It's a topic that, for me, stirs up much, deep seeded emotion.  I want to talk about VACCINES...

Why? Well, as I scroll through social media and hear conversations I am prompted to share our story. Am I offended when I am referred to as "selfish"  "dumb" "retarded" or "stupid" because I am one of those families who struggle with vaccinating? Maybe a little but I get it, I get why you feel so passionate, and I still love you.  I want nothing more than all diseases to be eradicated and I do want you to vaccinate your child if you want to.  I don't want your child to get the measles. Oh, and for what it's worth, I do not consult Jenny McCarthy for medical advice.

Your story is not my story, but to stand in my shoes for a second you must read on:

OUR SIDE OF THE STORY at a glance:
-My daughter was premature and was delayed meeting milestones from birth forward
-My daughter showed signs of autism before vaccination (lack of eye contact, not meeting milestones, tantrums, sleep issues, stacking, spinning, food aversion/obsession ect)
-My daughter showed signs of gut issues/biomedical sensitivities from birth (food sensitivity/allergies and food aversions/cravings, butt/body rashes, diarrhea, fowl smelling fecal matter, gas, bags under eyes)
-My daughter did get her vaccines
-My daughter did have a strong reaction to her vaccines (fever, rash, lethargy, pause in development)
-My daughter has autism
-When I chose to vaccinate Bella it was a hard decision
-When I chose to NOT vaccinate our second child Addie, it was an even harder decision

MY OPINION simply stated:
-I believe vaccines work and are important for our society to thrive (not to mention the diseases that would come back without herd immunity)
-I don't think vaccines CAUSE autism *though many parents in the autism community do and I can see why as they watch their child disappear before their eyes* just not my experience
-I do think however that vaccines cannot be tolerated by children with the genetic/biological make-up autism presents as their systems are sent into a spiral when toxins are present
-I believe some children with autoimmune issues, gut issues, a family history of autism, illness ect should not get vaccines either at an early age or at all, because the are too strong/toxic for them
-I am informed. I do constant research, have talked to numerous doctors with varied opinions, and literally pray with tears about whether or not to continue to vaccinate my children

THINGS THAT I (AS AN AUTISM PARENT) CONSIDER and you should too:
-My husband and I researched and prayed hard about whether or not we should have another child knowing the statistics on autism and genetics.  God gave us Bella and now Adeline and we will do everything to protect our girls (which may or may not include vaccines).
-NO ONE HAS FOUND THE CAUSE OF AUTISM!!!  Did you know that?  Its hard because my child has a life-long disability yet NO ONE has ever been able to tell me why.  I sometimes envy parents of children with other disabilities because at least they know the cause.  I am left to wonder ... which is the reason many autism parents (including myself) are willing to try a myriad of treatments, not because we are crazy, but because we are desperate!
-There have been many causes offered (none yet proven):  environmental-factors, genetics, brain issues, vaccines, prenatal development (the list goes on).  What is a parent to do with all of the varied opinions on this?  If there was even a remote chance that something you do or did caused autism, would you do it again? When every doctor I see has a differing opinion, it makes decisions on treatment hard.  Do you see? It's agonizing.

SO WHAT AM I TO DO:
As you read above, I do believe in vaccines but, I struggle with them.  I have yet to vaccinate Adeline for fear she will respond the way Bella did, is that selfish?  Maybe.  Is it uninformed? Not at all.  Do I have to weigh the risk of the diseases she could contract or conversely the autism link that has been disproven (yet I see first hand as I talk to the autism parents all around me)?  Yes, and I lose sleep over it.  Will I vaccinate my second child in the future when she's older? Maybe.  Until then, I continue researching and agonizing as a parent.

Just know, for every article you post showing no link between autism and vaccines there are hundreds of articles that disagree and say otherwise.  This is why I struggle....

1. 30,000 reactions are reported every year by the CDC, and between 10 and 15% are serious (hospitalization, disability, death).

2. Almost 4,000 people have been court awarded over 3 billion dollars (yes, that's 3 billion) in damages from vaccines. 

3. This is an interview with Bella's doctor, Dr. Bob Sears who wrote The Vaccine Book and promotes the alternative schedule.  We actually saw him the same day he did this interview a couple days ago and I hate how the media portrays him and tries to say he's "anti-vax" whatever that is.  He tells his patients (us included) that vaccines work.  But, he also sees first hand how children with certain genetic factors respond to ANY toxin put in their body, vaccines, foods, ect.  He would caution those families on further vaccinations.
http://youtu.be/iNchtLXdB_g

IN CONCLUSION:
I am not a doctor
I am not anti-vax
I am not pro-vax
I am not friends with Jenny McCarthy
I love my kids
I hope you now see why I, as an autism mom, struggle with vaccines
Please stop the name calling, it stresses me out:)

With love and sweating palms due to confrontation,

Annie

Inspiration in Unlikely Places

You are my inspiration, sweet lady at the nail salon.

You are in your 80's with straggly silver hair, glasses as thick as bottles, and a walker with worn in  tennis balls.

You select a muted pink pastel nail polish and squint to assess the color on your wrinkled fingers.

You keep turning your head to check something.  I am intrigued. What is it that divides your attention so perfectly?  What could be so important that you are unable to relax and be pampered.  Then I see.

Sitting beside you is your 60 year old daughter.  I can tell by her ticks, vocabulary, and lack of eye contact that she has a disability.

My heart swells with many emotions.  For a second I hurt for your life story then quickly I'm in awe of it.  I suddenly identify with you so vividly.  

Bless you sweet mother.  You continue to be the caretaker for your child who needs you well into her 60's and beyond.  She must keep your spirit young.  Your daughter keeps asking to try the lotion the nail lady places on your arm, so you you give her some and comment on the beautiful lavender scent.  Your daughter agrees and likes to smell so much I can tell she wishes she could eat it.  After the excitement of the lotion, your daughter goes back to her seat and stares into space.  What a lucky daughter you have.  I wish I could have taken you both to coffee and talked through what this life entails for you two.

Just know, you are my hero.

I cannot imagine what life was like 60 years ago when your daughter was born.  Disability was extremely faux paux back then, and many children were sent to mental facilities.  I wish you knew how much admiration I have for you right now.

I sit hear pondering heavy thoughts ....

...will I have a daughter in my house when I'm 80? Only the Lord knows, but how lucky will I be either way.  If she continues to develop to the point of independence, we are blessed and to God be the glory.  If she still needs mom and dad well into adulthood, we are honored...and to God be the glory still.

Autism: Secluded on an Island Where the Rules Only Make Sense to My Child

One of my friends recently watched the show "Parenthood" and privately messaged me to send sweet words of encouragement and to explain that they didn't realize what life was really like having a child with autism (the show portrays a family with a boy who is diagnosed with aspergers).  I had heard about this show and hesitated watching it because sometimes its just too hard to watch your life played out on TV.  I wondered how the writers would make autism look and didn't want to be disappointed or upset.  Would they portray autism as a burden or a blessing? Would they make the child look crazy or the parents seem overly depressed? Would they do autism justice.

Much to my chagrin, I decided to watch a few episodes.  I found that autism was actually a HUGE theme of the show Parenthood.  They successfully portray a family before and after the diagnosis of their son who has extremely high functioning aspergers (on the autism spectrum).  It seems that the writers for Parenthood either consulted an autism parent or that one of them has their own child with autism.  I say this because, they do a great job helping viewers feel the pain of not knowing what is wrong with the character with aspergers (before diagnosis), and way the parents suffer through diagnosis and the utter sadness they exhibit at of the loss of a future for their child (or the future they had envisioned at least).  Lastly, they successfully show the overwhelming chaos of life with numerous therapies and schedules!

I must admit, at first I was a little annoyed simply because the character on the show was so high functioning (in my head I'm thinking, whatever! I would be super pumped to have a child who could function that well!)  How could they, or why would they want to show a child tantruming for hours, eating non-edibles, eloping, biting themselves, repeating the same phrase 100 times,  kicking doors down, smearing poop on the walls, running naked everywhere--the list could go on and on.  Why did I want to see that anyway and who would want to watch that on TV?  Then I kept watching and found myself crying with the characters.  Yes, their son was high functioning but the struggle was evident.  Then I came to the conclusion that I still struggle with the fact that Bella is not diagnosed high functioning.  She certainly is at a much better place then she was (she is diagnosed with moderate autism).  She was recently evaluated and scored moderate in many areas (and even advanced in some academic areas--she reads over 30 site words already--smarty pants) but she scored severe in social behavior--so severe that she's at just under the social age of a two year old.  She's almost six.  That was a hard one to swallow.

Tonight a character on the show said something to the effect of "having a child with autism is like being secluded on an island where the rules don't make sense to anyone but your child".  So true.  I mean, we still cannot drive on certain streets without turning on the roads Bella is comfortable turning on....and we can only go a few places without full blown panic attacks....but that's our Bella.  It's a chaotic world for our children which spills over to us, the parents. 

So I guess I'm saying, I like it.  I like the show.  I know its a silly thing...but I find myself wanting to hug these fictional characters and tell them "it will be ok".  Then I find myself wishing they knew Jesus.  I say this almost everyday and I'm sure my friends are sick of hearing it: 

THERE IS SIMPLY NO WAY TO FIND TRUE JOY IN LIFE WHILE DEALING WITH DISABILITY APART FROM CHRIST

James 1:2-4 (my "go to" verse)
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.


That's all.  That's what I really wanted to say.

I love my Bella so much it literally hurts sometimes.  I count her a blessing more than I could formulate the words to explain.  She makes me a better person is EVERY WAY POSSIBLE.  My heart is ugly.  She helps point me towards the cross... where I can lay down all of the ugly feelings I have and be sharpened through the struggle, the worries, the anger, the disappointment, the loneliness-- replacing it all with JESUS and HOPE. So really, if you look at it, I'm lucky.  Autism is beautiful, it's hard, but God allowed me to be Bella's mom.  I thank Him for it, because I know God is true to His word... faith tested DOES produce perseverance.  

Who will love her like I love her?

Before I knew her...
Some children need a little "extra love". Even before having two of my own, I have always gravitated towards those precious souls who "didn't fit in just right".  This desire led me to pursue my master's in special education.  While completing my degree, I found out I was pregnant with our first child.  Tears of joy filled my eyes as I showed my husband the pregnancy test.  We couldn't wait to meet this "being" that was equally mine, and equally his.  I remember one night as I laid in bed studying about all the different disabilities I would face as a teacher, I was prompted to tell God something.  It was nagging at my heart and so I shared it in a prayer, "God, I thank you for this pregnancy and for the health of the baby inside me.  I want you to know that I would be honored if you chose me to carry a child with special needs" Wait, what?! Did I mean that? I couldn't erase the thoughts from my head and it bothered me. After I prayed this prayer, I dug deep into my soul to try to grasp what I just secretly uttered.  It's almost as if God wrote these very words onto my heart, in that special way He does, to help prepare me for what was to come...fast forward 5 months, my sweet child was born premature with excess fluid around her brain....fast forward 2 more years and I heard the sentence, the one I secretly feared but clearly always knew was coming, "your daughter has autism". God was preparing my heart before Bella existed, He was showing me how to love those who are different, those that need a bit of extra love.

Parenting A Child With a Disability...
Being the parent of a child with lifelong disability is challenging.   My daughter has made many behavioral and cognitive gains but she is still far behind her age. I must think 10 steps ahead for my sweet girl to help her "make it through" daily tasks.  I sleep less, clean more poop than you can imagine, bake special foods for a special diet, organize supplements, plan ways to attend outings so that we have an escape route, must travel to places in town taking the same turns or tantrums will ensue.  I shed tears of joy and sorrow in the same moments.  I am so proud and so frustrated all at once.  I often feel alone yet so bonded with others.  I ponder heavy thoughts as I fold laundry or wash dishes....Will she grow to understand she's different?  Will she ever grasp how much I love her?  Will she marry? Will she become independent? I watch my peers have children who thrive and develop while I secretly worry who will love her like I love her... when I die?  This is the reality of special needs.  I feel honored to have been chosen as her mother because I know God created her perfectly just the way she is! I love her even on her toughest days because she is a part of me.  I cherish her tears as she tantrums because I know it's hard for her.  But you know what? You know what's harder than being the parent of a child with a disability? Having a disability! I cannot feel sorry for myself because I look into my daughters glassy blue eyes and see how hard she works every day.  From 9-5:30 she attends various school, speech, OT, and behavioral therapies.  That is not easy, especially when those therapies are meant to stretch and grow her.  She is my hero!

Love her the way I lover her....
So what does all this have to do with you reader?  This goes out to everyone, not exclusively teachers, school administrators, church workers, therapists, or even.... the random lady at the restaurant? One question I ask myself daily (as her mother) as I leave her in the loving care of others or go out with her around town, "Will this person love her today, the way I love her?" Listen, I know we all love our children more than anyone could love anything, but believe me when I tell you MY child is special.  Her existence is a miracle.  Her life was created to bring God glory.  At at all costs, I will protect her from the unforeseen in the world.  When you feel annoyed that she is screaming and it's hurting your ears, that's the least of my concern.....my heart is secretly breaking for her and I'm racking my brain thinking of ways to ease her pain.  Teachers, bless you.  You signed up for a difficult task teaching the youth of America.  I know you have a tough job with standards, parents, IEPs, (especially you special educators).  But, when you are tired....or have a "needy class"....please don't take it out on my child.  Yes, I KNOW her behaviors are tiresome and that sometimes she can be out of control, I live with her 24 hours a day.  I beg you to step into my shoes (better yet, into hers) and love her.  Remember that she works on her behaviors during and after school for hours.  Although she can't express it in words, she feels your negativity.

Love her.

This is not meant for anyone in particular.  I'm surrounded by teachers, therapists, church volunteers, friends, and family who all adore my child.  I am so thankful for these dear souls.  They give me the confidence to hand over what is most precious to me, a delicate flower....a rare gem, allowing me to trust, when everything inside me screams to doubt.  I want you to be "all in" with my child.  I want you to look forward to seeing her and even when she shows up frustrated--to keep smiling.  Your smile means so much to me and her.  It shows us that although she might give you a run for your money, you won't give up on her!

I strive to love my child, as Christ loved me.  It's the sacrificial love that 1 Corinthians 13 talks about:

4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

8 Love never fails...

Autism & Essential Oils

People! I have some amazing news! I became a hippie:) Insert peace sign. Bust out the pachouli oil and lets have a toast.

Just kidding, well sorta. 

With the diagnosis of autism becoming a part of our lives three years ago my research led me to the benefits of treating autism from the inside out.  Changing us from eating cheez-its and sour patch kids to a gluten, casein, soy, peanut, banana free diet and buying organic meats and veggies.  Before autism I was happy as pig in a peach orchard to spend my days eating Taco Bell all day long.

Well, this leads me to the day I truly became a hippie last month.  I ordered Essential Oils through Young Living. Yes, you have heard of them.  You probably started running when a weird oil lady (who smelled like pachouli) started telling you that "you can dab a bit on the bottom of your foot" and you will solve world peace. I'll be the first to tell you I was and always have been VERY skeptical of easy fixes in life.  Either way, I was contacted a few times by various friends who I trusted and cared for who had shared some essential oil testimonials on the benefits of TREATING AUTISM BEHAVIORS with the oils.  I was given some oils to try out, liked them then bought some of my own.... then I became a peace loving hippie.

THOUGHTS ON ESSENTIAL OILS AND AUTISM

1. We started on two oils: PEACE and CALMING (just like it says), and VETIVER (focus/anti-anxiety): We noticed a reduction in anxiety and loud outbursts.  She has received accolades from her speech therapy and behavioral therapy workers already as they are noticing a trend of better behaviors.  I didn't even tell speech we had tried to oils because I wanted an authentic response!  I then added LAVENDER (calming)  and VALOR (anti anxiety)

2. I immediately ordered a "Premium Starter Kit" from Young Living because there were so many other oils I wanted to try (and with this kit you get 11 oils in the every day oil collection and a diffuser for $150).  I realized if I were to buy each oil alone it would be much more expensive and PEACE/CALMING, LAVENDER, VALOR are all in this kit.

3. Oh and I use the oils on my baby to help build immunity (THIEVES oil) as it is gentle enough to put on her skin.  I also us LAVENDER for calming/allergies, and I've used PEPPERMINT to help her with congestion.  Bella recently came down with a fever of 105 for three days. I used many oils to help her and also doused my 6 month old with THIEVES to be sure she didn't get it...and she didn't!

Here are the oils in the kit and what they do:

Just wanted to share something I am excited about.  I won't try to sell you on this, I just had to share.  It's something that I was super skeptical about and was proven wrong.  I am excited to continue testing these oils and sharing our successes:) You can now smell me from a mile away!

Interested?  Message me!  I hold online meetings to explain them for my friends from afar, or can meet face to face and give you samples to try.  I'm all about trying to see if things work!

Want to order? Here's the website to do so: ORDER HERE

*The PREMIUM STARTER KIT is the kit to buy if you want to be a wholesale member (like SAMS CLUB)- 24% discounts!

Don't want to order? That's ok, you must not like hippies.

**CONTACT ME WITH QUESTIONS

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:)

God Cares About the Little Prayers: Adeline's Birth Story

God really does care about the "little prayers"..... you know the ones that seem so small and  lie deep within our hearts.

Since deciding to "try for another child" I have been overcome with the fear of the "what if's?"....

What if we can't get pregnant again?
What if we DO get pregnant again?
What if I am unable to carry another child to term?
What if Bella reacts negatively to a sibling?
What if I am not strong enough as a mother of two?

The list could literally go on for days and I've come to the sad conclusion that my list of "what if's" was a general lack of faith in God's concern for the "little prayers". Well, once I found out I was pregnant with baby #2, I began praying out my little prayers.  I was almost embarrassed to approach the throne of God with such meager requests....but then I remembered what the Bible says, 

Mark 11:24 

Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.

I am not naive to the fact that God is the ultimate authority on the the happenings of my life.  After all, He is the orchestrator of life and death and what comes and goes between the two.  I prayed for a healthy baby in Bella, and I received our Bella early, with complications, and later with autism....to God be the glory.  My prayers were not answered in the way I had formulated them in my heart.  My Father however, knowing that Josh and I were created for a child like Bella, in all actuality gave us a "special gift" we had not the words to ask for.  I cherish her.

So, that leads me to Sunday.... October 13, 2013.  The day our sweet Adeline was born.  She is now one week old and I wanted to share how God cherished and granted the "little" requests that were buried deep in my heart. 

I prayed for a safe pregnancy, and it was granted.

I prayed for energy to continue to be Bella's mom and it was granted.

I prayed for the fear of an early delivery to be taken away, and it was granted.

I prayed for a child full term, and she arrived fully formed.

I prayed for a fast and "easy" (ha!) delivery, and it was fast and furious and as easy and I could imagine a birth going.

I prayed for a healthy little girl, and Adeline was healthy.

I prayed that I would be able to breast feed, and I am doing it!

I prayed that when Bella met Adeline, she would be calm and joyful....and it was so.

I prayed that Bella would not regress due to the presence of our sweet Adeline, and she has not.

God you are so good.

I am cherishing the lack of sleep and quiet family moments we are having at the Earls house.  My husband is a rock and there is something super sexy about a man doing all of the household chores:)

Meet Adeline Mary Earls 

I wanted to also include a beautiful song I found this week which has been such a blessing to my heart as a new mother.  It's a rendition of the Lord's Prayer (the most beautiful one I've ever heard).

Boasting in my weakness...

1 Corinthians 12:9-10

⁹ But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. ¹⁰ For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

As I sit here, only a week (or so) away from giving birth to my second little girl, I reflect on the goodness of Christ's grace on my family.  This pregnancy has been a blessing (well, I could do without vomiting and generally being as large as a whale but I digress).  We waited over four years after giving birth to Bella to "try again" to bring a new life into this world.  I was so fearful to divide my attentions away from Bella's "special need".  I felt ill-equipped and weak.  God broke down those walls of insufficiency and placed a desire for another child on not only my heart but Josh's as well.  I am human therefore I was still tempted throughout this pregnancy to doubt God's providence in this new little life.  I doubted I could carry to term (which I now have, praise God).  I doubted the health and development of her little body within me.  Right now, I am praying through my fear of giving birth again and having complications like we did with Bella.

I sometimes doubt whether Adeline will be a typical developing child, and whether or not she too will have autism.

Goodness, I am a worrier....

But, God is so much bigger than my doubt.  When I feel these feelings I am reminded of the verses in the Bible that speak of a tender and careful Creator.  A Creator who plans all things in advance for the good of his people, even disabilities.  Bella is perfect the way she is and Adeline will be as well, no matter what!

Today I prayed that Adeline and Bella would become kindreds.  That they would share a supernatural bond.  That Bella would love her sister and feel a connection that could break down the walls of autism for the rest of her life.  I prayed also that Adeline would love her sister blamelessly, that she would have an extra ounce of patience and admiration for Bells.  I praise God in advance for hearing and answering these prayers. 

Motherhood is such a blessing, I still feel so unworthy! I am imperfect, yet God always seems to use the less than qualified to bring Him glory.....so here goes nothing.  Pray that I sneeze and the baby pops out...hey, it could happen?  Stinkin' Eve.

Adeline's Nursery!

One more week until our world changes!

Blog friends,

So much to say, so little time! It's about one week until the newest Earls baby arrives.  We are preparing for this newest blessing and praying that she and Bella become kindreds for life.  We are also praying for a safe delivery and for God to prepare Bella for this big adjustment in her little life!

Until I have more time to really update this blog, here's a video of Bella and daddy to brighten your day!  My little patriots! 

10 Things I've Learned in 10 Years of Marriage!

Marriage.

First, let me say I am one lucky girl.  It sounds clique, but I feel like I found a precious gem when I married my husband.  Not only is he extremely good looking (yes, I said it again) but, he also loves me unselfishly and loves our Bella (and soon our Adeline) more than any dad has ever loved a daughter.  He's so very passionate.  Yes, if you know him you know if he cares about something, he can't help but explode with passion about it, and I love that so much.  This passion allows him to "feel" like no man I've ever met.  It also makes him extremely sassy, as you know:)   I love that on the outside he looks and acts so tough, but on the inside, he is so sensitive to my needs and the needs of his family. He's precious.

Happy 10 Years Joshua Earls!

I was reading this morning and found this quote by one of Josh's favorites, John Piper (which was so appropriate):

Husbands and wives, recognize that in marriage you have become one flesh. If you live for your private pleasure at the expense of your spouse, you are living against yourself and destroying your joy. But if you devote yourself with all your heart to the holy joy of your spouse, you will also be living for your joy and making a marriage after the image of Christ and His church.

....so here's 10 things I've learned in our 10 years of marriage (and how I seek to "devote myself to the holy joy of my spouse" so to speak):

10.  You have to make time for each other, no matter what!  Some of our best times involve our daughter and family outings generally.  But, some of our most precious times have been when we set aside time for ourselves, to revisit the reason we fell in love (case and point, when we traveled to Disneyworld by ourselves....without our child...who does that?  But, it was the best week ever....we acted like kids and felt like newlyweds:) Oh and we visited Hogwarts (Harry Potter land, duh).

9.  You have to be able to say "I'm sorry" even when you feel wronged! Love is sacrifice.  Sometimes we have to sacrifice our pride and be the "bigger person".  When we fight, and yes....we do fight sometimes....we are both very quick to apologize, I love that about us.  

8.  You have to "know your spouse"!  What do they enjoy, what makes the happy, what "turns them on" so to speak?  Find out what makes them tick and try to do those things.  I know it's feels silly some times but do things that they enjoy even if you literally hate the very thing they love.  Josh literally HATES reality TV (because he's smarter and more godly than me...he, he) but sometimes he'll come and watch a silly dance show with me (he will offer a sassy running commentary but, he still watches).

7.  You have to put in the effort.  Guys, marriage is not momentary.  It's not easy.  Sometimes is actually sucks.   Yep, I said it.  If you have been married you know that it's not like you see in the movies (you wake up and your spouse walks in the room showered and gliding towards you with your favorite coffee drink).....usually there's a child running in who pees on your bed and kicks you in your crotch....and maybe a fart.

6.  It's ok to say the "hard things".  Honestly, some of the hardest times in our marriage have come when one of us says the "hard thing".  Essentially, we call the other spouse out on something serious that affects the marriage in some way.  Something uncomfortable that needs to be said but is hard to say.  I love that God set up marriage in such a way that we can "sharpen one another".  That doesn't mean that a spouse "goes to town" on their loved one and points out every thing that bothers them.... it means that, after much prayer and contemplation, a subject is broached that will be hard for the other to hear.... but necessary.  

5.  Pray together.  Pray for each other. We are sometimes good and sometimes terrible at this. We pray with Bella every night but we also "try" to spend time praying together.  My favorite thing about Josh, is that when he prays...his passion and emotion are so evident....

4.  Take time for yourself.  Wait, that is not what marriage is about?  Oh, why yes it is.  If you as an individual do not have time to recoup, refresh, and fellowship with others....you will lose a sense of "yourself".   You need a break from eachother sometimes...whether its a golf outing, a pedicure....whatever!  The hardest thing about being a military wife is when Josh deploys BUT it's in those times when we are apart, that we are reminded how much we LOVE being together.

3.  Touch each other.  Kiss, snuggle, hold hands, slap a butt cheek.... um... and "other things".  Guys, I know it's silly but no lie, it's God's design for marriage (well, I haven't read anything specifically about slapping a butt cheek but I digress...).  Men and women have unique needs that must be met....when they are not, the relationship suffers.  

2.  Stop being so selfish.  Stop thinking that you "deserve" this or that.  Life is hard sometimes.  Put the needs of your spouse ahead of your own and it will never fail you.  Do I do this all the time, heck no... but I know it works because God commands it!

1.  Communicate.  In the beginning of our marriage we did not communicate.  I would be secretly angry at him ALL THE TIME.  Sometimes I wondered how the marriage would ever work.  Then we learned how to communicate with eachother.  He learned that I need gentle communication, and I learned that he needed direct and loving communication!  

There you have it.  Oh, and just to help myself feel like a complete failure, I read Proverbs 31 to myself today (the same thing Josh read to me when he proposed to me over 10 years ago - telling me he saw these qualities in me---geez, no pressure right):

Proverbs 31:10-31

New International Version (NIV)

Epilogue: The Wife of Noble Character

^10 [a]A wife of noble character who can find?
    She is worth far more than rubies.
¹¹ Her husband has full confidence in her
    and lacks nothing of value.
¹² She brings him good, not harm,
    all the days of her life.
¹³ She selects wool and flax
    and works with eager hands.
¹⁴ She is like the merchant ships,
    bringing her food from afar.
¹⁵ She gets up while it is still night;
    she provides food for her family
    and portions for her female servants.
¹⁶ She considers a field and buys it;
    out of her earnings she plants a vineyard.
¹⁷ She sets about her work vigorously;
    her arms are strong for her tasks.
¹⁸ She sees that her trading is profitable,
    and her lamp does not go out at night.
¹⁹ In her hand she holds the distaff
    and grasps the spindle with her fingers.
²⁰ She opens her arms to the poor
    and extends her hands to the needy.
²¹ When it snows, she has no fear for her household;
    for all of them are clothed in scarlet.
²² She makes coverings for her bed;
    she is clothed in fine linen and purple.
²³ Her husband is respected at the city gate,
    where he takes his seat among the elders of the land.
²⁴ She makes linen garments and sells them,
    and supplies the merchants with sashes.
²⁵ She is clothed with strength and dignity;
    she can laugh at the days to come.
²⁶ She speaks with wisdom,
    and faithful instruction is on her tongue.
²⁷ She watches over the affairs of her household
    and does not eat the bread of idleness.
²⁸ Her children arise and call her blessed;
    her husband also, and he praises her:
²⁹ “Many women do noble things,
    but you surpass them all.”
³⁰ Charm is deceptive, and beauty is fleeting;
    but a woman who fears the Lord is to be praised.
³¹ Honor her for all that her hands have done,
    and let her works bring her praise at the city gate.