Celebrating Daddy

Click to listen to David Bush's song

 "Jealous Love"

You can find more of David Bush's music HERE

Butterfly Kisses

Twirling with Daddy



Trying to teach Kylie to Curtsy



What Makes A Dad?

God took the strength of a mountain,
The majesty of a tree,
The warmth of a summer sun,
The calm of a quiet sea,
The generous soul of nature,
The comforting arm of night,
The wisdom of the ages,
The power of the eagle's flight,
The joy of a morning in spring,
The faith of a mustard seed,
The patience of eternity,
The depth of a family need,
Then God combined these qualities,
When there was nothing more to add,
He knew His masterpiece was complete,
And so, He called it ... Dad

Author is unknown

More to Ponder:

I'm Watching you, Dad

I'll need you, Dad

Brown box from "Heaven"

I believe that God makes families.



The first time we met Kylie- we hadn't slept in two days. 
Still, we were beaming!!



God chooses the perfect baby for each mommy and daddy. Sometimes, he makes families through birth and sometimes families are made through adoption.

In our case, we were brought together through adoption. Our precious Kylie was adopted at birth (but, if you asked me, I'd tell you BEFORE birth as we loved her fiercely before we ever met her).

4D Ultrasound 3 months before Kylie was born

18 months later, we learned that our family would also experience the world of Autism as our Kylie was diagnosed with the Autism Spectrum Disorder: PDD/NOS (Pervasive Developmental Disorder Not Otherwise Specified). Those big and intimidating words mean that our Kylie did not fall "neatly" into any one category but that she had multiple symptoms from all over the Autism Spectrum.



One of our first clues that we should suspect Autism



We would expect nothing less from a girl as creative as Kylie. She is uniquely and wonderfully made - right down to her diagnosis.

Once we knew her diagnosis and had resources in place, we threw our efforts into obtaining therapy for our girl. As the primary caregiver, it became my privilege to accompany Kylie to her appointments and to participate, support and supplement the therapy given by the professionals.

As a result, I have become a toy expert. I LOVE toys. Nothing teaches a child or is better therapy for a child than toys. I am constantly evaluating toys for their "therapy properties": do they promote making choices, strengthen fine motor muscles, encourage movement or pretend play? Will eye/hand coordination be improved? will social/emotional skills be enhanced?

Anytime Kylie shows a preference for a certain toy, I am like a hawk looking for the best way to obtain that item. I'll do ANYTHING to help my daughter in her quest to be her best self.

My favorite way to obtain therapy items is by recycling or up cycling (people donating things they no longer use, repurposing an item, finding it at a tag sale or making it homemade). I even pray asking God to help me find the toys that motivate Kylie to learn.

All this background to set the stage for my story about the Brown box from "Heaven" ...

Recently, Kylie has shown an interest in Polly Pocket dolls. Most moms get really frustrated with Polly Pockets because the pieces are so tiny, but there is much value in Polly Pocket dolls

1. They promote dressing skills
2. They exercise small/fine motor skills
3. They encourage pretend play
4. They require eye/hand coordination
5. They exercise endurance
6. The rubber helps with sensory sensitivities
7. The colorful clothing promotes color recognition, sorting and matching
8. If organized properly, they encourage good "clean up"/responsibility skills.
(my best tip: store the shoes in individual pill boxes.)
9. The different themed outfits encourage "world experience" (introducing, sports, dance, careers, family, pet care, swimming and etc)

When I saw Kylie's interest, I began to look in earnest for the dolls. As most of you know, to purchase one doll and an outfit it costs close to $10. Pretty expensive for a family who's primary monetary provider just went back to work after being laid off for 6 months.

I had done some writing during the winter (trying to earn some extra money for therapy toys) and had 2 articles published and a cover photo used. However, after multiple attempts to recover my promised salary, I have been unable to do so. I determined that I would turn this unfortunate situation/injustice over to God and have him work out the details. I had done all I could on my part without actually burning much needed bridges and also without compromising much needed networking. 

(Note: this was my second assignment with this particular publication and I was paid for the first, but have not received compensation for the second set of articles)

Fast forward to this week... I knew I couldn't go to the store and buy the dolls so, as it is garage sale season; I asked my friends on facebook if they would help me watch for the dolls.

I had a couple of friends who sent me Craig's list links, but after inquiring with the owners and they not answering my inquiries, I was beginning to get discouraged and was worried that Kylie's interests would soon change to something else (which is very common with kiddos who experience Autism).

The next morning, Kylie and I were "having coffee", as she likes to say, and I heard someone on my front porch. This usually only happens when I have ordered something and a box is being dropped off. I had not ordered anything so I felt really nervous to have someone on the other side of my front door (especially when my hair was still a rat's nest and I had not yet donned le brassier for the day- I know, a little too much info, but it is true and explains why my heart began to beat radically.)

I then heard my screen door slam and knew by the quiet, they were gone. I waited a few more minutes for good measure and then cracked the door ever so slightly. On the floor, was a brown box with my envelope mail sitting on top. I retrieved the items and settled onto the couch to inspect the mystery.

The box was a "Tastefully Simple" box and I don't know anyone who sells that product. The mystery grew even more. I then examined the box more closely and noticed it was addressed to Kylie (and her name was spelled correctly... have I mentioned how many times people call her Kaylee?)

I then tried to figure out the return address and was surprised to see that it was marked "From: Heaven" (and no return address)...


I cropped out our mailing address  =0)


My heart was beating radically again (but, this time, it wasn't because I had not yet donned my supportive undergarments)...

I had no idea what was in that box, but I knew that in my hands I held a miracle: a gift of love for my Kylie. The tears began to gather in my eyes and I had to blink them away so I could see to cut open the tape that held the gift in place.

When I opened the box, I found it FULL of Polly Pocket dolls, furniture and clothing. I knew it was from someone who knew my Kylie, as the gift was wrapped carefully within a vintage Disney Princess beach towel. (yes, we are ga-ga for Princesses in our house).

I showed Kylie, who was oober excited, but explained that I needed to give the dolls a bath first. As I dumped all the tiny pieces into my colander for the bathing process, a card fell out. On the front (which was hot pink - we are ga ga for pink at our house too) it said simply the word "love", the inside explained that the person who sent the gift had found the items at a garage sale and instantly thought of Kylie.

It did not pass my notice that not only had God met our "need" for additional therapy items, He did so ABUNDANTLY.

I had been hoping to find 2 or 3 dolls so they could interact with each other in pretend play... However, God had bigger plans for our therapy play. He provided in that treasure chest of a brown box.... not 2 or 3, but .....drum roll please.... 22 Polly Pocket dolls, clothes for all of them, a car, a table and a chair. Multiply each doll by $10 and you have over $220.00 of Polly Pocket dolls!! Praise God!!

While our story is amazing... (and WOW was it not only amazing but unexpected too), it was not the first time that God performed a miracle that was full of "shock and awe".

In Luke chapter 5 and in John chapter 21, we read a story about a few men who were fishing. They had worked all night and not been able to get a single bite. They pulled to shore and were washing their nets when Jesus approached them and asked them to go a little deeper into the water to cast their nets. The men, tired and worn from working all night, explained to Jesus that they had worked all night, but if he had a new idea for them to try, they would.

The men rowed into water that was "not far from land" but about "200 cubits" and cast their nets on the OTHER side of the boat.

They began catching fish and the sheer number of fish was so great that they had to call another boat to help them. The amount of fish threatened to sink the boat!! Their blessing was overwhelming!!

Luke 5:9 says:
they were "...AWESTRUCK by the number of fish they had caught, as were the others with them."

God doesn't just give blessings, he POURS out blessings in abundance.

He blesses to the point that we are so overcome with gratitude we feel overwhelmed by the emotion that comes with the gift!

God not only cares about Turkeys and Boogers (see my last post) but he also cares about Polly Pockets and a precious little girl, who is adopted, who experiences autism and who has a need to strengthen fine motor muscles in her little hands.

"Trust in HIM at all times; ye people, pour out your heart before Him. God is a refuge for us. Selah."

Psalm 62:8

The Booger We Will Never Forget

"Painful as it may be, a significant emotional event can be the catalyst for choosing a direction that serves us- and those around us- more effectively. Look for the Learning."

~Louisa May Alcott

I remember the day that my daughter made her first request. A therapist from Early Access was working with our 2 year old baby girl and, honestly, it was painful to watch. My daughter wanted a puzzle piece and the therapist kindly and gently refused my daughter her desire because she didn't use her words.

I remember sitting there feeling tortured wanting to scream at the therapist.

I was an expert (and still am) at anticipating my daughter's needs and meeting them before she had/has a chance to be uncomfortable.

I remember my daughter extending her sweet little hand and reaching for the puzzle piece. It was just out of her reach. She then began pushing at the therapist. She was getting more frustrated and more frustrated. Soon little tears welled up in her eyes. I could tell my girl was going to break down any second.

I felt so enraged inside; I wanted to shake the therapist! How dare she make my daughter cry over a puzzle piece! Honestly!! Is this really how we are going to teach her? I was quite upset! I wanted to gather my baby in my arms and shower her with puzzle pieces and hug her hurt feelings away.

I don't know how I kept my composure, but I made a huge effort to staple my mouth shut and sit on my hands. It took everything I had. I wanted nothing more than to rescue my girl (and throttle the therapist --- did I just say that?)

About the time that my daughter's tears were ready to drop on her precious baby cheek, the therapist said (for the 10th time...) "I ...want..." - the silence was deafening, but then, my baby opened her mouth and said very quietly "I.want.puzzle"

A bomb could have dropped in my living room and I wouldn't have been phased! I was so shocked to hear my daughter speak. I felt as though I couldn't breathe. In slow motion, I looked at my husband and noticed that we both were weeping. We embraced and rejoiced over what beautiful music her voice was!!

I have since wondered what would have happened if I had followed my instinct to rescue my girl. Would she be talking now?

"I am not afraid of storms, for I am learning how to sail my ship"

~Louisa May Alcott

It has been 3 years since that day and still my daughter has significant trouble communicating. 95% of the things she says are a form of echolalia or parroting (repeating phrases she has heard in movies, lines from books or etc).

It is heartbreaking. There is so much we want to know about our girl... what is her favorite color? Does she like her room? What does she want for her birthday? How would she like to spend a day? Where/what would she like to eat for dinner? How does she feel about things?

So many answers are locked inside our girl.

It is especially difficult when the general public are kind enough to try to interact with our girl. It might be the checker at Walmart or the greeter at church. It becomes Dan and My responsibility to "smooth things over" for these kind people so they are not embarrassed. We often tell Kylie what to say and she dutifully repeats it.

Though we did have one surprise: When we realized that Kylie was going to have difficulty with communication, we began to teach her sign language (http://www.signingtime.com/ - I can't say enough positive about this program). Kylie was a quick learner and we found that while she would not speak appropriately or in a meaningful way, she would sign. One evening, at Walmart, we were paying for our purchases when we realized that our checker was deaf. She signed to Kylie and - much to our surprise- Kylie signed back. The checker was completely shocked and it meant so much to her!!

Over the past three years, Dan and I have often wondered what Kylie's first APPROPRIATE and ORIGINAL sentence would be. Well, this past week we found out.

The three of us were in the living room and Kylie was trying to tell Dan something. He was clearly having a hard time figuring out what she was trying to say and she was quickly getting frustrated. He looked at me for help (As I care for her 24/7, I usually can follow/discern what it is she is wanting).

I realized she was saying something about "booger"... she was getting more and more animated and even I was having trouble... I finally took a step back and said "Kylie, tell Daddy what you want"... (then I prompted) "I want.." Kylie looked him right in the eye and said plain as day....

"I want booger out please!"

It was hilarious! Not only her choice of things to ask for, but the look on Dan's face when it dawned on him that she wanted him to PICK HER NOSE!!!

So THIS would be her first appropriate and original/meaningful sentence. I LOVE IT!

I am so excited for what is to come. (you can bet I am writing all of this down)

"Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead."

~Louisa May Alcott

As I have contemplated all of these happenings in our lives I am brought back to a couple of passages that have meant so very much to me over the years. They were a comfort to me when my husband was away for weeks at a time (in the military), during the pain and lessons learned through infertility, during our adoption process, during the 6 months that Dan was unemployed and now as we walk with our Kylie experiencing Autism.

Romans 8:25

"But if we hope for that we see not, then do we with patience wait for it"

Proverbs 13:12

"Hope deferred makes the heart sick, but a longing fulfilled is a tree of life"

and

Jeremiah 33:3

"Call unto me, and I will answer thee, and show thee GREAT and MIGHTY things, which thou knowest not." (emphasis added)

As a believer, I have great personal faith in my God. To some, it seems simplistic, but when you have seen what I have seen.... well, let me share just one (quick) personal testimony....

When I was a teenager, my dad lost his job. I am the oldest of four children and my mom had always been a stay at home wife/mom. So, when my dad lost his job, we had no income.

I remember when thanksgiving came that year, my mom was particularly disheartened as we did not have the typical thanksgiving groceries required to prepare a traditional dinner.

We kids, were pretty unaware about what was going on, but I remember one afternoon my mom gathering us on the couch and explaining to us that we had no food for thanksgiving and that we were going to pray for a Turkey.

At the time, I initially felt a bit of shock... Thanksgiving without a turkey? and then I felt a little sheepish... we were going to pray for a turkey???

I remember making a conscious decision to go along with it and just see what would happen. (even though I didn't really believe that God would care about something so silly).

The 5 of us, my mom and we kids (age 4 to 15) lined up on our knees and asked God for food. Not just any food, but thanksgiving food - in particular- a Turkey.

When we were finished, I still felt embarrassed and rather sheepish.

We went on about our day.

That afternoon, there was a knock at our back door. It was a preacher friend of my dad's who lived really far away. My mom was completely shocked to see him and, even more so, that he had thought of us (as our paths didn't cross often). He explained that their family and church had been praying for our family and God had led them to bring us a box.

Yes, you guessed it... In that box was everything we needed to make a traditional Thanksgiving dinner - especially a turkey.

My faith changed that day.

I saw that the Great BIG GOD we serve cares about the insignificant, silly, desires of our hearts. That GREAT BIG GOD made sure that HIS KIDS had a turkey for thanksgiving.

If God cared about a turkey, how can I doubt that he cares for my family now? God knows what our Kylie experiences. He hasn't forgotten about us. He is working to show us "GREAT and MIGHTY things" that we cannot even fathom.

He even loves us enough to give us a bit of blessed laughter in the form of Kylie asking Dan to pick her nose! My GOD has a sense of humor - and we will laugh about that for years to come!

Thank you God for your GIFTS (even if they are in the form of a turkey and boogers)!!

"He who believes is strong; He who doubts is weak. Strong convictions precede GREAT Actions"

~Louisa May Alcott

P.S. In prep for this blog post I did a little "booger research" and learned that there is a "Booger Hollow" in Arkansas (population 7 - including a coon dog). They even serve a "booger burger" at the local diner... I can't wait to visit!! Check it out... http://users.aristotle.net/~russjohn/attractions/booger.html

All about me: (Princess) Amy

I have had many new friends join my blogging community in the last few weeks and for the most part, we have never met personally, so I thought it might be a good idea to share a little bit about myself.

In a nutshell.... (ha! ha! ha! - you'll see how funny this is in a minute)

I am the oldest of 4 children (3 girls and then a boy) - my mom calls us her "Little Women" (my brother, though the prince of the family, gets mad that he is left out of that description).

I grew up a preacher's kid, married a paratrooper, was a military wife (and due to various deployments, was alone about 6 months of the first year I was married. Not an ideal start to have, but, I assure you, the other 6 months were pure heaven- you can uncover your ears and stop muttering "get a room", I won't elaborate!)

-so much for my nutshell- I pretty much set myself up for failure as I am notorious for my longwindedness- hope you'll stick with me though...

I love to scrapbook, surf on facebook, watch movies, play boardgames and try new Restaurants.

I have experienced infertility (and still do- it has been 18.5 years at press time - for anyone who has experienced infertility, you know that every day, hour and minute counts).

My husband and I adopted a precious baby girl at birth (and was part of her life the majority of the pregnancy). My daughter, Kylie Mattea, was later diagnosed with an autism spectrum disorder.

I have been married for 18 years and am so GLAD we had 13.5 (honeymoon) years to build a FOUNDATION AND STRONG MARRIAGE before we were put on the path of special needs parenting... it is HARD but God is GOOD and we are THRIVING.

We live in a tiny little house, built in 1891, that we named "Brighten Corner" (from the old sunday school song "Brighten the Corner where you are...") - it's pretty much a money pit, but we love making it ours.

We love to vacation (especially at Disney World but would pretty much go anywhere).

I love to read and my husband enjoys when I read aloud as we travel or ride in the car.

I used to work in the Corporate World in Resource Management and Communications, but now I am a poor (financially) stay at home mom who is wealthy beyond measure (and who, someday will receive a GREAT inheritance in the Kingdom of my Heavenly Father God)

I am a member of First Federated Church (I know, what's a "federated"?- basically a baptist without all the rules. We can wear swimsuits to church if we want... no one has tried, but we could...) I serve with the women's ministry (one of my duties is coordinating the facebook page... check out "Cafe Bella FFC")...I am also mocked frequently (all in good fun) because I love the color pink... (The concensus seems to be that pink is "dated" - does that mean I am old? still trying to figure out that one...)

My husband and I coordinate a program for International Students at Drake University (we pair each of them with an American Family who will introduce them to our community and to american culture. We have about 200 families and 350 students. We LOVE "our kids" (ahem...young adults) and pour our life into theirs....and drive them crazy with hugs!

I have also recently agreed to support my good friend, Heidi, in coordinating a
Bible Study/Support Group for moms of special needs kids (a group that has blessed me immensely over the past year). We have BIG shoes to fill as our friend and former coordinator, Melissa, has recently moved with her family to Louisiana! I am excited to work with Heidi to meet these dear ladies where they are and help them grow closer to the Lord. (We moms of special needs kids seem to have a ton of questions for God... don't worry, He's not too busy for us - he created us to be chatty - right?)

If you haven't guessed, I LOVE TO WRITE. If I had a dime for every person who has told me I should write a book about my life (a lot has happened in my short life - yes, I still think I am young at 38), my husband could stop working for at least a couple of years. And...truly, my greatest dream is to write a book - though blogging is pretty great too!

My very dearest friend has 4 children and I have often thought we should co-author a book called "Friends through Fertility" as SO MANY of our friends fell away from us when they started having children (and we remained childless). My sweet friend hates to type, so it might not ever happen, but I may convince her someday. She's pretty awesome.

I have been published a few times on Examiner.com, in Iowa Spectrum Magazine and I am a monthly guest blogger on author, Jolene Philo's website www.differentdream.com (her second book "Different Dream Parenting" will be coming out this fall)

What is my blog about? Unfortunately for my readers, my blog is about a (very) flawed, transparent princess of the KING who wants only to be her best self and help others. I also write about Autism, Family Life and my gorgeous gift from God: Kylie...

If you can handle all of the above, I'd love to become your friend and learn more about YOU!!

Come visit me often at "His Treasured Princess" (I LOVE to put my feet up and sip me some hazelnut coffee or iced tea with lemon). Can't wait to connect with you.

"Stay...is a charming word in a friend's vocabulary." ~Louisa May Alcott

HAPPY (AND NOT 70)

I am sitting in a quaint little coffee shop - one of my favorite places to be and I am battling. My heart and my head (and a little bit of my faith) is at war...

You see, today is Mother's Day and it hasn't been all that I dreamed it would be.

My daughter woke up with a rash all over her body. (We are pretty sure it is allergy induced as we spent a good bit of yesterday at the Tulip Festival in Pella, Iowa.) Because of it, we missed church and resorted to giving Kylie a dose of Benadryl (which usually does the trick).

About the time we thought Kylie was feeling better, we decided to try to go to Perkins. Long story short, we ended up having to leave the restaurant as Kylie couldn't handle it. What set her off? Could have been the lighting, the sound the smell... could have been the people, we just aren't sure.

However, we can rejoice that two more of the world's population are now educated about Autism as I took the time to have a little "classroom time" with the two elderly ladies sitting across the aisle from us who just couldn't keep their thoughts to themselves. They felt my daughter shouldn't be so demanding and "specific". (Don't worry, I was kind)

Once in the car, we asked Kylie if she would like formula (she had eaten next to nothing and we were pretty sure her hunger was "feeding" the meltdown). Kylie said yes, about the same time that the mom of the year (ahem... me) discovered that I had forgotten to pack the "formula cup".

So, being the creative survivor I am, I dumped Kylie's "iced tea cup" (the buzz lightyear cup) and poured the formula into that...When Kylie was presented with the Buzz Lightyear cup, she noticed that it was formula white vs the brown tea color. Even though she wanted the formula, this slight change catapulted the princess into phase 2 of the meltdown...(can you see how this day is going?)

So in our best "Dave Ramsey Mode" (afraid not) - trying to desperately save a shred of mother's day, We headed to the nearest Walmart to buy - yes BUY, Dave, the "correct" sippy cup for formula so we could feed our daughter (or more correctly, so the princess would take the sustenance).

(I'm telling you, Dave Ramsey would have to write a new book if he lived my life)

Back to my battle...

Dan approached me on Mother's Day eve and presented an idea to me about how we should spend the following day. He wanted to take me out to eat and give me some alone time in a coffee shop so I could write, update my blog, read email or whatever I felt like doing... HEAVEN in a nutshell to me. I rarely get time alone.

I knew in my head that having a plan was probably not a good idea, but I wanted so much to experience a normal day...

As I sit here, I am struggling with my thoughts... "Why God? Why TODAY? Why is Kylie having such a hard time? Can't I just have one day? one afternoon? What in the world can be the good in this?"

The Holy Spirit keeps bringing this verse to my mind: "THIS is the day the Lord has made - Rejoice and be glad in it" (Psalm 118:24)

"THIS is the day the Lord has made - Rejoice! Be glad in it!" - that is a super easy verse to throw around when things are sunny, happy, celebratory. Would I find comfort in it or even address OR acknowledge it for a day like today? a day when things are less than perfect or dreamy?

As I was discussing this with Dan - my Prince Charming and a man who really TRIED to give me "a day", I got all choked up over the phrase "THIS is the day the Lord has made..." - God made THIS day in my life and this was how it was SUPPOSED to be! It was not a fluke or an accident. This day was INTENDED for me.

THIS day and ALL my days are intentional!!

WOW... chew on that for a bit!

Mother's day, in all reality, has never been the way I wanted or dreamed it would be...My story has ALWAYS been unique. I mean, everyone has a unique story, but most mom's celebrate Mother's day in a normal way... mine has never been normal.

I remember 10+ years ago when Mother's day was such a painful day for me. I REMEMBER. AND still, today, my heart aches for women who long to experience motherhood. I will never forget.

In some ways, my experience is still difficult. This week a friend of mine posted on Facebook that her son made her a card in preschool and when asked how old she was, he answered "70" - that was so cute and so funny, but when I read of that "typical preschool experience" my heart sunk...would Kylie ever make me a card? I turned to Kylie and asked "Kylie, how old is mommy?" and Kylie replied "happy!"

This morning, Kylie approached me and said "Excuse me, Do you need formula?" (She meant... Mommy, I'm hungry). I had hoped for "Happy Mother's Day", but at least she CAME to me. I rejoice in little things. Things that most take for granted.

I have learned that I only see bits and pieces of the picture. Only GOD has the comprehensive and complete view. I am only a PART of HIS plan- a single color in the artwork of life.

I wonder what people see when they become a voyeur of my life... Have I made a choice to rejoice and be glad? Do I play the martyr or victim? Am I transparent and real or am I sarcastic and ungrateful?

Do they see how much I truly love my life? (even though it is different from how I ever thought it would be? and even though sometimes it is really hard?) Do they see that my precious girl makes me such a better person, how we laugh as we stumble through life as a family, and how we LOVE AND TRUST the plan that GOD has for us?

This is the thought process that I go through when I try to understand the life lessons God is trying to teach me or how those very difficult lessons work for HIS GLORY to help others.

Do you see how easy it is for me to laugh and cry all in the same day?

Today has been a hard one emotionally for us. We WANTED something completely different, but while we grieve what could not have been, we know and have FAITH that God wants only our best and are comforted that the day is not yet over....

His mercies are new every day!!

Today I will rejoice that, in my sweet Kylie's eyes, I am HAPPY (and not 70) =0)

Happy Mother's Day to me and to all of you!!



P.S. How did I end up in a coffee shop? God extended mercy and grace and allowed Dan to take Kylie to play at Pottery Barn kids (want to read more about that? Read the very first post I ever put on this blog: "Twirl With Me Mommy" click here... Story about Kylie and Pottery Barn Kids: Twirl With Me Mommy

I Hope You Dance...

**Be sure to scroll to the end to enjoy the very special slideshow we created to document this occasion**

A quiet hush fell over the room.

Families and friends adjusted their camera lenses and prepared to capture the moment. The parents stand all in a line, each heart hammering in its chest- the sound: like thunder in their ears. Without consciously thinking about it, they hold their collective breath. The anticipation and fear of the unknown is enough to suffocate.

My little girl stands in the center of the room, her tiny hand tucked into the very capable hand of her helper (and now, friend): Maria. And yet, I worry that my fragile girl is scared, that she is nervous, that the crowd will frighten her.

In these last few moments, I desperately try to make eye contact with her. I need to know she is ok. She looks past me many times taking in the new scene before her - the new room, the number of people, the new costumes. Finally, her eyes rest on me - a sob catches in my throat.

I have to fight furiously to keep from spilling the tears that I feel welling up in my eyes.

The music begins and though the performance is only 3-5 minutes long, I find myself reliving the past 5 years.

I scroll through the day I learned she would be mine- the elation, the fear. I remember the day we first met- how fiercely I loved her and how I would die to protect her. I feel the pride we experienced when we introduced her to the world. I hear her baby voice as she cooed and giggled over the ceiling fan (fanny) and the chandelier (lumie). I recall her fascination with mirrors and how she held her head up so early. I remember how she practically skipped crawling altogether and "humped" to a walk - at 10 months. Always early in her milestones. Such a beautiful baby, she stood out from the beginning.

And then, I remember her struggle to sleep, the reflux that kept us homebound, the meltdowns, the anxiety, the rigidity, the organizing and lining up of toys, the inability to communicate.

And then, I feel the stares of all the people who didn't understand our method of parenting, or who couldn't fathom carrying a child out of a store kicking and screaming because the lights were too bright, the sounds too loud.

I relive the moments of sensory difficulty, her clinging to the door frame to avoid being immersed in water for a bath, blacking out rooms to sleep, hiding behind me because she was afraid of people, pleading with her to take just one bite of food.

I remember the fear when we learned she would experience Autism- Forever... How would that affect her life? How would it affect mine?

I feel the weight and pressure of knowing I would have to educate those around her and pave the way for people to accept and make accommodation for her- it feels so heavy. Can I do it? How will I do it?

How do I keep my sanity when every obstacle is in our path? How do I keep moving forward when every single step is a fight?

So many things fill my mind as I watch my girl...and the one thought that dominates over it all is that I am AMAZED.

My precious girl is out there, she is a fighter, she is a quick learner and she is trying. She feels like a princess and does her best to dance like her Maria.

All of this consumes me during her short performance - it seems impossible, but it is true.

We are so grateful to Dance Without Limits for giving Kylie this opportunity and experience. It is a dream come true - not only for her, but for us as well. We so did not want her to have to give up or miss out on  typical little girl pleasures because of her sensitivities to light and sound, people, crowds and other factors.

Dance Without Limits is a division of Ballet Des Moines. It is a ballet/dance class for children with special needs who otherwise would not have this opportunity. Each child is assigned at least one ballerina helper (usually a teenage girl or other adult volunteer) that works directly with that child. It is wonderful for forming a trusting and anxiety free bonded relationship.

The classes meet once a week (usually a Sunday Afternoon) and the children learn basic ballet moves in language they can understand and relate to. No child with special needs is turned away.

Dance Without Limits also has a Physical Therapist on hand to monitor the children and be available for various needs.

At the end of the season, there is a recital. Family and friends are invited to attend and the children are given costumes that have been donated by caring and generous donors. The parents bring snacks for everyone to share.

The children perform for 3-5 minutes and then the ballerina helpers wow us with their dance skills. It is impressive and just short enough that the children do not become restless.

Afterwards, each child is presented with a pinwheel and a Tshirt signed by all the dancers.

It is an amazing experience.

For our family, specifically, this was the first time that Kylie was willing to leave us. We were thrilled when she would take Maria's hand and go into the studio. And how we loved watching through the window.

Monika Peltz is a superb teacher who is incredible with these children. She and her helpers are of the elite in the Des Moines area.

Dance Without Limits is also very accommodating...they accept each child just as they are. For example, they did not care one bit when Kylie refused to wear her dance clothes and instead showed up in a "Pinkalicious" dress up dress. Nor did they care when she carried in a large, hard-back fairy tale book (which had to stay right next to her the entire time - (as a comfort object).

I believe that those are the very things that made all the difference in whether this program was successful for Kylie or not. She TRUSTED them, because they accepted her exactly as she is.

This season's session is now over, and our entire family is in mourning. It was a positive experience for all of us. We can't wait for fall and are super excited to make even more memories.

I remember how afraid I was the very first day we arrived and I know the confidence and trust I feel for them now having experienced all that Dance Without Limits offers. My daughter is in the very best, loving, caring and generous hands that I can imagine!

I hope you will enjoy the slideshow I put together about our experience with Dance Without Limits (Music credits go to Kutless and Janelle)

click here to watch the slideshow:  (Let me know what you think) Kylie's Dance Recital - 2011 Dance Without Limits- Spring

For more information about this program, you can access this website link.
Information about Dance Without Limits

One Thousand Sleepless Nights

Laura Story's Song:  "Blessings"

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What if your blessings come through raindrops? What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know you’re near?
What if trials of this life are your mercies in disguise?
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Those are some really hard, soul-searching questions to answer. 

I encountered them when a friend of mine, Rebekah, posted the link to this song on facebook.  I have found that Rebekah and I have quite a bit in common concerning our taste in books, music and etc. So, when I saw that she had posted this, I was eager to listen to it. 

I sobbed through the entire song!!!

 I had no idea the reaction that I would have to the lyrics of this song or how they so closely mirrored thoughts and feelings of my heart- even the aches and pains I have groaned about repeatedly to my Lord.

Please read my post, but most of all listen to the song and then read the lyrics (at the end of this post).

     Based on the calculations of my accountant husband, I have experienced 1,645 sleepless nights.  That pretty much encompasses the past 5 years (minus the first 6 months of my daughter's life when she and I both slept like a baby).

From the age of 6 months, my daughter has been up 2-3 times every night.  She has to be medicated to even fall asleep.  Once she wakes, she has an even more difficult time going back to sleep.  If we are lucky, our family will get 3-4 hours of uninterrupted sleep and then we are up again.  We have been living this cycle for 5 years!

I can't even put into words what it is like to be so sleep deprived- to feel so "out of your body".  The thing that is so difficult for me is that I waited a LONG time (13.5 years) to finally be a mommy and I want SO MUCH to embrace every moment I can with my precious girl.  I want to feel refreshed and alive and full of energy but most days I feel exhausted, tired, fuzzy and like a limp dishrag! The human body simply wasn't designed for such a sleep-deprived hardship!

While the lack of sleep is so draining on this mama, my Kylie doesn't seem to be affected at all!  She wakes up with a smile on her face if she has 2 hours sleep or 5 hours of sleep.  I don't know how that is physically possible, but it is a blessing to me and I am so thankful for it!

When I am so tired, everything affects me in a sensitive way.  I break down easier, I cry easier, I have trouble making decisions, I have difficulty multi-tasking (something I thrived on before), I move so slow, I gain weight (because I am too tired to make and clean up a decent meal and too tired to exercise), my friendships are sorely neglected if not gone altogether (and I don't blame them, I wouldn't put up with me either), my home suffers as I don't last very long in cleaning mode, and my relationship with the Lord is well...

It is hard to describe - honestly and publicly what my relationship with the Lord looks like these days.  On one hand, I love him, I trust him, I know he has a plan, I believe he will take care of us. 

On the other hand, I ask him a million questions: Why don't you heal Kylie?, Is this why you made me wait so long to be a mom? What is your plan? What will her future be like? Is this hardship going to be forever?

Or, it is me telling him/often begging him for what I want: Father, please help her sleep, Please help her stay asleep, Please help her go back to sleep, Please help the neighbor to park down the street so my girl doesn't hear his LOUD car, Please knock out the street lamp across the street so it won't shine in our window and wake up my girl, Please help me stay awake so I can have some quality time with my husband, Please help her learn to sleep through the night so we can eventually have a weekend away...Please, Please, Please!!

Or, as I am rocking my baby at night, and my tears soak her blanket,  I am breaking down/complaining/comparing our life to the life of other families who seem to have it so easy!  God, have you forgotten about me? What have we done to deserve this hardship? Heal my girl- Have mercy and help her sleep!!  What do you want me to do to fix this? What are you asking of us?

Or, when I am completely spent and am beyond myself...

... It is in this place of desperation that I praise God and thank God for the GIFT he has given me through over one thousand sleepless nights. 

What a pleasure it is to hold my Kylie's body against mine (way past the time that most mommies are given). To feel her fist wound tightly in my hair, to feel her warm breath on my cheek, to have her arms wrapped around my neck, to feel her little heart beat against my chest, to rub her back the way she loves so much, to breathe in her snuggly baby scent, to rock gently to the rhythm of the night... and to commune with my Savior - who is always with us - holding us tight in his very capable hands...

God's greatest gift to me is that I get to hold my baby a little while longer and that is what often gets me through.  It has made all the difference. 

My healing HAS come in tears (and a lot of honest communication with my Heavenly Father) and He DID bring me closer through one thousand sleepless nights!  I wish it hadn't taken that, but it did, so I realize now that the trials of our life really and truly are his mercies in disguise.  Things really could be so much worse than they are.

Laura Story's song, Blessings is the story of my life the past 5 years, though she didn't write it for me.  Laura wrote the song for those like me (including herself).

 Laura has her own story of questioning, complaining, begging and ultimately being thankful - Her husband was diagnosed with a brain tumor after they had been married for only 2 years - hope you will learn about her story via http://www.laurastorymusic.com/)

One thousand sleepless nights... I never thought that anyone could ever understand what that is like - and here it is, included in the most beautiful song.  What a BLESSING it has been to my tired soul.

BLESSINGS
Laura Story

We pray for blessings
We pray for peace
Comfort for family
Protection while we sleep

We pray for healing
For prosperity
We pray for Your mighty hand
to ease our suffering

And all the while
You hear each spoken need
Yet love is way too much to give us lesser things

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt Your goodness
We doubt Your love
As if every promise from Your Word is not enough

And all the while You hear each desperate plea
Lord, that we’d have faith to believe

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not
This is not our home

Cuz what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know you’re near
What if trials of this life
Are Your mercies in disguise?