|Kylie: In her best "Pharoah Pose"|
... notice the orange nose? She'd had a lunch of carrots... YUM!
Every one of us has a unique and personal story. A story that no one else could even begin to tell. Each story has fingerprints, tear stains, belly laughter and the scars of all it took to learn the lessons we were supposed to learn.
When we are "in" the development of the story, it is hard to see the conclusion, the wisdom... we are simply trying to tread water, to breathe, to keep it all together...
But, later... later, when it is quiet all around you and life is still... when you think back and ponder on all that took place, you can't help but wonder... Did I do well? Did I reflect my values? Did I make good decisions? How did others view my actions? I wish I could have done this differently or I wish I had said that instead...Was I a warrior for the weak? Did I defend the rights of those who couldn't? Did I make hard choices? Did I walk the road of loneliness because it was the right thing to do?
I find myself thinking a lot these days... I sometimes wonder how I got here... right here... In all my dreams and planning and pursuing... I never would have imagined that a big chunk of my future would lie in the world of special needs and autism.
I often ask God... "Why did you choose ME? I feel so tired and ill equipped to handle this and God there must be people who would do BETTER- who have it all together"...
I recently came across a paragraph in a book I was reading (about being thankful) that really caused me to look at my life and my choices differently. The author talked about how the Israelites were given manna when they were traveling in the desert after escaping from Pharoah (this account is found in the Bible as well- Exodus 16). I decided to do a little research on manna and the events that transpired around its introduction.
In the book of Exodus, we learn about this group of people who live under terrible persecution by Pharoah of Egypt. They were God's chosen people and Pharoah was so worried about losing his kingdom (one of the largest and most beautiful in the land) that he decided to impose even harder labor and population control to be sure that these poor slaves would not overpower his people simply because they were larger in numbers.
Pharoah ordered that all Israelite boy babies be killed at birth. The midwives managed to foil Pharoah by making up a lie about the women giving birth before they could arrive to kill the babies. Pharoah, not being able to trust the midwives, commanded that the means of death would be to throw the tiny babies in the Nile River.
As a woman who waited 13 agonizing years to be a mommy, I cannot even fathom what that must have been like for the women of Israel. To feel those babies kick and hiccup for 9 months and then gaze on their precious faces for a few seconds before having the baby ripped from them and thrown into the drowning river Nile. The more clever women might have been able to hide their wee boys for a few months but in the end... their heart would be torn and the ache would be much deeper than the bloody waters of the great and awful Nile.
I give you this history because it is this same people group who later find themselves rescued from the grip of Pharoah only to be out in an open desert with no food and no water. They are being called upon to trust in a way that they have never had to trust before. I see the families with small children...every evening the wee ones crying for just a little drink and the mamas with an ache in their belly knowing they cannot provide what isn't there. First they watch their baby boys die and now, it seems these children will also die... can they bear any more???
And then... God steps in and provides water - not just water but sweet water. And then he provides manna. The word manna literally means "mystery" or "what is it?". This manna was an unknown substance. They had never seen anything like it, had never experienced its taste or texture... They didn't know what nutritional value it had ...
The Israelites had a choice to make... they were being asked to embrace the unknown, to eat a material that had never been tested in their animals let alone in humans. They were being asked to rely on a miracle to have their daily needs met. They could not grow it or harvest it... it was just ..there...and it was from...Him.
The Bible calls it "corn from heaven" or "bread from heaven". It wasn't the cheap bread from Aldi or the expensive stuff from Panera... It was from ...Heaven. They take the plunge and decide to trust and then they slowly put this manna to their lips- they inhale the scent of what smells so pleasant- and then they take a nibble.... they decide to put one foot in front of the other and ...try. Try the very thing that God has provided to maintain their life flow...
As frightened as they might have been... they made a choice... they picked up what had been given them, they gathered it up and they embraced it by savoring it.... and they found it SWEET and they found it GOOD and most surprising....they found themselves Fulfilled. They feasted on manna for 40 years!!
As I researched and studied this so common story... I really thought about my "manna"- my life place- my presence in the world of special needs and autism.
I remember when we first received Kylie's diagnosis... I can still see myself sitting in that clinic office just holding my breath hoping they would tell us she was a savant. That her unusual play skills only meant she was brilliant - a prodigy. I knew the alternative was the "A-word". I refused to allow myself to go down that road. I wasn't ready for that...
Soon enough we learned the truth. I remembered leaving the doctors office feeling frantic - my daughter was healthy, but how was I going to give her what she needed??? I knew NOTHING about autism. I didn't even know anyone who had experienced this... none of my friends who had babies before me... I needed information and I needed it NOW.
Was this the same frantic need that Israelite mamas felt when they needed food and water NOW for their children? Did they look at that expanse of sandy desert and feel as lost and unprepared as I did when I looked at the word autism on paper? When their future was unclear did they feel like I do as I imagine what Kylie's future will be? (and dare I admit it... what MY future will be?)
Did I view my "manna" as the gift that it was? My girl wasn't just a girl from a hospital... she was gifted to me by loving birth parents and ....she is the "corn of heaven"...
God laid out an elaborate plan for her to be entrusted to me. That wasn't an "off the cuff" decision... He planned it...He timed it... perfectly?
Really God? Is this why you had me wait 13 years to know the desire of my heart? Was this planned too?
And then I realize... I just called my life (with an adorable little girl who experiences autism) the "desire of my heart"... It flew by so fast, I almost missed it...
I want to mirror the bravery that was exemplified before me by the Israelite mamas when they made the choice to embrace the mystery- the unknown- a road less traveled- an unfamiliar territory, a future that isn't spelled out. Maybe I will have days when I complain as they did and grieve the One who provided such a lovely gift in the first place- I hope I don't. I hope I learn my lesson quickly.
I hope that our lives will be an encouragement to others. That we will be brave and true to what we know and believe about the One who provides everything for us... doctors, treatment, finances... the One who goes before us with family and friends... the One who directs us when we are advocating for our girl in the government, with insurance companies, in our churches, communities and in our schools...
I hope that people will see our transparency when we are tired and need to rest in Him, when we feel we are not equipped and run to His Word, when we feel alone and need His arms around us, when we feel exposed and vulnerable and need to reach out and ask him for help.
I hope that my readers will know what it is to have Jesus be your provider... the one who goes before you... the one who protects your child and perfectly plans your life. He CAN be trusted. He WILL prove Himself.
And may this blog be my "omer" - the piece of the story that I keep and treasure to share with Kylie one day. That God planned her. That everyone has struggles but that He will help her. That He gave us to each other. Sometimes we do hard things so we can share our story and glorify God. The multiple stories of how we have advocated and won, how she tried her hardest and improved.
Most of all, "embracing the mystery" means that you don't have to walk alone. It means you join a family of like-minded people who have also taken that step of faith and trusted in HIM for deliverance, peace and the knowledge that He will always be with us.
Because of HIS presence, we are able to withstand the reality of a world of Autism and Special Needs- even if we don't know exactly what lies ahead. We can accept the unknown in confidence because it is HE that goes before us and He has a perfect plan for every life he created.
"And the mystery,
that which made no sense,
'like wafers of honey' on the lips"
that which made no sense,
'like wafers of honey' on the lips"
(Ann Voskamp, author of One Thousand Gifts)
"The Lord will fight for you;
you need only to be still."
you need only to be still."
|One of our first family Pictures: |
Doesn't Kylie look happy?
So GLAD we "Embraced the Mystery"