Lilli

Lilli

Saturday, August 16, 2014

Reality Versus Hope and Faith: Why I Choose Crazy Hope

I’ve been thinking about the concept of “reality” lately.

I realize that some may have thought over the years that I am slightly out of touch with reality. All you have to do is look at us from a short distance, and my hopes and dreams for the future will seem ridiculously out of reach.

For example, in the past when I have expressed the hope that Lilli will speak again one day, I know that there are some who feel sorry for me, because they think that, realistically, it will never happen. This is based on well known, research-based statistics that say that if a child does not talk by the age of six, they will never talk.

Well I don’t care one bit about that stupid statistic.

If you just read that last sentence and shook your head, thinking, She’s nuts. She can say that she doesn’t care about statistics and reality but that doesn’t mean they are not true, well, this blog post might irritate you all the way through. Because I am going to try my best to explain our view of reality... and crazy hope.

I am pretty sure hope and faith would not make sense to someone who is focused on reality all the time. It is a completely different perspective on life. Am I saying that I live with my head in the sand, completely out of touch with reality? No. I am choosing to focus on hopes and dreams instead of setting my sights on what is right in front of me, and on what others think is realistic.

I have hopes for Lilli that do not make sense to others. I hope that Lilli will do certain things independently one day.  I hope many things for Lilli.

Here is a list of some of my hopes and dreams for her: (many may seem lofty...or "unrealistic")

  • That she will talk. Any words at all. She used to have a list of words. I dream that they will come back. Very often she will "say" something and it sounds so much like a real sentence - real words you can pick out...but just garbled up. 
  • That she will be completely independent when using the potty.
  • That she will type completely independently, and read independently with some sort of e-reader. I mean hold it and read it herself.
  • That she will feed herself with utensils – an entire meal.
  • I hope she will help around the house one day and complete simple chores like picking up clutter and wiping the table.
  • I hope she will dress herself, even if it’s in an elastic waistband pair of shorts and a pullover shirt with no buttons.
  • I hope she will put on her own shoes – even if they are Velcro or slip ons.
  • I hope she will participate in a class at a school and work on grade level to independently complete challenging academic work, even if it is adapted through a computer or on an ipad. (Right now she is doing this with help.)
  • I hope that one day, she will have real friends that she can communicate with independently and spend time with. I hope she will learn new activities and be able to participate in them independently with satisfaction.

I used the word "independently" a lot. Which is not very realistic, because she really isn't independent with much at all...right now.

These are things I hope for, whether others think they are unrealistic or not. How can I not hope for these things to happen one day?

I don’t really care if other people think I am focused on goals that we may never attain. All of the goals we have ever had for Lilli have been "unrealistic" in someone's eyes. Way back to when she was in the NICU and had a feeding tube in her nose and I still had lofty dreams of breastfeeding her. She had so much trouble even taking a bottle. I remember sobbing and sitting on the couch trying to nurse her for two weeks after she came home, so extremely frustrated. 

It took a long time, but she finally got it. I was crazily determined. And then I nursed her for two years. 

Then there was the speech therapist who said, "I don't think Lilli understands that a picture represents an object," when I asked if we could try the picture communication system, so Lilli could have some way to tell us what she wanted. We tried an experiment with pictures on a board. Lilli would not pull the pictures off. She just sat there and cried. 

We could have given up then. But we didn't. We found other therapists who shared our hopes and kept trying... and eventually, Lilli "got" it. She used the picture exchange system for years until we got the ipad.

I see everything else Lilli has ever learned in her whole life as being just that way. Taking forever, seemingly impossible, with some other people sympathetically saying, "It's ok, she's different, she just can't do this, and it's OK."

No. 

That's not how it is with Lilli. Lilli is like climbing a mountain where you cannot see the top. I don't know how big the mountain is. I don't even know if we will ever get to the top. But we still have to climb. Otherwise we'd just sit on the side and cry.

Would you think it would be better for me to just say, “Well, that’s it. We tried for a few months, but she just doesn't get it. I have to be realistic, she has brain damage, so I guess we will just put her in an institution and move on. Oh well.” 

That's how I feel sometimes when people think "realistically."

Reality

I'll focus on reality with Lilli for a moment. All of those goals I listed above that I hope for, well, they might sound crazy. Because she’s not even close to any of them. Just not even close.

If I were to look at my life with stark reality right now, I would say these things:
Lilli cannot talk. She has brain damage. She used to say words when she was one, and then they all disappeared. 

This is reality.

Lilli has been potty training at the pace slower than glaciers melting, for the past seven years. She has absolutely made progress. But she is nowhere, nowhere near independent. This is reality.

Lilli does not feed herself, dress herself, put on her own shoes, complete household chores, or complete schoolwork independently. Reality is that we help her do every single small thing all day long, and very often, that depresses me and exhausts me. I have many moments every day when I sigh to myself and feel utterly defeated. 

Like climbing a mountain, indeed.

Reality is that Lilli does not have any friends that she spends time with. Lilli has never had a playdate. She does not have friends that call. She has never had a “friend” birthday party. We would not know who to invite. She has never been invited over to a friend's house to "hang out." I really do not even know any other ten year old girls around here. Last week Chloe made my heart hurt when she looked at Lilli playing with Legos by herself and commented, "Lilli needs a friend."

Yes. She does.

Reality This Week

ABA therapy is over. It ended in July. All of the skills and goals Lilli has been working on for three years...right now the depressing reality is that Lilli is just not getting that therapy. It’s done. It’s done because the state says “You only get three years.” No matter what. So that’s it. We went from 29 hours of ABA therapy a week…to nothing. Even more depressing, our beloved therapist, Morgan, moved away to another state. 

School is starting in two days, and Lilli does not have a homebound teacher. Yet. They are working on it. 

Lilli’s beloved, wonderful homebound teacher of three years, Leslie, has just taken a full time position in the school, and we do not yet know what will happen with Lilli’s homebound program.

We just had three amazing years of intense ABA therapy with Morgan, and with Leslie, our fabulous homebound teacher coming every day, and now, all of that has changed. I do not know what comes next. I do not have a clue.

I am stumped as to how this school year should look. Every day I have waited on news from the school district, waited for the phone to ring...to know if Lilli even has a new teacher. Thursday, I got news that things are in the works. We just need to be patient. Maybe God will send us a new, incredibly awesome homebound teacher this year.

I really hope so. It's Saturday, and school begins Monday. 

These realities are difficult to type out. But they are truths. It is our reality.

For right now.

Hope Doesn’t Always Make Sense

The thing about hope and faith is, well, they often do not make sense. In fact, most of the time, it might seem just plain crazy to other people. 

I always look back to our past in order to learn and remember that hope always comes first. 

Hope comes before things become real.

If we all focused on reality - what we know for sure -  all of the time, what kind of depressing life would that be? We would never do anything challenging. We would never take risks. We would never dream or hope for something that seems out of our reach or completely impossible.

People who accomplish amazing things in life start out with crazy hopes and ideas, and often others think they are out of touch with reality.

And where do we put our hopes? If we put hope in ourselves, we will fail. Because we are human. No one is perfect. We all, always make mistakes. No one is even close to being perfect. 

If we put hope in other people, they will disappoint us. How many married people can say that they put their hope in their spouse, and they were deeply hurt or disappointed? How many can say that they put their trust and hope in their parents, teachers, friends, pastors, or some other trusted person in life, only to be shocked by hurt or deep disappointment? 

But I am talking about putting hope in God. Hope comes from God.  He made it. He gives it to us. We don’t find hope in ourselves. We don't find it in other people. Big, crazy, impossible hopes are easy for God. He can handle anything.

I hope for big, seemingly impossible things, because small hopes are “realistic.” When you hope “realistically,” you put parameters around your hopes. You see an end result in your mind that you think you can accomplish on your own. They are not really hopes, they are more like "goals." You are only hoping for something that you think you can control yourself. When people say, "I don't want to get my hopes up," I think that means they are afraid to hope, because they know they are unable to control the outcome themselves and they are trying to avoid disappointment.

Big hopes are for when faith is required. Big hopes seem crazy to others. Big hopes are for miracles. Big hopes are when you ask God for something, because there is no possible way on earth you could ever do it on your own.

Immeasurably More

This is a verse I have always loved:

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”
Ephesians 3:20

It is describing that God can do so much more than we ever hope. This is where reality is left in the dust. It’s not just “more.”

It’s “immeasurably more.”

It’s not just “what we ask for.” It’s “more than all we ask or imagine.”

When we only focus on our reality, there is nothing to hope for. But when we look at our hopes and our dreams, that’s where God steps in and surprises us, when they are things we could not possibly accomplish on our own. I might not think this way if I had not experienced it in the past. I think all of us have experienced it at some point in life, but some may just not recognize it.

What is something you hoped for, and then things in your life turned out way better than you ever even imagined or hoped? A better ending than you had ever even dreamed? Surely there is something.

This is how I look at the story of Lilli: it is not over yet. It has barely just begun, and I really have no idea what life will be like for us in ten or twenty years. We are only in the beginning chapters. I have a choice. I could sit down and cry about how I think she will never be toilet trained and how I might as well give up on trying to get her to type because she’s just not getting it and it’s not realistic to try and teach a child with autism and cerebral palsy to type.  I could give up on a lot of things, because they are not “realistic.” I could sob for weeks and just resign myself to the fact that she will just need to go into an institution for full time care and "this is my life.

Or... I could focus on my hopes and dreams for her, and wait to see what God has for us that is “more than all I can ask or imagine.”

Crazy Hope Makes a Person Look…Crazy

Here is just one story of how I learned about crazy hope.

Six years ago, this was our "reality":

We lived in Virginia. Jasen was a middle school teacher with a steady income and insurance coverage for our family. We owned a home. We had two children, and I was a stay at home mom. We were extremely frugal and were careful to make ends meet on his new teacher salary so I could stay home, because Lilli needed me home and I had baby Chloe. We had friends, belonged to a church, and had a routine. Life kind of made sense, in many ways. Jasen worked hard to pay the bills and care for the big things around the house and yard. I worked hard to care for our young girls and take care of all the things a stay at home mom takes care of.

Yet, things changed drastically. God sparked a dream in Jasen’s heart. We began to pray earnestly about making big changes. God was leading us in a direction that was completely unknown.  It seemed crazy! How could this be? Why would we “fix something that wasn’t broken?” Many circumstances brought us to this new perspective in life, and we were certain that God was leading us in a completely new direction.

These became our hopes back then:

  • For Jasen to take organic chemistry, apply to chiropractic school, and get accepted. 
  • For us to apply for and get gobs of school loans.
  • For us to sell our home (in a dead market, on a street with five other homes for sale).
  • For Jasen to quit his job, trusting that this was the right thing to do.
  • For us to move to another state, where Lilli would attend a new school, have new therapists, and Jasen would attend chiropractic school for almost four years. 
  • For Jasen to graduate and open a practice somewhere. 
  • For us to own our own home again. Maybe have more children.

It was ridiculous. It was not “realistic.” And it certainly did not make any sense.
Who in their right mind would do such a thing? So drastic! Such a crazy risk! What? Take out loans? Begin a new career at the age of 42? Jasen already had a perfectly good career. We had a home and a life. Why in the world would we ever leave that, to venture into the unknown?

Because of hope. That’s why. We hoped for bigger things. Crazy things.

And because of God. Because He can do immeasurably more.

Our reality now… was only crazy hopes and dreams six years ago. Back then, whoever we told our plans to thought we were absolutely nuts.

Our Crazy Hopes Became Reality

We sold our home in record time (before all the other houses on the street, for a good price). That was amazing. We did not do anything more special than anyone else trying to sell a home. We moved here, and Jasen completed his doctorate and graduated at the top of his class. He now (as of three weeks ago!) owns his own practice. We own a home, unbelievably. Buying this home was a small miracle, for so many reasons I cannot explain here. We were blessed to have a third baby in the midst of all of that (Josh). And now we are blessed to be having a fourth baby in less than two months. We were blessed beyond belief to have ABA therapy for three years with Morgan, and homebound for three years with Leslie. These young women helped change our lives. We were blessed to finally find a loving speech therapist who truly believes in Lilli's intelligence and potential, and has worked hard to help us make immense progress with communication devices. We were so blessed to find all of these wonderful people here, that God put in our lives for so many reasons.

I never saw that coming. I had no idea how amazing some things would be when we moved here.

Was it easy? Heck no. Was it crazy? Yep. Was it impossible? Not to God.

And don't think for a minute that we ourselves made any of that happen. You could argue that Jasen worked hard and studied all the time. You could argue that we worked hard to make our home nice so it would sell. You could argue a few things. But not really that much. We had nothing to do with the crazy buyers who purchased our home overlooking the TWELVE STEPS up to the front door. We did not have anything to do with the amazing teachers and therapists that were put into Lilli's life to help her. We were amazed to find our church, where Lilli has her own class with awesome volunteers and Jasen and I can actually drop her off and go to service together. And was it a miracle that Jasen was able to actually focus, study and be so successful in school with three young needy children (who didn't sleep much) around him all the time? You bet.

We had so little to do with all of the incredible things that happened to us. 

This is what I have learned. When I look at my life with the perspective of “reality,” there is little room for hope, or faith. I set my sights on a future that only I think I can achieve.

When I hand my future over to God and put my hope and faith in Him, He is the one who makes things happen. He alone is the one who can open or close doors. When we think that we are making things happen on our own, we make God very small and insignificant. Many people think that God is distant, mysterious, or does not exist at all. They cannot fathom why a person would ever put faith in an invisible god who seems to be a figment of imagination to many.

I struggle to explain to others why God is so real to me. That He reveals Himself to those who truly seek Him. That He is evident, everywhere, all the time, but only if you are truly looking to find Him. If you don’t look for Him, you won’t find Him. If you don’t believe that He might possibly be real, you won’t experience meeting Him.

Reality Now: Time to Have Crazy Hope Again

The story of how Jasen came to have his own practice is a chapter of its own. During the past seven months, we found out we are going to have another baby, Jasen worked incredibly hard to acquire this new business, Lilli’s ABA therapy came to an end, Lilli’s therapist Morgan moved away, and her homebound teacher is moving on to a new job. I decided to homeschool Chloe for the first time ever, beginning this school year. The baby is coming in a month and a half. Meanwhile Jasen is commuting, and we are just waiting for awhile until after the baby comes to figure out all the moving details.  Doors are closing and opening all around us, faster than we can keep up. Reality is that we are in transition, and we are not sure what comes next for Lilli, school, where we will live, when we will go, and how we will eventually transition to the new location an hour and a half away in a new state (where Jasen has his new practice) by next year. 

Reality is that I have mounds of paperwork ahead of me, getting new specialists, doctors, therapists, and teachers for my children, along with a very likely battle with insurance and new state waiting lists for various services for Lilli.

You may think we are crazy. You may be thinking, What? New house? New job? New teacher? New baby? Homeschooling? (What?!) You're going to move again? New state? You just moved! You just bought that house! You just fixed it up! (and it's not even finished!) You’re having a baby! How are you going to homeschool? What about packing? What’s going to happen with Lilli if she doesn’t have an ABA therapist or a homebound teacher?

And actually, I know more than some are just thinking these things. Because many of these questions have already been asked to me in disbelief by others who know what has been going on.

Well, we do not know about any of the answers. Realistically, I should just sit down and cry about all of it.

But we did not just get here on our own. God has led us to this point. We know this is what we are supposed to do for now. I do not know all the answers. But we have hope.

We trust God. He is the one who is leading us. That's why I can choose to have crazy hope.

And I have crazy big hopes that whatever happens in the next year, wherever we end up, it will be better than...more than anything I can even ask for or imagine.

Immeasurably more.





1 comment:

  1. This was amazing!! God is Good!

    ReplyDelete