Why I fight Down Syndrome...Our story.

My sweet Katie just turned 12 and she is more than I could have ever dreamed on that overwhelming night she was born.  It's hard to describe the disbelief and uncertainty of hearing from your OB the gentle, mournful sounds of "I think she has Down's."  Believe it or not, my husband's first panicked question was, "What are we going to do about her college?"  We had just purchased a prepaid college plan for our two year old son and had planned to do the same for Katie as soon as we could.  We were waiting that night to hear back on a counter-offer for our house.  John's questions about the house sale and my work were completely unanswerable at that time.  The future just seemed completely uncertain.  There was only one thing I knew.  God was still in control and I had been following Him as hard as I knew how for my whole life.  This was no surprise to Him, even if it was a surprise to me. 

As Katie grew, my research instincts kicked in.  As an engineer, I found some peace in finding answers, praying as I go.  My cousin had a little one about 6 months older than Kate with Down syndrome (DS).  She had started her daughter on a set of vitamins formulated for kids with DS, so I researched it and the research was sound.  Her daughter, Charity, was thriving.  I prayed about it and got a clear, "No."  I held off for a few weeks.  During that time, Kate got so constipated, I felt helpless.  So I tried it anyway--just a tiny amount.  Katie had projectile vomiting for 6 days--just once each day, but shooting a foot away from her mouth.  I humbly went back to the Lord and promised that I would never disobey His direction again.  He promised that if I would wait on Him, He would provide the answers I needed, when I needed them. 

Around the time Katie was 9 months old, I was reading my alumni magazine when I stumbled on Dr. Cade's research into gluten and casein intolerance.  He reported that a full elimination diet avoiding all gluten and casein could reverse autism symptoms in about 90% of the patients they treated.  Turns out that gluten and casein had morphine-like properties when they were absorbed undigested and that interfered with kids development--in autism, schizophrenia and DS.  I knew what this kind of elimination diet would mean to our family and I just wasn't able to do it.  So I went back to the Father and told Him so.  He responded again for me to wait--that He had could handle that. 

Around the time she was 12 months old, I had a horrible nightmare--except it was so sweet and delightful while I was asleep.  In the dream, I was spoon-feeding an adorable baby and we laughed and flirted with complete joy.  I woke up sobbing because I knew Katie didn't do any of those things and I thought it was my own fault.  I assumed that I was so depressed that I had interfered with her development. 

A few weeks later, I was reading online and found a website talking about enzymes that would break gluten and casein down in the stomach before they could be absorbed in the intestines and cause problems.  Dr. Cade's research had criticized this approach, so I dismissed it as someone just trying to make a buck.  The very next day, I met Dr. Houston at a conference here in Orlando and he just handed me a bottle and told me to try it.  Of course, at that point, I had a 12 month old baby and he had just handed me a bottle of capsules.  It took me 4 months to figure out how to get them into her.  It turned out that we could put the enzymes in tempered chocolate and they would last for about 2 weeks in the freezer.  I started her on a Friday and she took them without too much complaint.  So I waited to see the results.

Nothing. 

I kept giving them to her every meal.  Why not?  I had 2 weeks worth.  On Monday, we had our normal speech appointment.  At the end of the session, our therapist came running out of the room demanding to know what I had done to her.  She was making more sound than ever and had even tried to say a word or two.  I mumbled something about trying a new supplement, but she looked the same to me.  The same thing happened on Friday with our OT appointment.  Hmm...that's enough evidence for me to keep trying.  At three weeks, I asked the PT if he had seen any changes.  He responded exuberantly, "Oh my yes!"  Before he had needed to hover over her so that he could catch her if she fell, but if he accidently touched her, she would stop everything and look down to see where he had touched her.  He told me, "Now, I could touch her anywhere.  She doesn't care--She's so into everything around her."  That week, she started walking--at 17 months.  I finally noticed around a month after we started.  It was like the light came on in her eyes.  Suddenly she was all there with us.  No more space cadet.  Again, I cried, but this time for the joy of seeing Katie, herself, rather than the fog that DS had imposed upon her.  I promised myself I would do my best to figure out whatever it takes to remove the layers of bondage that this disorder has imposed upon her because I liked seeing her without the extra baggage. 

Today she is a bouncy 12 year old and will start 4th grade next week, still in a typical classroom after all these years.  Her language remains delayed and her cognition is still fairly concrete, though she is unbelievably aware spiritually.  She prayed our Thanksgiving prayer at 7 years old, thanking Jesus for dying on the cross for our sins and coming back to life.  What a delightful surprise!  Her physical coordination is pretty typical and she loves cheerleading and dance.  Through the last 4 years she has gone to Nationals every year--of course, when you're on the Challenger team, all you have to do is show up and they will give you the big trophy.  She's cute and funny.  When I asked her today what a million times zero is, she responded, "Lots and lots of zeros..."  She and her brother fight like cats and dogs but they also hug until they break into a new fight. 

I still research like crazy.  We've seen several things that have helped along the way and I look forward to finding more.  I believe that since God has placed mankind in authority over this world (and we have messed it up pretty badly) that we have a responsibility to redeem it in every way God grants.  Of course that has a spiritual component, but it has a physical outworking as well.  The process of understanding and fighting disease is a sacred trust that God has bequeathed to us.  Thankfully, He gives us the following promise: "Call on Me and I will answer you and show you great and mighty things that you do not know."  I have been grateful to be a part of that process within our own family and am happy to share what I have found just as a beggar shares with other beggars where he found a loaf of bread. 

Book Review: Hunger Games, The Mockingjay

 

I've been on vacation this week (sort-of...the kids are out of school and we went to Georgia).  That meant that I had time to read--Wow!!

The Mockingjay by Suzanne Collins is the third in the Hunger Games series and is a real page-turner.  I'll confess that I haven't read the first two books, but I enjoyed the movies so much that I wanted to know how it ended and the book didn't disappoint.  The plot centers around Katniss Everdeen, a 17 year old girl that has already survived two "battle to the death" challenges.  She has become a rallying point for a rightful rebellion against the abuses of the elites in the Capital against the common workers in the Districts.  Those in the Capital have every modern convenience while those in the districts are starving. 

Several themes recur during the book like the use of propaganda to drive popular opinion, the value of human life, and the corruption that absolute power brings.  In many ways, the ending takes on the same feeling as Animal Farm, by George Orwell. The new powers seem to be just as willing to treat life with indifference and manipulate public sentiment as the old leaders. 

I was struck by the scale of the despair that runs as an undercurrent throughout the book.  Katniss' emotions are driven by the state of her friends and relatives so she often seems tossed about like a bobble on a fishing line in a storm.  She is the visible presence of the rebellion, the Mockingjay, but her only motivation is to protect her family and friends.  She has rudimentary compassion for others, but is willing to sacrifice others to save those that give her peace of mind.  Her life and the story lack any sense of transcendent value beyond her immediate circle and times. 

Of course, as a God-friend, the most compelling absence was that of God himself.  The book inadvertently shows the horror and despair of a Nietzschean (God is dead) worldview in stark reality.  Technology and political manipulation are the rescuers and God is never even mentioned once.  Elites abuse others because they can and no one will hold them accountable.  When given resources, the commoners adopt a socialistic/militaristic distribution of scarce resources based on need and the value of the contribution that a person makes.  Life has a rudimentary value, but no transcendent value.  Suffering has no redeeming virtue.  Innocence is a tool to be abused to manipulate others.  Suicide or alcoholic escapism is the emotional normal. Love comes down to a matter of survival:  those that help you and your family survive are those that you love.  Only Peeta shows even a hint at unconditional love, and that is nearly tortured out of him.  People often sacrifice themselves for the sake of the Mockingjay, but she is at a loss for why.  Even when a new normal is achieved at the end of the book, the only hope is that they can teach their children something that will keep them from facing the same horrors but what they will teach about the meaning of their suffering they don't seem to know. 

When Francis Shaffer spoke with those that carried this worldview, he would often come down to the question, "So why haven't you killed yourself yet?"  Every character in the book seems to have a slightly different answer to that kind of question, but ultimately they are only a few decisions or tragedies away from despair.  For a person who knows that there is a larger framework, an eternal destiny, a plan for our lives, and a hope for our future, the ache is palpable.  Life doesn't have to be that way but the enemy has blinded their eyes.  Their freedom to choose for themselves has become a prison of despair, as it always does. 

"For the message about the cross is nonsense to those who are being destroyed, but it is God's power to us who are being saved."  I Cor 1:18 (ISV)

Heaven help them.  They will find help nowhere else.

Unplanned: Caramel rice crispy treats...

This week, PJ actually planned ahead and told me he needed rice crispy treats for his 8th grade science lab, so off to the kitchen we go...

I pulled out the bag of snowmen marshmallows that we didn't use this winter.  At the last minute I decided to double the batch to use up the glut of marshmallows left over this year...PJ and I love hot chocolate.  I had a huge container of really big, really stale marshmallows.  The recipes all said to use fresh ones, but how could fresh be different than stale?  It's all just fluffy sugar, right???

You can see what's coming, can't you...

The snowmen dissolved into a blonde goo while the huge, stale marshmallows swam in that goo, unrelenting.  Ten minutes went by.  I stirred; nothing happened.  I started chopping up the marshmallows.  Now I had big chunks floating in a honey colored slop.  It looked worse than ever.  I pulled out the mixer.  The chunks went through the beater like it was an amusement park ride--entertained but unaffected.  I added milk.  I stirred.  I beat.  I smashed.  It just ended up being smaller chunks in a decidedly caramel hued sauce.  By now it had been at least half an hour and if we didn't hurry PJ would be late for school.  I gave up and started adding the rice.  Six cups of rice went in and the chunks began to disappear.  Another 6 cups of rice and it was a mass of sticky goo--no chunks to be seen.  We poured it out on the foil hoping for the best. 

My first taste on the edge confirmed what I suspected.  All that extra time meant that a bunch of that sugar had caramelized.  A dusting of Himalayan sea salt and, --voila'--I had the most addictive things I had tasted in a long time. 

There are so many times that God starts refining us and we know we're in for some heat and mixing.  We expect that it will be tough, but life turns out so much harder than we bargained for.  If I had used fresh marshmallows, it would have been a 10 minute job.  The marshmallows would have melted and I would have mixed and it would be done.  Instead, I included some old, tough marshmallows that didn't want to respond to the heat and pressure I exerted.  I added more stress--beating them.  I added softness with milk.  The pieces began to shrink, but they certainly didn't go away. 

It's easy to be jealous of some Christians.  They face God's refining fire and they melt--they seem so usable so quickly.  Then there's folks like us:  quirky, tough, rough around the edges, stiff-necked, maybe even tainted.  We go into the pot and our old habits swim around in our new nature seemingly unaffected.  God sends more trouble our way and the habits only seem more obvious for the beating.  He shows us His tender love and we still fret and argue.  All the while, we remain in the fire of His presence wondering if the preparation will ever end; wondering if we will ever "arrive."  Then suddenly, before we think we are ready, he plunges us into ministry.  We squeal, "I can't do this yet!!"  But as we work alongside Him, we find that those rough edges don't poke others quite as much.   His fragrance seems to flavor our work in ways that are easy to see came from the long, painful hours alongside Him.  He adds the Holy Spirit's power and influence not just within us, but for others too. 

For our recipe, it may have taken longer and the outcome was uncertain, but the additional time and work added a flavor that was unexpected and delightful.  For you, God's preparation may take more time than you think.  The ground He starts from may be rocky and unprepared.  The extra time is never wasted.  Rice crispy treats are yummy when they take 10 minutes to make but they are a whole different kind of amazing when they take 30 minutes.  Only the cook knows when it's done.  Trust Him. 

Pride or Awe?

"We are proud of you, We are proud of you (clap, clap, clap)" 

The West Orange Wildcat Challenger Team

The cheer rang out though the entire stadium.  My daughter and her cheer team had just completed their routine in front of hundreds of their peers and it had been a success--not perfect, but exuberant and heart-felt.  What had elicited all this selfless praise from selfish teenagers? 

Katie's cheerleading team is unique.  Katie and her team-mates face tremendous challenges every day just doing things like reading, speaking and running.  Each of these girls have a serious disability of some kind.  The fact that these girls were out there doing the same cheers that every other little girl does with unbridled passion provided a tearful reminder to many in that crowd that life isn't always fair, but we are valuable regardless of who we are and what we are able to do.

Our society elevates pride as a positive and encouraging feeling.  We are told to work hard and you can take pride in all you have accomplished.  It's a hard message to refute--it sounds right.  So why does the Bible portray pride as such a powerfully destructive emotion?  Is it just too much of a good thing or is there something fundamentally wrong with it? 

As bond-servants of the Most High God, the problem with pride, or even self-confidence, is where we place the focus.  Every moment we have a choice between self-oriented pride or God-centered awe.  We can elevate man or we can thank God.  One puffs-up.  The other provides a realistic assessment of our standing before someone much greater than ourselves and brings us to a grateful reverence.

The girls did a good thing and got praise for it, but did they get praise for an expertly performed routine?  Every other team on that mat did better than they did--so why the standing ovation for them?  Why did coaches stand in awe, with tears running down their faces?  In many ways, the heart-emotion Katie's team elicited was a gut-level recognition that we are fearfully and wonderfully made, regardless of our ability.  Before God, we are all disabled in comparison but we are profoundly valuable anyway. 

It's hard to see that when you're comparing the technical skill of one fantastic team against another.  That's what competition is all about.  The winner earns the "right" to feel pride for a job done better than their peers.  The comparison is temporary--a moment in time--and elevates one group at the expense of others.  Those who did not win the prize leave the competition in tears. 

I'm not necessarily saying that competition is inherently bad (I think...for the moment the jury is out on that one).  I wonder if God sees our competitiveness like the annoyance of sibling rivalry: each child crying out, "Look at ME!!!  I'm the Best!!! Pay attention to ME!!"  The Father has seen and treasures each child uniquely, but try explaining that to a brother and sister fighting for attention (and yes, this is one place Katie is perfectly normal.) 

On the other hand, when we gratefully recognize the work that God has done in and through us, it lifts us up, changes our focus and encourages all who see it.  Our world may never get past the one-up-man-ship of competitive pride, but as children of an incomparable God, we have the chance for something better: the reverent awe of a grateful participant in a much larger story.  People are small and frail and cannot bear the weight of worship directed toward themselves.  There is nothing like praise to thoroughly ruin a man.     

Pride puffs up.  Humble reverence lifts up.  Which one would you rather have?

Prayer burnout

 

Have you ever just gotten tired of praying for people?  I can't tell you how many old style Wednesday night prayer meetings have left me irritated and exhausted.  Most of the requests seem to be about people who get sick and stay that way:

"Dear Lord, Aunt Edna's gout is out of control again...please make it ok for her to eat whatever she pleases and still be able to get around enough to make her Christmas fruitcake..."

Ok, I do have more compassion than that.  I've been in pain regularly and it's, well...a pain.

As many of you know, I'm writing a lab manual for a Prayer Lab--a course on prayer that focuses on praying, rather than lecture.  As I was writing the chapter on long term intercessory prayer, I included a guideline that our vertical time with the Father should always be longer than the time we spend interceding for others. Of course, if we are praying continually, that leaves lots of room for intercession.  I felt uncomfortable with including it, not because it was a bad guideline, but because I didn't have a specific scripture I could use to back it up so I began to ask the Father about it and this is what He sent me from John 15:

• ⁵ “...I am the vine; you are the branches. Those who remain in me, and I in them, will produce much fruit. For apart from me you can do nothing
• ⁴ Remain in me, and I will remain in you. For a branch cannot produce fruit if it is severed from the vine, and you cannot be fruitful unless you remain in me.
• ⁷ But if you remain in me and my words remain in you, you may ask for anything you want, and it will be granted!

So the equation is this:

Life from Christ in > Fruit for Christ out

 

For my not so mathematical friends:

 

The life we receive from Christ will always be greater than what we can fruitfully give out. 

We cannot give what we have not already received from Christ.

 

That's what, "Apart from Me, you can do nothing," means.  We can do things of our own strength, even pray for others out of our own strength, but it will mean absolutely nothing in eternal terms.  It's what Paul is referring to when he talks about us building with wood, hay and stubble.  When we build out of our own resources, the product will amount to kindling in God's eyes.  When we build from what He provides, it will be something worthy of Him because the gold, silver and precious stones He provided are the stuff He deserves. 

 

Personally, I wear out of energy not long after I start trying to minister in my own strength.  For this I'm grateful.  I know the difference between prayer that is bourn on the winds of the Holy Spirit and the labor of prayer from my human capability.  The moment I find I'm struggling to find His power or drive for intercession, I know I haven't had enough time with Him for myself and for His glory.  No fruit means I haven't been abiding.  I have a choice.  I can keep trying on my own or I can stop and enjoy Him--and that's an easy choice, though it may take me awhile to make it sometimes.  Part of what He does when I abide in Him is assure that my focus is on Him and not my circumstances or difficulties. 

 

What about you?  How is your own time with Him coming?  What can you do practically to make sure that your focus is on Him and He has your full attention before you start to minister, whether it's prayer, service or speaking?  I'd love to hear from you...