Tuesday, August 12, 2014

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.


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.