Free Therapy

Do you ever have that feeling that you just have too much time on your hands? Maybe you are just dying for one more plate to spin? No? Hmmmm. Me either.

Perhaps you can relate to a racing mind in the wee hours of the night. The kind of sleepless night that has you solving ALL of the world's problems. Maybe you have a spouse that is an incredible listener, but you feel like his gift has been more of a punishment lately--and he's just too darn nice to tell you that your "gift of gab" is a bit painful at times. (I wonder if he's tried to tell me this, but I've been too busy talking to hear? Surely not. I'll ask him later. He'll be thrilled to chat about it for a bit.)

So when you take the zest for chatting, add the unfortunate spices life has thrown at us lately, and add a bit of overthinking and a dash of a love for writing....what do you get?? A blog!  Not a resolution to document our lives. Not a commitment to post "x" amount of times each week or month. Just a sounding board. A place I can gather my thoughts.... a method to spare the ears of those closest to me, and give another one of their senses a work out! As the blog tag line says... free therapy for me.

So now, I'll dwell on the unfortunate spices. They, after all, seem to be consuming things in The Whole White World lately. I've revealed bits and pieces of this situation the last few weeks via Facebook or texts, probably just enough to be annoying to the majority.... like the 'appetite wetter' posts where you just want to comment, "OUT WITH IT" or "KUDOS ON DANGLING THE CARROT". I haven't meant to be evasive.... I think I've just been enough of an emotional mess, that I was fearful I'd get medical expert opinions on what it could be, couldn't be, etc, if I gave too many specifics. It just felt safer to leave it as a request for prayer. I wholeheartedly believe in the power of prayer. Why not use social media (or a blog) to petition for it.

Ok. That said... here is the situation... (the condensed version, believe it or not, though I will back up a smidge).

My 4 year old sweetie pie, KD, had a very rough 2013. After a couple years of mother's intuition- insisting that something wasn't right, this squeaky wheel was finally heard....and within 2 weeks of getting him into an early childhood classroom for observation, the pieces started coming together. The "experts" at his school said Autism--and so the testing began for an official diagnosis. I'll say, my mind had never gone there. The hubs and I were quite devastated and spent many a night discussing how we could help him, expressing concerns about his future, the unknown, beating ourselves up for some "loser parenting" up until that point, where we assumed certain behaviors were due to a stubborn will that needed to be broken. A weird emotional roller coaster of grief, guilt, and fear.... all rolled into one, but covered by the true belief that we had the most perfect son in the world...who was perfectly and wonderfully made...and that he was JUST THE PERSON God had created him to be. Different, not less. By July, we had the official diagnosis, started the hunt for therapies, started reading books, and coming to terms with what we thought would be the worst diagnosis to come our way.

But there is more to the story. (Need a bathroom break? Now's a great time if so.)

In August, KD started having major difficulty breathing. Not related to sickness or allergies. The poor kid just couldn't breathe. His voice would cut in and out when he tried to talk or laugh---otherwise he felt fine. His oxygen levels would drop very low, and stay there for days, despite round the clock nebulizer treatments. This happened off and on for several months, and after various appointments it was decided we need to see a Pediatric Pulmonologist. There is no longer one in Wichita, so the week of Thanksgiving we were sent to Children's Mercy in Kansas City. There they tested his lung function (which was too low), set us up on a severe asthma action plan (which has been FAB), and said we needed to rule out Cystic Fibrosis (oh my, sounded scary, but just ruling it out, right?).  They set up a sweat chloride test at St. Francis for the first week in December and we got discouraging results. His score was borderline to the intermediate category. Without symptoms, the score may not have been too concerning, but combined with what they'd been seeing, they ordered another test. So we worried, and prayed, and repeated the darn thing. A few hours later, we got the call that his score had worsened significantly, and now he was only 8 points away from the "likely" category.  So what started as a rule out, has now become a legitimate possibility and fear.

Two weeks ago, we started genetic testing to get a definitive answer. So that's where we are. Blood has been sent to the Mayo Clinic, and now we wait (and by wait I mean, heart sinks to your toes every time the phone rings---which should have been by today, but it wasn't, grrr.) This test could possibly confirm CF, but will not take it off the table unfortunately. There will be a series of tests to be completed before we get to breathe easy (bad pun). So it may be a long and winding road. We just don't know.

Here is what we do know:
1. Google is NOT your friend. It seems to pull up the worst case scenario, of every diagnosis. It lists scary symptoms like "foul smelling stools" (are you kidding me?), and leaves you CONVINCED you are on your death bed.
2. Prayer is powerful. We are blessed by so many amazing friends and family that have been praying with us every step of the way....and I FEEL them. They send encouraging texts, or sweet chats on Facebook, asking how my boy is. You all are keeping me off the aforementioned Google ledge.
3. God loves KD more than we do. He's got the whole WORLD in his hands....and that definitely includes our sweetie. That even though we as parents who want more than ANYTHING to be able to control this situation, to heal him, to take it all away.... can not, we do belong to the ONE who can do all of those things, and so much more.

I've got my kiddos ready to make some pancakes for dinner. (yes at 8:00--don't judge, ha!) And so that's it for a glimpse into our world for now.


If you're just thirsty for more....here's a link to a video I made for my husband, with our favorite praise and worship song. Some of you may have seen it. He's pretty darn special----and we may or may not have watched this a good 50 times.

http://www.youtube.com/watch?v=mgf3QfqyXEs&list=HL1388802600&feature=mh_lolz