5.02.2015

Dear Life,

You really do like surprises, don't you? When Henry was born, I didn't think it was possible for my life to change so radically, so fast. But his birth was only the beginning, wasn't it?

Of course it was. 

Henry enjoys the local, annual production of Handel's Messiah.


Henry's changed my faith. Two years ago, I never thought I'd pray that a child would have the ability to swallow. But every day, we beg God to teach him how.

On the beach, circa March, 2015

He's changed my definition of excitement. Never in my wildest (okay, maybe wildest, but never in my run-of-the-mill) dreams would I be literally jumping up an down because a baby gained 2 ounces in one day. (Literally--not figuratively.)


Passing the 18 pound mark!

Who would have imagined I'd think of a trip to Wal-Mart, where I didn't even get out of the car, as an incredible field trip? But when Addison spent the summer on immune-suppressing steroids,..I did just that.

Feeding time gets creative during a birthday cake outdoors.


Did I tell you that Henry's changed my priorities? Oh, absolutely, yes, he has. And my outlook. And my vision for the future. And even my thought processes.


Even my concept of time has been effected. You know how little kids measure time by markers- naptime, lunchtime, playtime, storytime, etc. ? In our family, we mark time by Henry's schedule. Naptime, feedingtime, therapytime. You get the idea. 


Balloons are just so...happy.


So, Life, you've thrown some curveballs.

And I catch like a girl.

But, oh, Life, God is good. Isn't it wonderful how He gives grace in time of need? Or didn't I mention that Henry's changed my outlook on trials? Before these days, I knew trials shaped us. But now, I KNOW they shape us. And in ways we never expected. And yet, for the better.

Playing peek-a-boo through a paper towel roll.


These two years have been gut-wrenching. Full of heartache. Pain. Worry. Disillusionment. Stretching. Growth. And, that most-dreaded, change.

And I wouldn't trade them for anything.



Except, maybe, that smile. 

Life, keep those coming.
Sincerely,
Kay


2.22.2015

How I Spent My Summer Vacation

This is late. Like really late. But the sentiments still apply. This will still be, in fact, what I did on my summer vacation. And it's never too late to talk about what God has done and to praise His goodness. This is a great way to justify procrastination, right?...

As far as I can recall, I don't ever remember my mother asking me to write a paper on this particular theme. If she did, in fact, give me this assignment, then I don't remember it. Besides, Mom's practicality will not allow her to give "filler" work. The two papers I remember writing were on "Our Trip to Chinatown" in first grade, and a Rebuttal for a Wednesday Crucifixion versus the traditional Friday (high school).

But, back to my theme. (This is why I don't write well. I write like I talk--in circles.)

My summer can be well-outlined by a current favorite song.



Everybody falls sometimes.

In July, Henry was diagnosed with hypsarrhythmia (West Syndrome), which manifested itself with developmental delays and infantile spasms. As it turns out, these particular seizures are the absolute worst kind, in that, they cause brain damage and are hard to diagnose. To treat the hypsarrhythmia, he was put on a strong, immune suppressing steroid (a experimental treatment attempting to restart the brain rhythmic function). In order to prevent any sickness from reaching Henry, the whole family went into a strict quarantine. We didn't leave the house except when absolutely necessary. People who visited not only had to have 2 past weeks of no illness, but also no contact within those 14 days with any type of infection. It was definitely a hit the bottom time.


Got to find the strength to rise, from the ashes; make a new beginning.

The hardest part of Henry's sufferings, for me at least, was not being able to do anything but pray. Not that I'm belittling prayer by any means. I've seen the way prayer works, it's power to unify unlikely people. But I'm a "hands-on" kinda girl. Always have. Checklists are my friend.  For those who've seen Sense & Sensibility (the Emma Thompson version), remember the part when Marion falls terribly ill and Colonel Brandon, worried sick, looks at Marion's sister, Eleanor and says, "Miss Dashwood, give me an occupation or I shall run mad." Remember that? I need to roll up my sleeves and get my hands dirty. Prayer alone (so I mistakenly believed)  is abstract.*Disclaimer: I don't believe this anymore. This summer has definitely been a season of growth.*


Anyone can feel the ache, you think it's more than you can take.

There are some great ways to describe where my July was spent (emotionally & mentally): out of my depth, in over my head, overwhelmed, out at sea, up the creek without a paddle, shipwrecked, overboard. All of these work well, and there appears to be a theme of water throughout... Now, naturally speaking, I'm not very organized. But I do appreciate neatness, attempt to maintain tidiness, and like my world a little organized and on routine. My theory is that this is why I love music. At a piano, there is rhythm, order, a beat, a time signature, syncopation, with limitless beauty thrown in-and all (now get this) completely in my control. Plus. all mistakes are temporary, have no serious consequences and are easily corrected. Okay, back to the subject at hand.

But you're stronger-stronger than you know.

This line I have to disagree with. One of the countless lessons I've learned this summer is simply that I have no strength of my own. Yes, all of that "you've got this" attitude people (even well-intentioned people) try to feed you is a lie. If you go about with a mindset of "I can take this" you will run into something that proves to you that you CAN'T take it. In 2 Corinthians, Paul writes to tell us what Christ told him in his long term struggle:

"And [Christ] said unto me,
My grace is sufficient for thee:
for My strength is made perfect in weakness..."
-2 Cor. 12:9

It was God, and only God, though sometimes through earthly hands/feet/voices (more here), that lead this family through each day. And still does. Dying daily was not optional-it was necessary. Resurrection was a daily miracle. Even then, some days was like walking through a haze. And the more lethargic and unresponsive Addison became, the harder it was to push through the day to day.  We were surviving, and yet ...not. It is said the Spirit grows in leaps and bounds. This summer has been the biggest spiritual growth spurt that this girl has had in three years.

Don't you give up now-the sun will soon be shining. 
You've got to face the clouds to find a silver lining.

When I finally made myself come face-to-face with all that going on, I began to see less of the awfulness and more of the awesomeness of what God was doing. Once God got through my thick head that He was, in fact, always in control, the path ahead did not grow and lighter but my small part of that path lit up, and for the first time I saw all those Christian brothers and sisters who were walking beside me. Every day someone contacted my family in some form to tell us they were thinking of/praying for us. And every time they did, a bit more of the weight was lifted. Some of those people were church family. Some were old friends. Some were acquaintances that became friends. But then there were unexpected people. Like Henry's physical therapist. Or the Fellow from his neurology team. A man Pa met through his work years ago. Strangers who heard Addison's story 2nd or even 3rd hand 1/2 way across the country. There were churches in 7 separate states. One mother (who's son had had the same seizure disorder as Addison) was lecturing in Europe when she contacted us about Henry. You get the idea. The word was spreading near and far. 

Well, life was, as can be expected, far from "normal", and had little to no routine, no matter how hard we tried.  (But we can talk about normality 'til the cows come home. What's home? What's normal? What're cows?)

Two months of only leaving the house for groceries and doctor appointments was taking its toll. We honestly felt a trip to the pharmacy for more Zantac was an awesome reason for us all to pile in the van even though we never actually went into the store (our CVS has a pharmacy drive-through)."Vacation's coming", became our mantra. All our hopes from normality and rest were hung on our annual getaway. 

By early September, Addison was off his meds, and slowly returning to us. The Doctor had told us not to expect to gain back any ground for six months at least, so it was encouraging that he was smiling and laughing by the time we were ready to leave. But, then the seizures started up again. Our hearts sank into our stomachs, our stomachs into our feet. Addison went for an EEG, and a few days later, his Dr called to give us the results. No Hypsarrythmia. *phew* No, his seizures were myoclonic. Basically, his brain was in the final stages of reboot. The seizures themselves would not harm him. As long as they were few and far between we were okay. But we had to think about what anti-convulsives we wanted to put Henry on while we were on vacation.

Then it was here-- vacation! at long last!


I've seen dreams that move the mountains.

When we left for our favorite coastline spot, we had no expectations of where he'd be when we came home. It was a net-into-the-sea-type situation. God told us to cast our net one more time on the other side of the ship, and, like Simon Peter, we didn't think it would make much difference. [John 21]  But we did anyway. More from fervency then faith. And, like Peter (I've always related to this guy so well), we were surprised. Amazed. Astounded. Speechless. Shocked. Flattened. Flabbergasted. Blown away. Bowled over. You follow. We saw Christ in the miracle. But I'm jumping ahead of myself (again).

Hope that doesn't ever end, even when the sky is falling.
This is a total side-note, but has anyone else ever heard the story of Chicken Little and wondered why this chicken could be so dumb as to not recognize an acorn? Even our chickens are smart enough to tell a nut from a potentially dangerous situation. And why on earth would she go bother the king? I mean, really, what was the king going to do about the sky falling? I was always glad that the fox ate all those nitwit animals in the end. Anyway....

The first two days of vacation we saw many seizures. Myoclonic spasms can be set off by stress, situational changes and being over-tired (ie: travel by car for 12 hours). But in the next five days he had absolutely none. The next Sunday, his afternoon nap was interrupted and he had one seizure that evening. Since then...

I've seen miracles just happen,

Yes, the miracle I mentioned earlier, it's the miracle that now, 147 days later, to the day, Addison has not had a seizure. On no medication. Even his neurologist was astounded.

Silent prayers get answered,

Now we had clear direction, medically speaking. No seizures = no reason to medicate. Don't tell me God doesn't heal. He has. I've seen it. More than once. But that's another story for another time. The point is HE DOES HEAL MIRACULOUSLY TODAY.

Broken hearts become brand-new:
By the time we arrived at home, we were new people. Well-rested, hopeful, joyful, refreshed , encouraged, light-hearted, and grateful. Immensely grateful. We embraced the beauty of coming home in full-blown autumn. 

That's what faith can do.

Even though this past summer started out looking pretty bleak (and don't for one minute doubt that it wasn't) it has become one of the most incredible Look What God Did experiences. Like all those rough patches, it is certainly not what I would have chosen. But now, looking back, I wouldn't trade it for the ideal summer. Because I learned what faith can do. But more importantly, I learned what God can do. 


Song credits to Kutless, "What Faith Can Do"