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"

9.17.2014

The Gratitude Challenge

Sabrina from Hospital Flowers tagged me for this challenge going through the social media. Here's how the challenge is supposed to work: For 5 days, you write three things you are thankful for. In five days, that comes to fifteen things on your gratitude list. Then, you tag some people, and they write their own, so on and so forth.

This challenge is quite timely. With all that's going on, writing down the things I'm grateful for should be good for me. While I will be posting these things three at a time on G+, I'm going to put the whole long list here. Which may or may not be only 15 items long.

Okay, here goes:

1. One of the most wonderful things about summer is the clothesline. In my little corner of the world, few smells are sweeter than slipping between sheets that have been dried with sunshine. I could literally stay awake all night inhaling the scent.


2. Music. Music is one of the knot of things around which I revolve. It has taught me lessons, ministered to me in the hard times, and changed my mood so fast I didn't even see it coming. It's a powerful tool.

3. Man has no ability to truly comprehend the incredible awesomeness (in the truest sense of the word) of the human body. Okay, just take the brain. Common, perhaps, but far from ordinary. This would become a massively long post if I were to go into some of the details of the amazing-ness of the human physical mind. And some of you may become a little green. So I digress. But, really, it is fascinating. Here we are in the 21st century, and we act like we know all there is to know, but, in reality, when it comes to the brain, we know only so much, practically next-to-nothing.

4. Nutella is one of the staples of my diet. I may or may not have been caught eating it with a spoon directly from the jar. But then, I'd have to silence the witnesses if they decided to make this knowledge public. :)

5. Intimacy with Christ is a beautiful, beautiful thing. He and I go way back, and He's been so good to me. I'd always known of Him, but a few years ago, He let me know that He wasn't happy with being "just friends". That He wanted my heart. So I gave it to Him. And being His beloved has satisfied me more than anything I've ever known in my entire life. And it's only gotten better! In fact, as I go through each struggle, He's proven Himself Wonderful time and time and time again. What more could a girl ask for?

6. Being Italian. Does anything more need to be said? I mean, really?

7. The stars have never ceased to amaze me. Just read Psalms. The stars point to God, to what He's done, what He can do, and where we stand in comparison. God used the stars to teach me that lesson a few years ago. Everything looked bleak, then He made me see the stars, and realize what His hands can do. And that gave me that Peace that passes understanding.

8. Coffee is the staff of Italian life. This is a given. In our house I'm the self-appointed Coffee Officer. If you've ever walked through our doors, I remember whether or not you drink coffee, and if you do, whether you prefer caf or decaf, as well as how you like it fixed (and how you don't). It's just one of those weird quirks that people probably don't know about me. I take to coffee like a fish to water or a Brit to tea.

9. Friends. Real friends. Men were real men. Women were real women. Small furry creatures from Alpha-Centuri were real small furry creatures from Alpha-Centuri. (yes, that is a quote.) Seriously, though, friends have lifted my family up through prayer and support more in the past 3 months than anyone else. There's nothing like a hard time to show who your real friends are. And with all that's gone on this past summer, quite frankly, I don't have time for friends (or Christians for that matter) who aren't real in the realest sense.

10. The human hand is almost as fascinating has the human mind. And the fact that I can use the two God gave me uninhibited is a gift. I was marveling over this while playing piano last night. I'm no Billy Joel, but you don't have to be to appreciate the complexity of the human hand. If I had no use of my hands, I'd go insane. I love to sew and to play piano too much. So thank You, God for my hands; may they always be used to Your glory.

11. Color. Life would be dreary without color. Imagine what life would be like without color. How dull, how boring. When it comes to faith, I believe very strongly in the concept of Black and White. But if God meant for life to be black and white, He would have made it that way. Instead we can see a whole range of color (all by-products of light--that could be a whole post in itself) that make our world beautiful. After all, color serves no actual purpose other than to please the eye.

12. I have absolutely no fear of being generic: my family is one of the greatest things to ever happen to me. Easily could I have listed my family members individually for the first 10 of these fifteen items. In which case, this post would grow into a trilogy of books. :) My family lifts each other up in the hard, prays each other through pain, laughs each other through the funny, cries through the sad, smiles through the joyful and hugs all the time. We know each other's buttons and soft spots, weaknesses and strengths. We understand each other perfectly and can even know what the other is thinking most of the time. Never have I had a group of friends that so encouraged and challenged me.

13. Owls. Owls. Owls. They've become my babies. [figuratively, of course] We tease Mom that she has Grandowls. As each of my little parliment is finished being stuffed, I squeal with joy. Not that I'd ever admit that on the internet. Remember those witnesses from before? Still stands. And you know who you are... I'm grateful for my owls because I've seen God pull some amazing stunts. Like last years' Buddy Walk sales numbers. Like the I Can Bike camp this summer. Like people jumping in with both feet to help the cause. Like friends stepping in to help. Even if they have no clue what they're doing. :) I can't wait to see what comes in the future!

14. Love. I'm sorry if this is, perhaps, again, generic, but, then again, it's not. (and that was a lot of commas for such a short sentence.) No, definitely not. Love is never generic. Not true love. Not the love that God is. Not the love He gives us. Not the love that nails the God/man to a cross to bleed for me. That's not generic, and I take it back. I'm not a bit sorry. I'm glad. Are you?

And the pièce de résistance: Henry. I'm grateful for Henry. Because of him, I've been pushed to do not what I think I can (like the little engine) but what God can do through me. He taught me what real love is. He taught me what expressing gratitude when you aren't grateful can do. How to look out for others when you are hurting and your hurt will be lost in trying to help. Which is, in essence, real love. So it kind of rounds out the whole last bit, doesn't it?

So there you have it. The 15 things that I am gratful for in this moment. Which, hopefully will expand tomorrow. And the next day. And the day after. And the day after. And the day after....you get the idea.

Now: what about you? What are you grateful for? If you post about the challenge, I'd love to hear from you!

"In every thing give thanks[not feel thankful]: for this is the will of God in Christ Jesus concerning you."- I Thess. 5:18, emphasis mine