For the last three weeks, Henry had become less alert, more lethargic, which came to a head last Monday when mom had a hard time waking him up from his nap (not normal-this kid is like clockwork). He'd also been doing this odd little movement where his left side appeared to collapse for a half-second. Then he'd recover and seem fine. These "drops" became more frequent and sudden, and usually occurred at certain points throughout the day. Mom described this to his physical therapist, thinking it was muscular, and she thought seizures and recommended we see his doctor. So Mom called his geneticist, who said she thought it was indeed seizures, and to bring him to Children's Intl. Hospital right away for an EEG.
Five whirlwind minutes later, I was master of the house, and we were all in a well-what-do-we-do-now? mindset. So we did what all good Italians do under stress. We ate lunch. Pa and Mom sent word later that the CIH was keeping Henry overnight for the EEG, and resourceful, level-headed Brianna fixed an overnight bag for the three of them. Our gracious house guest proved to be a true friend in time of need, pitching in and lending a hand when- and where-ever needed (such as hauling the 8 of us into the can and driving the 1-1/2 hours into DC for us to visit Henry and the Parental Unit).
During rounds the next morning, Henry's EEG was read and the hypsarrhythmia confirmed seizures and a diagnosis of West Syndrome- a very rare form of Infantile Epilepsy. In typically developing children, there is an underlying cause for such seizures. However, in children with Down Syndrome, they really don't have any trigger/cause whatsoever. The 12 neurologists that studied him that morning prescribed a steroid to stop the seizures and an ulcer med to spare the lining of his poor stomach the pain of being eaten through by the actual medication. Yeah, some pretty harsh stuff.
However, in all this, there were still many overwhelming blessings:
- Henry's PT was able to come on a work day, on such short notice just to check up on him-an hour's drive out of her way.
- His geneticist was able to accurately diagnose him over the phone.
- The hospital was able to schedule the EEG for that same night, so he could spend the minimum amount of time there.
- No brain damage occurred from the seizures.
- The very Down Syndrome that makes his every day harder actually saved him from a more serious outcome. Also, the Doctors told Pa and Mom that children with DS respond to the meds better.
- All of his unresolved swallowing issues have not prevented him to be able to take his oral medications.
- God arranged for our from-out-of-town-friend to be staying with us at just the right time.
- Not one but two friends brought us meals (no cooking!) and even more flooded us with encouraging texts, offers for help/rides and a few if-you-need-anything-and-I-mean-anything-you-just-call offers.
- One of his nurses just transferred to neurology from the cardiology dept., where she attended Addison's friend, Madion's, three heart surgeries.
And there are loads more.
So, Henry came home and started the meds. One week, to the day, later, and his seizures are few and far between.
But something else started happening. He slowed down even more. His light seemed to go out. He became even less alert. He wanted to do nothing but lie on your shoulder and suck his thumb. Therapy became a thing of the past. He lost interest in everything. He stopped smiling altogether.
And then, two days ago, I realized that I miss him. I miss Addison.
It's like he's trapped inside, lost under this tired, sad, fussy baby,
It breaks my heart.
The doctors are sure that within 3 months, tops, he'll be off the meds, and back to normal. It's a hope to cling to, but from this place, it looks like a long, bitter road. Like I wrote before, I've got to continue to let him go every day. It's been tough.
A wise friend told me this past week that when these things happen, we must ask ourselves two questions:
1- Is God Sovereign?
2- Is God Good?
Of course, was my instant mental reply, of course He's Sovereign and Good. But since that moment, those questions kept reappearing.
Now, at first, this next statement will sound almost sacrilegious, but stick with me for a moment. I believe it's good to question our faith. Hang in there a second, okay? I'm not saying it's okay to question God. But it is okay to ask questions of Him: He always answers. But you have to have the right question.
If you only ask for answers, you're likely to be as frustrated as the spokesmen for Sages, Astronomers, Philosophers and Other Professional Thinking Persons were at Deep Thought's answer to life, the universe and everything: 42. Some have this theological bee in their bonnet about asking God questions. As if, when a hurting person asks "Father, why?", God would pop out of somewhere and thunder out: HOW DARE YOU QUESTION ME AND MY WAYS! In actuality, God says, "Come now, and let us reason together"(Is.1:18) and "My thought are not your thoughts, neither are your ways My ways." (Is. 55:8) That doesn't sound angry, but inviting.
Take Job, for instance. He's known the world over as the righteous man who lost everything and never questioned God. But the book of Job is chock full of questions asked of God. Then, after 37 chapters of questions (from Job) and debates (Job's 4 friends) God shows up, and from the whirlwind, tells Job not what he thought he wanted to know, but what God knew he needed to hear. And it wasn't the answers. In fact, it was a boatload of questions. God asks him questions like, "where were you when I called the earth into existence?" and "can you invent, let alone, make from dust, such magnificent beings as behemoth and leviathon?" "are you this powerful?" Instead of saying "Job, I let this happen to you because_fill in the blank_". No, not at all. He showed Job how Sovereign He really is.
In two of my blackest moments, God made sure they happened on a clear night, and put me outside where I could see His stars. And by marveling that God created all of the amazing constellations just for man to look at (they serve no other scientific purpose that I know of) I learned that He is Sovereign. In everything that has happened with Addison so far, we've had many trials. But the testimony of miracles He's done through those trials has far outweighed any negativity. And by focusing on those positives, we train our mind to trust Him. He's done it before, He'll do it again.
Is God Good? Oh, yes. In all I've been through (and I'm not even talking about other people's testimonies, just by own) God has been good.
And just this morning, during therapy, Henry was more alert than he has been in almost a month. Not one seizure so far today. And Aedan got him to smile. Maybe, just maybe, God knows what He's doing after all.
Lately I've been looking back, along this winding road
To the old familiar markers of the mercies I have known.I know it may sound simple, but it's more than a cliche-
There's no better way to tell you, than to say-
God's been good
In my life.
I feel blessed beyond my wildest dreams
As I go to sleep each night.
And though I've had my share of hard times,
I wouldn't change them if I could,
'Cause through it all-
God's been good.
Times replay and I can see that I've cried some bitter tears.
But I felt His arms around me, as I faced my greatest fears.
You see I've had more gains than losses- I've known more joy than hurt.
As His grace rolled down upon me, undeserved.
God's been good
In my life.
I feel blessed beyond my wildest dreams
As I go to sleep each night.
And though I've had my share of hard times,
I wouldn't change them if I could,
'Cause through it all-
God's been good.
For God has been my Father, my Savior, and my Friend.
His love my my beginning, and His love will be my end.
I could spend forever trying to tell you everything He is.
But the best way I can say it, is this:
God's been good
In my life.
I feel blessed beyond my wildest dreams
As I go to sleep each night.
And though I've had my share of hard times,
I wouldn't change them if I could,
'Cause through it all-
God's been good.
-Legacy 5's God's Been Good
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