We traveled to Spokane for a pretty specific reason-
to visit a pediatric neurologist at the Children's Hospital. I had heard the word "epilepsy" bounced around a few times prior to this, but I never really grasped what it was, or that Spencer had it for sure. That is, until this appointment. Designating new words to describe life now is a strange thing. Giving something a name shouldn't in theory, change life much. I mean, your daily lifestyle and circumstances look exactly the same as they did before the appointment. But the truth is, the word does change things. You put it on like a heavy and uncomfortable coat, and you can't take it off. The best we can hope to do is get used to it.There is so much to unpack, and I'm finding that it's necessary to compartmentalize in order to function and to intentionally tap into the joy of the Lord. Legistically, it is challenging to be proactive. Montana only has one pediatric neurologist and he is nine hours away. All tests and appointments involve a day spent in the car and with that, we need to factor in the schooling and child care needs of the other kids.
Having no prior experience with epilepsy or seizures, I really am learning as I go. When Spence had his first one, it was like being flung into the cold, deep end of the pool, and there was no wading our way in. It was shocking and jarring, and left me with an utter sense of helplessness. It's a horrifying thing to go through- watching my little one violently thrash around and eventually lose consciousness. This is the same little one that I'm disinfecting for, reading all the warning labels for, basing my breast-feeding diet choices for, and researching shopping choices with nauseating discrimination. And as this violent convulsing was happening, there was nothing I could do but watch. My prayers were raw, loud and brief, "God! Make it stop!"
This is where the rubber meets the road faith-wise. And all those verses about trusting the LORD, and Him being in control, must be employed. I won't say that it isn't a painful process, because it is. But there is also an intimacy with GOD that is comparable to nothing else, and so in this too, there is intermittent beauty and peace. And there is a constant truth that doesn't shift with my many emotions, and that is, we are loved and held the whole time.
My dear friend gave me a Psalm to read as I was in the middle of one of our scarier moments. It came right on time because, it seemed like seizures would occur in conjunction with sleep patterns. This caused a lot of anxiety for me because I became more and more fearful of putting him to bed and opening him up to the possibility of him seizing all alone. Because of this, I began sitting up, holding him most of the night, waiting for the worst to happen. I figured that, if I couldn't help, the very least I could do is be there with him through it. My friend had no idea about any of this, but sent an email of encouragement which included Psalm 4. I cling to this Psalm. I had read it a few weeks earlier and even put a little heart next to it, because it was part of my devotional reading that fell on my birthday. But, clearly, GOD wanted me to read it again. ..
Psalm 4
Answer me when I call to you,
my righteous God.
Give me relief from my distress;
have mercy on me and hear my prayer.
How long will you people turn my glory into shame?
How long will you love delusions and seek false gods
Know that the LORD has set apart his faithful servant for himself;
the LORD hears when I call to him.
Tremble and do not sin;
when you are on your beds,
search your hearts and be silent.
Offer the sacrifices of the righteous
and trust in the LORD.
Many, LORD, are asking, “Who will bring us prosperity?”
Let the light of your face shine on us.
Fill my heart with joy
when their grain and new wine abound.
--> In peace I will lie down and sleep,
for you alone, LORD,
make me dwell in safety.
Here's a really helpful resource recommended by our pediatric neurologist:
Having no prior experience with epilepsy or seizures, I really am learning as I go. When Spence had his first one, it was like being flung into the cold, deep end of the pool, and there was no wading our way in. It was shocking and jarring, and left me with an utter sense of helplessness. It's a horrifying thing to go through- watching my little one violently thrash around and eventually lose consciousness. This is the same little one that I'm disinfecting for, reading all the warning labels for, basing my breast-feeding diet choices for, and researching shopping choices with nauseating discrimination. And as this violent convulsing was happening, there was nothing I could do but watch. My prayers were raw, loud and brief, "God! Make it stop!"
This is where the rubber meets the road faith-wise. And all those verses about trusting the LORD, and Him being in control, must be employed. I won't say that it isn't a painful process, because it is. But there is also an intimacy with GOD that is comparable to nothing else, and so in this too, there is intermittent beauty and peace. And there is a constant truth that doesn't shift with my many emotions, and that is, we are loved and held the whole time.
My dear friend gave me a Psalm to read as I was in the middle of one of our scarier moments. It came right on time because, it seemed like seizures would occur in conjunction with sleep patterns. This caused a lot of anxiety for me because I became more and more fearful of putting him to bed and opening him up to the possibility of him seizing all alone. Because of this, I began sitting up, holding him most of the night, waiting for the worst to happen. I figured that, if I couldn't help, the very least I could do is be there with him through it. My friend had no idea about any of this, but sent an email of encouragement which included Psalm 4. I cling to this Psalm. I had read it a few weeks earlier and even put a little heart next to it, because it was part of my devotional reading that fell on my birthday. But, clearly, GOD wanted me to read it again. ..
Psalm 4
Answer me when I call to you,
my righteous God.
Give me relief from my distress;
have mercy on me and hear my prayer.
How long will you people turn my glory into shame?
How long will you love delusions and seek false gods
Know that the LORD has set apart his faithful servant for himself;
the LORD hears when I call to him.
Tremble and do not sin;
when you are on your beds,
search your hearts and be silent.
Offer the sacrifices of the righteous
and trust in the LORD.
Many, LORD, are asking, “Who will bring us prosperity?”
Let the light of your face shine on us.
Fill my heart with joy
when their grain and new wine abound.
--> In peace I will lie down and sleep,
for you alone, LORD,
make me dwell in safety.
This has helped so much as I navigate the valley. I don't have to stay up all night waiting for terrible things to happen, because my Good Shepherd never sleeps (Psalm 121:4) & is the Most reliable of guards.
Thanks be to God, Who knows my needs better than I do!
---------------------------------------------------Here's a really helpful resource recommended by our pediatric neurologist:
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