What it Means to Be a “Special Needs Mother”
SEPTEMBER 22, 2016
Mighty Joe had a seizure yesterday. A big one. We didn't see it coming at all, and since it lasted over 10 minutes and he lost all control, we called 911.
Seizures look worse than they are, but because of Joe’s history and the irregularity of this one, we decided to drive him 90 minutes to the children’s hospital where he has been cared for each time.
The visit there was rather uneventful; his lab results came back normal, but the decision was made to start him on anti-seizure meds, a choice we knew was going to have to be made at some point. Yesterday was that point.
Until Joe, I had never been a “special needs mother”. And I couldn’t grasp what comes along with that. For me, the reality includes recurring nightmares of watching Joe get hit by vehicles as we walk down the road, outbursts that are punctuated by smothering love and cuddling, and beautiful triumphant rays of something luminous in his mind in the midst of the struggles to learn to read and the inability, still, to tie his shoes.
I live each day in a state of heightened stress. I used to say that the hardest thing about mothering is that you never feel like you are truly “off “, and that you always have to be aware of what is going on. Having a special needs child amps that up by about 3,000,000,000%. In the past month alone, Joe has found his dad’s heart medication in a cabinet once thought unreachable, written with a Sharpie marker on our brand-new van, stolen his brother’s Lego candy, and destroyed everyone else’s schoolwork. I suppose we could be accused of not watching him well enough, but that’s the thing about a child like this: there is no well enough.
I steal myself away to the closet or the bathroom several times each week just to cry. It isn’t always about what he’s done, but it is often about his future and our role in that.
If I did not know God intimately and over so many decades, I’m not sure I could trust him, but I do. I do not think that he will heal Joe’s brain in the here and now. I do not think he will close up the holes that were left by enterovirus when he was a baby and fill them with working brain matter. I do not think we have seen the worst of what that damage will manifest in Joe’s life; we haven’t even hit puberty yet. But as the old hymn says,
“I know Whom I have believed,
And am persuaded that He is able
To keep that which I’ve committed
Unto Him against that day.”
That’s actually from 2 Timothy 1:12.
That’s all I’ve got. Nothing substantial or life-changing or earth-shattering for you. But I can cling to and trust in him and know that God has this. He didn’t sit in heaven and one day wonder how Joe got so sick. He isn’t in shock that Joe woke up with a giant seizure yesterday. But he is able.
Because he is, so am I.
This post originally appeared here.