The Kristen Chronicles, Part 2


(August, 1985) After spending a week at Children’s Medical Center to find the reason for Kristen’s infantile spasms, it took one crucial day — one moment, really — to completely upend our lives. After those words, tuberous sclerosis, everything changed.

Suddenly we had a new vocabulary. Infantile spasms. Angiofibroma. Genetic counseling. CT scans. Pediatric neurologist. Chronic. Incurable.

My head was spinning. I was dazed. Just a week before, we’d been young, carefree, concerned but optimistic parents. So positive that everything would turn out okay. Because it always had been. But now . . .

Now, I felt dried up. Like every bit of joy had seeped out of my body.

How were we supposed to deal with this? Our sweet angel had a disease we could barely pronounce, let alone understand. When the doctor told us the long list of things that were characteristic of tuberous sclerosis, there were only two things I heard: “We really can’t predict how these will show up in Kristen. We’ll just have to wait and see.”

I didn’t want to hear that. I wanted guarantees.

But there was something else I couldn’t get past, the thing that dwarfed all other symptoms of this dreadful disease — “Most children with tuberous sclerosis are developmentally delayed to some degree.”

IMG_4344Photo from Dec 2015 Photo Stream (1)

Developmentally delayed? My child? My Kristen?


No. No. No.

See, I had made a deal with God.

And when Kristen was born, I thought God agreed with me — I’d be lousy as a special needs mom. I didn’t have what it t00k.

I’d made a deal with God in the second trimester of my pregnancy.  Everything was great, until dream after dream revolved around a baby with special needs.  It upset me so much I became obsessed with finding what caused disabilities in utero. I would do whatever I could to have a healthy baby. But after all my research, I felt helpless — everything I could do, I’d been doing all along.

Finally, I had to face it: I wasn’t in control. I got on my knees and prayed. I pleaded with God not to give me a child with special needs. I listed all the ways I didn’t measure up.  No way would I qualify for that job. I wouldn’t be able to handle it.

After praying, I felt a sense of peace. I told Rick, “I don’t think God will give me what I can’t handle.”

When Kristen was born whole and seemingly healthy, my rejoicing went deeper than the average person’s. My dreams hadn’t become my reality. God hadn’t given me a situation I couldn’t handle.

But lo and behold, here I was, six months later. My dreams had become my reality. And I couldn’t handle it.

And here’s where I want to step out of the story and address something:

“God won’t give you more than what you can handle.”

People say this a lot. And there’s a certain amount of comfort in those words. But I don’t believe them. Here’s why.

I think those words put all the focus on us, when the focus should be on God.

In my situation, I was more prepared to be a teacher than a special needs mom.  I had extensive training for my profession. But for my lifetime assignment, I had no training, no knowledge of special services, no huge doses of patience or mercy — all I brought to the table was mommy-love. 

God was the one who came to the table armed with all the special stuff: goodness, mercy, extra-large doses of love and patience and kindness, wisdom, strength . . . all the things He knew I’d need in the coming days to parent this child.

And I’m still going to Him to fill my cup, because it needs filling all the time. Life as a special needs mom is rough, beautiful, hard, tender, and always surprising.

Like my next surprise: being mad at God.



The Kristen Chronicles, Part 3, posts on Wednesday, December 23, 2015

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