For the next few Wednesdays, I’d like to share a story very dear to my heart: the story of my sweet Kristen.
Actually, it’s more the story of how the gift of Kristen changed my life in every conceivable way. My daughter has brought reality to Romans 8:28, “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.” This has been a journey I never imagined or wanted, but I’m so grateful for it. I would never choose another kind of life over the one God has graciously given.
This journey began when I was pregnant with Kristen. Â Early in the pregnancy, we were told there were no signs of life and to prepare for a miscarriage. Â We were devastated. Â She was our first. Â The beautiful long-stemmed rose of celebration Rick had given me when we learned we were having a baby was still vibrant and blooming in its vase, a stinging reminder of how quickly things can change.
And then the phone rang. Dr. Cutrer’s voice had a slight tremor. “I think I’ve seen this maybe one other time in years of practice — your blood test showed that you’re still pregnant. Praise God.”
My blood showed what my body and the sonogram hadn’t — there was hope.
After nine nervous months, I gave birth to a healthy baby girl.
Praise God! She had all her toes, fingers, limbs . . . oh, the relief!
Rick and I were young, proud, attentive, doting, educated parents. Was there any more beautiful baby than our little angel? Of course not. Was there any more precious gift from God than this? No. Â And to prove it, I measured her progress in photos and jotted notes in her book. I read all I could about current baby-raising philosophy and read picture books to her. I made sure this little one was doing everything on time: smiling at two months, check. Â Holding her head up at three months, check. Â Turning over at four months, check. Â Holding objects, check. Sitting up at six months, check.
And that’s where this story slows down. Way down.
When I was dutifully/dotingly helping Kristen sit up on her own one evening, suddenly she took a nosedive. Then she was up again.
“Woopsy!” That was weird, I thought.
Then, nosedive again. Up again.
“Oh, honey — what’s goin’ on?” Taking her little hand, I noticed she was trembling. Her blue eyes were filled with tears.
But as soon as I saw them, she was taking a dive again — and up again.
“Oh my gosh — baby!” I wrapped her in my arms, but I could feel her body convulse forward every few seconds. Â After about five minutes, the whole thing was over, and she began fussing. Â Her fussing had been constant over the past month, making me feel like I was doing something wrong. Â What that was, I had no idea. Â Spoiling her maybe? I didn’t know. But fuss, fuss, fuss. Everywhere, anytime. The only time she didn’t fuss was when she was asleep. Â So when I didn’t hear the fussing a few minutes later, I took a peek at the lolling head on my shoulder and was surprised that at 6:30 pm, she was asleep. Â Weird.
Two weeks later, after a failed doctor’s visit and days filled with four “spells” a day, we were with Rick’s sister and her husband, a pediatrician, for the weekend. We described these spells: predictable, 9.5 seconds apart, same down/up, hands out movement w trembling, lasting 5 minutes, goes to sleep afterward. Â After hearing that, then witnessing one of Kristen’s spells, Scott thought they were infantile spasms, and referred us to a neurologist friend at Children’s Medical Center.
And I want to just take a moment to say this: my eyes fill with tears every time I think about the role our family has played in this journey. God has used every member of our family to encourage us at some time along the way. And at this particular time, having Scott at this place and time was so … God.
Our own pediatrician, two weeks earlier, had blown off the same description: “I think it’s just her way of going to sleep.” Over the years I’ve had to work through a mountain of anger with that doctor’s name on it, and it threatens to roil up within me now as I remember the quick way we were dismissed. But it was my first lesson in advocacy (which I failed). Parents, spouses, family members are the ones who are there, day in, day out, knowing the history and the norm. If we don’t speak out and say, “But I don’t think this is right,” who will? Advocacy doesn’t mean rudeness (the Southern girl speaks!); advocacy means speaking on behalf of those who can’t. If I could do it all over again, I’d return to the doctor and say, “Could you just check her again? I’m not comfortable with what’s going on.”
In the coming days, I would continue to learn how to speak on behalf of my child after checking in at Children’s Medical Center in Dallas. There, we would find the infantile spasms were not only a type of seizure, but a sign of somethingÂ much more devastating to our family’s future.
Part 2 of The Kristen Chronicles, Wednesday, 12/16/15