Before marriage and children, I had a lot of time for quiet times, for bible studies, for conferences, for watching sermons on line. I had so much more time and energy for spiritual discipline. Since then, my efforts have been re-directed toward taking care of small children. A natural consequence of not spending as much time with God as I used to is that my passion for God has lessened. I get so caught up with my to do list and my calendar that I literally forget how blessed I am, how wonderful God is.
Angela Thomas writes that the hardest prayer of all is "God, do whatever it takes to restore my passion." My legal training requires me to analyze every word that is used. So that statement stops me in my tracks. "Whatever it takes?" Yikes! Can I narrow "whatever?" Can I set some limits on what I am willing to accept in "whatever?"
Sometimes I think that Catherine, my eldest daughter, has given me a lot of "whatever." During my pregnancy with her, the doctors told us she would probably not live. She spect a few weeks in the NICU. She has refused to eat from birth. She has had countless operations. She has grown at a snail's pace. Finally, when I thought we had dealt with as many medical issues as we could, she was diagnosed with brain cancer at the young age of 27 months. Then we watched chemotherapy weaken her already fragile, 22 pound body. The cumulative effects of 18 months of chemo required nearly weekly trips to the ER, platelet transfusions, whole blood transfusions.
Still, despite everything we have been through with Catherine, I am blessed. Over half of the children diagnosed in utero with Catherine's issues do not survive the pregnancy. A lot of babies never make it out of the NICU. We live close to a major children's hospital with fabulous doctors, nurses, therapists and other medical personnel who have been able to repair her heart, spine, kidneys, bladder, colon, foot, eyes, ears, and stomach.
Catherine's brain tumor was called an "optic glioma." At the time of her diagnosis I had never heard that term, which sounded scary (and of course it was scary). But I have come to meet tons of parents of children with brain tumors. I have come to learn that other brain tumors, which carry names like meduloblastoma, AT/RT, craniopharyngioma, glioblastoma are MUCH scarier. The survival rates are significantly lower. Brain damaging radiation and surgery cause lifetime injuries. Small children can suffer strokes (which I thought was only for old people).
Sadly, we have known several toddlers, school aged children, and teens who have died from brain tumors or other cancers. Every time I see their parents I am reminded that pediatric cancer is real. It is not a made for TV movie. It is not a St. Jude's television commercial.
It is Mommys and Daddies with empty laps. It is having Dr. Seuss books with no one to read them to before bed. It is Barbie dolls and sitting on a shelf. It is releasing balloons in a child's memory on a birthday. It is lighting a candle at holidays for your child in heaven. It is listening to you friends complain about the "high costs" of back to school shopping when you would give your left arm to be able to send a child to school this fall.
So far my "whatever" has not included the loss of a child. Sometimes I feel like an imposter at brain tumor and cancer events, because my daughter is doing so well.
Yet I do not want God to ever feel like He has to give me more suffering to restore my passion. I still fear that Catherine will relapse, or that something else will happen to her. Or that something will happen to Sabrina. But I also know that whatever happens, it will be "OK." It may not be great. It may be horrible. But it will be what it will be.
Despite having several boxes of medical supplies delivered to my door every month and buying parking passes at the children's hospital by the month, my life is full of joy and love.
This post was inspired by the book "Tender Mercy for a Mother's Soul" by Angela Thomas.