Pressure We Put on Our Kids

Recently I've begun to understand pressure that I've put on Holly without even realizing it. I think most of us moms are impressed with the courage with which our children face their many challenges. And, I don't know about anyone's kids but mine, but she rarely seems to complain.

Instead of encouraging her, my comments to her along those lines, as well as those of other people, have made her feel that that is what is expected of her. I think I've made her feel that I won't accept anything less than a brave face and an uncomplaining spirit. I've put unreasonable expectations on her, especially now that she's dealing with a second brain tumor in addition to CF.

Sometimes she hurts. Sometimes she's angry. Sometimes she's discouraged. Sometimes she's tired. Sometimes she needs a shoulder to cry on. Sometimes she needs to be left alone. And it's all OK.

I don't need her to be any different than what she is at any given time. I think it's imperative that we let our kids, even if they're adult kids, know that we're no less proud of them when they are in a bad mood than we are when they're in a good mood. They've been given major challenges that they deal with every day. Pills; treatments one, two, three, sometimes even four times a day. Their lives are scheduled around CF. It gets old even when life is "normal," and then come the lung infections, difficulties breathing, transplants, brain tumors.

When these unexpected situations hit, none of us knows what to think, how to feel, what to do. Yes, we absolutely need to be able to have our feelings about these situations and to express those feelings. But we also need to be aware that our children, small or grown, watch our reactions and take cues from us. If we fall apart, they know they have to be strong for us to keep us from getting even more upset. Or they learn hysterics are the right reaction. But if we're stoic and show no feelings, they think no feelings are allowed. And it doesn't help if, when they cry or get angry, we say, "Oh no, don't cry. It's going to be OK." Right then, it doesn't feel like it's going to be OK. We probably don't feel like everything's going to be OK. So why do we expect our kids to feel that? We say it because we are not comfortable with their pain, their fear or their anger. They're our children, after all. We love them more than life itself. We would gladly trade places with them. But our discomfort with their feelings tells them those feelings are not OK, so no matter how they feel, they pretend to be fine.

Sometime our kids need us to give them permission. As their parents, part of our job is to teach them what is and isn't appropriate. That includes teaching them to control their feelings. If they're angry with a friend, they can't just go punch the other kid. That makes dealing with feelings associated with CF  particularly tricky. We need to give them permission to have their feelings even if they're so-called negative feelings. If it sounds confusing and a bit impossible, well that's because it is confusing and, though it's not impossible, it sure isn't easy! We have to demonstrate our own appropriate feelings to them, and we have to let them know their own feelings are OK. We need to tell them we understand their anger, and we share their sadness, disappointment and fear. Our feelings regarding our children and their health will always be complicated and must be handled with thoughtful sensitivity.

Anger at God

When Holly was diagnosed at 7 months, I was first overcome with deep sadness. This beautiful baby for whom I had so many hopes for the future, the child I longed to get to know was threatened by an ugly disease. Would she be a girly girl who loved bows in her hair or would she be a tomboy with perpetually skinned knees? Would she be musical, like me? Or would she be an organizational whiz like her dad? Certainly she would be beautiful; we could already see that. We were hoping she would grow into a compassionate and caring woman. Now I was wondering if she would live long enough for us to learn any of those things.

As I was grieving the potential loss and the certain hardships in her future, anger began to bubble up.  It roiled and boiled in my stomach and forced its way upward, closing my throat until it ached, moving through my tear ducts forcing hot, salty tears to make my face wet and my nose run. Then it flew out my arm as I pounded the steering wheel. It screamed out my mouth, and I yelled, "NO! IT'S NOT FAIR!" I screamed at God and told Him, "You want to teach me something, you teach ME, NOT MY CHILD!" I was furious, so I raged on, as Shakespeare said, troubling "deaf heaven with my bootless cries." At least that's how it felt. Small and helpless as I was, I was shaking my fist at the God of the universe, and He wasn't answering.

He eventually did answer, though not from a booming voice from heaven or a bolt of lightning to strike me down for my daring insubordination, but by reminding me of things I'd read in the Bible. He reminded me of His special love for little ones and for ones who are frail. What God wanted from me was trust. Would I trust Him to take care of Holly in His own way even if it were painful for me? I wanted answers that I didn't get. I wanted to know that she would live a long life. I wanted assurance that she would be happy. I wanted God to take it back. Take the CF away. I wanted some doctor who would redo the sweat test and find the first had been wrong. I wanted to know she would be OK. After all, she was my baby. She held my heart. I knew that anything that hurt her would probably hurt me more. Certainly what happened to her would hurt more than anything that could happen to me. Since God didn't give me any of those answers, I needed to listen to the answers He was giving me to know how to deal with the future.

And then I knew. It was as if God had whispered to my mind. "Love her. Just love her. Love her more than you love yourself. Let me do what is best in her life, even if it means watching her hurt, even if it one day means watching her die." It's hard to imagine how or why a good God would let those things happen. But we live in a world that is not the way God created it. We are not the perfect beings God created us to be. Disease and pain entered the world when Adam and Eve took a bite of that fruit. In spite of that, God can make good happen out of awful, seemingly senseless situations. I don't know how He does that, but I've seen it happen.

I've learned a lot since that day 32 years ago. I've learned that it's OK to be angry with God. He's a big God. He has big shoulders, and He can handle my anger (and yours). I've learned that He faithfully hangs on to me and keeps me going when I see Holly hurting, and she's hurt a lot in her life.

Too much for her 32 years. Her first hospitalization came when she was seven and then yearly for the next few years. When she became a teenager, severe sinus disease and persistent polyps brought on more than 20 surgeries. In one when she was 17, the surgeon opened her up ear to ear across the top of her head. She shaved her head in preparation, and we learned that she looked pretty darn cute with no hair! That surgery brought on two very serious blood infections that nearly took her life. then in her 20s her life was pretty routine for a while, with hospitalizations here and there. It even got better for a while after her daughter was born.

Then 3 1/2 years ago she was diagnosed with a brain tumor. It had to be removed immediately. A long difficult recovery followed, along with six weeks of radiation that took her hair and her energy. Recently, still not completely recovered from that ordeal, she got the news of another brain tumor. This one inoperable.

In the midst of all the hospitalizations and illness, I watched God work good in her life as He brought her a loving husband who understood that she was worth dealing with all the crap of CF. God gave her a precious daughter who brings untold joy to all of us. I have watched Holly reach out to others who are hurting with boundless compassion, because she knows what it's like to hurt. She has become an amazing person, whom God uses to bring joy into the lives of people she doesn't even know. She is indeed the product of God's grace.

I still get angry at God sometimes, like when Holly told me about this new brain tumor. Now, however, I move quickly into gratitude for His immense goodness. After all, He gave me Holly. What could be better than that?  Still, four years later, he gave me another beautiful daughter, Vanessa. More proof of His love. When I was first told that Holly had CF, the doctor (woefully out of date) said she probably wouldn't live to school age. Then I learned that age 18 was 50/50. And just before Mother's Day we'll celebrate her 33rd birthday. If I had no other proof of God's love and goodness than that, it would be enough.