How Do I Get Off This Ride?!
Riding the Emotional Rollercoaster of Your Child’s Diagnosis
by Lisa C. Greene
Up and down, around and around, out of control and going wayyy too fast. That’s how some parents describe how they felt when swirling around in the medical maelstrom that follows a child’s diagnosis of cystic fibrosis or another serious medical issue.
That’s how I felt when my son was born via caesarian section and whisked away into the Neonatal Intensive Care Unit (NICU) after three seconds of “bonding.” I saw him just long enough to know that things weren’t looking good. He had meconium ileus and was unable to breathe because of his severely distended abdomen. They wheeled me away to recover from my surgery and prepped him for his. Then came the words I’ll never forget: “I am sorry, but your son has cystic fibrosis.”
At age eleven, he is now doing great. His abdomen (and my heart) still bears the scars from that day. But I can say that, as impossible as it seemed at the time, life does get back to “normal.” In fact, much of the time, life is downright good. At the beginning, it wasn’t. That first year was really hard.
Experiencing Grief
When people suffer a loss, they go through a series of emotions. The stages of grief, first described by Elizabeth Kubler-Ross, are denial, anger, bargaining or questioning, depression and acceptance. As the parents of children with CF, we can expect to go through the grieving process several times throughout the course of their illness. Each new bit of “bad news” can bring us back to grief. This constant cycling through the grieving process is called “chronic grief” or “chronic sorrow.”
It helps to understand that this is normal because otherwise, we might think we are going crazy! We can be happy one minute and bawling the next. Even though we might feel far from normal, these reactions are just a part of the process. A surge of sadness can catch us by surprise.
The stages can come in any order; it’s not a tidy, predictable process, and there is no telling how long any of them will last. The journey to acceptance is a very individual, personal one. And of course our kids (both those with CF and siblings)will likely go through these stages, too. If you or your children are having a hard time working through these stages on your own--and are struggling with anger or depression-- get professional help.
Understanding Guilt
Guilt is another common emotion many parents experience. This is normal, too. However, guilt based in irrational beliefs can cause us to respond to our kids in unhealthy ways. Examples of the most common irrational beliefs:
It is my fault that my child got sick.
I must make sure my child is happy all the time.
It is my job to make my (older and capable) child stay healthy.
It is selfish or wrong to take time for myself.
The family is a mess and it’s my fault. I need to try harder.
These irrational beliefs can cause all kinds of ineffective parental responses like failing to correct misbehavior, showering the child with material things, taking on all of the responsibility for an older child’s medications, and not taking the time for good parental self-care.
The major problem with guilt is that when parents feel guilt, children respond with blame. Feeling guilt is a way of saying “I am responsible.” Then the child says, deep down inside, “Well, if you are responsible, then it must be your fault!” and blames the parent for whatever is going wrong. This does nothing for a healthy parent-child relationship. Nor does it move the child along on the road to personal responsibility. So, be aware of your feelings of guilt and the impact it can have on your parenting responses.
Different People Have Different Needs
Finally, be aware that people work through their fear, worry, guilt and grief in different ways. Some people want information, others don’t. Some people reach out for support, others need solitude; some cry, others don’t.
If you and your partner have different grieving styles, this can cause conflict. “He doesn’t care” and “She’s too emotional” are often heard by marriage counselors. There is no “right way” to grieve as long as you are able carry out your day-to-day responsibilities and maintain your other relationships. Give yourself and your loved ones the time, space, and freedom to grieve in their own way. Good communication skills are essential.
The good news is that, just like a roller coaster, the “newly diagnosed” ride eventually slows down and stops. Even in the toughest of circumstances, life has a way of becoming routine. You will find a new "normal." And you'll be able to look back and say, "As scary as that experience was, I survived!"
