There is no way to prepare yourself for hearing the words: "I am sorry but your child has cystic fibrosis." In our case, we had never heard of CF. There was no family history, no warning, and no reason to suspect anything was wrong.
We were joyfully awaiting the arrival of our first child, a boy. Two weeks before my due date, the doctor ordered a routine ultrasound. While we were gazing at the screen with excitement about seeing our son, the doctor was looking with concern at something else, "something unusual." He ordered an immediate C-section. That "something unusual" was meconium ileus, caused by cystic fibrosis.
That day, that moment, is forever etched into my memory, heart and soul. The emotional climb uphill from shocked and overwhelmed to handling it generally okay has taken time.
The road to rebuilding shattered dreams is not a straight road. It is filled with hills and valleys, peaceful by-roads, and at times, hairpin turns. U-turns are often necessary. However, through it all, there are many unexpected blessings:
• We value each day, each breath, and each other.
• We enjoy life to the full. Don’t wait for tomorrow to live your dreams.
• We appreciate the good times and take advantage of a sunny day.
• We have learned coping and resiliency.
• We have grown in faith and compassion.
• We have an opportunity to help others.
• We can make a difference.
Our kids, both with CF, are young adults now. They are doing well and work hard to stay as healthy as possible. They are happy, well-adjusted, do well in school, have lots of friends, and enjoy life. They have many dreams for the future. They, too, have discovered unexpected blessings like perseverance, empathy, gratitude, courage and hope.
Yet our journey is far from over. It's hard to know where this crazy road will lead. But this we do know: we will take it one day, one breath at a time with hope leading the way.