This weekend, I am in Chicago with Johanna and my older daughter, Anna. We are visiting the CCM3 Clinic for a special type of MRI and an evaluation with gives us some outside opinions for Johanna’s case, as well as advancing the research for a cure.
I was a little nervous making the trip so soon after Jo’s last surgery. But even if we planned the appointment later, there was always the possibility that we couldn’t make it. I really wanted to be in Chicago now, to meet a special friend of mine also visiting from California and to spend time with family. It’s all a part of my strategies for maintaining hope in the midst of these trials — for breathing when I feel like I am drowning.
Believe – Restore – Exercise – Advocate – Take Time – Heal – Engage
This weekend and this column is about learning to engage.
The definition of engage is to occupy, attract or to hold someone’s attention. Engage also means to participate or become involved in something. Engage is a vitally important strategy for thriving in trials of life and for me it is as important as believing that God has a plan. Engaging is about connecting, with ourselves, our struggles and with others who walk alongside us on the journey.
I met my friend Liz, who lives in California, online, through the Angioma Alliance, which is the grass roots organization searching for a cure for cavernous angiomas. I remember the first time we spoke on the phone. It was as if we had known each other all of our lives. The more we talked, the more we had in common. The first was obvious; Liz and two of her three sons have CCM3, the genetic disease that affects my daughter. Her sons have struggled with brain hemorrhages and have had brain surgeries as well. Liz is the only adult that we know who has CCM3 but is not symptomatic. She gives us all hope! They are also devout Catholics with a vibrant faith. Belief is the foundation of their success in dealing with this disease. Liz and I laughed out loud when we realized that we were both homeschooling families as well. Our conversations were more than the details of life. They were opportunities to engage a kindred spirit and offer one another support along the journey. We met in person two years ago when we hosted a fundraiser for the Angioma Alliance and a deep bond was formed. This weekend in Chicago, our kids will get to meet as well and share in camaraderie and faith.
This is our fourth visit to the Chicago clinic and each time we come, we stay at the Ronald McDonald House near the hospital. Families whose children have life-threatening medical issues stay here with their kids to receive outpatient services or to provide respite for themselves while their child is in the hospital. The Ronald McDonald House is a busy place. There are opportunities for families to engage in activities and to share meals. Stories are shared in conversations, in glances and in the journals that are placed in each guest room. As a writer, I find the journals in the room to be a powerful gift to help us engage with each other’s stories and with the strength of human connections born from the struggles.
This week, a young girl I have never met engaged my own heart in a conversation as she shared her heart in the journal on the desk in our room. Her words touched me deeply. When she and her family stayed at the Ronald McDonald House, she wrote; “I have a lesion in my brain..I have seen a lot of doctors because my legs always hurt and they think it’s from the lesion. I have to sit and watch my friends play because it hurts to play and dance.”
As I read this little girl’s words, I felt her pain. Then, from the pages of the journal, this child engaged my heart with compassion and hope: “If your family is going through tough times, don’t be afraid to ask for help and I’ll pray for you.”
During our stay in Chicago, I had the opportunity to speak to a support group for parents of children with Down’s Syndrome. While the Internet limits some of our connections with each other to “likes” and status updates, it also provides us with opportunities to engage in support and conversations with people we might not otherwise meet. That’s how I ended up giving a talk in Chicago. The leader of the group heard me interviewed on a Catholic radio program and then reached out to me through my website, asking if I would consider speaking to their parent support group. As God would have it, our visit to Chicago coincided with World Down Syndrome Day and that happened to be the only night I had available to speak. The group celebrated their special day with me.
I shared my stories: the joys and the challenges in the context of breathing underwater. As I engaged these beautiful parents in the seven strategies through the acronym breathe, I was uplifted by their laughter and touched by their tears. Each one of them had their own stories to tell of how their special children, often misunderstood and rejected, have blessed their lives with deep meaning and purpose.
The final strategy brings me back to the beginning: alone in the ocean trying to stay afloat. My ocean nightmare became a vision for survival. Engaging with others for support, taking time to heal, exercise and advocate all help me believe that the dark ocean of trials is mercy in disguise. I have learned that we are never alone in our struggles. When we feel stress and tribulations mounting above our heads like the rising tide, we are but one breath away from finding new life and new hope.

