April 17, 2018, is World Hemophilia Hemophilia Day. Before you tune out because you don't have a loved one affected by my son's rare bleeding disorder, listen to this year's theme — "Sharing Knowledge Makes Us Stronger." That's a theme I find to have relevance far beyond the hemophilia community. In fact, I would say that the theme of strength in sharing is extremely apropos for every parent raising a child with a chronic illness, disability, or special needs.
Here are 6 ways that I find sharing empowers parents just like me:
- Sharing ends isolation — One of the toughest battles I have faced as the parent of an exceptional kid is feeling alone. That sense of being an outsider where no one is like me can incite despair. I lose all sense of perspective. But when another parent shares with me, a tiny spark of hope ignites. Just knowing that I'm not alone on my journey to care for this child — that someone "gets it" — can help me to press on. I also feel less isolated when my son's treatment center, social worker, and nurse coordinator share resources with me. Suddenly, I don't have to figure everything out by myself in the midst of crisis.
- Sharing helps us to mentor through experience— We were never meant to keep our blessings to ourselves. In 2 Corinthians 1:3-4 Paul writes, "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."Early in our journey as parents of a challenged child, people help us. They share tips, encouragement, and direction. As we grow, we become empowered and empower other parents by sharing what's been imparted to us. Nothing makes me feel more competent than to walk alongside another parent who finds my experience useful. It gives my journey purpose.
- Sharing uncovers resources— Nothing will energize me quite like discovering a previously unrevealed resource. Some of the most wonderful conversations I have ever had with other parents have begun with the words, "Have you heard about..." Most recently, I learned that our son may qualify for services through our Department of Vocational Resources. We applied and he did qualify. This enabled him to become eligible for financial assistance with college. I cannot overstate how empowering it is to lead others to much-needed resources.
- Sharing builds community— Abandoning the mentality of "Every man for himself," fosters development of the bonds of shared experience. As my son's medical team shares research, treatment options, and resources with me, they become part of my community. I have found that a certain cohesiveness blossoms in the midst of mutual sharing. All the concerns, difficulties, treatments, and lifestyle battles that we have in common bond us together. And that sense of community strengthens each of us individually.
- Sharing validates individual experience— "Is it just me or...?" Have you ever uttered those words before? I have. But I feel tremendously validated when I hear others share relevant experiences. Being listened to also affirms me. Something so simple can be such a positive lifeline to each of us.
- Sharing helps all of us reach higher— As we share resources and experiences, deficits become exposed. The areas that need improvement suddenly become more apparent to us. We can brainstorm on possible solutions to common obstacles. Our momentum builds as we pool assets, connections, and knowledge to tackle tough issues. I have personally been involved in legislative advocacy for people with bleeding disorders in the past. I cannot adequately convey how gratifying it feels to see that piece of legislation you were fighting for getting written into law. That is only possible through a combined effort on multiple levels.
Who Will You Empower?
Parent, I know you may be weary. I know you may be in search of answers yourself. Perhaps the answer to my question is, "Myself." Take heart! You will not be in this place forever.
Remember how you have been strengthened by others. Pass on the blessings in small ways as you have the opportunity. Build community and share knowledge along the way. Because "...A cord of three strands is not quickly broken." (Ecclesiastes 4:12b, NIV) Together we are strong.
* Visit World Hemophilia Day 2018 for more information.
