It is not exclusive. It welcomes with open arms. New members often have a heavy heart. And a lot of questions. Veteran members have strong shoulders from carrying heavy loads. They have happy faces and sometimes tired eyes. They offer support and wisdom and take the newbies under their wings. They know acceptance. And have spent many hours, days, weeks, months, and years advocating for their child. New members will find their way there too. First, they search for every cure. Try every therapy. Go to every specialist. Every doctor. Any way to make things different. Better. Learn more. They put off getting a wheelchair or special stroller and when they do, they are reluctant to use it at first. When they are ready, they are proud to use it. To give their child that extra support and independence.
Veteran members offer advice and support. At all hours. Because their schedule is not 9-5. They are there for you when your child is sick or in hospital. Or when he has a video to vote for to bring visibility to disability. Through the inch-stones and setbacks.
Sometimes newbies get to acceptance early on. Life moves forward because you are living it rather than trying to change it in ways that cannot be changed. But this club does not judge. And it gives you all the time you need to get there. Most don’t apply, so arriving can be confusing and heartbreaking. But once you are in, it is for life. And we’ve always got your back. Because club members become the closest friends, those whom you may never meet, and those you become lucky enough to meet too. They become your extended family.
I’m sad this week. I’m thinking about one of those club members that needs prayers and thoughts for her family. And for us to believe in miracles. Like the one her son Gavin needs. We’ve been ‘friends’ since the early days of Sebastian’s diagnosis. We have prayed for each other’s children. We have shared in their successes and their struggles. And we have never met. But we are there for each other. We are connected through our children. Please keep Kate and her family in your thoughts and prayers. Check for updates on her blog and FB page, Chasing Rainbows.
I wrote this post this morning and after I returned home from picking Seb up from school, I saw Kate’s update on Gavin. My heart is breaking for a family I have never met saying goodbye to their super hero son who has touched so many lives. I will miss reading about his successes and send prayers for strength and peace to his family. And love.