Sound familiar? Well, take heart. There is a wonderful community of folks who are there for you, cheering you on — you just haven’t met them yet.
Let me introduce you to some of your champions. They include the experienced parents whose children are grown, yet who never hesitate to reach out to help new families who are struggling to understand a diagnosis or find the right door to access a helpful service. They are the volunteers who work tirelessly on events that bring in needed funds so we can continue to help you. They are our individual donors, 65% of whom do not have children with special needs, but who nevertheless feel the powerful urge to help. Help you.
You may never actually meet these folks, but they are there for you and your child, doing their part to make sure you don’t have to manage all by yourself. Several years ago I heard a conference speaker, a native Hawaiian mother of two sons with significant disabilities, use the powerful imagery of the Polynesian culture to address that feeling of isolation:
“This is where the process can become exciting as well as anxiety-producing…you may be steering your canoe into uncharted waters with unfamiliar guiding stars, winds and currents. You may need to invent a compass for this voyage that is custom-made for the unknown. You may need to search for someone who has steered this course or one similar to yours. You will need to trust in yourself and in those with whom you travel. You will sometimes feel alone, but know that you are not alone. There will be in spirit a flotilla of canoes with you and your family through every reef and every set of rolling surf. The canoes will be filled with children and their parents, their siblings, their teachers, their doctors and nurses, their friends and relatives.”
I would add volunteers and donors to that flotilla of canoes, plus the families who have come before you and those who have yet to set out on this journey. They — and we — are all rooting for you, and many are there to help you make this journey.