Musings by a parent of a child with special needs
"Yes, I think there may be something wrong with your daughter." With these words, he set us adrift. In a tiny boat with one oar for me and one for my husband, the doctor untied the rope that secured us to the dock and we set out against the vast ocean and all of its waves and weather.
We search up and down the coast for help, a safe harbor; but our boat is hard to paddle. We are loaded down, the boat filled by our four small children and the two of us. We love our children and will do whatever it takes to help our daughter.
We find the dock of one specialist. We are relieved and hoping for help and guidance. "May we dock here a while?" we ask. We are scared and have many questions. "Only for a small time," they tell us. "Then you must move on. We are busy here, there are many in need of help." They hand us papers saying, "Read this. Do that. Take these over there," pointing vaguely into the mist. Then our rope is untied again and we are set out to sea once more.
From one dock to the next we paddle our boat. Each specialist places something more in our care: a list of things to do; things to watch for; books to read; ideas to try. Again and again they cut our rope and set us adrift, but the weight is pulling our boat under. We are taking on water.
I am tired. I look at my husband, he is tired, too. But we must paddle on. We look at our daughter and together we sigh, "We are doing this for you. You are worth it." We look at our other children and say, "We are doing this for all of you"
Looking toward the shore we see our friends and family. They wave with friendly smiles on their faces. "Come join our party!" They shout there invitations over the oceans monstrous roar. "It's a nice day for a party on the beach." We try to head into shore, but our boat is too heavy now and we are too weak to fight the tide. Why won't they help us?
Then we look around us and notice we are not alone out here on the waves. All up and down the coast there are other boats just like ours. Some have only one oar, some have two. Some are filled and sinking, while others are not as full, but are beginning to take on water. Are there too many of us out here to save? Do the people on the shore see the panic, the fear, the exhaustion on our faces? Could we band together to save one another?
As the mother of a daughter recently diagnosed with a neurological disorder resulting in seizures and developmental delay, these are just a few of my thoughts. The world can be a lonely place for the disabled and those who care for them. If you know anyone with a disability or a caregiver of a disabled person, offer help, share a smile or a word of encouragement. Believe me, we all need it.
We search up and down the coast for help, a safe harbor; but our boat is hard to paddle. We are loaded down, the boat filled by our four small children and the two of us. We love our children and will do whatever it takes to help our daughter.
We find the dock of one specialist. We are relieved and hoping for help and guidance. "May we dock here a while?" we ask. We are scared and have many questions. "Only for a small time," they tell us. "Then you must move on. We are busy here, there are many in need of help." They hand us papers saying, "Read this. Do that. Take these over there," pointing vaguely into the mist. Then our rope is untied again and we are set out to sea once more.
From one dock to the next we paddle our boat. Each specialist places something more in our care: a list of things to do; things to watch for; books to read; ideas to try. Again and again they cut our rope and set us adrift, but the weight is pulling our boat under. We are taking on water.
I am tired. I look at my husband, he is tired, too. But we must paddle on. We look at our daughter and together we sigh, "We are doing this for you. You are worth it." We look at our other children and say, "We are doing this for all of you"
Looking toward the shore we see our friends and family. They wave with friendly smiles on their faces. "Come join our party!" They shout there invitations over the oceans monstrous roar. "It's a nice day for a party on the beach." We try to head into shore, but our boat is too heavy now and we are too weak to fight the tide. Why won't they help us?
Then we look around us and notice we are not alone out here on the waves. All up and down the coast there are other boats just like ours. Some have only one oar, some have two. Some are filled and sinking, while others are not as full, but are beginning to take on water. Are there too many of us out here to save? Do the people on the shore see the panic, the fear, the exhaustion on our faces? Could we band together to save one another?
As the mother of a daughter recently diagnosed with a neurological disorder resulting in seizures and developmental delay, these are just a few of my thoughts. The world can be a lonely place for the disabled and those who care for them. If you know anyone with a disability or a caregiver of a disabled person, offer help, share a smile or a word of encouragement. Believe me, we all need it.
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