Carrie will be a regular contributor here at 5MFSN. Look for her future posts on Sundays.
There are hundreds of books that guide you on how to be a good parent. Each book has a different spin on our job, but the majority of them assume a certain path of development for our child. So what is a parent supposed to do when they are suddenly faced with parenting a child that doesn’t fit any book’s criteria or expected development?
This is the position I am now facing after the birth of our third child, Hannah. Hannah was born in July 2008. After birth, she had an enlarged spleen, very low platelets, and an enlarged liver. After many months of tests to try and find a diagnosis, a skin biopsy has diagnosed her with Gaucher’s Disease, Type 2 or 3, a very rare genetic metabolic lysosomal storage disease with neurological and physical involvement and a life-expectancy of 2 years (if type 2) or possibly 15 to 20 years (if type 3) or so. There are only about 300 to 400 cases of Gaucher’s Disease types 2 and 3 in the world, and I have yet to find anyone with this disease in the Southeast Texas area.
Where is there a book on how to parent a child who may likely pass away before I do?
There is no such book, and as parents of child with rare, chronic debilitating or life-limiting diseases, syndromes, or disorders, we must create our own support system. We can learn from each other by sharing our experiences, our medical knowledge, and by being there to vent our frustrations.
Parents of children with rare diseases are part of a special family that no one wishes to be a part of, but once you are a member of this family, you create a unique bond with other parents of children with learning difficulties, emotional or behavioral problems, or neurological and physical limitations and disabilities.
I hope to create a special place here where friends and families of those who are learning to live with a rare disease diagnosis can find the support and information they need to provide the best care, be the best advocate, and to find the support they need to perservere.
Carrie Ostrea
http://www.littlemisshannah.com