This post is part of The Mother Letter Project.  You can learn more about the project on The Mother Letter Project blog.  For the purposes of that project, I address the letter to mothers, but what I say applies to father's as well.

Dear Mother,

Oh my, this is not what you expected.  You dreamed of a perfectly healthy, “normal” child, we all do.  You’ve known something isn’t right and now, there is this “diagnosis”, this label, this thing that states you didn’t get what you expected.

Grieve Mother.  Go ahead and grieve the loss of the perfect child of your dreams.  It is ok, the sadness, the fear, the worry, they are all normal. So pound your fists, and have a good cry.  The sooner you let it out, the sooner you can move on.  Your child is the same, only the path you will travel has changed.

Love your child and educate yourself about the condition. Take little bites and compile a list of resources you can consult when you need additional information.  Seek out families with children who are older than yours and the same age as yours.  Ask them your questions and compare experiences, but remember, no two children are ever the same.  Take what you learn and view it through the filters of your life and your child’s personality.

Take care of yourself and be gentle with yourself as  you adjust to the changes created by the diagnosis.  Sometimes the best thing to do is nothing at all

As your child grows, you will become an expert in acronyms such as IFSP, IEP, M.D., O.D., PT, OT, TVI O&M, NCLB, ADA and on and on and on. Many will have opinions, but remember that the one that counts the most, is yours.  You are an expert on your child. If a remedy doesn’t feel right, don’t do it.

One last piece of wisdom, and to me, this is perhaps the most important. Don’t say “You can’t do that.”   Instead, allow your child the time, space, and tools to find his or her own limits.

The hardest thing in the world is to watch your child struggle but it is these challenges that will build inner strength and develop the coping skills necessary to thrive as adult an adult.

And so Mother, grieve the child you lost, love the child you have, learn as much as you can but remember to be kind to yourself.  Give your child the wings to fly and someday when you are able, share your experiences with others.


Best wishes,

Lee
Woman with albinism and mother of two children with albinism.