There was no one moment I knew my trajectory had changed forever. It happened by degrees. 

Your newborn needs to be transferred to a NICU; do you choose this city or that city?

These children usually don't live past a year.

She needs to wear this harness round the clock for a month or her hips won't develop.

Is she blind? Yes. 

Will she ever walk? I don't know.

She must have spinal surgery or one fall will kill her. 

She may never sleep on a normal schedule. 

She has a kidney abnormality. We'll watch it. 

Life changed the instant she was born, of course, like it does for all parents. In fact, life changed the moment two pink lines appeared on a test instead of one. But prospective parents and brand new parents have something of an expectation of how life will progress. From the developmental milestones like walking and talking, to the life milestones like kindergarten, graduating high school and college, marriage, and children of their own. A sort of film reel plays in the back of your mind, so faintly yet so inexorably, that you may have never noticed. This will happen. Then this. Then this. This. This. This.

By degrees the film reel of our life sputtered, slowed, halted. It's not to say I don't anticipate the future with both excitement and fear. But the basic storyboard is gone. The film reel will never begin rolling again.

Now we draw our own storyboard with no expectations except that tomorrow will be better than today. And if it isn't, we will surely learn some lesson for the day after that. 

My name is Lea Mayo. I'm 36 year old Mommy to Windsor, wife to preacher husband James, and dog-mom to our wild doodle Tobah. From the farmlands of Tennessee, I now make my home on the sunny Treasure Coast of south Florida.

My daughter Windsor was born with multiple disabilities including developmental delay, blindness, and hypotonia. She's a S.W.A.N. - someone who has a Syndrome Without A Name. Despite extensive testing and consultation, doctors have no idea why she was born with the issues she faces. But she does face them! Every day! With heart, with fight, with the most adorable giggle, she works harder that anyone to achieve her goals. And because of her, I've become who I am. Mother. Advocate. Activist. Windsor teaches me strength and determination. In turn, I share endurance, hope, and resources with other special needs families via guest articles on stucrewfun.com and on Instagram: @WorldofWindsor. 

Disney with your Special Needs Child