In the early days and weeks after Coral’s diagnosis, some of the only words I could find were, “I grieve the loss of the child I thought Coral would be.”

These are words that few parents will ever understand.

It is a phrase that is filled with big emotions, expectations and perceptions. There is no getting around how living the rare life (1 in 15,000) in a society that is often uncomfortable with difference is challenging in a variety of ways.

When society paints parenthood in the typical, parents of children with special needs are often left without a road map. Everything feels so different. The parenting ego finds itself in unknown territory.

Many parenting messages seem to portray parenting as a completion of the parent through the child. I realize that Coral and Tate do not serve to fulfill my expectations of Motherhood. Rather, their lives are uniquely their own. I no longer frame Coral against an imagined Coral of pregnancy- full of expectations. I see Coral for who she is.

Now I see that the words, “I grieve the child I thought Coral would be,” have never actually been about Coral. These words have always been about everyone and everything else that makes me feel like Coral should be a certain way. Coral has always been exactly who she was meant to be.

So, I do grieve. But I do not grieve for Coral.

I grieve for a society who thinks that special needs parents should grieve.

I grieve for people who think that Coral’s life is less because of her challenges.

I grieve for the people who say, “I’m sorry,” after I share about Coral’s developmental differences. I know that intentions are often good, and people are lost for words. But I am no less sorry that my daughter is who she is than another parent is “sorry” that her child is who she is.

I grieve for people who disguise their discomfort with disability through pity.

I grieve for the parents who tell their kids, “Don’t stare.”

I grieve for certain aspects of the therapeutic model of intervention that tell me through whispers and nudges that Coral somehow needs to be “fixed.”

I grieve for the times I get so wrapped up in goals and progress that I forget to see Coral for the beautiful little person she is becoming. I grieve for how difficult it can be to find a balance between hours of weekly therapy and just letting Coral be.

I grieve for an educational system that in the end still requires my Coral fish to prove that she can be included in a classroom with typically developing peers. If her behaviors or needs are too great, it is suggested that she be placed in a separate class. I grieve for people who do not see that this is still an injustice and a disservice to ALL of our kids.

I grieve for those who do not realize that there is never an excuse for exclusion of those with disabilities in the community, in schools or at events. I grieve for those who choose exclusion over inclusion because it is neater, simpler, easier and more comfortable.

I grieve for a society that calls us to compare our children, our families and our lives. I grieve for the joy that is lost in such comparisons.

I grieve. But I refuse to grieve for Coral.

Coral is finding her way. The road can be extremely bumpy, but it is her road, her path. Coral has always been exactly who she was meant to be. Her life is not mine to grieve. Rather, I choose to celebrate a life that fought harder than most to get where she is today- to be alive, growing and developing. I celebrate a life that beat the odds- 47 chromosomes worth of rare.

 

Some of my favorite moments are the ones when I sit with her on the couch in the early morning, looking out the window onto our backyard hill. Everything is so quiet. The noise of the world- that tries to tell me what I should or should not feel about Coral’s life- is silenced. The perceptions, perspectives and expectations disappear.

Sometimes Coral looks deep into my eyes, studying me closely, as if she is discovering things about me that she has never known. During these moments, I find that I can finally see Coral for who she truly is.

When the noise of the world is gone, there is finally space for truth and authenticity.

And the only words I find are, “Oh Coral, you are so perfect.”

 

“I’m not in this world

To live up to your expectations

Neither are you here to live up to mine.

….

Don’t underestimate

My ability

Don’t definite my character

Don’t belittle my authority

It’s time you recognized my quality.

 

I said, I am that I am

I am, I am, I am.”

-Peter Tosh

“I Am That I Am”