To start things off, here are a couple of birthday related stories about Tate and Coral.

This week as Tate, Coral and I drove home from one of Coral’s therapy sessions, he told me, “I need to get Coral a birthday present.”

“Yeah, that sounds good. What do you want to get her?” I answered.

Tate quickly said, “Mom, I can’t say that now,” as he looked over at Coral.

“Oh, okay,” I replied.

I quietly laughed to myself. From everything I know about Coral, I can be pretty confident that the concept of birthdays and presents (and the receptive language for those words) is still beyond her scope of understanding. But Tate did not know that. Or maybe he did but still wanted to honor the “birthday code” of not talking about presents in front of the birthday girl. Either way, I love it.

About a minute later, unable to hold it in, Tate said, “I think I want to get her something with music.”

“That sounds perfect,” I commented.

It was the perfect gift idea. He knows Coral so well.

When the day of her very small family birthday party arrived, Tate came into Coral’s room dressed for the party.

He announced, “I’m wearing my Dup15q shirt because this is Coral’s special day and Dup15q is her special thing.”

I could have cried.

I spared Tate my emotions and instead said, “Wow, Tate. That was very thoughtful of you.”

Tate is a beautiful mixture of active, wrestling, jumping, unpredictable energy and pure, sweet, sensitive and thoughtful five-year-old boy.

He started talking the minute he left the womb; the pediatrician in the birth center honestly said, “You have a talker.” And he has never stopped talking. He spoke in complex sentences by his second birthday.

On Coral’s third birthday, I thought it would be fitting to share more about Coral through Tate’s eyes. Tate knows Coral as well as Tom and I.

After I explained what an interview is, Tate requested I interview him about his LEGOS. So, I will begin the interview with a couple of LEGO related questions.

Tate, if you could build any LEGO creation, what would it be? Why?
I would build a transformer because I want to.

If Coral could build any LEGO creation, what do you think it would be? Why?

Uhh, she would eat the LEGO. (Very true, Tate.)

What do you like to do with Coral?
I like to play with Coral the game she is doing. She just likes to do funny stuff. (Coral loves spinning around with her head back, while giggling uncontrollably.)

What makes you proud of Coral?
When she claps. (She has worked very hard on learning to do that and loves to do that now.)

I am proud of Coral when she walks, too.

Are there some things that you think are hard for Coral to do?
Yeah, walking. Because she needs a little more time to practice and do it. It’s a little hard for her to eat food with her spoon because she makes too big of a bite. Sometimes she spills half of the spoon.

I want to teach Coral how to talk.

How do you help Coral?
I help her if she drops a toy and she wants it. I give it back to her.

What are Coral’s favorite activities?
Humpty Dumpty! She likes to go high up on your (Mom’s) knees and then your knees go down.   (When we sing “Humpty Dumpty,” Coral sits on my bent knees. When I say “had a great fall,” I straighten my knees and she drops down. I think she would do this all day.)

She loves “Doe A Deer”. She likes her giraffe music toy.

Is there anything you worry about for Coral?
I worry about Coral getting her IEP. Is that a shot?

(Wow, I sometimes forget how much Tate picks up on and listens to. This summer we have been doing a lot of assessments. Last week we finally had Coral’s first IEP meeting (Individualized Education Plan) because she will start preschool in 3 weeks through the school district. After he says this, I explain to Tate that an IEP is just Coral’s plan for school- where she will go, what we hope she learns, and how we will help her learn. I tell him that he doesn’t need to worry about this.)

I worry about Coral going to school because she might fall on the pavement her first day there. (Yes, that’s why she has a helmet and 1-on-1 aide.)

What is it like to be a big brother?
Uhh, it’s like milking a cow. It’s so hard. On your first try you mess up. It’s so hard to take care of baby sister. I learned how to do it.

(Tate has never milked a cow, so…? I do imagine it can be hard to be a big brother sometimes.)

If you could be an animal, what would you be? And Coral? Why?
A cougar because I want to be able to climb trees how good they do. I’m really stealthy and agile.

Coral would probably be a giraffe because she loves her toy giraffe. Maybe because she wants to eat leaves and have a really long neck.

What are some things Coral does really well?
Swimming! She does really good because she doesn’t drown. She puts her head under and blows bubbles.

What do you want people to know about Dup15q?
I want people to know that Coral has special needs with Dup15q. She also needs to learn really good. And Reid’s brother has Dup15q. Sawyer has Dup15q. She is learning how to talk.

Is there anything else you want people to know about your sister?

I love her.

 
I always joke with Tate and Coral by saying, “Okay today you are turning 3 years old, but after this there are no more birthdays.”

Tate is always quick to shout, “No! Coral is going to turn 4, 5, 6, 7, ….”

“What???” I reply with shock. Then, I pause.

As Tate comes up with his response, I say with a smile, “You’re right. I’m just kidding.”

And I am just kidding. Of course, I want Tate and Coral to grown and learn. But I do hope that Tate and Coral never lose the ability to be so present in the moment and so unapologetically authentic- free from the need to be any way except exactly as they are.

Thank you for sharing about your sister, Tate.

Happy 3rd Birthday, Coral! We love you!

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”