Coral looks right into my eyes as she says, “I have a rash. I don’t like it.”

She scratches her shoulder, and then the words come again- slowly and with toddler-esque pronunciation.

“I have a rash. I don’t like it.”

My heart stops. I look at her and think- these words have been inside of her all along. I knew they were always there.

I start running around to everyone I can find. I practically shout at them, “Coral just talked! Not one word but two full sentences!” Spoken words from Coral. Joy. Pride. Gratitude.

And then I wake up.

As I lay in my bed, it takes me a second to realize that Coral’s words were a dream. I sit there with the lingering feeling of pure joy. As that fades, I think about how amazing it would be for her to say even one single purposeful word, let alone two complete sentences.

I walk out into the living room, and Tom is sitting there with Coral. I relay my dream to him, as I kiss Coral and tell her, “Good morning, Coral.” I can’t help but wonder if I will ever hear her sweet voice tell me, “Good morning, Mama.”

As the morning gets later, I go for a run. On Saturday mornings I often run in the canyon just down the hill from our house. It is more peaceful than the streets, and it looks out to an ocean view. In the rainy months it is green and lush. It is not uncommon to see coyotes pass through from one side to the other. Often hawks fly up above, circling as they look for prey.

A couple of loops into my run the tears start to flow. Over the past three years of Coral’s life I have wet the brown dirt of this canyon with many tears. I have also sent many prayers to God and the Heavens above from this quiet canyon. Today as I cry and pray, I think about Coral’s voice in my dream, the word nonverbal and the day of her diagnosis.

After receiving Coral’s diagnosis of Dup15q, two of the things that sat heaviest with me were the high likelihood of her having autism and being nonverbal. Autism scared me. Nonverbal crushed me. To think that Coral might never speak with words was devastating at that time.

While my perspective of nonverbal has changed with time and I no longer believe it is devastating, it is not without its challenges. Despite the systems we have put in place to help Coral communicate her wants and needs, Coral still has meltdowns and shows frustration. We use picture communication, but it takes a lot of practice and consistency to help her learn how to use it. For now, it is most successful during mealtimes. Cognitively, Coral still has growth to make before she can use pictures with more abstract ideas. We also use some sign language, but we have found that the motor movements for the signs can be hard for Coral to learn and recall. Still, we practice and practice. Then, we practice some more. Speech therapy. ABA therapy. At-home practice in everyday routines. We follow her lead to see what works best for her with communication. We wait patiently, while Coral shows us her path. And we always have hope.

Now I recognize that nonverbal does not mean without communication. Coral communicates with us all the time in her way. However, Coral’s communication could so quickly be lost in the typical world where hustle and bustle dominate most people’s daily routine, where some people talk a lot but actually say very little and where it seems like we opt for quick “likes” on social media rather than authentic face-to-face connection with others.

Coral’s communication cannot be rushed, and it requires the physical, mental and emotional presence of another person. It can be subtle and sometimes quiet, but it is always there. Without words, Coral requires me to step outside of typical communication expectations to meet her where she is- a humbling and beautiful experience. She requires that I slow down and watch, get face to face with her and enter into her space. It’s then that she will look me directly in my eyes. In these moments, even without words, she tells me so many different things.

Sometimes her look tells me, “I want more of that, Mama.”

In other situations when she really enjoys something, she will let out a squeal and frantically move her arms and legs. This tells me, “Give me more now, Mama.”

When she starts to hum and make sounds, she communicates, “Let’s sing more songs.”

When she takes my hand to help her do something or to have me do something for her, she asks, “Can you help me, Mama?”

If I am standing up and she finds my eyes from the carpet below, her eye contact means, “Please pick me up, Mama.”

If we are playing with a toy together and I stop and she looks over at me, she is telling me, “Keep playing, Mama. This is fun.”

One of her favorite things to do is to look me in the eyes and then to lift my hand up to my mouth so I will modulate the sound by moving my hand on and off my mouth. She often imitates this action and sound afterwards.

She can also tell me, “Please just hold me, Mama,” as she turns her head sideways to place it on my chest, using her hand to rub my arm.

And in the most precious of all moments, she looks in my eyes with pure love and tells me, “I love you so much, Mama.”

When I look back at her and stare into her deep blue eyes, I know she understands when I say, “I love you, too, Coral.”

I never knew that a nonverbal child could say so much.

I just had to learn how to listen.

Coral, thank you for being my teacher and for opening my eyes and heart to your very special world.

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”

 

 

On Tuesdays Coral, Tate and I enter the hospital to attend Coral’s speech therapy. Each week Margery greets us with a big smile. She is a 97 year old hospital volunteer.

Margery says, “Hi Coral. Hi Tate.” Many times Coral does not turn to look. Instead, she buries her head into my shoulder. It’s a busy hospital entrance. When Coral does turn and look, I help her to wave.

Tate cheerily responds, “Hi, Miss Margery. Look at the LEGO I built.” He proudly holds up his newest LEGO creation.

Every week Margery says, “You have a beautiful family.”

We have spent a good amount of time talking about her life- her many kids, grandkids, and great grandkids (the youngest of whom is 26!). After many weeks I have never spoken of Coral’s differences- Dup15q or the associated characteristics of autism spectrum disorder.

One week Margery asks, “How old is Coral?”

I reply, “Almost 3 years old.” I follow this up with, “She does things at her own pace.”

Margery replies with a smile, “Well, don’t we all.”

I smile at her words. So simple. So true. So quickly forgotten by most people.

I wish everyone could so comfortably be like Margery- inclusive and accepting. She chooses not to view Coral through the eyes of ableism. Ableism is discrimination and social prejudice against people with disabilities. Ableism is pervasive in our society. It is present in people’s thoughts, words and actions- a result of what people believe gives value to a life. In our society, intelligence, success, wealth and power are often seen as the cornerstones to a happy and fulfilled life. As a result, the life of a person with a disability (especially an intellectual disability) is often viewed as less, possibly even worthy of pity.

Ableism is used (without most people even realizing) as an excuse for exclusion. This happens everyday and in all environments. It is everything from the casual, thoughtless comment about someone with a disability to the purposeful, hurtful comment or action of exclusion.

Ableism is one of the largest roadblocks to inclusion for Coral and other kids with disabilities, including autism. It is so unconsciously accepted in our society that people do not even realize that they are a part of the problem. I know that I didn’t.

I often feel like parents have the potential to be the best (or the worst) example to our future generations. In my opinion, what we model for our kids today paves the way for the future generation to rely less on ableism and more on acceptance across interactions with all people, regardless of their abilities or disabilities.

Here are a few things we can do to help kids develop an inclusive mindset unbiased by ableism.

1. Promote positive interactions (play dates, casual exchanges in the community, interactions at school, etc) between kids of all abilities. Do not taint the interaction with your own discomfort, perceptions and stereotypes.

One day I was waiting in line behind a mom and her daughter to check Coral into her therapy. There was a friendly young man in a wheelchair next to us. He often is in the waiting room when Coral and I are there.

He was telling everyone in line about his shoes. “I have new shoes.” His speech was a little difficult to understand but his gestures helped to bring meaning, as he raised his shoe and pointed to it.

I said, “Oh yeah, I see them. Those look nice!”

The little girl, about 4 years old, in front of us was looking at him. Before she could say anything (or even think anything) her mom said, “You can say hi, but don’t stare.” After that, the little girl turned away from the boy and stood by her mom.

With two (most likely) well intentioned but ignorant words- Don’t stare– this mother made something out of nothing. She created a difference and a separation that did not have to be there. She placed her discomfort on her daughter and began to teach her that natural interactions cannot occur with kids who do things differently.

Letting kids interact on their own terms with kids and adults who act differently than expected, allows kids to create their own experiences and to form their own perceptions based on (what will likely be) positive experiences. As parents, we can follow-up social exchanges with conversation.

2. Talk openly with kids about disabilities and differences. Encourage kids to ask questions and to express their feelings, including any confusion.

As Tate grows older, he has more questions about Coral and kids with disabilities.

Questions are important. Conversations teach understanding.

After Tate plays with a nonverbal child or sees a video of a friend’s nonverbal child, he may ask me, “Why doesn’t Joe talk?”

Usually, the conversation we have goes something like this: “Everyone does things differently. And that’s okay. Some people communicate in ways without using words, like signs or pictures, like Coral. But if you watch someone closely you can usually get clues into what they are trying to tell you.”

As kids grow and learn, they experience cognitive dissonance in certain situations. When kids receive new information that challenges their existing beliefs they may find themselves in a state of cognitive dissonance or disequilibrium. They are motivated to better understand that which is causing confusion.

Currently, Tate is in a state of cognitive dissonance surrounding his understanding of Coral’s age and what she can and cannot do. Tate has been observing how infants and toddlers much younger than Coral can already do things that she struggles with. He may say, “Baby Jill already walks so good.” Or he may share, “Liz is two and she can already walk and talk.”

I usually respond with, “You’re right, Tate. Most kids do walk and talk when they are two years old. But not all kids. Some kids, like Coral, need more help to do these things. And that’s okay.”

I cannot “fix” his dissonance, as he develops his perspective on why some kids move, talk and act very differently than most other kids.

In order for kids to develop empathetic and inclusive mindsets, they have to be allowed to experience cognitive dissonance. When they look outside themselves for a way to build understanding, parents and community members can be models in their comments, attitudes and actions towards people with disabilities. For us to be positive models, we first have to recognize our own ableism- the perceptions and stereotypes we carry with us about people with disabilities.

3. Emphasize equality among all people in ways that relate to kids.

Age is very important to kids. When a group of young kids get together, they often ask about ages before names. For kids to view a child with a disability as an equal, it is important for them to know her age- specifically that she is not “still a baby.”

Tate recently saw a boy in a wheelchair with a tracheotomy and a G-tube who was playing with many of the toys Coral enjoys (infant toys). Tate was staring. I could see in his eyes and in his expression that he was confused by the boy’s behavior. Later, he asked, “Why is that kid still a baby playing with baby toys?”

I replied, “That boy was 10 years old. He needs help to do a lot of things that you do without help. But that doesn’t make him a baby. He is still 10 years old and likes to play with toys, like you do. He just likes to play with different toys than you might choose. And that’s okay. Everyone does things differently.”

It is important for kids to understand that other kids who don’t walk, move or talk in the way we might expect them to- given their age- are not babies. Equality helps kids see value and worth in all life. Equality is important to breaking stereotypes.

 

Before Coral was born I probably would have been very uncomfortable in all of these situations. Tate would have sensed my discomfort. I would not have known what to say.

As adults, it’s okay for us to not know what to say. I certainly do not know what to say in every circumstance. It’s also not wrong for us to feel certain emotions. However, it is not okay for us to teach our kids to feel the same way we do.  If we do that, we are perpetuating ableism. We must recognize our own emotions, the reasons for those emotions and then give kids space to experience the situation in their own way. This is the only way to break the pervasive cycle of ableism and the accompanying devaluation and exclusion of those with disabilities.

When we received Coral’s diagnosis of Dup15q at 3 weeks old, there is only one person who was not covered in a dark haze of perceptions, changed expectations and stereotypes around raising a child with a disability. That was Tate. At 27 months old, he did not have expectations or labels for disabilities. All he saw was his baby sister- “Baby Curl.” He was so proud to be a big brother.

He has formed a relationship with his little sister in a way that works for both of them. It is different from what Tom and I expected, but it is certainly no less valuable. When he looks at me with wide eyes, beaming with pride, and says, “Mama, look! Coral is walking so good,” I see pure acceptance and unconditional love. Coral is his sister, nothing more and nothing less.

Ableism should take a lesson from Tate, other kids and people like Miss Margery. Only then will we be able to create a more inclusive society for everyone.

Warrior Mamas (and Dads), everyday you do things for your child that other parents “couldn’t imagine” doing. Most of the time you don’t think about the time and energy it requires to meet your child’s very special needs. You simply do what must be done out of love: hours of therapy and medical appointments, providing education in the face of ignorance and fear, parenting with the physical intensity an infant requires even though your child is far older, and supervising your child with a level of vigilance unknown to most (across all environments and all ages). While others may not recognize the miraculous feats you perform on a daily basis (and you probably don’t either), I do.

Warrior Mama, I want you to know that you are a rock star.

When you find yourself in a conversation about potty training or other milestones with parents of “typical” kids, you try to listen and be engaged. Part of you wants to be included in discussions with other parents, even though another part of you may seek space and peace from a conversation that serves as a reminder of the challenges your child faces.

When the conversation turns to typical parenting challenges, you try to be empathetic, though you struggle with how different your perspective is when it comes to challenges during parenthood.

Warrior Mama, you are a rock star.

At play-dates with “typical” kids, you often choose to forego sitting with the other moms because the only way for your child to participate is if you are there to help initiate social interaction and play, or to help your child navigate the environment from a gross motor perspective. This can feel lonely on the best days and heartbreaking on the worst.

When people use a phrase, such as, “God only gives special kids to special people,” you often choose to graciously smile. I know that you may want to reply with, “How does it feel to know that God doesn’t think you’re special?” But you don’t.

Warrior Mama, you are a rock star.

On the days that knock you down and leave you on your knees and crying, you get right back up. No one would know because you ride the pendulum swing of emotions like a professional trapeze artist, with grace and finesse.

Even when certain moments out in the community catch you by surprise, resurfacing grief and sadness, your recovery is almost immediate. There may be a few tears behind sunglasses and then you’re back- ready to be a mom, therapist, teacher, and hero to your little one again.

Warrior Mama, you are a rock star.

When you overhear ignorant and hurtful comments about those with disabilities, you choose your words and actions carefully. At times, you choose to educate. Sometimes you choose to ignore.

When society wants to exclude, you fight for inclusion for your child and all those who move, think, and act differently than what society has determined to be “normal.”

Warrior Mama, you are a rock star.

You are no stranger to receiving unexpected diagnoses and labels for your child- some that you did not even know existed. While the news weighs heavy and carries many emotions, you also know something that most people do not know; no matter what labels your child is given, she will always be your child first. You have learned to forge a path through any circumstance.

You house has medication and other reminder alarms going off like it’s the background beat to the next hit song. Somehow you find time to do all “typical” parenting plus give medication, find new recipes for your child’s special diet, research sensory toys, implement a communication method for your nonverbal child, have patience through sensory meltdowns, and distract your child from licking the glass door for the hundredth time that hour. You would expect to have a clone of yourself by now. Unfortunately, you do not.

Warrior Mama, you are a rock star.

Other parents find solace in knowing that the exhausting physical parenting of the infant and toddler years will pass. They reassure each other by saying, “Your children will not need you like this forever.” Instead, you decide to find peace in taking one day (or sometimes one moment) at a time. You don’t know what the future holds.

Warrior Mama, you are a rock star.

Warrior Mama, the thing that most people don’t know is that you experience a type of joy that is foreign to all but a few parents- a joy that raises your heart to a truly special level. You celebrate what may seem to others as small accomplishments; you know how hard your child has worked, and you know better than to take any developmental progress for granted. You let your child lead. You know in your heart that your child’s life is not your life; she is free to be exactly who she is meant to be.

Warrior Mama, you are not only a rock star. You are strong.  You are courageous. You are needed. You are loved. Everyday you are a hero to a child who may never say, “I love you,” but who shows you love in the most incredible ways.

When I spot you at the playground, playing with your child in her own way (maybe she is near Coral who has her tongue out and head back- catching the wind), I smile and whisper, “Rock on, Mama. Rock on.”

A report from a developmental assessment for Coral arrives. I open it and begin to read over the results. I come to a chart. The chart has standard scores for each area of development (physical, adaptive behavior, social-emotional, cognitive, and communication) listed on one side and corresponding percentiles- as compared to kids of the same age- on the other side. I scan down, down, down on the chart. I find Coral’s line- a zig zag connecting the dots that show her percentile in each area.

Coral is off the chart.

I sit staring at the paper. Emotions rush in. Thoughts race through my head, as tears run down my face.

After awhile, I reflect: Why do I feel so sad?

Yes, these results remind me how hard Coral has to work to learn every new skill, of the challenges Coral and our family face on a daily basis, and of the exhaustion and loneliness I often feel at times on this long journey.

But, I am not sad that Coral is who she is.

I feel sad because I know that some people will never see Coral for who she is; they will only see these results. The results do not tell us about Coral. Rather, they illuminate society’s narrow parameters for development along a fixed linear progression.

I feel sad because we still have not come up with an alternative way to ascertain what Coral (and kids who are similar to her) know. The tests currently used are created for typically developing kids; they continue to try to determine if my Coral fish can climb a tree.

I feel sad because Coral was born into a world that struggles to see her life’s value. This is a world that wants to quantify her life and compare her to others.

I feel sad because I know that our family will always have to advocate for Coral’s place in this society- for her inclusion.

I feel sad for the people who will never allow themselves the opportunity to get to know Coral; instead, they will let their perceptions and fear of disability dictate their thoughts and actions.

I feel sad that this test requires me to compare Coral to other kids her age, when there is no comparison to make. Coral is uniquely herself, making progress in her own way and on her own timeline.

In so many ways, Coral IS off the charts.

The way Coral sees and interprets the contrasts of colors- both in artistic designs and in the combining of shadows with light- is unlike anything I have seen from a two-year-old. With focused and curious looking, she explores the designs with her whole self.

Coral feels the vibrations of music. Not only does she listen, she places her ear against the music to feel it. When tones change, she smiles. Through music, she finds presence in the moment.

Coral is off the charts.

Coral works harder than any two-year-old I know to learn things. She never gives-up. When walking, she still falls countless times. She always gets back up.

Coral is highly motivated to learn. With the right motivation, she demonstrates unbelievable skills.

Coral is off the charts.

Coral’s abilities in the water are nothing short of amazing. She floats on her back, holds her breath, spins, and moves with ease in the water.

When she sees the ocean, she rushes towards it- seeking the sensations of both the salty water against her skin and the whitewater push from the incoming waves.

Coral is off the charts.

Coral loves unconditionally- her dad, her mom, her brothers, her grandparents, her aunts and uncles, and her cousins. She never asks for anything in return for her love. She never requires others to be any way except exactly how they are.

Coral is off the charts.

Some of the beauty Coral brings to this world is in her ability to be content with exactly who she is- on or off the charts.

She reminds us that fulfillment and happiness in life are not a result of being on or off the charts. Rather, Coral finds these as she strives to be her best self every single day.

Coral is off the charts.

 

Learning about a child’s rare diagnosis is kind of like being thrown into a stormy sea without a life vest- it’s a cold, dark place, and there is a real potential for drowning. Drowning in grief. Drowning in worry. Drowning in stress. Drowning in exhaustion.

Often the first things that are learned about a rare diagnosis are the seemingly inevitable challenges, struggles, and clinical labels. When both society and parents interpret these labels, the result is often perceptions, stereotypes, and limits on what can be achieved by a child. Coral received her diagnosis of Dup15q at 3 weeks old; in many ways, this was when she was put into an achievement box by society.

With Dup15q, some of the first things I learned were: Many kids have seizures (often difficult to control ones). Gross and fine motor challenges can be significant. Intellectual disability can range from mild to profound (depending in part upon the type of duplication). Many kids are on the autism spectrum and experience speech and language delays. It is not uncommon for expressive language to be absent or poor.

Translated into clinical labels this would be: epilepsy, global developmental delay, intellectual disability, autism spectrum disorder, and language disorder.

After learning all of this, I had several questions: Will Coral ever be potty trained? Will Coral ever talk? Will Coral ever read? What will Coral understand about the world around her? Will she need supervision and assistance for her whole life? What will her life look like? What will our family’s life look like?

To top it off, I learned that it is not uncommon for kids to lose previously learned skills (walking, talking, eating), as a result of severe seizures and the side effects of the accompanying medications. That was when this rare diagnosis looked me in the eye and said: How do you like them apples?

Now I will pause…Just think about looking into the tunnel of that diagnosis with a newborn at 3 weeks postpartum.

So, this is how it all started. Labels, perceived limits, and grief. To start to move forward on this totally unexpected path, I chose to be cautious in my expectations. (I mean look back at that list of labels Coral was likely to acquire.) I did not want to dream too much. I could not handle being crushed again. Of course, I wanted Coral to have the best outcome possible. But I didn’t say it out loud. I kept it to myself- in fear of making myself too vulnerable.

Now, inspired by the article, “Parents of Children with Developmental Disabilities Aim High,” I have decided to write down my hopes for Coral’s future. I know that my vision for Coral’s future is only my vision. Coral’s life is her own. Her path is a result of what we do as a family, but it is also a result of what she pursues and whether or not she faces certain medical issues in the future. Her path will also be a result of what society can or cannot accept about difference- the place there will be for her in the world.

I am dreaming big. I have big hopes for Coral, our family, and all of society. So, here it goes…

I have always said that I want Coral to be able to communicate, no matter what that looks like for her. And that is true. But I still hope that one day she talks using her own words. I can see her talking to communicate her preferences and her desires. Sometimes she talks to just be her happy and silly self- to share a part of herself with us. I cherish the sound of her voice and take no word for granted.

During her school years, Coral is happy and proud of her accomplishments. She is included and valued at her school and in her community. Coral’s class is diverse- full of both typically developing kids and kids with special needs. Every child has different abilities and disabilities. Teachers are granted the time and flexibility to guide kids in learning how to relate to other children who move, think, and act differently than expected. The academics come behind the humanity. I don’t expect typically developing kids to abandon all things typical to share every moment with Coral, but I see them taking some time to share in moments with her in her way. I see them taking time to get to know her. I see these kids learning as much from her, as she learns from them.

Coral loves the water and the beach. As she grows up, she learns how to swim. She plays, happy and carefree, in the sand and the water all summer long. Yes, she surfs (maybe tandem) with Tom, Tate, Aaron, and me.

As Coral becomes a young adult, I see her living somewhere where she has friends (maybe even a best friend). She has people who live with her who help her to accomplish her day’s goals. I see her working at something she loves- maybe with animals or around the water. She is involved in the community on a daily basis, not hidden away in the back of some business but in the front, meeting people and forming relationships. I see her attending college, if it is something that interests her.

Medically, if Coral’s seizures return, CBD oil and diet modifications work to control them. Also, Coral has access to a life-changing treatment (the result of the Dup15q Alliance’s research) focused on one or some of the specific genes that are duplicated.

As a family, we are unified, patient, mindful, and loving. Tom and I grow stronger, as we learn how to communicate effectively with each other through the stressful times. We have faith. Tate is a resilient, compassionate young man and a caring big brother. Aaron is a wonderful example to his little brother and sister. Everyone in the extended family loves Coral. She has her place at all family gatherings.

When I read over my hopes for Coral I find they are similar to what Tom and I hope for Aaron and Tate- health, happiness, and fulfillment through following their dreams. Coral may take far longer to accomplish some things, but ultimately if she learns to do something (even if it is marked by her own style), that is what matters. It is not a race.

Already being two years into the path, I also know that accomplishing these dreams will be the result of massive time and energy investments. Helping Coral to achieve whatever level of independence she can will take more work than most parents could fathom.

At the same time, I know to achieve this vision, I must release this vision and accept what comes to pass each day. Struggling against what is present in order to help her accomplish skills on my timeline takes away from the beauty and peace I envision for Coral and our family.

I also know that society has to step up to help make this possible. My vision has no space for fear and discomfort around disability. Parents, doctors, educators, therapists, and business owners need to be examples to the next generation of children of how to include and value people of all abilities.

The key to reimagining Coral’s future free from limiting labels is living as a family and a society with open eyes, open hearts, and mindfulness.

It truly takes a village. Let’s make this happen!

 

Please consider donating to the Dup15q Alliance on Giving Tuesday (November 27, 2018) or on any day. They have made a positive difference in not only Coral’s life but also our family’s life.  (On Giving Tuesday, donate through the Dup15q Alliance’s Facebook page to have a chance for Facebook to match your donation.)

The Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2 – 13.1 duplication syndrome.

Donate to the Dup15q Alliance here

Thank you!!!!

 

1 in 10,000 to 15,000. That sounds like impossible odds. It isn’t. No one expects to find themselves as a member of the few. As rare as special is, it actually occurs everyday in some way. Still, special can feel so different.

This typical world has a hard time with special. I encounter a lot of fear and ignorance around disability. Many times when people hear a label for a child, like autistic, all they know are some stereotypical behaviors- flapping hands, averted eye contact, rocking back and forth, covering ears or licking objects. Instead of seeing the behaviors as a way to learn about the child and how to help her become her best self, they choose to see the behaviors as the child herself.

For as much as some people have the intention to accept everyone, there is a comfort in typical, in having the child who sits and does what is expected. When a child is outside of the comfort of typical, when she is special, it is more difficult to see her, to relate to her, and to build a relationship with her. It takes far more patience, time and dedication.

For Coral and our family, we spend everyday in this special space, due to Coral’s diagnosis of Dup15q. Special can isolate in certain situations, while it unifies people with shared challenges. It is a place where life can feel totally unsettled, yet simultaneously perfect. It is the worst heartache and grief coupled with the purest joy. It is one of life’s juxtapositions- being special in a typical world.

I have learned that getting to know special is an incredible and exhausting experience.   It brings us outside of typical. It joins challenge and grief to joy, a reminder that life is a mixture of both of these. It teaches that inner strength can be a bridge from heartache to happiness.

Some of those joyous moments are in the inchstones and milestones. Of course, it is a thrilling moment when Coral reaches a milestone. But no less amazing than the milestones are the inchstones Coral reaches. Inchstones are the stepping stones to the larger milestones. They are not promised to Coral. They are the result of her hard work and persistence in learning something that does not come easily to her. I can vividly recall the where, the when and the how of these seemingly small accomplishments that are so huge for Coral. When Coral does make these strides and reach these goals, I am fully present in the moment. Purely, completely, and joyfully.

I remember Coral’s first smile as an infant; her eyes did not meet mine, but her smile was big and full of happiness. Many weeks after, I remember the first time she looked deeply into my eyes to connect with me. I remember the first time she engaged in joint attention; she was so excited about playing with a new toy, she looked over at me while smiling to share her joy with me. I remember the first time she imitated Tate; he banged on her high chair table, and she banged back. I remember the first time she played with a toy (other than a cause-effect music toy) functionally and with purpose- dropping the ball down the chimney, so it would come out the door of the house. I remember the first time she saw me from across the room and reached her arms out towards me. I remember the first time she walked to the front door to “greet” Mimi and Dziadziu. I remember the first time she took my hand to help her move a “slider” in a book. I remember the first time she imitated my vocal play. I said, “Mamama”. I waited and waited. Her little lips started to move without any sound and then, “Mamama.” I remember the first time someone called her “smart.”

These moments of amazing accomplishment would not create such joy, if they were not countered by moments of grief, anger and sadness. It is this other side that brings perspective to Coral’s special development. Some of these moments are challenging medical situations. I remember when Coral was lying on the couch next to me at 3 days old, blue and not breathing. Home alone with her, I called 911. I remember how every test in her first couple of weeks of life (except her EEGs) came back “normal,” and how I felt hope with each returned test. And then I remember the moment when Coral was 3 weeks old and two doctors walked in and said, “We found something in the genetics.” I remember the worst apneic event Coral had at home. I can see Tom holding the oxygen bag, repetitively pumping the bag to supply her with oxygen. I thought she was going to die; I can see her blue-gray face, her not breathing, and then her labored breathing. I see myself, kneeling on the floor between my sister and Tom, over come with primal emotion, yelling and sobbing, “No! My baby girl!” I remember nursing her before bed when she had her first cluster of infantile spasms; her body tightened and her eyes averted up and to the side, while my heart dropped to my stomach.

Beyond these times of medical issues, there are moments everyday when life bumps into me. During these times, I am humbly reminded how special and different Coral’s life and our family’s life is. These are often the moments when special can feel lonely. I remember being at a birthday party when a group of moms started to talk about the “next generation” (the little sisters of Tate’s group of preschool friends) who would attend the same preschool. I remember wondering what I should explain about why Coral would not be attending that school, or if I should even explain. I remember the first look of pity I received after sharing Coral’s diagnosis. I more clearly recall the first look of fear I saw in someone’s face after talking about Coral’s challenges. I remember the first time someone made a thoughtless and hurtful comment about special needs kids in front of me. I remember when Tate asked Tom and me, “Will Coral talk when she is older?”

I will never forget any of these moments. They have come together to create the fabric of our family’s very different and special life. They also are the teeter-totter of this life. Those moments of incredible joy would never be so full if it weren’t for the moments of grief and sadness. The challenges are what have made the highs so high. It is the daily struggle that brings a new perspective. It is the struggle that allows me to see each person through new eyes- to wonder what their own struggle may be. It is the struggle that reminds me to give thanks.

This is a world full of hate and fear, but with a larger potential for love and faith.  As Coral begins to spend less time with me at home and more time out in the world at other activities, I wonder which world she will find. As her differences become more evident with age, how will people treat her?

I have to hope that the world will want to accept Coral’s special exactly as it is- not as something to fear but rather as something to embrace. I have to hope that adults will see the value to both themselves and their typically developing kids in including children and adults with disabilities in every part of society. I have to hope that in some way special will have its place next to typical.

Special is where life’s wonder resides. Through Coral, I have found my special in this typical world. I’m holding on tight because this is destined to be a wild ride.

 

This is not what I wanted.

I do not want to arrange our family’s schedule around taking Coral to multiple hours of therapy a week (on top of countless hours of daily practice at home). I do not want my daughter to have 9 specialist doctors. I do not want Coral to have to do something ten thousand times when it takes another child (who is often much younger) 10 times to master the same skill. I do not want the stress and exhaustion from caring for so many additional needs to pervade my family’s life, affecting each one of us differently but forcing all of us to hold on tightly to faith and hope to keep it all together. I do not want  to be this strong all of the time.

Sometimes I allow myself to sit with these words and thoughts- to truly feel the emotions of so many experiences that sit far outside my typical parenting expectations. At the same time, I know if I stay in the place where these words rest, I will end up missing so much of what is present. I will be choosing to focus on what isn’t, instead of what is. I will miss this life.

One way I move outside of these thoughts is to pause for a moment to give thanks. Gratitude has tremendous power to change perspective and to bring peace.

Gratitude helps me remember that things could always be worse.

About a month after coming home from the hospital with Coral, I took her for a walk in the neighborhood. She was two months old. I had her oxygen in the lower part of the stroller. I was wary to go too far from the house, in case she had another apneic event (an episode where she would stop breathing). This was not how I imagined her first walk. Ripe with postpartum hormone changes and fresh grief from her very recent diagnosis, I was caught off guard when I was overcome by a different feeling on the walk- gratitude. I was so grateful to be able to take Coral for a walk outside. I knew there were moms I had met who remained in the NICU with their babies. Gratitude reminded me that some of these moms would never get to leave the hospital with their babies.

Things could always be worse.

In the moments when everything seems challenging and impossible, I remember that so many events along this path could have gone very differently. We face significant challenges on a daily basis, but there are challenges that we have been saved from as a result of positive outcomes to big problems. This is not about comparing Coral’s life or our family’s life to others but rather a reminder to look at what is, a reminder of an abundance of blessings- some that are apparent and some that could easily be overlooked.

Coral could have died in infancy from her severe apnea. Her infantile spasms could have never been controlled, probably causing skill regression instead of development. Her medical needs could be so great that even a trip to the store with her could be very difficult, if not impossible.

These days Coral is thriving. I run laps in the canyon by our house with Tate and Coral in the stroller- without oxygen. We recently took a trip to Colorado. She is walking (still working on her balance), babbling more each week, and learning new play schemes through imitation. She loves swimming in the pool and playing in the ocean water. She may be very different from a typical two year old, but she is certainly no less blessed. We are blessed. God is good.

Gratitude brings me to quiet and prayer. It helps me to stay in the moment.

I often work with Coral for countless hours over several weeks on certain skills to help her learn what she works so hard to accomplish. Sometimes it seems like she will never reach a certain inchstone or milestone. While I am far better at being patient with Coral’s progress, there are times when I can still feel deflated, especially when I go out that day and see a younger child accomplish, with seemingly little to no effort, what we have been working so hard on.

It is during these moments that I find my mind wandering to the “if only” scenarios. “If only” Coral had been one of the kids with Dup15q to never get any seizures.   “If only” Coral was born with 46 chromosomes. “If only” our family could reside fully in the typical world, instead of walking on a tight rope in the space where special meets typical.

I usually catch myself as my thoughts race off, realizing the futility in spending time in the world of “if only”, “should haves,” and “could haves.” It is at this point that I take a moment to meditate or pray. Often my prayer is one of thanks.

Thank you God for this day, for our health, for Coral’s progress, and for your blessings. Thank you for the strength to carry on.

Short, more frequent prayers serve as a revival during the day.

Don’t get me wrong. I do not dance around my house all day floating on an effervescent feeling of gratitude. I get mad. I get sad. I get jealous. I tell God that this sucks. That this was not my plan. But I also use gratitude in prayer and meditation as a way to move past all of these feelings, to connect with peace and truth, and to connect with God and his plan for Coral and our family.

Gratitude reminds me to maintain perspective. Perspective develops gratitude.

A few months ago I was at a birthday party. Coral was sleeping in the ergo. A mom looked at me and asked, “How old is she?” Inside I cringed. Regularly, people think Coral is far younger than she actually is because of what she is (and isn’t) doing.

I replied, “20 months.”

The mom looked at her little girl running around on the concrete driveway chasing bubbles, while using the sign for “more” and saying “bubbas.” She replied, “My daughter is the same age. I wish my daughter would still go in the ergo like that.”

No. No, you don’t, I thought as I watched her daughter playing and interacting so freely and easily- how I had imagined Coral would be playing at this age.

This mom had the parenting perspective of raising a typically developing child. To her, it looked great to have a break from chasing her 20 month old around. I don’t blame her. I have been there with Tate. But for me, I would have given anything to have Coral be the toddler running around (without falling) and engaging in social play so naturally.

Our perspectives as mothers are distinct from one another- what seems difficult, what we desire a break from, and what we hope for on a daily basis. There are certainly parallels, but there are also massive differences.

I realize that I did not give thanks nearly enough when Tate was growing into a healthy toddler. I worried about the little things and focused on small details that were not exactly as I thought they should be. I now see that typical parenting challenges with Tate are fleeting and parenting him is far easier than it could be. Now I refuse to let blessings go unnoticed. In an uncertain life, nothing should be taken for granted. Perspective has blessed me.

Through gratitude, perspective and empathy can replace privilege and ego. This path may be hard, but I recognize that I have many advantages that make this path smoother than it may be for other parents with special needs kids. I have incredibly supportive family and friends, including a loving husband. I have a Master’s degree in Education and English is my first language; I can work with Coral at-home and can advocate relentlessly for Coral’s best interests. I am confident that I know my daughter best; a doctor will never tell me what to do for Coral. I use their expertise as guidance (not truth) in decision-making.

 

The other day we went to the beach. Tom was out riding some waves. Tate was riding the white water in on his belly (or more accurately the waves were riding him)- fun either way for Tate. Coral was standing in the water, smiling her sweet smile each time the white water rushed up against her legs. She was free standing on the sand at times and walking up the hill of wet sand towards the dry sand- wobbly but independent steps in uneven terrain.

And I was so happy. Two years ago, I never would have predicted such a perfect summer moment.

After moments like these, I find myself thinking about words that come to mind at other times. Words like: This is not what I wanted.

If I resisted having a special needs child at any point- either in pregnancy or during those first weeks after her diagnosis- I would have missed moments like these.  If I assumed that I knew exactly how life was going to be with a child with additional needs, I would have given up before I even tried. If I lived by comparing my life to others using social media’s happiness barometer, I would be living a life focused on cultivating some unrealistic and nonexistent form of perfect – instead of cultivating gratitude for a multitude of blessings in the moment.

A new perspective blessed that moment on the beach. It was a moment, that two years before, I never would have realized I wanted and one I never would have recognized to be so special.

For that, I give thanks.

When I was pregnant with Tate, people often showered me with advice: Get your sleep now; enjoy every minute because they grow up so fast; and your whole life is about to change.

When Tate arrived, I found the transition from woman to Mom to be both as I expected and nothing of what I expected. There were blowout diapers, long and sleepless nights, even longer days with seemingly endless nursing, standard “Mom worries,” and lots of questions. There were tiny toes, kisses, cuddles, and joy. There was also some sadness that accompanied this huge identity shift, especially on the long, lonely feeling days.

Tate’s birth was life changing; I now had this tiny life to consider in all of my decisions. But his birth was not plan changing. Generally, I was living out the version of motherhood I expected to find after pregnancy. While Tate’s birth brought sacrifice, it also didn’t. I changed, but I didn’t.

Then, Coral was born. Three days later her life crashed into mine, a tangible explosion of life’s unpredictability. Raw Motherhood wrapped me up: I watched new life sit on the edge of death; I saw my plans for the future disappear into a black hole; and I wondered (with guilt) not only about Coral’s future life but also about my own. Bare-naked Motherhood, exposing my every vulnerability and fear.

Over the past 18 months, raw Motherhood has taught me what years potentially could not: Having a child is not about fulfilling my life but rather about helping that child to be the best she can be. Coral’s life is not my life; it never has been. Completing my vision of motherhood is not her purpose. Rather, her intention is to live her own life.

Coral is Coral. She is not typical. She never will be. And that’s okay. She is living her life.

Motherhood whispered, “Let Coral be Coral.” Resist less. Accept more.

Letting Coral be Coral means letting others accept and grow their relationships with Coral in their own time, as they are ready. At times people may feel discomfort in their interactions with Coral and our family, but their discomfort is not my problem. When Coral is free to be herself, I give myself permission to release the discomfort of others- to be unaffected by their feelings and actions.

Letting Coral be Coral is releasing the developmental timeline for a “typical” child and embracing Coral’s incredible progress. There was a time when seeing Coral next to a “typically” developing baby of her same age was extremely painful. While it still may not be enjoyable (it is sometimes), it is manageable because I see the situation differently. There is nothing to compare. The “typical” child is developing as expected with few to no challenges to overcome, while Coral is jumping massive hurdles every single day. It may take weeks, months, or even years to get to the next milestone, but we see all of the accomplishments in between. Every tiny bit of progress is noted and celebrated grandly. It is truly a special experience to be given the opportunity to keenly and patiently observe the unfolding of Coral’s development.

Letting Coral be Coral is knowing that everything is not always black and white. There can be gray. Watching Coral learn and grow, I embrace the gray- that part in between the definitions of what should be. Just because Coral hasn’t done A and B, doesn’t mean she won’t do C. On several occasions I have seen her non-linear progression through typically linear skills. Recently, her teacher, Tom, and I noted that she purposefully says, “Mama” at specific times when she wants me. The other day she was sitting in her chair, ready to be done with the game we were playing. She looked up at me, made beautiful eye contact, reached her arms out and said, “Mama. Mama. Mama.” In typical language development, purposeful words follow an increased use of gestures- like pointing and waving “hi” and “bye”. Typically. She is not only on her own timeline, she is also on her own unique path.

Letting Coral be Coral means allowing there to be struggle and challenge in our family dynamic.  As Coral’s ability to engage and attend has markedly improved, her relationship with Tate has blossomed. Daily, she looks at him, babbles to him, imitates very simple actions, and reaches out to him. It has taken significantly longer than in a typical sibling relationship for Tate to have the gift of this interaction with his sister. My heart explodes with joy each time I watch them. However, there are still times when Tate yearns for interaction that Coral does not reciprocate. Sometimes he will say, “Mom, I can’t get Coral’s attention.” I can see in his face the same pain I have felt at times in the past, and my heart breaks for him. But I can’t save him from this pain; throughout his whole life he will have to recognize and accept the difficult feelings and situations that arise in his role as a big brother to a very special little sister. If I rescue Tate now, he will not have the chance to develop resilience in the face of this adversity. Instead of “rescuing him,” I try to teach him the best strategies to use to engage with Coral– position himself just below her eye level, try singing to her, give her time to process and respond, or even hold one of her favorite toys close to his face. Struggle and challenge are not inherently negative; our family has the chance to control both our perception of and our response to these adversities.

Letting Coral be Coral means letting go of what I thought our family would look like to let our family be exactly how it is: Perfectly imperfect. When I am at the playground I watch as the kids run around freely, playing and laughing. I see their moms watching them closely, stealing a moment here and there to talk with each other. I realize that we have a lot in common with these families. We have strong family bonds. We have love. We have joy. We deal with expected parenting challenges and mild inconveniences. But I also I know we are not these families. In so many ways, our lives are fundamentally very different. We exchange opportunities for play dates and other activities for therapy and doctors’ appointments. We recognize that everything can change in an instant with Coral because we have already had that happen a couple of times; stability and comfort in our daily life is relative. We certainly face additional challenges, and at times we are exhausted in a way that few can understand. But our life is certainly not worse. There are times when people have told me how beautiful our family is; I used to think that they were just saying these words because they did not know what else to say. Now I realize many of these people see the authenticity in Coral and our family. We are neither the image nor the expectation society portrays of motherhood and family. We do not fit typical social media perfection. Our family’s beauty lies in its imperfection- in letting things be just as they are.

Motherhood did not choose me because “special kids go to special parents.” I was not special; I do not believe she chose anything. After Coral’s birth, Motherhood waited for me to choose that I can and I will, no matter the challenges or dramatic life changes it brings.

That is the thing about Motherhood. She will come at some point. She may sit quietly in the background for years, or she may arrive during pregnancy or at birth in the form of an unexpected event. It may be relatively minor (though possibly not felt as such), like disagreeing with an adult child’s major life decision; or it may be traumatic and immediately life changing- an illness, an accident, or an unexpected birth injury. Whatever it is, she will come. She will raise questions. She will bring discomfort. Ultimately, she will bring the opportunity to surrender to the unplanned path and to unconditional love.

It is hard for me to recall who I was before Coral was born, and it is even harder to imagine who I would be if everything had gone “as expected.” I genuinely do not want to be either of those people. Instead, I choose to surrender to this path- windy and bumpy, full of unknowns, full of imperfections, but also full of life.

Full of Motherhood.

Everyday I give thanks to God as I watch Coral grow and develop into the person she is meant to be- smiling, laughing, and probably doing some sensory seeking- as she leads us all on the journey of a lifetime.

 

“We must be willing to let go of the life we had planned, so as to have the life that is waiting for us.”

-Joseph Campbell