Reimagining Coral’s Future: Life Without Limiting Labels

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!!!!

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Being Special in a Typical World: Joy, Grief and Struggle

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.

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Gratitude’s Perspective

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.

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Raw Motherhood, Letting Coral Be Coral

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 Coralposition 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

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Seeing Every Person through Mindfulness, Not Privilege and Pity

I am a different person since Coral stopped breathing at home at three days old.

Before, I was the mother of a typically developing two-year old boy. If I saw a child with profound disabilities, I was a mom who may whisper softly, “Oh, I couldn’t imagine. I don’t think I could do that.” I was often unsure of what to say or how to act in certain situations involving disability.

I was a mom who had a privilege that I didn’t even know existed- the privilege of parenting a typical child in a society that expects and accepts this type of parenting, including the conveniences, the access to activities, and the freedoms that are associated with it. I had the privilege of knowing that my neurotypical son would be seen as equal, his life viewed as valuable, and his place and purpose in society never questioned.

I did not recognize my privilege, and I was part of the problem.

In 1990, Congress passed the Americans with Disabilities Act. This was the first comprehensive civil rights law for people with disabilities. It gives similar rights to those with disabilities as the Civil Rights Act of 1964 did based on race, religion, or sex.

It also came 26 years after the Civil Rights Act of 1964.

This bill was the result of years of hard work by many disability rights advocates who believed that all people deserved equality, regardless of their abilities or disabilities. At the heart of the disability rights movement is a desire for society to see a person with disabilities- not for her disabilities, not even for her abilities, but for her person, her potential, and her equal place in society.

It is my belief that our society struggles with achieving these goals because we are unable to see the person instead of the disability. We look at people, but we fail to actually see.

Shortly after Coral’s diagnosis, I began to do a few things to help replace my routine and stereotyped words, thoughts and actions with mindfulness.

1. I am mindful of my words.

I often hear expectant mothers or fathers say, “We don’t care if it’s a boy or girl, just as long as it’s healthy.”

“As long as it’s healthy…” Before Coral was born on the other side of this phrase, there were times I used these words. Recently, I stopped myself as the words were about to roll off of my tongue, realizing I was about to say words that I do not believe to be true. In the past, I’m not sure I ever really thought about the words and their connotation. I was not purposefully trying to be hurtful to anyone, but I was also not being mindful. If I had truly believed these words when I used them, Coral probably would never have been born.

“As long as it’s healthy,” implies that health is the only thing that matters. It isn’t. When I used these words I was contributing to society’s collective dialog about disability, adding to a larger perception of disability as something that is, in one way or another, less and not as valuable.

Less than healthy is somehow less.

Health is certainly a blessing for which there is no substitute. As a mother to both a typically developing and currently “healthy” son and a daughter with special needs and medical challenges, I give thanks everyday for my son’s health. However, my son’s life is not inherently more valuable than my daughter’s life because he is healthy. Health is not what gives a life value.

Now that I walk with Coral on the other side of these words, I realize that mindfulness in speech is critical to creating equality for people with disabilities. The words I use are heard by people who are walking all different paths, including parents whose kids were not born “perfectly healthy,” those whose children became sick or had an accident, and people of ALL ages who live with disabilities. I wonder what message this phrase and other words (including derogatory and purposefully hateful words) send to this minority group. And I wonder how changing our words has the ability to change a lot more.

2. I am mindful of my thoughts.

Awhile back the Dup15q Alliance reached out to me about speaking to a pregnant mom who had received a diagnosis of dup15q for her baby in utero. She wanted to speak with someone who had a baby with dup15q.  I agreed.

I never heard from the mom.

I don’t know what happened. Maybe she got too busy to talk, maybe she was too overcome with emotion, or maybe she decided to have an abortion. Regardless of the reason, I pass no judgment. I do not know her unique situation.

Nonetheless, I do wonder about her and her baby from time to time. And it got me thinking about the delicate interconnected nature of prenatal genetic testing, abortion, and society’s subconscious views of disability.

This is separate from a pro-life or pro-choice debate; this is not a statement as to whether or not a woman should have the right to choose an abortion. Rather, it is about the dialog that surrounds unexpected results of genetic testing- the stereotypes, the perceptions, and in many cases the misinformation that often creates the foundation of conversations between friends, family, and doctors surrounding a prenatal diagnosis of a disability- and how that dialog can form the basis for the decision as to whether or not to have an abortion.

What we as a society think about the life of a baby, who is presumed to be disabled before birth, is undoubtedly connected to how we view the lives of those living with disabilities after birth.

There is a lot of fear surrounding a diagnosis connected with a disability of some sort. In the days and weeks that followed Coral’s diagnosis of dup15q at 3 weeks old, I was overcome by fear. I was so afraid of raising a child with a disability that I actually doubted my ability to be Coral’s mom. I even contemplated adoption.

Fear is powerful. It almost stripped me of my baby girl.

My fear was based on my perception of disability, a perception that came from a collective story our society tells about disability; this story is weaved together by our societal values, reinforced stereotypes, and parental expectations and the accompanying parental ego that are formed by both of those things.

Equality for those with disabilities cannot exist in a society where fear of disability is not only present but is prevalent.

Thoughts precipitate every word and action. If there will ever be total equality for those living with disabilities, it needs to start with mindfulness of thought. So, now I pay close attention to how I feel and what I think when I encounter a baby, child, or adult with a disability.

Am I afraid? Am I judging the person? Do I have low expectations for her? Do I truly believe that she is equal?

Do I feel pity because I have chosen to compare both her abilities and the way she interprets the world to an arbitrary set of standards that I feel determines the value of life? Do I feel pity because I think that I know what her life is like, and it must be not as “good” as mine? Or do I feel pity regarding her quality of life because I am judging her life based on the types of disabilities or medical challenges that I feel I could or could not live with in my own life?

3. I am mindful of my actions.

Because Coral was born with dup15q syndrome, my three-year-old son has many more opportunities to interact with kids with disabilities. Coral is part of an early intervention program. The program holds a bi-annual dinner for all families. At one dinner, Tate ran over to a boy who was playing with a ball. As he got closer, he hesitated for a second, looking closely at the boy. I could tell that he noticed something was different; the boy had Treacher Collins syndrome, which is characterized by craniofacial differences. But his hesitation lasted no more than a second before he joined fully into playing with the boy and the ball, like any two kids would play.

Tate did not have labels to apply to this boy. He was a boy playing with a ball, and Tate wanted to play, too. Simple.

Before Coral was born, I was awkward in certain situations involving disability. I didn’t want to stare, so I ignored or avoided eye contact. I didn’t want people to think I doubted their abilities, so sometimes I thought it best not to offer any help. Neurodiversity made me uncomfortable.

I complicated interactions that could have been simple.

In becoming more mindful of my actions, I started to be like Tate- to forget labels and to stop being awkward. I began to look each person in the eye. When I look deeply into someone’s eyes, I find that I give myself a chance to see the person. I connect with them on a human note. I see life. I see love. I see ability. I see value. I see an equal.

Sharing this sort of moment with someone has a tremendous power to change our preconceived notions about disability, our stereotypes, and our fear into love. Replacing inaction with mindful, positive action is a path toward equality for those with disabilities.

 

Disability is a part of human life. We cannot protect against life- either the unexpected happenings or the passage into old age. For this reason, we run the risk of devaluing our own lives or the lives of our loved ones by seeing those with disabilities as anything less than equal.

Today I recognize my own able-bodied privilege. That privilege should not be used to dehumanize the most vulnerable in our society, to strip them of rights and access to resources, but rather it should be used to embrace them, to learn from them, and to become a more empathetic society in the process. Those who are disabled do not need sentiments of pity. Feeling pity is a way of avoiding discomfort and excusing inaction.   Instead, they need love, recognition, and to feel valued. They need the world to be more mindful.

As I watch Coral “cruise” along the couch, taking big purposeful steps to get to her toy, I see fierce determination coupled with a strong spirit. Some might say she is her mother’s daughter. I actually think that the opposite is true: I am my daughter’s mother. Coral is helping me to become the mother I need to be for her- one who mindfully sees when she looks at someone and one who realizes that true equality for Coral actually begins with my own self-awareness and self-change.

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To the Elaine of 1 Year Ago

Dear Elaine,

One year ago- August 18, 2016

I see you standing in the hall outside of the NICU, head in hands and tears dripping down your face. Yesterday you received Coral’s diagnosis of Dup15q. She is 3 weeks old. Standing next to you, Dad says, “I wish I could take you to one year from now, so you could see where you would be.   I just wish you could see.”

You don’t believe him. You are so mad, so sad, and so very afraid of what the future holds.  All you know about Dup15q is what you have read on various websites. Your mind is drawn only to the disabilities. You wonder: Will Coral walk? Talk? Be profoundly intellectually disabled?

You are devastated.

As much as you love Coral, all you can see right now is how she is not the baby girl you thought she was going to be. And it hurts deeply to feel this way- to be so confused and so lost.

Sitting here 1 year later, I am here to let you know that Dad was right. These days there is a lot of joy, love, and laughter in your life.

If I could go back to you that day, I would want you to know a few things.

As you imagined, this path is hard. It is challenging and exhausting in a way that is distinct from parenting a typical child. But it is equally rewarding to watch Coral develop and grow according to her timeline. You no longer feel the invisible parental pressure to make sure certain milestones are reached at specific times- for Tate or Coral. Letting go of expectations has made you a more flexible person. You realize that trying to force a milestone is futile. Forward progress is what matters. Patience is the key.

You would not believe how much Coral has accomplished! At 12 months old, you watch her with amazement as she crawls on the carpet to some of her favorite toys and over to the couch to pull herself up to standing. She can feed herself pieces of crackers and puffs, and a few weeks ago she started to use her pincer grasp (sometimes)! A couple of weeks ago you said “hi” to her from across the room, like you have done many times before. This time she turned in Mimi’s arms, looked at you, smiled, and excitedly reached her arms out towards you. An incredible experience. You enjoy beautiful moments when Coral looks deep into your eyes and times when she laughs at your silliness- big, snorting laughter.

Coral and Tate’s relationship will not be what you imagined. This is painful to realize. However, what you can’t see right now is the very special relationship they will begin to form. Coral watches Tate closely, turns to the sound of his voice, and has laughed at him, too. Just the other day, Tate asked you to put Coral in his bed with him. He proceeded to cuddle up with her. (He also poked her and licked her face.)

You will worry- A LOT- about potential medical issues, of which the list is very long and includes difficult to control seizures. When Coral is 8.5 months old, you will practically collapse under the fear, anxiety, and grief that accompany the recognition of her first infantile spasms (a type of seizure). Through research you will feel empowered to take a less conventional treatment approach, and Coral will be blessed with (currently) a dramatic decrease in seizures. The onset of seizures will alter your perspective of worry. There are parts of Coral that are 100% out of your control; all you can do is breathe and make difficult decisions when they arise. A little bit of worry can be useful, but beyond that worry will not change anything except take all of the joy out of life. Now you are mindful of and enjoy each day that is free from clusters of seizures or any medical issues. Whether the reprieve lasts 1 day or 1 year, you are so very grateful for this time when Coral can develop.

Surprisingly, you will stop worrying about certain things, like what Coral will be doing 20 years from now (a thought that elicits tremendous anxiety right now). This dramatic change is a result of pointed advice from a fellow mom of a child with Dup15q- “The future will take care of itself”- and a new perspective on disability. Words like nonverbal, autistic spectrum disorder, epilepsy, and non-ambulatory have lost a lot of their power over you. Disability does not scare you, like it currently does.  You feel more comfortable with letting Coral tell her story.

I wish I could tell you that you will grieve now and then be able to move on. However, sadness will return to greet you at various times. In some circumstances you expect it, like on certain occasions when you see a “typical” baby smiling and interacting with her parents or when you see siblings playing as you had imagined Tate and Coral would; this can hurt in a way that few understand. Other times, the sadness catches you off guard. You may be at the playground or a birthday party, and it rushes in. The feeling can be so intense that you lose your breath for a second over the harsh reminder of the loss of a Coral you had once imagined. BUT the feeling will not last as long as it used to. You will learn to acknowledge the sadness in that moment, to feel it (every part of the discomfort), and then to move through it- giving thanks for everything you have in your life and releasing love (instead of anger or sadness) back to the Universe. Through each one of these cycles, you will feel yourself becoming stronger, more empathetic, and more loving.

Finally, I want you to know that there will be a moment when you find yourself thinking, “If the typical Coral we imagined in pregnancy were here now, our Coral wouldn’t be here.” And your heart will ache, not for the loss of the Coral you had dreamed of, but for the hypothetical loss of the Coral you have fallen so deeply in love with. Your Coral of Ocean.  Coral_conference_fav

It’s too early for you to see all this. Right now, all you feel is grief and your future is painted in fear. But when you start to feel a bit lighter, embrace it. Let go of what you can. Have faith in this unexpected path. There is often hidden beauty in the unexpected.

This is not easy.  At all.  But there are lots of people supporting you on this path; they are ready to catch you on the difficult days and light a candle for you on the dark days. Some of these people are moms sharing a similar path, an inspirational group of women who you will begin to get to know.

In the coming years, I have no doubt that there will be more difficult days, including long periods of intense challenge. Have faith that even in the darkest hours God will see you through.

The experiences gained on this path will leave you to adopt new perspectives over the years. While I cannot tell you what those perspectives will be in 5, 10, or 20 years, I can say that right now, 1 year later, you are a more grounded, a more humble, and a more grateful person with a stronger faith.

Remember to love Tom, always.

And never, ever forget to love and take care of yourself.

With love,

Lainey

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Photo credit to Rick Guidotti of Positive Exposure (for the cover image and close-up picture of Coral embedded in the text).

Coral of Ocean

Mother of Earth
Beautiful birth
Polyp under water
Chimera brewed
Disquietude
Perplexing astral daughter

Coral, Coral of Ocean…side
Few understand
Though many have tried
What are the secrets that you hide
Sweet Coral of Ocean…side

A reef of grief
Tethered beneath
Anemones of sorrow
Alas eschewed
No solitude
Assuage it with tomorrow

Depth of the sea
The worries in me
Equalize I must
The sea blues dare
Come up for air
‘Tis in my breath I trust

Coral, Coral of Ocean…side
Few understand
Though many have tried
What are the secrets that you hide
Sweet Coral of Ocean…side

Building swell
We cannot quell
Commit to paddle harder
The attitude
Is gratitude
We ride each wave with ardor

Tidepools fill
With hope and thrill
Like oases of manna
Undulating
Captivating
Love, our one true prana

By: Amula

Amula is a very dear friend, a mother, and a writer.  Through reflection and perspective, she is able to bring honest and beautiful insight into the unexpected happenings in life.  I am honored to share her poem on Coral’s blog- a poem that was written for Coral’s first birthday on July 28th.

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Mom to Mom, I apologize

To the mom pushing her daughter in a wheelchair, I apologize for what it has taken for me to see you. I apologize for the times I looked away from you, for the times I had pity on you, for the times I saw your daughter as less because of her differences, for the times I so proudly and naively thought “that will never happen to me”, and for the times before Coral’s birth when I was so presumptuous as to even wonder if you love your daughter as much as I love my son.

Please forgive my ignorance, my pride, and my lack of perspective. I could not see then what I do now.

As I park my car and unload Coral and all of our bags for yet another 24 hour EEG, I see you pushing your daughter into the parking lot in her wheelchair. I don’t know why you are at Rady Children’s Hospital, but I imagine you have been to this or another hospital many times over the course of your teenage daughter’s life. I don’t know what diagnosis your daughter has been given, which labels of disabilities you carry with her, but I know you choose to see her abilities instead.

When we look at each other and smile, you probably just see a mom with her baby, but I am actually a mom on the beginning of a path similar to the one you have walked for years.  At times, I am still fearful of what the future holds. I still doubt my strength and my ability to hold it altogether when major medical issues arise (which seems to happen in cycles). But when I see you, I am reassured that this can be done. I feel connected to a mom who I know truly gets it.

I want you to know that I see your courage and your persistence to fight for your daughter’s rights and her needs through countless phone calls, emails, and conversations with doctors, therapists, and insurance companies.

I see your ability to stay calm in the midst of medical uncertainty. You have probably spent incredible amounts of time researching possible treatments and the most beneficial therapies. I venture to say that you have not always followed all of the doctor’s recommendations but have chosen to instead always follow your heart; you know your daughter best. I see you step confidently in the direction of your decisions, not giving into the temptation to look back and ask “what if?”.

I see your patience when you encounter hurtful and ignorant statements- some from those who are oblivious to what they are saying and some from those who are purposeful with their words.

I see how grateful you are to those who take the time to get to know your daughter, to ask about her – to really ask. I imagine that you are grateful for the friends you had before the birth of your daughter who are still by your side today- the ones who hold you as you cry, laugh with you when you can not cry anymore, and who celebrate even the smallest victories with you. I bet you are also grateful to the new friends you have made along the way.

I recognize that sometimes you may feel alone in this journey but are comforted when family members say, “We will get through this together.”

I see that you have put your parental ego to the side- including the expectations you had for your daughter’s life- to instead embrace this unexpected path and to love your daughter for exactly who she is.

I see you when others may look away.

When I look at 20160723_084442this picture of me, 40 weeks pregnant with Coral, I can’t help but feel some sadness. While I look happy in the picture, I recognize how blissfully unaware I was of my narrow definition of parenting. In this picture, I am Tate’s mom (not Coral’s mom). I worry about things like: whether or not Tate is eating enough vegetables, hoping he will sleep through the night, balancing parenting flexibility with more a rigid schedule, keeping him healthy from cold and flu viruses, scheduling a yearly well-child visit, and arranging play dates for my social little guy. In this photo, I am a mom who could never imagine having a child with special needs.

Now I stand in the exact position I couldn’t imagine, as the mother of a child with a rare chromosomal duplication, and I am sorry. Please forgive me for the times that I chose to judge both you and your daughter and for the times I assumed to know about you just by looking at you. You do not need my pity, warrior Mama. We all need some of your strength and determination.

To the mom pushing her daughter in a wheelchair, you look so content as you enter the parking garage. Thank you for smiling. Thank you for giving me hope. I do not know your unique path, but I do know that when Coral is a teenager, my wish is that I carry myself with as much peace and love as you do.

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Dear Tate

Dear Tate,

Three years ago you entered this world on your terms. Two weeks before your due date, my water broke at a friend’s birthday party. During labor when I was told that I still had to dilate more, I got into the birth tub. Soon after, you decided it was IMG_1530time for you to arrive and you slid out. Literally. I did not push once. (By the way, thank you for that!)

Since your birth, you have been doing things your way. Your expressive eyebrows fit your personality- energetic, enthusiastic, and bold (with a sensitive side).IMG_0225

Each day on our walk you say “hi” to everyone. Sometimes your greeting is, “How are you doing guys?” You put a smile on most people’s faces, as they chuckle at your friendly and outgoing greeting. Sometimes you will remark, “They didn’t say hi to me, Mama.” People won’t always say hi. People won’t always reciprocate your smile. Keep smiling and spreading joy, regardless of other people’s actions. You can only be in charge of what you do.

Your love for adventure is contagious. At the beach, you crack up as your Dada whips you around on the boogie board- water flies in your face as you hold on tightly, laughing when you wipe out. Be adventurous. Have respect for the power of the ocean, but do not be afraid. Instead, pay attention.

IMG_0268Everyday you have a new story to tell, a new game to play, and a thousand imaginary places to visit. Each piece of Coral’s therapy equipment becomes a new toy for you. When she received her corner chair, you went into the kitchen to get the Christmas cookie cutters. You then placed them on her corner chair, sat inside the chair, and announced that you were in your go-kart. Her Super Seat is your skid steer truck (the toys on the table are your control handles). Her chains of beads make up the crane in your crane truck. Always keep your vibrant imagination. Don’t be limited by conformity to social expectations. Color outside of the lines if you want to.

Sometimes you say, “But Mama I can’t draw that because I’m not the best drawer.”

I usually follow-up with, “You don’t have to be the best. You just have to try your best.”

To be honest, I was confused about this for the longest time. I thought that trying my best meant that the outcome would be what I wanted. Now I see that trying my best is doing the best I can at that time, regardless of what the outcome is. Don’t ever forget the power in trying your best.

IMG_0236You are acutely observant. You notice how much we celebrate baby Coral’s accomplishments- from increased eye contact to improved sitting.   You watch her teachers and therapists come and go all week long. Yes, Coral does demand a lot of our attention. But we see you, too, Tate. We see everything you are doing and accomplishing, and we are so proud of you. We see how you LOVE books, how you point to the words, memorize pages of nonfiction books, do big puzzles, count groups of objects, love to learn new games, ride your balance bike as fast as I can run, build tremendous block towers, paint and draw pictures with gusto, and tell jokes just like your Dziadziu. Throughout your life, we will celebrate things Coral does that you do with ease, things we may not have celebrated so grandly with you. But we will celebrate your unique accomplishments, too. Keep being your awesome self!IMG_0016

In early March, when I returned upset from a doctor’s appointment with concerning news about Coral, you looked right at me and said, “Mama, it’s okay. Give a squeeze, nice and slow. Take a deep breath, and let it go.” Thank you, Tate. (And thank you Daniel Tiger’s Neighborhood.) You then went on to say, “We are all here- Tate, Fonzie, Dada, Curl. It’s okay, Mama.” You’re right, Tate. It is okay. It will all be okay. Thank you for seeing my pain and, at 2 years old, for having the words to provide comfort and peace. Continue to love like you do, unconditionally and empathetically.

One day you realized that Coral was laughing when you tickled her. You proceeded to jump back- arms out to the side and knees bent- and announce, “Curl, watch this!” You went on to tell your favorite joke: “What do you get when you cross a Cocker Spaniel, a Poodle, and a rooster?” Without much of a pause, you loudly shouted, “A cocker poodle doo!” Keep laughing and telling Coral jokes. She watches you with such admiration.

20161231_114427_resizedAs Coral has begun to move and interact more, I have noticed you talking about all of the things you will do together. One time you said, “One day Curl will ride bikes with me.” On another occasion you excitedly shared, “Curl will chase me up the hill one day.” Coral will do whatever you believe she can do. It may look a bit different than you imagine (or it may not). One thing I know for sure is that she is going to love you always.

When I watch you and Coral and hear you talk about what you will one day do together, there is a part of my heart that wants to break. This is the part of my heart that wanted to give you a “perfect” family, a family just like “everyone else.” I wanted to protect you from the pain of life’s adversities. But there is a bigger part of my heart that does not want to shelter you. At only 3-years old you are already building an awareness of life and all of its emotions- sadness, joy, anger, frustration, and peace. You observe real challenges, and you are part of Coral’s and our family’s joyous victories- a result of God’s grace, hard work, and determination. You are learning resilience.IMG_0216

There are days when I do not think I can walk this path. On those days, you are one of my biggest motivations to be strong, to continue forward, and to keep believing; I want you to see how strong and courageous we are as a family. I hope that your not-so-perfect family and very special sister help you learn that challenges and differences are not things to fear. Anything is possible with love, patience, and faith.

And you are going to continue to teach us about living with an abundance of spirit, adventure, and creativity. Continue to be YOU- the monster truck driver, the dinosaur adventurer, the curious snake hunter, Sal the salamander’s friend (who lives on our hill), the radical bike rider, the budding artist, the ocean lover, the friend to all kids at the playground, and the incredibly loving big and little brother.

Tay-Tay, I love you! I am so proud of the little boy you are becoming! Happy 3rd birthday!

Big hugs and kisses,

Mama Bear

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Trading-in Typical

Our friend, Rob, came to visit around Christmas. He drove his two-tone VW Microbus down the coast from Northern California, in search of waves and respite. He is a happy guy, not afraid of the road less traveled, easy going, and comfortable to be around.

As Rob and I talked the evening of his arrival, I recounted the trials of our past few months, from Coral’s stay in the NICU to her diagnosis. I listened to myself and heard how I consistently sprinkled the word typical throughout the conversation.

After I finished talking, Rob said something that caught me off guard: “Who really wants a typical life anyways?”

I paused, hovering in the space between shock and interest. Rob’s words were exactly what I needed to hear.

His question got me thinking about this word I frequently used- typical. In today’s society, what constitutes a typical infant, child, adult, or in Rob’s words- a typical life?

According to Merriam Webster’s dictionary:

Typical- Average, normal, usual

Blowing bubbles with Tate one day, I closely observed the bubbles. Each bubble’s constitution was the same, soapy water. However, the typical action of one bubble was different from the typical of another. Some bubbles were big, happily floating along in the wind. Other bubbles left the blower only to quickly anchor themselves to something, and some joined with another bubble on their journey through the sky.

I know that I live in my own bubble. It is a bubble formed of labels with which my ego has come to identify, labels that are reinforced both by my values and opinions and others who share a similar bubble. Mom. Wife. Teacher. Homeowner. Business Owner. Surfer. Catholic. Spiritual. Organic. Healthy. Independent Thinker. The list of labels could go on, and each forms a layer of my typical.

Society encourages me to preserve my ego and its bubble by continually seeking- something, anything- to maintain my labels and the typical they create. My bubble is filled with should haves, could haves, and would haves. A bubble of everything that isn’t, instead of what actually IS- this moment.

One day when Tate was only a few months old, I tried to give him a pacifier. He proceeded to projectile vomit all over his crib and the wall. Sleep-deprived and cleaning up vomited milk, I employed a parenting coping mechanism; I attempted to escape the present moment by looking for refuge in an imagined future. It will be amazing when he is sleeping through the night. I can’t wait until he is potty trained. And on and on…

Anticipating a future moment can bring satisfaction during overwhelming parenting moments. Initially, I felt tremendous disappointment in not being able to access this imaginary future of parenting peace with Coral. Now I see this as 20170214_102848_resizeda gift that Coral gives to me each day- the present moment. She helps me to trade-in my typical– letting go of a hypothetical future to instead celebrate each moment, reminding me that mindfulness is being present in the journey.

This is the day that the Lord has made; let us rejoice and be glad in it. Psalm 118:24

There is a private Facebook group for parents with kids who are diagnosed with Dup 15q. I found myself seeking to identify the characteristics of a typical child within this new Dup 15q bubble. What I found instead is a wide range of developmental and cognitive skills and abilities. (Part of this variation is due to the different genetic duplications present within the broader Dup 15q diagnosis, and part is due to the expression of the genes themselves- the uncontrollable wild card. The environment certainly plays a role, too.) Some kids read, write, talk, run, climb, ride a bike, ski, do many other sports, and are very social. Others have their own unique abilities. Some kids have a difficult time with seizure control, which creates additional challenges.

Labeling a typical, allows for the ability to make comparisons- something my mind wants to do. Even without a clear Dup 15q typical, I still attempted to make comparisons: Coral is breastfeeding. A lot of the kids struggled to nurse. That could be a good sign. Coral rolled over at 5 months. The average time on one website says 9 months. That is promising. 

Comparing. It is a dizzying and futile mind game.

Then we met three-year-old Sawyer- also diagnosed with Dup 15q- and her parents, who live right down the road from us. Sawyer is a beautiful girl who moves through life in her own way and with her own rhythm, shining a bright light the whole time. Her abilities are many: She walks, loves to climb, is starting to talk, uses sign language to communicate, loves music and dancing, and is very social, often climbing up into our laps to sit. She is absolutely amazing.

Neither Sawyer nor Coral fit neatly into the descriptions of children diagnosed with Dup 15q. As much as it is my inclination to seek a typical to compare agai20161226_113230_resizednst, there actually is no typical. When labels are removed and the mind is quieted, two children- regardless of genetic similarities or differences- can be seen as two children. Each unique. Each perfect in her creation.

Meeting this family has been a blessing.   God always provides.

Comparison’s partner is judgment. Judging looks at things from a deficit approach instead of an ability approach, labeling what is not happening rather than acknowledging what is.

For the first five months, Coral very rarely made direct eye contact with us. Her eyes often danced from one side to the other. After attempting to ignore my emotions, one day I finally broke down into deep sobs, telling Tom, “This isn’t okay. I want the baby girl I thought I was going to have.” Sadness. Heartache. Honesty.

In recognizing these powerful emotions, I realized that I was making huge assumptions about Coral based on my typical and my expectations. In doing this, I thought: She must not know we love her. She must not love us.

Then I stopped thinking and interpreting with my mind, taking the time to listen and look with my heart. 20170204_100628_resizedUndoubtedly, she feels the same emotions as other infants, but she just expresses them differently than I expected. Tom always says, “Coral is totally awesome. She does things her way.” She is genuine.

Coral is very auditory, responding with big smiles to familiar voices (especially Tate’s voice) and music. She thrives on sensations and different tactile experiences; during her bath, taking a wet washcloth down her face, over the bridge of her nose, elicits big smiles. Kisses and tickles often send her into a fit of giggles.

Watching Coral without judging, has allowed me to learn about who Coral is, not who I thought she was going to be. She gives me the opportunity to expand my bubble through knowledge. Because Coral exerts so much energy and focus on gross motor skills (like head control), it is very20170121_155645_resized difficult for her to also coordinate eye control and emotional responses (like smiles). It’s like asking someone who is learning how to ride a bike to ride without hands.

At certain times people appear to feel some discomfort when interacting with Coral because she does not respond to social cues in the expected manner. In these situations, when I let people feel their discomfort – instead of me feeling uncomfortable for them or interjecting verbal clutter in an attempt to distract from the discomfort- I allow Coral to be her most authentic self. At the same time, I give others and myself a chance to authentically feel our different emotions, without judgment.

It takes an exhausting amount of energy to pass judgment and make comparisons against a typical, striving for more in order to keep up with the illusive Jones family present in each bubble. Trading-in my typical compulsion to compare and judge, leaves space for stillness and peace.20170209_082806_resized

Be still and know that I am God. Psalm 46:10

The Dup 15q motto is: Believe.

On the evening of January 7th, Coral rolled over from her back to her tummy. I practically jumped up, overcome with joy and relief, as I watched her reach her first major developmental milestone. She now rolls from her tummy to her back, as well. We can hold her upright without having to support her head. It is incredible to watch as she works hard in an upright position to purposefully move her head to look from left to right, taking in the world from a new vantage point. According to her physical therapist, she is getting very close to independent sitting. She loves to stand-up, supporting all of her weight on her legs, while we hold her under her arms. (This actually makes her laugh.)

Muscle endurance is a challenge, contributing to Coral20170211_093537_resized tiring more easily. Despite this, she tries extraordinarily hard everyday to do more and move more than the day prior. Her determination and heart are an inspiration.

She has also been engaging in more and more direct eye contact. She will “play” with a toy and me by reaching up to grab the toy, smiling and cooing the whole time. She will often look 20170129_141802_resized_1right into my eyes, deeply. Sometimes she breaks into a big, gummy smile, while letting out a soft, sweet “cooing” sound. That one deep “coo” says, “Oh Mama, there you are. I found you. I love you.” Genuine connection. Bliss.

Most recently, she brought her developmental teacher to tears, as she watched me (guided by a trained infant massage therapist) give Coral a face massage. Coral was deeply connected during the massage- mirroring my face and mouth movements, creating a back and forth dance. Her teacher and the massage therapist shared that in their decades of experience they had never seen a baby respond to massage with such connection.

God always provides.

There are still moments when everything seems so overwhelming, when I quietly beg God to change his plan for our family. As I struggle to pull myself outside of my thinking mind, I am reminded of the Dup 15q motto: Believe. In the most difficult of times and in our darkest hour, God will carry our family through. He always has.

20170204_100803_resizedCoral is teaching me to trade-in my doubt and resistance for complete faith and acceptance- for happiness that transcends any situation.

Trust in the Lord with all your heart, and do not lean on your own understanding. Proverbs 3:5

On Friday mornings I usually take Tate and Coral to the beach. One morning I sat on a bench nursing Coral, while Tate played on the beach playground, making sand balls with two very sweet older boys. As I watched the surfers dance on the waves under a sky freckled with clouds, I was overcome by peace. To passersby, we may have looked like a typical family, but to me that moment was a tiny miracle.

One person’s typical is another person’s miracle. This is the beauty of diversity- all types of diversity. Coral gives me the choice to walk through life making comparisons against my defined version of typical, or to look for the miracles happening all around me. She gives me the choice to judge by looking at someone, or to instead look into someone by learning more about her. She is a reminder to choose joy each day and to respond to situations mindfully, not to react typically. Diversity reminds me that God has a path for each of us. Coral will never be my typical because she will always be my miracle.

All bubbles will one day pop.

So, I have decided to call typical’s bluff. Its return is average, at best.

Thank you, Rob.

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