Warrior Mama, You are a Rock Star

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.”

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Coral is Off the Charts

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.

 

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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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