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. 

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

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

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.

 

 

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 this 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.

 

 

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 time 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).

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.

Everyday 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.

You 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!

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.

As 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.

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 3^rd birthday!

Big hugs and kisses,

Mama Bear

 

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 a 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 against, 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. Undoubtedly, 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 very 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.

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

The Dup 15q motto is: Believe.

On the evening of January 7^th, 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 Coral 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 right 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.

Coral 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.

 

 

 

At some point each day I stand and rock Coral in the exact place she was born, our bedroom. I love that I can be present in our room and vividly recall her birth- laboring at home and getting into the birth tub just in time for our little Buddha baby (with big puffy cheeks) to be born. Soon after the birth, Tate- wearing a proud smile and announcing to everyone that his “Baby Curl” had come out of Mama’s belly- joined Coral and me in bed. Peaceful. Natural. Free.

In planning for a home birth, I had faith: faith in my body’s natural ability to birth, faith in our midwife, faith in our doula, and faith that everything would happen as it was meant to- faith in God.

Tom and I chose not to undergo any prenatal genetic testing with Tate or Coral. In making our decision to limit medical intervention, we agreed to allow Coral’s pregnancy and birth to unfold naturally. We had faith.

When grief is present, faith can quickly change to doubt; fear can steamroll peace. Grief does not come to visit as often these days, so when she does, she seems to catch me off guard. She wanders through my mind and attempts to rip holes in my heart. Sometimes she lingers, like a houseguest who has overstayed her welcome.

Grief has sent me on countless Internet searches seeking answers for HOW this chromosomal duplication came to be and if this ever could have played out differently. Many times I have placed myself at the precipice of a huge hypothetical decision, “What would have changed had we known about the genetic duplication during pregnancy?”

Allowing myself open and honest exploration into this area has reaffirmed what I have always known deep in my heart- nothing would have changed. There was never going to be another path.

To turn my back on faith during a time of doubt is to deny that faith has worked in beautiful ways throughout my whole life, including leading us to a peaceful birth in the sanctuary of our own home. To forget the power of faith is to lay claim to the possibility of Coral not being with us today.

This moment is exactly as it should be.

While grief still comes to visit at unpredictable times, hope consistently dances around our house. Around here, we celebrate inchstones, every tiny step forward Coral takes on her way to the larger milestones. There are 63,360 inches in a mile. We have so many accomplishments to look forward to celebrating!

With Tate, my experience has been that the inchstones seamlessly flow one unto another in a steady march to the milestone, making them almost undetectable. It is easy to get caught up in the excitement of anticipating the future development of a neurotypical child. With a certain set of expectations, assumptions about developmental progress seem “safe” to make. I no longer assume anything.

For Coral, what may appear to be the tiniest development, is in fact a HUGE victory. And it is felt as such.

Coral has a developmental teacher who comes each week. Most recently, her teacher noted how impressed she was with the amount of time Coral was able to play on the carpet, engage in tummy time, and attend to the toy hanging above her. It is now apparent that she sees a toy hanging above her, tries to move her hands to touch the toy, and will often  successfully grab the toy.  Inchstones!!

We recently began in-home physical therapy. Coral occasionally rolls over from her tummy to her back. Sometimes she does this a couple times in a day. Sometimes she goes days without ever rolling. And then sometimes she rolls but gets stuck. While she is learning about how her body moves and is building strength, she is teaching us about patience.

The other day, I noticed Coral held her head centered and upright for a few minutes in her car seat, smiling at a new toy hanging in front of her.  Her head usually falls to one side.

We recently returned ALL of Coral’s oxygen. Yay!

And occasionally she giggles. Sweet, sweet giggles.

When I impatiently await the arrival of a certain milestone or silently beg for Coral’s eyes to make direct contact with mine, I find myself pushing to create something that will unfold in its own time. The “forcing” does not help her reach milestones any sooner, but it does suck out all of the joy of watching her grow.

With Coral (and now with Tate), we hope for the best, but we don’t make assumptions. We choose not to set any limits, but we also don’t set expectations. We stay present in each moment as much as we can. Anything is possible. We want Coral and Tate to be free to find their own way.

Without a doubt, we are very busy. Phone calls to doctors and insurance companies, doctors’ appointments, physical therapy, and nurse and teacher visits, pile up on top of typical day-to-day routines. But (on the good days) there is a lighter air to the house and a lot of love to go around. I am recognizing that Coral is only one part of our family. There has to be balance for love to grow.

As I have allowed myself to spend more time with Tate, I am reminded of the immense joy and love he brings to our family. He is an opinionated, talkative 2 ½ year-old. His favorite way to begin sentences is, “Actually Mama……”, as he goes on to “correct” me on something, probably using a relatively detailed sentence. He has just started to “read” his books, looking closely at the pictures, following the printed words and turning pages- not just memorizing the story but actually telling the story. He is reaching milestones, too. And I don’t want to miss them.

Behind my relationship with God, my relationship with Tom is the next most important in our family. Our love is what created this family. Coral’s life will only be as full and rich, as our family’s life is peaceful and unified.

There was a point in time when I called Coral’s chromosomal duplication a tragedy.

This is not a tragedy. This is an adversity.

The only tragedy would be to give Coral’s extra genetic material the power to determine our family’s happiness. Her genetic duplication is powerful in terms of what her physical manifestation may be in this world. But Coral’s soul does not reside in the physical realm. Her soul- her spirit- is completely untouched by her genetics; it is where unconditional love resides.

Out of this adversity comes tremendous opportunity for both personal and family growth. All of the pain, the heartache, the tears, and the grief have placed me in unknown territory. I am different now.

It is easy to feign change when the comfort of past behaviors, self-talk, and routines still exist. When the comfort of past complacency has been completely erased, change and forward movement are the only options. And that is where I find myself each day- experiencing discomfort in this new skin.

There is a story we each tell ourselves, reinforced by our perceived realities. I am looking at our story through a new lens. The only way we are going to make it through this adversity is to take the opportunity to work towards a deeper faith in God- one inchstone of faith, hope, and love at a time.

My “Hallmark” story of our future life once looked something like this: We are all in our VW camper van, taking a drive along the coast after having left the beach. Coral, Tate, and Aaron are laughing as they talk about their waves- the wipeouts and barrels. Tom and I are sitting in the front seat, quietly listening and smiling.

Maybe this story (or some version of it) will manifest one day, maybe not. I am slowly detaching from the imagery and events of this story. What is becoming increasingly important is the feeling in our VW van; that is what we work towards each day as a family.

It is a feeling of absolute peace- sandy, salty peace.

“And now these three remain: faith, hope, and love. But the greatest of these is love.”

1 Corinthians 13:13

Each night Tate chooses a few books to read, including a Thanksgiving book. Right now one of his favorites is a cute rhyming story, Thanks for Thanksgiving by Julie Markes. In this story the author gives thanks for a variety of things: “Thank you for school- I love to feel smart. Thank you for music and dancing and art….”

At the end of the story, I ask Tate, “What are you thankful for?”

“Ummm….TRUCKS!” he excitedly shouts. Always trucks.

“Anything else?”

“Mimi and Dziadziu.” (Grandma and Grandpa)

On other days, he may include scooters, granola bars, his friends at preschool, and “Baby Curl.” (Baby Coral)

Yes Tate, we are very thankful for our baby Coral.

We are thankful for her sweet smile where she sticks her tongue out ever so slightly, simultaneously releasing a high pitched screech of joy. While lying on her back, she is able to hold her head at the midline a bit more. The midline is such an important position because all initial milestones (reaching for toys and rolling over) begin from development of the midline position. Both her head and neck control and hand-eye coordination are improving. Beautiful development according to Coral’s timeline.

We give thanks for how much she loves the water. During her nightly bath, Coral’s hands, which are sometimes held tightly in closed fists, slowly open as the warm water surrounds her. Suddenly her legs begin to kick, bouncing in and out, faster each time. Bath time party, Coral style! When Tom cleans her neck rolls, she lets out a big smile. We follow with a good laugh. After her bath she sits in her hammock by the fish tank, excitedly watching the Cichlids swimming around the tank, fighting for their territory.

Coral loves being outdoors. And we are thankful for that! During the later afternoon hours, we bring her to the beach where she sits in her hammock feeling the cool ocean breeze. Content. On one occasion, we packed up her oxygen, clothes, and diapers and camped at the beach with her two brothers. She loved it. We all did.

A few weeks ago we spent two days in the hospital, so she could undergo another EEG. Her results were the best of any of her EEGs- no seizures and few sharp waves (a type of pre-seizure activity). Freedom from seizures allows her to continue to develop and progress. Give thanks!

We are thankful for her neck rolls, arm rolls, big chubby cheeks, and her belly that protrudes over her pants’ waistline; she must be nursing well! I love when she looks up at me while nursing, pauses, and cracks a big smile.

We give thanks for Coral’s two older brothers, Aaron (18 years old) and Tate (2.5 years old). Aaron is a responsible young man, caring in his interactions with both Tate and Coral. We know he will forever be watching out for both of his younger siblings. Tate is an energetic, friendly, and chatty toddler. He loves to cheer her on during her tummy time, “Good job, baby Curl,” while trying to use her back as a monster truck ramp. Tato the Tornado!

And I am thankful for Tom- Coral’s dad, my husband, and the love of my life. He is the anchor of this family. I tend to be subject to the tides of both my emotions and life’s events, but Tom always pulls me back to safe harbor. During the first few weeks after Coral’s diagnosis, when I shared with him my fears, he did not waiver. “It doesn’t matter what anyone else thinks. This is our family. I love Coral. We don’t know what this road will be like; it may be totally amazing.” He’s right. We don’t know. No one knows. But we do love Coral, and she certainly loves her Dada.

But over the past few months I have not always felt such a deep gratitude.

When Coral was 5 days old and was transferred to Rady Children’s Hospital, due to potential seizures, the only words I found were, “My God, my God, why have you forsaken me?” I repeated these words over and over and OVER for the first few weeks of her life, with tears, without tears, day and night, alone and with others present, and when staring at Coral in her NICU bassinet. I tried to find words of prayer to offer up in exchange for my anger, but nothing else ever came forth. Always: “My God, my God, why have you forsaken me?”

After 3 weeks, when we finally received Coral’s diagnosis, those words rang louder than ever before in my head. I recall lying on the bed in our room at the Ronald McDonald House, sobbing. My emotions pivoted between sadness and anger. Anger at life. Anger with God. Anger at the loss of our “perfect” family.

Then, we left the hospital. Time passed. And Coral started to reveal herself to us- her sweet nature and determined personality. I recalled the words of the geneticist, “Coral did not read the book on Dup 15q.”

Slowly I began to find other words of prayer. An “Our Father” to start. And then, “Thank you God for all of the prayers and love we have received.” And finally, “Thank you God for our baby Coral.”

These days I feel a profound sense of gratitude. Life has given me so much. The circumstances I was born into have made it easier for me to apply my determination and perseverance to reach so many of my goals. One day I started thinking about everything, EVERYTHING I have to give thanks for above and beyond food and shelter. A very small sampling of those are: loving and supportive family and friends, my health, Tom’s health after his colon cancer diagnosis 4 years ago, my education, swimming, surfing, traveling the world, having the determination and opportunity to take alternative life paths (paths that led me to teach in Venezuela, to work at a mountain resort in Colorado where I ended up meeting Tom, and to starting my own business), and of course Tom, Aaron, Tate, and Coral. A rich life. A life to give thanks for.

Life is good. God is good.

There are families we met at the Ronald McDonald House whose babies were not only in the NICU before we got there but who are still in there, almost 3 months after we have left. Gratitude rooted in perspective.

It is easy to find things to be thankful for when my life unfolds according to MY plans. At the same time, it is possible to live without a sense of gratitude during these times; when life is too “easy,” privilege and expectation can replace an attitude of surrender and gratitude.

The other day I came across a plaque given to me by Tom’s mom. Etched into the plaque are the words:

In Everything Give Thanks

5:30am in the rocking chair.

These moments are pure bliss with Coral. There is stillness in the house- no pitter-patter of toddler feet, no excited screaming voices, no dogs barking.

Just peace.

During this time, I pray: 

Our Fathers, Hail Marys, and Glory Bes.

I chant the mantra:

 Om Tryambakam Yajamahe

Sugandhim Pushtivardhanam

Urvarukamiva Bandhanan

Mrityor Mukshiya Maamritat

Translated as:

(I surrender to the 3-fold expression of life (creation, maintenance, and dissolution).

By surrendering, the sweetness of life permeates my being.

Like a cucumber that falls off the vine when it’s ripe,

Death falls out of my awareness.)

 I meditate on words of guidance:

“Don’t confuse the map for the territory.”

(The territory is what actually happens (life’s landscape), but the map is my interpretation of what has happened. Throughout the course of my life, values, beliefs, and prejudices have created my map.)

I allow myself to recall some of the grief of the first month:

I watched my baby girl hover between life and death around 30 times; in some cases she was kept alive only by the artificial ventilations. At 5 days of life, when we did not know what was happening, I whispered in her ear, “It’s okay to go. We love you. You can go and be in Heaven.”

Inevitably, dawn transforms into day. During the busy days, I find myself whispering the Tryambakam mantra to bring myself back to the present moment. The world overwhelms me these days. Typical screams at me through the eyes of healthy baby girls. My map is written in black ink; it feels so permanent. It is a map with an ego based on a parental value code so ingrained by society that I don’t even recognize its presence until I am faced with breaking it down each day. This map is based on a lifetime of societal perceptions. Perceptions that say, without really saying, that special needs children are not the children of our dreams. As a society, we may know how to be politically correct, but we are often personally awkward in our interactions with special needs children- averting our eyes, telling our kids to “stop staring,” and acting like those children and their families can’t see us. But we certainly see them. Now I recognize that part of the map for what it is. On my map it is impossible to picture different as a reality. Different happens to other people, not me. But here I am. The map creates fear, oh so much fear, about what the future holds on this different path. I watch as friends and family try to assimilate Coral with their maps. I see their fear, too. The map, not the territory.

If the map makes comparisons, then the territory simply exists. Coral is the territory- a 3 month only baby girl with tremendous spirit and a beautiful soul. When I stand in Coral’s territory I allow myself to watch Coral develop and grow in her way. Coral holds her head at the midline a little more each day, reciprocating smiles, and my heart explodes. With Tate, I never celebrated milestones in such a huge way because they were expected. His milestones and my reactions fit the map. Coral’s milestones lie beautifully in her territory. And in this territory is complete freedom, like sweet, summer watermelon wrapped up in a baby’s blanket. It is 14 pounds of humility, showing me that life cannot be controlled; surrender has always been the only path. Things have never gone so off “course” for me. In fact, my life has been a beautiful symphony of creating what I want to happen. But now to be living in this unknown territory, I actually feel so FREE and so humbled. Coral has always been who Coral is now; the story and idea of Coral that Tom and I created during pregnancy, in fact never existed. The map is so often confused for the territory.

5:30am in the rocking chair

It is in this time that the world fades away, and I am left with my baby girl- laying on my chest, breathing in and out, head tilted ever so slightly upward so I can stare at her face. The world has faded away, taking with it my map and all of its perceptions, comparisons, and values, leaving space in its place.

Space for peace. Space for stillness. Space for acceptance. Space for unconditional love.

 

5:30am in the rocking chair. Just me, my daughter, and her complete perfection.

 

Our daughter, Coral, was born on July 28th, 2016.  Three days later she stopped breathing.  After numerous tests that returned as “normal”, the genetic testing report showed that she had a rare chromosomal duplication, Dup 15q.  Dup 15q is characterized by: seizure disorders, gross motor delays, cognitive delays, autism spectrum disorders, absent or poor expressive language, sensory processing disorders, as well as a variety of other issues.  My husband and I were shocked by this diagnosis.  During the days and weeks that followed, we felt tremendous grief, as we mourned the loss of the Coral we had always imagined.

Today (only 3 months after receiving the diagnosis) we already see so much light, instead of just darkness.  The love, support, and prayers we have received have provided us with strength and healing.  We are on an unexpected path, and we want to share our journey with you.  Coral’s journey.  We are forever changed in the most beautiful way.

Coral is Coral, not Dup 15q.  She is our Super DUPer!  And this is our story.

“When you get to the end of all the light you know and it’s time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: either you will be given something solid to stand on, or you will be taught how to fly.”   -Edward Teller