Inchstones of Faith, Hope, and Love

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.20160728_194459

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 u20161120_130950s 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 su20161214_130317ch.

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 with20161201_105227out 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!20161214_082044

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. W20161211_095236e 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 o20160821_180933n 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. Our20160220_174929 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.20161207_170931

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

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In Everything Give Thanks

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.

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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.

Co20161019_150144ral 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.20161114_163249_resized

We give thanks for Coral’s two older brothers20161105_133825_2, 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.

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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:

20161112_104024_3In Everything Give Thanks

5:30am in the Rocking Chair

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.

 

Coral’s Journey- Our Journey

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