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