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.

20161029_074455_2

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.

20161112_094251

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

6 thoughts on “In Everything Give Thanks

  1. What a beautiful little girl – I know there are challenges, but honestly, she looks like she is so happy and doing just great – must be because she has an awesome family! Congratulations Elaine!

    Like

  2. Hi Elaine and Tom. Your sweet daughter, Coral, is adorable. You are such good parents to her and you’re right – Her rolls are the best and she is such a happy girl! God is good and will help you to move forward. All the best to you and your family 🙂

    Like

  3. Wow….Elaine this is so beautifully written…..thank you for sharing your thoughts and feelings about Coral. Aunt Vicky just shared with me a current picture of Coral all dressed up in her red holiday outfit. She looks so cute and beautiful, ready for the holidays…I am so happy for your family to hear that Coral is improving each day. Enjoy the holidays with your precious Coral. Keeping your family in my prayers. Hugs

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s