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 7th, 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.