This is not what I wanted.
I do not want to arrange our family’s schedule around taking Coral to multiple hours of therapy a week (on top of countless hours of daily practice at home). I do not want my daughter to have 9 specialist doctors. I do not want Coral to have to do something ten thousand times when it takes another child (who is often much younger) 10 times to master the same skill. I do not want the stress and exhaustion from caring for so many additional needs to pervade my family’s life, affecting each one of us differently but forcing all of us to hold on tightly to faith and hope to keep it all together. I do not want to be this strong all of the time.
Sometimes I allow myself to sit with these words and thoughts- to truly feel the emotions of so many experiences that sit far outside my typical parenting expectations. At the same time, I know if I stay in the place where these words rest, I will end up missing so much of what is present. I will be choosing to focus on what isn’t, instead of what is. I will miss this life.
One way I move outside of these thoughts is to pause for a moment to give thanks. Gratitude has tremendous power to change perspective and to bring peace.
Gratitude helps me remember that things could always be worse.
About a month after coming home from the hospital with Coral, I took her for a walk in the neighborhood. She was two months old. I had her oxygen in the lower part of the stroller. I was wary to go too far from the house, in case she had another apneic event (an episode where she would stop breathing). This was not how I imagined her first walk. Ripe with postpartum hormone changes and fresh grief from her very recent diagnosis, I was caught off guard when I was overcome by a different feeling on the walk- gratitude. I was so grateful to be able to take Coral for a walk outside. I knew there were moms I had met who remained in the NICU with their babies. Gratitude reminded me that some of these moms would never get to leave the hospital with their babies.
Things could always be worse.
In the moments when everything seems challenging and impossible, I remember that so many events along this path could have gone very differently. We face significant challenges on a daily basis, but there are challenges that we have been saved from as a result of positive outcomes to big problems. This is not about comparing Coral’s life or our family’s life to others but rather a reminder to look at what is, a reminder of an abundance of blessings- some that are apparent and some that could easily be overlooked.
Coral could have died in infancy from her severe apnea. Her infantile spasms could have never been controlled, probably causing skill regression instead of development. Her medical needs could be so great that even a trip to the store with her could be very difficult, if not impossible.
These days Coral is thriving. I run laps in the canyon by our house with Tate and Coral in the stroller- without oxygen. We recently took a trip to Colorado. She is walking (still working on her balance), babbling more each week, and learning new play schemes through imitation. She loves swimming in the pool and playing in the ocean water. She may be very different from a typical two year old, but she is certainly no less blessed. We are blessed. God is good.
Gratitude brings me to quiet and prayer. It helps me to stay in the moment.
I often work with Coral for countless hours over several weeks on certain skills to help her learn what she works so hard to accomplish. Sometimes it seems like she will never reach a certain inchstone or milestone. While I am far better at being patient with Coral’s progress, there are times when I can still feel deflated, especially when I go out that day and see a younger child accomplish, with seemingly little to no effort, what we have been working so hard on.
It is during these moments that I find my mind wandering to the “if only” scenarios. “If only” Coral had been one of the kids with Dup15q to never get any seizures. “If only” Coral was born with 46 chromosomes. “If only” our family could reside fully in the typical world, instead of walking on a tight rope in the space where special meets typical.
I usually catch myself as my thoughts race off, realizing the futility in spending time in the world of “if only”, “should haves,” and “could haves.” It is at this point that I take a moment to meditate or pray. Often my prayer is one of thanks.
Thank you God for this day, for our health, for Coral’s progress, and for your blessings. Thank you for the strength to carry on.
Short, more frequent prayers serve as a revival during the day.
Don’t get me wrong. I do not dance around my house all day floating on an effervescent feeling of gratitude. I get mad. I get sad. I get jealous. I tell God that this sucks. That this was not my plan. But I also use gratitude in prayer and meditation as a way to move past all of these feelings, to connect with peace and truth, and to connect with God and his plan for Coral and our family.
Gratitude reminds me to maintain perspective. Perspective develops gratitude.
A few months ago I was at a birthday party. Coral was sleeping in the ergo. A mom looked at me and asked, “How old is she?” Inside I cringed. Regularly, people think Coral is far younger than she actually is because of what she is (and isn’t) doing.
I replied, “20 months.”
The mom looked at her little girl running around on the concrete driveway chasing bubbles, while using the sign for “more” and saying “bubbas.” She replied, “My daughter is the same age. I wish my daughter would still go in the ergo like that.”
No. No, you don’t, I thought as I watched her daughter playing and interacting so freely and easily- how I had imagined Coral would be playing at this age.
This mom had the parenting perspective of raising a typically developing child. To her, it looked great to have a break from chasing her 20 month old around. I don’t blame her. I have been there with Tate. But for me, I would have given anything to have Coral be the toddler running around (without falling) and engaging in social play so naturally.
Our perspectives as mothers are distinct from one another- what seems difficult, what we desire a break from, and what we hope for on a daily basis. There are certainly parallels, but there are also massive differences.
I realize that I did not give thanks nearly enough when Tate was growing into a healthy toddler. I worried about the little things and focused on small details that were not exactly as I thought they should be. I now see that typical parenting challenges with Tate are fleeting and parenting him is far easier than it could be. Now I refuse to let blessings go unnoticed. In an uncertain life, nothing should be taken for granted. Perspective has blessed me.
Through gratitude, perspective and empathy can replace privilege and ego. This path may be hard, but I recognize that I have many advantages that make this path smoother than it may be for other parents with special needs kids. I have incredibly supportive family and friends, including a loving husband. I have a Master’s degree in Education and English is my first language; I can work with Coral at-home and can advocate relentlessly for Coral’s best interests. I am confident that I know my daughter best; a doctor will never tell me what to do for Coral. I use their expertise as guidance (not truth) in decision-making.
The other day we went to the beach. Tom was out riding some waves. Tate was riding the white water in on his belly (or more accurately the waves were riding him)- fun either way for Tate. Coral was standing in the water, smiling her sweet smile each time the white water rushed up against her legs. She was free standing on the sand at times and walking up the hill of wet sand towards the dry sand- wobbly but independent steps in uneven terrain.
And I was so happy. Two years ago, I never would have predicted such a perfect summer moment.
After moments like these, I find myself thinking about words that come to mind at other times. Words like: This is not what I wanted.
If I resisted having a special needs child at any point- either in pregnancy or during those first weeks after her diagnosis- I would have missed moments like these. If I assumed that I knew exactly how life was going to be with a child with additional needs, I would have given up before I even tried. If I lived by comparing my life to others using social media’s happiness barometer, I would be living a life focused on cultivating some unrealistic and nonexistent form of perfect – instead of cultivating gratitude for a multitude of blessings in the moment.
A new perspective blessed that moment on the beach. It was a moment, that two years before, I never would have realized I wanted and one I never would have recognized to be so special.
For that, I give thanks.