by Niki Marsden
When life’s circumstances knock you to your knees…
When your world stops on its axis and life as you know it suddenly changes…
When it feels like your life is suspended and dangling in time–waiting for that diagnosis, waiting for the milestones, waiting for medical answers that are never forthcoming…
Spirituality certainly helped me pull out of the lows and cope with the stages of grief that comes with parenting a child who has complex medical needs.
Grief can be the garden of compassion. If you keep your heart open through everything, your pain can become your greatest ally in your life’s search for love and wisdom. – Rumi
I’ve been at this parenting thing for a while. In 2008, with two daughters ages 13 and 18, I could just see an empty nest out there on the horizon. My journey took a new turn when I learned I was pregnant. At my first prenatal visit when the doctor informed me that I was expecting twins, all I could do was nervously laugh. Days after my twin girls were born, a nurse in the NICU informed me that Baby A had experienced a brain bleed–a rare pediatric stroke.
Fast-forward to today, and the twins just turned seven years old. Jada is coming into her own–she just learned to walk last year. For years she has been working diligently at Physical Therapy, Occupational Therapy, Music Therapy and Adaptive P.E. She is in a moderate to severe needs special education classroom. She has Ataxic Cerebral Palsy, Global Developmental Delays and Cortical Visual Impairment. Her arms are weak and uncoordinated, but the hugs she recently learned to give feel like I am being wrapped in feathery angel wings. Jada is still non-verbal, but quite fluent in LOVE. Jada’s neurotypical twin sister, Maya, is her constant companion and greatest advocate.
When I reflect back on this journey, what comes to mind is the word isolation. That feeling that I may as well exist on a desolate island, far away from anyone who understands. Isolation in all senses of the word.
Physical Isolation: it was overwhelming to leave the house with twins, especially with Jada, who requires lifting, constant balance support, and constant hypervigilance. She is seven years old but developmentally at the level of a 12-month-old.
Mental Isolation: means you can be at a noisy birthday party or in the midst of a crowd and still feel absolutely alone.
Spiritual Isolation: since it is physically difficult to leave the house, going to church now seems to only occur for weddings, baptisms, and funerals.
Along the way, I’ve also learned that it is ok to be “down in the valley” as long as I don’t set up camp and dwell there. I have learned that analyzing and agonizing over the past induces anxiety. Projecting too far into the future also produces worry.
I have become more aware of this pattern. When I realize that I’m agonizing over the “what its” of the past or the unknowns of the future, eventually Jada with her warm brown eyes, so full of light, honesty and love, helps to center me back to the present moment.
When you honor, acknowledge, and fully accept your present reality–where you are, who you are, what you are doing right now–when you fully accept what you have got, you are grateful for what you have got, grateful for what is, grateful for Being. Gratitude for the present moment and the fullness of life now is true prosperity. – Eckhart Tolle
Stepping out of the rat race and staying home to care for the twins for the last five years has allowed time for introspection– time to truly examine my feelings and release beliefs that no longer served me. I realize that this experience has actually been a conduit for deepening my spirituality.
I encourage you to frame depression more cosmically, as a rugged journey of consciousness expansion…Transforming depression is sacred work…It’s not just about a biochemical imbalance; it’s releasing your grasp on your personal identity, permitting positive change that can prompt redefinition of the self…Hope reprograms your biology and keeps you positive. By being positive you increase serotonin and reduce stress hormones. Hope acts as a natural stress reducer, relaxing your gut, blood vessels and bronchioles. Plus, science suggests that hope lessens pain by increasing levels of endorphins – Excerpts from Judith Orloff, M.D., Emotional Repair Kit – 50 Tools to Liberate Yourself from Negative Emotions
I’ve learned that self love, self care and “tending to my spiritual garden” is neither selfish nor optional. It is actually a matter of survival.
The more whole I am, the more whole my children will be. The more present I am as a parent to enjoy this is miraculous journey that we call life.
Does this look like “failure to thrive”?
One only needs to open their eyes to see that I am fully alive
Fearfully and wonderfully made
You will never find me in the shade
I am here to change the world you see
I shine so bright and brilliantly