A New Normal

Above: Dian Nanansingh with her son Dinel at their Mayaro home. Makeup by Shenelle Escayg, photographs by Mark Lyndersay.

It was several months into our marriage when my husband, Jagan and I learnt that I was pregnant, and we were very excited, despite our financial struggles. The announcement of my pregnancy to our family and friends created much joyous buzz as this grandchild would be the first to carry the family’s name.

Conceived out of mutual love, we anticipated our little bundle, our gift from God. The lack of the privilege of an ultrasound in 1986 meant we would be afforded the element of surprise. However, we never anticipated anything but a healthy, bouncing baby.

Delivery came on time nine months later. All seemed well, until after two hours of labour, the arduous task of pushing grew tiresome, my energy waned, and I begged “Please help me!” After what seemed like forever, a faint cry was heard, there were a few slaps of the baby’s buttocks, a healthier, stronger cry was expelled. I was relieved; the nurse lifted him saying, “You’ve got a boy!” He was my bundle of joy and I couldn’t wait to hold him in my arms.

It was not until afternoon visiting time that I would finally be given that opportunity, however I was told, “Your baby isn’t well and so we will have to take him back after visiting.” I asked no questions despite my confusion as I wanted only to have this moment. In retrospect, maybe I wasn’t knowledgeable enough, I was young and inexperienced, possibly even naïve and afraid. He simply, instantaneously became the love of my life, such a joy to behold, to breastfeed as we bonded for the first time!

My stay at the Sangre Grande Hospital lasted three days instead of the normal one-night stay. By the second day, my son was not feeding well, and he cried all night. I felt I was adjusting to this new life which I thought was normal, the bond between us growing as he slept peacefully on my chest.

By the third day, as doctor made her rounds, I grew anxious to go home, not understanding the full extent of his health issues. In my heart I believed my baby would be fine. I asked if we would be able to go home and we were both discharged. I was told to observe my son for blueness around his mouth and hands and to return to the clinic.

However, there was a quick turn of events which I was in no way prepared for nor could I comprehend in that moment. I dressed my son and myself and was eagerly awaiting my husband’s arrival to take us home when I noticed the changes I was told to look out for. The mother next to me also noted the changes and advised me to tell the nurses. Before I could do so, he was stretched out in my arms with eyes rolled around, eliciting a sudden scream from within me and drawing the attention of the nurse who immediately took him away.

Jagan arrived and with tears rolling down my face, I told him the devastating events and we supported each other as we hoped that Dinel would be better. That evening the on-call Paediatrician was called in to assess my son and we were told he needed to be transferred to Mt. Hope. We were allowed to see him and then we were sent home without our baby boy.

The next morning, on arrival at Mt. Hope, Jagan and I were briefed by his doctor before seeing him. He comforted me as my tears flowed endlessly while we were told, “We almost lost the baby last night”, he lacked oxygen, possibly suffered brain damage and was no longer breathing on his own. My hopes and dreams of caring, nurturing and providing for a healthy child were instantly shattered.

Our little guy was a fighter! My prayer every day for two weeks was to bring him home. I carried a packed bag each day in hope of bringing him home, as he fought to stay alive. Until, finally my prayers were answered. Dinel had spent one week on the ventilator and it was another week before he was feeding well enough to be discharged.

The months that followed were overwhelming, as it heaped all kinds of challenges on our young marriage. My husband and I now had to adjust to this ‘new normal’, countless sleepless nights, constant crying, doctors’ appointments, financial stress and the list goes on. We were bombarded with advice, including the option of “Put him in a home.”

The frustration mounted as we were like headless chickens, with no sense of the right decision or direction. Our response to one such piece of advice took us to Lady Hochoy, Gasparillo, where a wise soul told us, “Your son needs all the love he can get and there’s no better person for that than his parents.” As I walked away pondering those words a voice deep within said, “He’s yours, take him home and love him!” I never had it in me to part with my son, regardless of the circumstances.

When Dinel showed signs of making progress in his first year my heart leapt with joy. I can recall one day as I held him up, his tiny feet climbed up my chest, but he was still unable to hold his head up strong and with tears rolling down my cheeks, I couldn’t help but wonder whether he would walk, one day. The small pleasures were seeing him get up on all fours and attempting to crawl.

Together we rallied, until another visit took us to Princess Elizabeth where he was referred to the neurosurgery clinic at the San Fernando General Hospital. There his diagnosis, received years later read: “The patient suffers with psychomotor retardation probably due to anoxic encephalopathy in the perinatal period. He has microcephaly with craniosynostosis, is hyperactive and hypotonic and suffers with seizures.”

Dinel spent a week at San Fernando General Hospital for surgical release of his cranial sutures, a procedure that was done once but was offered up to three times. Had I been more knowledgeable or known that he would regress, I would not have consented to the surgery.

Those tiny victories Dinel had displayed were short-lived as his progress was set-back after the surgery. Dinel was so resilient in his battle to stay alive, that it gave us courage and strength to persevere, but his development was delayed instead for many years and his seizures increased.

I began to question God, “Why me? What have I done wrong?” I felt cheated, lost and confused. I spent many days crying and grieving for the healthy baby I dreamt of having and the realization hit me like a ton of bricks; this new life I gave birth to would change mine forever! I needed a new perspective.

Caring for a child with special needs requires professional help which presented many challenges, as that was not only expensive but out of our reach. Living in rural Mayaro, made it difficult to access the much-needed training and aids required to help in our son’s development. While Dinel had follow-up clinic appointments, vision testing and hearing assessment in his early years, he never had an IQ assessment.

Accessing social assistance proved futile, except for the pampers grant worth eighty dollars at the time, which we received for a short period until Dinel qualified for the disability grant at age eighteen. Along the way we became involved in support groups who sought a special interest in persons like Dinel, which gave us the courage and resilience we needed. We formed relationships that allowed us to support other parents in similar situations.

We are ever-grateful for the blessing of great family, friends and generous strangers who made our journey easier by extending their hands and hearts to ensure we had all our necessities, many a stroller or wheelchair and other aids. I am especially grateful to my sister, Flora who always stood by us with her love and support; for the many inspirational newspaper clippings to share with me and for loving and caring for my son like her own. God bless her heart!

Dinel’s physiotherapist, Sandra Chong helped us to better understand his condition and he progressed slowly. He began to hold his bottle and drink on his own. Imagine my elation when one day after letting a visitor out I returned to be greeted at the door by Dinel who had crawled out of his seat.

Encouraged by Sandra to have another baby, brought along, two years later, Dana and five years after that Avian was born. The joy of having two healthy girls who bonded lovingly with their brother was sometimes overshadowed by the financial and emotional strains. As Dinel grew into adolescence, the family’s needs grew exponentially. Jagan and I worked tirelessly, him struggling to support this family of five while working away from home and I almost single-handedly parenting and caring for them 24/7.

It is said, in our day-to-day lives it is easy to miss the forest for the trees, and overlook some of the smaller, simpler things that can affect our happiness. My social life ceased to exist and many days I felt lost and alone, trapped within the confines of our home as I tried not to dwell only in the negatives.

Having seen mental illness too close for comfort, I was determined not to allow myself to fall into the dark pit of depression. Somehow, it must have been my Christian upbringing that made me realize that I needed to stop questioning this as my purpose and follow God’s lead. I eventually began to accept this present and future and found my way back to church, as my relationship with God grew stronger.

Dinel is now thirty-two years old, and I still wait to see him take his first steps, hear his first words, and so much more. I thank God today for my husband who stood by me through thick and thin and did whatever was required to make ends meet; for my two daughters, their love and support in assisting with caring for their brother; as well as the unbreakable bond we share as a family.

Each of us connect with Dinel in different ways, his intellectual abilities might be limited but the love and joy he brings to our hearts is immeasurable. I look forward to early morning hugs, goodnight kisses and the simple touch of his hand guiding mine to feed him.

His sweet smile, laughter and happy sounds fill our hearts and our home. As I reflect on his life, I cherish the memories of watching him grow from baby through puberty and into the handsome young man he has become.

I believe “God has a plan and a purpose for each of our lives, plans to prosper and not to harm, plans to give us a hope and a future” – Jeremiah 29:11. The journey thus far has taught us as a family many lessons of unconditional love, patience and compassion.

I have learnt to ignore the stares, scorns, negative comments and I welcome the heartfelt compliments. Dinel is my pride, love and joy. When he smiles, my heart smiles! While others may see constantly drying drool and changing dirty pampers as chores, Dinel’s smile tells me that I’m doing great and it gives me satisfaction.

My prayer is that God will continue to equip us with all that is necessary to keep him happy, healthy and loved. I trust that He’s preparing me for the inevitable as I look forward to His eternal glory. The struggle to get where I am today was long and hard, but I am proud to say that without overcoming the hurdles I would not be who I am today.

Sponsors: Dale McLeod, Jacqueline Scott, Starlite Collection, Sacha Makeup, JB Fernandez Memorial Trust II.