Voice in the Wilderness
Author: Tresa Joseph 22 Dec 2021
My story has a miracle. A living, breathing one. A child. Disabled and perfect.
It’s probably not something a lot of people would call a miracle. My four-year-old daughter is a child that nobody prays for. Quite the contrary, people pray to not have a child like her. It is the biggest fear of an expectant parent. A child born with an ultra-rare genetic disorder, a chromosomal condition that affected her even before she was born and will do so probably until her last breath.
She, Amelia, is my miracle.
I lived a quintessential easy life until Amelia was born, four years ago, including my pregnancy. I lived in the U.S at that time and my parents were visiting us from India to help with the new baby. While there, my mother and I often had an interesting conversation, which in hindsight seems inspired by the Spirit. But back then, neither of us knew why the conversation would go the way it did. I would often sing worship songs while Amelia was in my womb and my mother would then ask me to pray for a healthy baby. And I would vehemently reject that request and instead insisted on praying for a child that brought joy wherever she went and touch whomever she met. And if she asked me why, I wouldn’t have an answer for her. But I have one today. I now know why. The miracle. ‘For surely I know the plans I have for you, says the LORD, plans for your welfare and not for harm, to give you a future with hope.’ (Jer. 29:11)
Amelia came into our life on a cold December night and turned it inside out. Within the first two hours of her life, we knew that she was different, and we gladly welcomed her ‘Then Jesus took a little child and put it among them; and taking it in his arms, he said to them, “Whoever welcomes one such child in my name welcomes me, and whoever welcomes me welcomes not me but the one who sent me.”’ (Mk. 9:36-37) Amelia spent every night for a month since her birth, at the NICU. She was by no means a healthy baby. A different organ in her body seemed to malfunction on different days, in the first few days of her life. Nobody was certain about what the real underlying condition was, just some speculation. Amelia was baptized on the 4th day of her life. It was as if after that, her body slowly started waking up, things were finally beginning to work, as it is meant to be. The miracle, slowly unfolding.
We learnt about her actual diagnosis 2 weeks after her birth and we started falling into a rhythm of waking up and rushing to the NICU to see our little girl, spending the day with her. Holding on to her with the help of nurses while a million tubes and probes stuck out of her, taking her in, knowing that we’d leave at the end of the day without her, to a home that doesn’t have her, leaving a piece of our heart back, night after night. On New Year’s Eve, Amelia finally came home from the NICU. After a month that I thought was exceptionally hard, came the next few months which were even harder. Amelia was and always has been a medically complex child. She has several medical conditions including a feeding tube, that makes her medical history a complicated and long one. Through months of learning to navigate these tough, new waters of appointments, therapies, doctors, therapists, medical equipment and well, a brand new medically fragile baby, we were on fight or flight mode, surviving and grateful for making it through yet another day. Her first year of life was by far the hardest. With extreme reflux and voracious vomiting taking over our lives, along with the regular problems of sleep deprivation that new parents go through, we should have felt defeated, both physically and mentally. But we didn’t. We felt alive and grateful. Tired, but happy. ‘God did not give us a spirit of cowardice, but rather a spirit of power and of love and of self-discipline.’ (2 Tim. 1:7 NRS)
Amelia had her first of many surgeries when she was 4 months old. She was getting a permanent feeding tube in her belly. It was scary and nerve wracking to see your 4-month-old baby being taken away to be put under and operated on. We waited anxiously and after, the doctor assured us that everything was okay. She seemed off, but what did we know about post operative behavior?! We took her home after a day, still unsure, and rightly so. Cause that night Amelia stopped breathing, and we saw her lifeless body, blue and cold for the first time. We didn’t know why then; we still don’t know why that happened. But the Spirit worked so strong in that moment in my husband. He instantly started CPR with textbook technique based on an informal training we received when Amelia was being discharged from the NICU. He gave her breaths and compressions while I was on a call with emergency services, pleading for paramedics to come sooner. But before they could arrive, my husband was able to revive her. She took a breath and slowly came back to us. This has happened 4 times in her first three years of life. It leaves a scar so deep, that just thinking about the episode can physically ache. So where is the miracle in all this, you may wonder?! ‘We know that all things work together for good for those who love God, who are called according to his purpose’ (Rom. 8:28)
It’s in the good parts, the seemingly bad parts, and the worst parts too. It is in our every day, in every breath, in every smile, in every cry. Cause she, Amelia, is our miracle, and the life with her is a miracle too!
Amelia started smiling when she was about 3 months old. Like everything else in life, she does everything at her own time. But when she finally did start smiling and laughing, it melted hearts no matter where she went. She senses when someone is upset and knows how to bring joy to them, even if it is momentary. During periods of excessive pain, she’d have moments of respite, and in those moments, she’d console us. She’d smile at us through painful tears as if to tell us, it will be okay. ‘Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.’ (1 Thess. 5:16-18) And it was okay, it is better than okay. She’s a ball of energy, even though she can’t walk independently. She speaks volumes, even though she doesn’t speak a single word. She enjoys every flavor of life, even though she doesn’t eat a single morsel of food orally. Amelia IS LIFE.
My miracle is my biggest teacher. She knows how to love herself fully and unconditionally. She knows how to love others like she loves herself. She finds joy in the smallest things, and everything is a gift to her. She is love, she is joy, she is peace. ‘The fruit of the Spirit is love, joy, peace, patience, kindness, generosity, faithfulness, gentleness, and self-control’ (Gal. 5:22-23 NRS) Disabled, perfect and filled with the fruit of the Holy Spirit.
And through her I learnt the importance of advocating for the Disabled; the importance of changing the narrative and breaking the stigma; and the need for supporting the parents and caregivers of the Disabled. From there, stemmed Voice in the Wilderness – a ministry for the caregivers of the Disabled; to come together in faith and be a support system for each other.
This is my story, the story of my miracle and how together we hope to spread her joy and goodness around and be there for others on this difficult journey of acceptance of their own little miracles.
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