Read Tresa’s previous story about Amelia here.
“On a cold December evening in 2017, she made her grand entry with not too much panache. It was mellow, but filled with jubilance. She was here! Frail and breathtakingly beautiful. Little did we know then, our lives would be irrevocably altered to something so extraordinary.
Amelia received her diagnosis and proved she was as rare medically as she was in character and spirit. A rare genetic condition, called 9p deletion syndrome, but not a coincidence. Turns out my husband was a hidden carrier of this condition, and she was destined to be in our lives, shaping it in ways we could never fathom.
Our life was taken over by therapies and doctor appointments; diagnosis and treatments; medical equipment and devices. It was unnerving, but two years of it taught us how to handle the intricacies of this medical life. A web, made of over 13 specialist doctors and numerous therapy hours of varying kinds, was our safety net. For a child who we have seen blue and lifeless, in unexpected scenarios multiple times, that safety net is essential. Essential to her life and our peace of mind.
We made it through the hardest of situations with the help of the support system we had built in Amelia’s birth place, the suburbs of Philadelphia, over the course of two years. We were fortunate and blessed Amelia was born in one of the best places for pediatric healthcare in the world! When a rare child is born with an unknown prognosis, it takes time for doctors and specialists to understand the child and build a medical relationship, to be able to diagnose and treat effectively.
In Amelia’s case, she had certain conditions that were so complex, even after two years, we didn’t have answers to why and what was causing them. But these unknowns didn’t deter us from living our lives and experiencing unparalleled joy while Amelia conquered hurdles thrown her way. She flourished despite the medical complications and learned to sit up, pull up to stand, and even began walking a little, with support on her specialized walker. We lived appreciating the often overlooked things in life, with a heart full of gratitude!
And then, one day, this safety net was taken away from us. We received a notification from the government that our visa renewal request was denied. Just like that, one short letter. My husband and I were immigrants from India, and the technical issues with the visa forced us to leave America and temporarily move back home to India. We had to pack up our possessions and move across continents, all in a matter of two weeks! Amelia’s whole life packed up into one small storage room. Even though we always knew this was a possibility, when it actually happened, it was momentarily earth-shattering.
I was worried and nervous for Amelia. Petrified of the unknowns. Our journey once in India, the absence of her medical team, her body’s response, the adjustment to the drastic change in environment, food changes. So many factors to consider! But personally, we were excited to be able to go back and visit friends and family after three whole years. So, we held on to hope. Hope all would be well, and we’d be able to resolve the visa issues and go back to the U.S. soon enough. We looked at the positives and clung on to the thought of being around loved ones again.
Amelia’s medical team was alarmed and upset at the situation. ‘You can’t leave indefinitely. She needs to be here. I’ll write to whoever I need to for Amelia to stay here,’ said one of the specialists. But it didn’t work like that. A medical letter couldn’t change the law. Even though they said the move was against their medical advice, our hands were tied, and we made the move, hoping for the best. Amelia took her first ever flight, and 13 hours at that. Mercifully, the over 24-hour long journey was uneventful, which is how we like it!
This was in November of 2019. It is now almost the end of August 2020. And, we are still here in India.
Amelia was welcomed with arms wide open by our friends and family here in India. Several people got the opportunity to meet her and share the joy and bliss that Amelia is! Her charm alone can melt the hardest of hearts. We celebrated her second birthday and her baptism with friends and family. It’s been magical. But, we have had our fair share of medical complexities, ever since the move.
Amelia’s GI system has been her biggest hurdle right from birth. She’s had a feeding tube to get the nutrition she needs, and has had a lifelong struggle with terrible reflux, severe food allergies, intolerances, inflamed intestines, and internal bleeding, leading to severe anemia and the need for blood transfusions.
Food and intolerances proved to be Amelia’s biggest challenge after our move to India. For months, she lost weight, had terrible bouts of diarrhea, days of painful vomiting, and just struggled with the food. We watched helplessly, while trying to find foods that would suit her body. It’s a trial and error process we painstakingly went through in the U.S., and we’ve had to redo the process from scratch here in India. It has been a lot harder here, because food regulations aren’t standard and enforced well enough.
While her body was adjusting to the environment and food, her gut was probably going through so much too. Food reactions of vomiting and diarrhea, while painful to watch, probably had a much harsher impact on her intestines — like further inflammation, bleeding, and pain. This is particularly difficult, because it isn’t something easily examined, and a diagnosis is a ‘best guess’ scenario. Because she was so weak and tired, she regressed in her physical development, and all we could do was watch, hoping and praying we’d be able to give her what she needed and help her body heal.
It was so hard on me to watch Amelia’s body weaken so much. I broke down one day, and in a moment of weakness with my sister-in-law (and Amelia’s Godmother), who was visiting India from the U.S., I pleaded, ‘Just take her with you. I can’t watch Amelia go through this.’ We cried, but held on to faith and hope!
Then finally, things stabilized with her GI tract, and we found a combination of foods that worked for her. Though extremely limited in nutritional variety, we were managing and hoping to be back in the U.S. once our visa issues were resolved. And they were! Though, in the same week we got our visa approved, the pandemic forced the world to shut down. This was back in March. Emotions were in an upheaval. I was angry and felt defeated. What were we to do?! Who was to know the future?! Could the unknowns get any worse?!
Since then, Amelia has had a new epilepsy diagnosis and has bouts of bad days we don’t know what to attribute to. She does have a couple of specialists here in India, but they’re still trying to understand her body. And then, coronavirus has made things so much harder in terms of accessibility and safety. But considering everything her little body goes through, Amelia is still making strides, at her own pace. She’s regained her lost strength and then some! She’s zipping around at home on her scooter. Running around with her walker. She’s signing and has been able to communicate with us, which is extraordinary! Her receptive communication skills have taken off, and she’s the life of our otherwise somber household.
We are still waiting on the virus’ impact to subside, government regulations to ease, embassy’s to open up, and the will of God to prevail and show us what our future entails. We hope Amelia can get back to her doctors and her therapists with all the skills she has picked up here, and with fond memories in her heart. But in the meanwhile, Amelia will continue to do what she has always done — live life with joy and teach us valuable lessons along the way. She has been, and will continue to be, a source of inspiration to anyone who knows her. Her resilience and striving spirit is what dreams are made of. How she manages to stay joyous, no matter the circumstances, is incredibly awe inspiring!
She embodies hope. She is the light in otherwise dim circumstances. Amelia IS LOVE!”
This story was submitted to Love What Matters by Tresa Joseph of Wayne, Pennsylvania. Follow her on Instagram here. Do you have a similar experience? We’d love to hear your journey. Submit your story here, and subscribe to our best love stories here.
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