Osteogenesis imperfecta (OI) literally means “imperfectly formed bone.” People with osteogenesis imperfecta have a genetic defect that impairs the body’s ability to make strong bones.
Editor’s note:- When I approached Ritika, whom I only know through a moms’ platform we are both part of, she agreed to write for us right away. Such is the optimism she exudes that it is beyond contagious. Upon speaking to her in detail, she expressed her disappointment at the social stigma attached with children that are even slightly “different”, and that her goal is to find a place for her daughter in the society. This, she asserts, can only be done by spreading more awareness about lesser known conditions like O.I.
We can’t thank Ritika enough for allowing us to publish this piece, and also for the undeterred grit she displays in fighting for Aarika.
I believe, we must display our support to the undying spirit of this mama and her mighty daughter, Aarika.
Hence, I implore you to please read, share, and drop in a word of encouragement for Ritika and Aarika! You can also email your response to us at hermusings34@gmail, or follow one of our Facebook and Instagram pages.
Ritika also writes regularly about her O.I. journey on https://www.momspresso.com/parenting/unbreakable-spirits
Arihant and I, as every new parents, were super excited about our upcoming bundle of joy in our lives. We had planned to give our baby the best of everything. Like every parent.
But, the moment you think that things are under control, God has some other plans. They say, if you want to make God laugh, tell him your plans.
It wasn’t until a few months after she was born we realized that rather than giving our baby the best, we gave her the worst. We both had passed a flawed gene on to our daughter—the gene that causes a brutal disorder Osteogenesis Imperfecta (OI or “brittle bone disease”).
O.I. is a genetic disorder that results in bones that break easily. A blue tinge to the whites of the eye, short height, loose joints, hearing loss, breathing problems, and problems with the teeth are also associated with it.
Aarika already had a dozen broken bones and a brain haemorrhage before her first birthday.
Her first fracture had healed by itself by the time we got to know about it. It was a sudden shock for happy new parents that their 3 months old baby has a broken bone. One they were not even aware of.
After a few months again, her x-rays were performed and we were told that Aarika had broken a wrist, few ribs and a collar bone. Even then, we weren’t aware of these breaks as she never showed any sign of such brutal injuries.
From here, the roller coaster ride of visiting one doctor to another, and from one hospital to another started for a mother who was not ready to accept that “her baby is a case of Osteogenesis Imperfecta”. But, sadly it was true. Reports turned out to be positive that shattered me completely.
I was scared of touching my baby as even my mild touch could be devastating for her. We were deeply in the fears of breaks, surgeries, brittle teeth, hearing loss, scoliosis, etc.
These fears that I can’t handle her were breaking me with guilt and more fear. Though I was trying my best, sadly, my best wasn’t good enough for my little one.
But, the smile on my little fighter’s face always pulled me up! Her twinkling eyes always said, “Yes mommy! You can do it”; “We are strong enough to deal with it together.”
And that day, I accepted the challenge.
Arihant and I started taking her out everywhere with us. She started laughing, giggling, and enjoying with us, despite her ongoing fractures and plasters, one after another. Arihant and I have never let these breaks stop Aarika’s life. Sure, these breaks are a part of our lives, but we keep them as a side chapter.
With time, every break turned into a physical, mental, emotional, and financial breakdown.
Where on one side it gave us an augmented perspective for our inner liveliness, awareness and strength, on other taking care of a family member with special needs demanded all our time.
Today, I need to monitor her health, leaving work and all other things behind, her father needs to work really hard to bear the enormous medical expenses and other operations.
But, the battle isn’t just inside the home. Every other day, we need to struggle for the acceptance of our baby in this not-so-disability-friendly society.
We have even had to fight for her basic fundamental rights like education. Every school refused to take her because of her disorder.
Whether knowingly or unknowingly, people poke us badly. We become the center of attention of every social gathering where people are always ready with an off-putting question or two.
But, whatever may the circumstances be, one thing that has always remained intact is Aarika’s determination.
It’s her smile, will power, and dedication that give me immense strength and make me a proud mommy.
Thanks to her and only her, I have become more balanced, loving, caring, independent, and patient. I have discovered a better person in me only because of Aarika.
And today, I don’t let anybody sympathize with us. We are strong enough to deal with things. As Aarika’s proud parents, all we need is the respect and acceptance for who we are, with an open heart.
I know the struggles that come with a growing young girl are yet to come, but I won’t give up. Not today, not ever.
Please keep showering your blessings on Aarika for a successful and a happy life for her.