‘They said I mishandled the baby. All the blame came to me. She was met with 18 fractures and a brain hemorrhage.’: Mom of child with Osteogenesis imperfecta says ‘I won’t give up’

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“‘Don’t worry. She won’t break.’

This is a classic dialogue of my new parenthood. Doctors say this to insecure new parents who are hesitant to hold their infant.

But I know the truth: My baby (Aarika) has a tendency to break. She has had a dozen broken bones before her first birthday.

As new parents, we were so excited about our upcoming bundle of joy in our lives. We had planned to give our baby the best of everything. But the moment you think things are in your control, God has some other plans for you.

Rather than giving her the best, we gave her the worst. We both passed a flawed gene on to our daughter — the gene that causes a brutal disorder Osteogenesis Imperfecta (OI or ‘brittle bone disease’) and makes bones fragile, instead of resilient.

We were very happy at the time of her birth, as things were running as we wanted them to be. But life isn’t so easy. It always has its own plans.

When Aarika was 3 months old, her wrist twisted. We rushed to the nearest orthopedic and came to find out she had a fractured bone, 15 days back, without any trauma, which we were completely unaware of. But it surprisingly healed itself.

My husband and I were blank and confused.

They said I mishandled the baby. All the blame came fell on me.  I took it upon myself with a heavy heart (without finding the reasons). How I could be so irresponsible?

When she turned 5 months old, my pediatric saw her x-ray and recommend another doctor to us. Her x-rays were performed again, and another blast of shock hit us. She had another broken arm, a collarbone, and a few ribs.

Then the roller coaster ride of doctors to doctors, hospitals to hospitals started. I was a mother who was not ready to accept that her baby is ‘a case of Osteogenesis Imperfecta,’ but sadly, it was true. The reports turned out to be positive and shattered me completely. The most obvious question was, ‘Why me?’

Journey after knowing the fact:

It was hard to accept the fact, but we had to do so because running away from things was not the solution. I was scared to touch my baby because even my mild touch could be devastating for her. We were deeply in the fears of breaks, surgeries, brittle teeth, hearing loss, and scoliosis.

These things broke me with guilt and fear. Though I was trying my best, sadly, my best wasn’t good enough for my little one.

She kept on crying in pain and I just stood there helplessly, seeing her in devastating pain of breaking and fear of doctors and bandages.

But the smile on my little fighter’s face always pulled me back up. Her twinkling eyes always said, ‘Yes, Mommy! You can do it. We are strong enough to deal with it.’

‘God had chosen you to be my mother and he must be having some reasons for it.’

And that day, I accepted that challenge.

We started taking her out everywhere with us. She started laughing, giggling, and enjoying with us, despite her ongoing fractures and casts, one after another. We won’t let these breaks stop Aarika’s life. These breaks are a part of our lives and we kept them as a side chapter of our lives.

With time, every break turned into a physical, mental, emotional, and financial breakdown. We are now used to facing fractures on almost every special occasion, be it any festival or her birthday. A plaster-less day is a celebration for us now.

Courtesy Ritika Garg

Changes after a year:

Accepting a fact and living with the fact daily are different things. I accepted it, but when I have to spend my every second in a fear of her break, the thought of buying a wheelchair for her was beyond my acceptance. Seeing other kids of Aarika’s age running and jumping, while she would just glare at them as if that was something unusual happening in front of her eyes, always brought tears in my eyes.

Once I took her to park with a casted leg, she called kids to play but none of them joined her. She waited for 30 minutes after that. She felt so broken that she hugged me and said, ‘Mumma, I want to cry!’

Now, I am not leaving any moment to be happy with my daughter. So what if she is not physically strong like any of us? She will do all the tasks, albeit in a unique way.

She enjoys rides, cycling, swimming, gaming, shopping, and learning everything.

Raising a disabled child is not at all easy but trust me, these kids are gifted with immense strength, just like my Aarika. She taught me that ‘Disabled doesn’t mean Unable’ by her ongoing unbreakable spirits and breakable bones. Us mom and babies are going to create a new world of success for us.

When I am already having a tough time, society doesn’t need to kick me harder. People always console you, feel pity for you.

I often hear things like:

‘It’s your bad karma hitting you back.’

‘She is a girl, how will she marry?’

‘She is so weak, why don’t you feed her properly?’

‘Is there any need for immunization vaccines for her?’

‘Why do you educate her or send her to school? Keep her at home!’

It’s painful to explain things again and again, but yes, this society needs stronger answers to their silly questions, but most of the time, it needs to be ignored.

To this day, she has had 18 fractures, numerous muscle injuries, and a brain hemorrhage. Now, I won’t let anybody to sympathize with us. We are strong enough to deal with things. Just respect us and accept us with a full heart, the way we are.

I know the struggles are yet to come and it may be harder to counsel a growing young girl, but I won’t give up!”

Courtesy Ritika Garg

This story was submitted to Love What Matters by Ritika Garg. Follow her journey daughter’s journey on Instagram here and Facebook here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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