With every story I am privileged to tell, I feel more and more grateful for the connections. To sit and watch a parent relive the heartache and joy that makes their story so unique is both intimate, and life changing.
I first met Diala when she introduced herself to me at the Accessabilties Expo. Her introduction was so clear and full of purpose. "I came here to see you today. I want to tell my daughter's story. She has Spina Bifida."
When you meet someone like Diala, you instantly know where you stand. She is the type of person who doesn't wear a mask and is straight as an arrow in letting you know her intentions. Her smile is warm, and her eyes are filled with determination. We didn't get to chat much at the Expo as it was so busy. Our connection was very brief, but it was the kind where not many words are needed.
Fast forward weeks later, and I find myself greeted at Diala's door by Sara enthusiastically ushering me in. It was the kind of greeting you would expect from an adult, and not a 3 year old. Articulate, and full of energy, I was excited to learn more about this extraordinary girl!
Diala and her husband Jad have lived in Dubai for the past 8 years, although from 2012 to 2015 Diala lived in Lebanon with Sara, as the medical care there was more specialised for children with Spina Bifida. The couple have two beautiful girls, Sara 3, and Thea who is 17 months old.
Pay close attention as Diala has big dreams to make her daughter's right to accessible play a reality!
1) Tell me a bit about your pregnancy with Sara.
It took me 7 years to get pregnant. At 12 weeks they discovered Sara is was not growing in the amniotic sac, but she was growing in a cavity. We continued to monitor the pregnancy week by week, and she continued to grow. At 35 weeks and 2kgs, the Dr suggested we deliver by C-section.
During the birth my biggest wish was to hear her cry. After she was born, I heard the word Spina Bifida. I had never heard this term. I thought it was a medication that she could be given and she would be ok. The next morning I started to google on my phone about Spina Bifida. My parents had received the diagnosis before me. It wasn't long after my Paediatrician delivered the diagnosis of Spina Bifida with clubbed feet. At noon I wanted to go and check my baby.
There are different types of Spina Bifida. In our case, Sara has lipomeningocele which is a closed Neural Tube Defect (NTD) meaning she has a lump in the sacral region located on the spine. All her spinal nerves are located in the neural mass which is covered by skin.
I saw several specialists in a very short time. My Neurologist told me not to check the Internet as cases are so different. Each case is like a snowflake, no two are alike.
2) What has been your biggest challenge in this journey?
There is no Spina Bifida support group or centre in the Middle East region so we have had to continually fit the pieces of the puzzle together. We have spent countless hours educating ourselves about Spina Bifida to give Sara the best life we can. We have consulted experts worldwide to be sure we are doing the right thing. Financially it can be a very big load to carry.
For the first year and a half of Sara's life we had to change her cast weekly. She had full casts on both legs. People would often look and some would ask 'How did you drop her?'. This made me angry and frustrated at first, but over time I used it as an opportunity to educate them about Sara's condition.
If I want to take Sara to a playground she can't use her walker to access most of the playground. There are no swings with support and there is often sand near the equipment so she can't push her walker there.
Sometimes educating people can be challenging. I'm always willing to explain about her condition to anyone. For example she was wearing her uniform where her splints on her legs are visible. One of the kids asked her mom 'What's that?' The mum seemed very embarrassed, so I took it as an opportunity to educate. I told Sara "When you see your friend at school go and tell your friends about your splints, that they are special legs to help you to walk."
3) What is Sara's biggest gift?
She is a social butterfly. She is super active, smart, and has a big personality. She has a real presence. Sara is the one leading us on this journey. She is very grown up. She is very curious about everything.
4) What have been your biggest fears?
Worrying comes in stages. My first biggest question was 'Will she walk?'. After that, when she started school I had fears around her safety, if she would make friends, and how other people would look at her.
It's amazing that Sara's classmates at the age of 3 now understand that Sara is Sara. They also respect not to touch her walker which is amazing for 3 year olds!
Sara's shadow nurse told me that she overheard Sara telling her classmate "This is baby Rori"( her name for her walker or rollator) and I use it for my special legs."
5) What would you like to see in Dubai?
I have a dream to build an all abilities playground.
6) What you like the world to know about Sara?
We want people to treat Sara normally and approach her. Please don't pity us, this never helps.
We don't want special treatment for Sara.
We want her to be independent. It feels good when people are genuinely interested in learning about her condition.
Thank you Diala and Sara for allowing us into your world! If anyone would like to help Diala make her dream of building an "All abilities" playground a reality, please feel free to get in touch and we'll connect you! Please SHARE to help make this dream and vision a reality!