Love doesn't count chromosomes

"Love doesn't count chromosomes" Jamila Jumshudova

As part of our #cultureofcare ‘Diversity, Equity and Inclusion’ focus, the company spoke to Jamila Jumshudova, SAP Data Administrator in Baku, about what it’s like to be a full-time working mum with 22-month-old twins who both have Down Syndrome.

In this honest and heartfelt interview, please read how Jamila hopes to break down barriers and myths about raising a child with disabilities and her wish to help others within the business who may also be looking after a child with special needs.

Tell us about yourself?

“My husband and I have been married for nearly four years in Baku, Azerbaijan, and as a young (I am 29 now, and my husband is 31) and newly married couple, we were so happy and surprised when we found out that we were expecting twins – double joy!

We were just an ordinary small family, trying to do our best in life (work, life, friendship, building a house). We were not looking for extra attention, we just wanted to be like others, but it turned out that we had a 14/15 in a million chance of becoming parents to have non-identical twins with a little extra chromosome – Down Syndrome.”

When were you first told that your daughters had Down's Syndrome and how did you feel when you heard the news?

“Unfortunately, in my country, there are no ethics protocols or legal rules for doctors to reveal a diagnosis to the parent, unlike more developed countries.

The government also does not cover genetic test requirements during the prenatal period.

My husband and I had been expecting healthy children since the ultrasounds, and the non-invasive genetic test did not highlight any risk. I wish I had known beforehand, so I could have at least prepared myself and my family. However, I was given the shocking news after giving birth to the second twin (Sofia) in the hospital room, and then I was left alone.

I was so confused trying to accept the new reality. It hit me psychologically, mentally, and of course, physically, but I knew the only way I could help my girls was to be a strong and loving mother.”

Tell us about your two daughters?

“Inji and Sofia are just amazing little girls spreading love and joy around. No one can resist their smiles.

Our children, made by designer hands and rocking' designer genes, take us on a tour of their World. Some children born with Downs Syndrome may not have strong muscles, they may often have heart problems, breathing and hearing difficulties due to smaller nasal passages and ear canals, and the list can go on and on depending on the child.

However, we keep working on the girls with various therapies and early intervention programs that are part of our daily life.

When Inji and Sofia start progressing, and we see them mastering skills that have taken them significantly longer than other children, we rejoice. I want to shout from the mountaintops…See, my little one can do this!”

What is a typical day like when you watch your daughters and go to work?

“I usually wake up at 5 am. (of course, if I am lucky enough to sleep a couple of hours during the night, I’m sure most mums can relate to sleepless nights!) I then start the day by preparing baby food, giving the Inji and Sofia their baths, and communicating with girls to spend more time with them before I go to work.

Then, my babysitter arrives, and I go to work. Still, I constantly keep in touch with the babysitter through video calls during the day, controlling the girl's medical routines and physical therapies.

At 6 pm, I come home, and the full-time mummy shift starts, so we play, dance, and hug a lot. I really can feel how much they have missed me.”

What support did your work, and colleagues provide you with?

“I am grateful to my SAP team; each team member sincerely cared for and supported me during that sensitive period after maternity and even after receiving the diagnosis. One of the first calls I received was from my SAP Team. I appreciate that.”

How can the workplace help support colleagues who are looking after children with Special Needs?

“It would be so lovely to create a platform or event (at least once a year) for parents raising kids with special needs where they can share their experiences and support each other.

Social responsibility programs are also valuable tools since, in most cases, parents face serious health issues with their kids’ requiring surgeries, etc.”

How do you cope and balance your responsibilities between caring for your daughters, husband, friends/ family, and work?

“Well, I do not always succeed in that. Sometimes I get really exhausted, and then I ask for support from my husband, mother, and friends. Even two hours of rest could be enough for recharging.

But in general, I get used to being as multifunctional as all mothers are.”

What has having the twins taught you?

“Having twins has taught me:

• A lot about Down Syndrome.
• A lot about myself.

But there are also things I have learned about life:

• Sometimes life's surprises turn out to be the biggest blessing.
• It is okay to slow down.
• Happiness can be found in even the smallest moments.
• Differences are beautiful.”

Why is it important to you to share your story?

“I would like to share my story because a mother may be struggling with a similar situation, maybe crying, and thinking there is no hope. That mama may have struggled with the diagnosis and bonding with their child for longer than I did. That mama may have discovered that other issues besides Down Syndrome are also going on with their child. I want to tell her…

You are not alone, and everything will be okay! Jamila Jumshudova

I want to show other parents that love doesn't count chromosomes and that Down Syndrome – is not the end of a happy life. It is just a different path we are walking on.”

What do you want people to understand about raising children with Down's Syndrome / Special Needs?

“For every parent, having a child is a miracle. But the day my twins were born, I learned that my babies were miracles and special in every sense.

My entire World turned upside down twice that day until I realized what a gift they were to me, the most tender and pure creatures that needed my unconditional love and protection. Their extra chromosome makes them even more unique. My husband and I feel blessed to be their parents.

I want to advocate and show that my daughters are worthy, they are enough, and all they need is inclusion, love, and respect, just like other kids in this World. Any one of us could end up developing a disability, and it is important that we make sure everyone feels included and valued.”

Country Manager, Ed Wheeler said: ‘'We thank Jamila for sharing her story of being a mum to children with Down's Syndrome. We take our Culture of Care and our employees' well-being very seriously and sympathise that balancing family life with work can sometimes be challenging. However, we encourage others like Jamila to come forward and share their stories. Only by sharing our experiences can we learn and support one another. Through our diversity, equity and inclusion (DE&I) policy, we are determined to create a working environment where employees feel comfortable speaking out about their feelings. Therefore, in doing so, we hope that employees feel respected and fairly treated.”

If any of the content in this article has affected you, or you wish to speak to someone for further support, please contact one of our wellbeing advocates.

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