Lulu Al Ma’arek
We have been blessed with sons and daughters of sound mind, body and spirit and for that we are eternally thankful to God Almighty. We received the birth of our youngest child - Lulu - with some difficulty, however, because it wasn’t easy at all to learn of her Down syndrome diagnosis.
But we accepted our God-given fate and today, I can truly say that Lulu is the light of our lives.
The doctor who presided over her birth tried to reassure us, saying that Lulu would be compassionate and loving and kind and that she would grow up to be similar to her peers with the right care.
During that time, I often prayed to God to bless her and to help me raise her well.
Lulu was born with a heart defect that required surgery when she was only 6 months old. She was a quiet, calm little girl with an ever-present smile, beloved by all. I was very careful to treat Lulu in the same way that I treated her older siblings, without making allowances for her special needs. I began to train her to say simple words in her infancy and she took her first step when she was 21 months old. Her doctor advised me to take her to school at that age, although I was hesitant to do so. But he informed me about the “Al Nahda Schools for Down Syndrome” and that is where we went.
I was welcomed at the school with open arms and a great deal of warmth and love. Everyone who worked there was so polite and helpful that I instantly felt better about leaving Lulu in their care.
From that time, Lulu began learning in a way that was personalized to her capabilities and I continued to train her at home, rarely leaving her side. As a working mother, it was a struggle to balance my job with my responsibilities towards Lulu as well as my other young children who also needed their mother’s love and attention.
Lulu accompanied us on visits to family and friends where she played with her cousins and learned new words and actions on a daily basis.
When she was 8 years old, I tried to teach her to write out the alphabet. The difficulty of the task rendered her uncooperative and stubborn but I arranged for a private tutor to help her. At the age of 10, I enrolled her in a Quranic studies class to give her an opportunity to interact and integrate with her peers in a natural setting. She successfully memorized some verses from the Quran while also forming friendly bonds with her classmates.
The school played a huge role in encouraging Lulu and helping her reach her potential while also teaching her how to integrate into the wider community. Lulu often participated in school events and even made media appearances on their behalf. The most important legacy they left her with was self-confidence and the courage to interact with others.
We owe her success to God, her home environment and her school. Today she is an employee at Saut Society - a testament to all our hard work with her throughout the years.
I thank God each day that my child has managed to reach this level of success.
Deem Al Sehail
I had a feeling I was pregnant again. A mother to two boys already, I longed to welcome a little baby girl to our growing family. This is where my story begins.
I told my husband about my suspicions and we went to the doctor who confirmed my pregnancy and told me that I was 2 months along. I opened a patient file at Dr. Soliman Habib Clinic, just as I did with my first two pregnancies, and went back on a monthly basis for routine checkups to ensure that everything was progressing smoothly.
In the sixth month, I asked my doctor to tell me the baby’s gender and the ultrasound revealed that I was carrying a healthy baby girl. I was overjoyed. After two boys, this was the news I had been waiting for. Perhaps my exhaustion from working prompted her early delivery because just like her brothers before her, she arrived well before her due date.
The birth was difficult. I was very worried about losing her. The doctor on duty told me that the baby had a weak pulse and that I may need a Cesarean. Thankfully, I had a natural delivery but she was born blue with serious breathing difficulties. One of her nostrils was 100% closed and the other was 90% closed so they gave her oxygen to stabilize her. There was no mention of Down syndrome on that first day although I suspected it when I saw her in the nursery. My husband informed me the next day that our child was born with Down syndrome and the first words out of my mouth were “Praise be to God”.
She stayed in the hospital for 10 days. She needed surgery to ease her respiratory issues and during that time, I called each of my boys in one at a time to explain their sister’s Down syndrome diagnosis to them. I knew that they would instantly notice that she looked different from them, prompting many questions. My eldest greeted the news with a mixture of tears and complaints while the younger one just asked questions about her appearance - “Why does she look different from us?”
I sat them both down and explained the importance of taking care of their sister and not making her feel that she was different just because she was born with Down syndrome. I told them that we were all responsible for taking good care of her just like we would any other sibling and giving her the love and attention she deserves.
Our daughter is with us at home now. I take her to physical therapy on a weekly basis and I scour the internet for all the latest information and advances in the field. I recently downloaded a guide for parents of children with Down syndrome aged 5 - 12 to help prepare me for any challenges she may face during this time.
Faisal Al Aqeel
Like any other expecting mother, I longed for the day when I would embrace my newborn baby, holding him in my arms and showering him with hugs and kisses. I remember the day of Faisal’s birth clearly. It was during Eid and I was rushed to the hospital where I spent the next agonizing 24 hours in the delivery room.
But it was all worth it when I held my son in my arms after all those exhausting hours that left me drained yet still excited to meet my baby. My happiness was short-lived. The doctor and Faisal’s father informed me together that my son was born with a heart problem and that he had Down syndrome. The Down syndrome diagnosis didn’t bother me. It was an afterthought. What really worried and upset me was Faisal’s heart condition. They told me that he needed emergency surgery within 24 hours and he was immediately transferred to King Faisal Specialist Hospital to undergo this operation at only one day old.
It was a temporary fix and Faisal had to undergo another heart operation at 10 months of age. During these months, he was susceptible to a number of health issues and spent a great deal of time in the hospital receiving the appropriate medical care.
Needless to say, these were among some of the darkest and most difficult days for us to bear. Laden with anxiety and grief, the days and months went by until the doctors decided that Faisal needed another heart operation at one year of age. This one took 8 hours from start to finish. Each second that ticked by felt like a lifetime for myself and my husband who had become extremely attached to Faisal since his birth. When the doctor finally emerged from the operating room to tell us that the surgery was a success, I felt the blood drain back into my body as I breathed a sigh of relief. I knew the journey ahead would be difficult and would require us to be vigilant with his care, monitoring every breath and every movement incessantly.
After a month from this surgery, we rushed him back to the hospital for yet another operation because of fluid build-up around his heart. This time, the operation took 4 hours, but thank God, it was ultimately a success. He was discharged after 10 days and we took him home where everyone was eagerly waiting his return. It was at this point that I finally sat down with his siblings and shared Faisal’s Down syndrome diagnosis with them.
Faisal’s health began to improve with time, giving me the space to start thinking about his training and education. I had been so consumed with his health issues that I had no time to think of anything else, including his special needs as a child with Down syndrome. My research led me to the Al Nahda Schools for Down Syndrome. I carried Faisal there in my arms due to the weakness in his limbs and muscles and enrolled him in the early intervention program. Right away, we began with intensive physical therapy which he responded to very well. As his physical health improved, I began introducing him to his community through events and various other initiatives. I didn’t want to treat him any differently than his siblings, and most importantly, I wanted to build his self-confidence. To that end, I began depending on him to carry out little tasks around the house.
At 12 years old today, Faisal is capable of leading a normal and independent life for his age. The Saut family has become a part of his own family, teaching him and training him on how to face the challenges that often accompany a Down syndrome diagnosis both now and in the future.