“I love and accept you unconditionally,” said Sohad El-Tantawy to her one-year-old son Noah Hesham. The mother of a happy and kind Egyptian young boy diagnosed with Down syndrome (DS) created an Instagram account to raise awareness for his condition and share with the world his inspiring journey with all its love, joy, ups, and downs.
Admiring Sohad’s initiative and courage, we asked her to share their inspiring story with Egyptian moms.
How did you and your husband feel when you realized that Noah had Down syndrome? How did you prepare yourself for the journey of raising Noah?
I knew that Noah had Down syndrome when he was 8 months old. I was shocked because I’ve always considered him a very normal kid. I was even more shocked to know that my family, my husband, and his family knew from the beginning but chose not to tell me until I fell in love with Noah to an extent that his diagnosis wouldn’t sadden me.
Once I knew about the diagnosis, I started an early intervention program which included physical therapy, skills development, and speech therapy but never changed the way I treated him. My family has always supported me and I would have not been able to do anything without them.
What is Noah’s daily routine like? How does he communicate with other children?
Like any other kid, he wakes up, goes to the nursery then if he has a session -whether it is physical therapy or anything else- I go with him then we go out with his father in the evening. He loves other children so much. He likes to play with them and kiss and hug them. Whenever he sees any child, he points at him and laughs.
Tell us more about your experience with nursery enrollment.
I went to many nurseries that rejected Noah, but finally, I found a very good one and they all love Noah so much. I will do my best to find a suitable school for him.
What are the criteria you look for in a nursery or school?
I chose a nursery that would love to take Noah. I can enroll him at any nursery or school I want by Egyptian law, but I wouldn’t force it. I will never know how they treat him and I won’t know whether they will care about him or not. I don’t want him to just join school, I want him to be included and treated as other kids, so they must want to accept kids with Down syndrome instead of being forced to do so.
One of the comments that I’ve read on social media when you created Noah’s Instagram page for awareness indicated that making Noah a face for DS is not the best decision for him. Were you concerned about that?
I didn’t think of it that way; I just wanted to raise awareness as many people don’t even know what Down syndrome is, and unfortunately, those who are aware of DS don’t know how to deal with diagnosed children. Even if he becomes a face for DS, this is nothing to be ashamed of. I am proud of who he is and I will always be.
How do you handle criticism and cyberbullying?
I really don’t care about any of it, but I won’t allow anyone to make Noah feel less than any other child.
Like every new mom, we understand that things can get really hard. What do you do when things get tough?
Of course, it gets hard sometimes. And sometimes I break down, but it is okay, it is a sign that I need to take a break and have some time for myself to be able to keep going. I guess all mothers of kids with DS sometimes think why me? Why didn’t I have a kid with no special needs? But it is okay; we are humans, we have the right to be sad sometimes, but the most important thing is that we don’t give up to that feeling. It is important to be strong to give our kids the strength they need to face this life. And in order to do that, we need a strong support system. I am where I am because of the support of my family.
What is your message to every mom who has or is pregnant with a child with Down syndrome?
Love your kid and treat him like you would treat any other child. Don’t be ashamed of him and don’t try to hide him; he isn’t something to be ashamed of. Be proud of who he is to give him the self-confidence that will help him deal with the world. Include them with typical kids at schools, as all successful people with Down Syndrome were included in normal schools.
If you can send a message to the world about treating anyone with Down syndrome, what would it be?
Treat them as normal people because they are normal people; they are just extra kind and extra awesome. Don’t make them feel like they are less than normal people.
Finally, write Noah a message and we’ll keep it for him until he knows how to read.
I love you like no one has ever loved before.
I will do my best to make you feel safe in this world.
I love and accept you unconditionally and I will always be there for you.
And our message to you Sohad and Noah is to keep on inspiring the world and filling it with love and joy.
“Extra Chromosome, Extra Awesomeness!”