Silah "Down Syndrome Is"

Today’s “Down Syndrome Is” story is about the emotions many parents go through when they first receive the Down syndrome diagnosis. Fear is filled with all the “what if’s”. Then somehow amongst all the chaos, a beautiful bond is formed. A bond so strong that you beg God to be able to keep your precious baby who is fighting for their life. At that very moment, a warrior parent is born.
I had no plans to share this, but after this recent incident, I feel this needs to be discussed and shared.
My second born has Down Syndrome. It is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability.
My daughter was delivered at a well-known hospital in Pakistan, and my pregnancy was not smooth since day one. From a detailed anomaly scan to a fetal echo, everything was done at the same well-equipped hospital, but nobody could diagnose that my daughter was going to have Down syndrome.
She was a full term baby and right after my delivery, in the labor room, I got to know that the tiny lil angel I just delivered had down syndrome. I was shattered, broken, devastated, almost dead when this heartbreaking news was shared with me. Although my gynecologist still believed that my daughter was perfectly fine, her physical condition negated her.
My daughter’s vitals were not normal, she had low saturation and could not breathe properly without external support. She had severe pulmonary hypertension and three holes in her heart. She was transferred to another hospital after three days of admission at the one I delivered her because they didn’t have a ventilator available and there was a chance of deterioration in her condition.
Before that point, I was thinking about her future, about society, and my family. Will she ever be accepted? Will she ever be able to live independently? Will she hear, speak, or see? Millions of questions were in my mind which were already giving me panic attacks. But when I heard that she may leave me forever and I may not be able to hold her again, that was the moment when I stopped thinking about every freaking thing. I prayed to Allah SWT that I want her, I want my daughter…my flesh…my blood… ALIVE .. however. I started begging my Creator to let me have her back with whatever genetic disorder she has. I could not think of anything…anybody except for her life. And yes, HE listened to me and gave her back to me. Alhamdullilah.
We brought her home and we took care of her like a vase of glass. Within a few months, she filled our lives with joy, bliss, and happiness. She was the one who taught us what UNCONDITIONAL love is. She takes all my worries away just by giving that wide bright smile.
She is now 14 months old MashAllah. Her heart, vision, and hearing are all functioning properly Alhamdullilah. She is going for physical, speech and occupational therapies at KDSP and progressing well Alhamdullilah. There are more than hundreds of people who stood by my side, who supported me, who prayed for us. My husband, my in-laws, my siblings, my friends, colleagues, her doctors, her therapists. I am indebted to so many people who were there with us to make things better for us. It is a tough ride but people around us made it easier for us. Above all, she is the most resilient kid I have come across. She is a star! She achieved almost every milestone on time. She proved all those idiots wrong who said you should have her aborted because these kids are a burden to society and parents.
I am 101 percent sure that my lil munchkin is going to rock the world InshaAllah. I am hopeful, positive, and strong. I believe in the power of prayer and have witnessed miracles happening with this power.
The incident which forced me to write all this is; I had a pelvic scan a few days ago at a very well known hospital in Pakistan for some minor issues I may have. During the discussion with the sonologist I told her about my daughter and the statements she passed about her are written below.
“Why didn’t you know about her being a DS kid? Were all the reports wrong? Why did you keep her? You should have gone for an abortion. You are young. You could have another normal child. What is your daughter’s IQ level? Plan another baby, since your normal kid (my elder daughter) needs a normal sibling to play with. For how long will she support this abnormal kid?”
I did not utter a single word in reply since I believe in keeping my energy restored for my kids and family. It’s pointless to argue with the people who don’t matter to us.
I am waiting and working hard for the day when my daughter will answer all those obnoxious questions by herself. InshaAllah.
For us, Down Syndrome is a breeze which took us to the track of unconditional love. We learned to love, respect and share without expecting a reward or something in return." - TALKHEES ADIL