Our Plan versus God’s Plan: Bringing up a Child with Down Syndrome

Our Plan vs. God’s Plan

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Zainab Ahmed, Chicago, USA

With excitement and anticipation, like any other parent expecting their child’s arrival into this world, we were racing to the hospital as the pangs of labor were getting closer. It was our second, with our first being a ‘typical’ two year old son. This time we were told it would be a girl. “How exciting!” we had said, “a complete family! And we would make a perfect family picture!” Everything had seemed perfect… Or perhaps we thought it did…

When you get blessings from God, without even asking for it, there is a tendency to take those blessings for granted, without truly appreciating its value, without truly being grateful to the Almighty, without truly enjoying those blessings. As God the Almighty says in His final testament, the Quran, “And if you should count the blessings of Allah, you could not enumerate them. Indeed, mankind is most unjust and ungrateful.” [Quran 14:34] This time, our second child had been “perfectly” planned. Her parents had her ideal arrival time set up to give their son a baby sister to play with. Little did we realize, that we may “plan” a million plans but Allah, the Almighty, has HIS plans and like Allah says in the Quran, “But they plan, and Allah plans. And Allah is the best of planners” [Quran 8:30].  I was a 25 year old at that time and like any other woman in her mid-twenties, I was ambitious. I had made up a definition of what an “ideal and normal” life would look like: good grades, a Master’s degree, a successful career, getting married early to the man of my dreams and having healthy (and “normal”) kids. We apparently had it all. The plan was simple: I wanted to be considered “normal”.  For example, if there was a social gathering anywhere, I wanted to fit in as the woman with a “perfect” life for people to look up to. And for this, I was in a constant battle, a constant internal debate struggling to define what exactly my life needed to “look” like.

Fast forward to the big day, January 16th, my baby girl had arrived. It was an easy delivery. At the first glance, I immediately noticed that her eyes were different from her parents: they were tinier, almond shaped; and over all she was smaller than what I had imagined her to be but the baby looked perfectly healthy. The doctor and nurses were looking at each other not saying much. But I didn’t really care much. I immediately fell in love with my baby because after all she was MY little princess. A few hours later, the neonatologist had arrived for the regular new born checkup. The first question he asked me seemed so irrelevant and random: “How old are you?” I replied, “25….?” He gave the baby a good look but as he was checking the baby, I noticed his face went all serious and concerned. I asked him, “Doctor, is everything OK?”. He replied “No, the baby seems to have a chromosomal abnormality. This usually happens when the mother is over 40, don’t know how it happened.” “Wait…what?”

It literally felt like the ceiling had fallen on me. My feet went numb. My world was crushed. “What about the baby I had ‘imagined’ I would have? What about the ‘perfect’ family I was planning to build? What would my family picture look like? What would my life be like? Would I ever be able to smile again?” A million questions went through my mind. My life was never going to be the same, I thought. The first Ayah that went through my mind was, “Do men think they will get away by saying: “We believe,” and will not be tried?” (Qur’an 29:3). “Or do you think that you will enter Paradise while such [trial] has not yet come to you as came to those who passed on before you? They were touched by poverty and hardship and were shaken until [even their] messenger and those who believed with him said,”When is the help of Allah ?” Unquestionably, the help of Allah is near.”[Quran 2:214]

The day Aaishah was born was the day that changed my life forever except that I didn’t
realize then that it was the best day of my life.  It has been more than three years now. Aaishah is a beautiful and vibrant preschooler. She is a blessing like any other child. These past three years have been the most amazing journey I could ever have imagined. They may not have been “perfect” but they were definitely very eye opening and endearing. The journey may not have been smooth but it was not as turbulent as I had imagined it to be either. Yes, Aaishah does have Down Syndrome. Yes, she does have a cognitive disability but that doesn’t mean it’s the ONLY thing that defines her. If Allah has given her a disability in one aspect, I have come to see that He has blessed her with some other amazing abilities in other aspects (which my typical five-year old boy doesn’t exhibit). For example, one of Aaishah’s biggest strengths is her tolerance level and how easy going she is. She is very loving and social. She enjoys her life and loves to dance. Its very easy to make her happy; she just needs a reason to smile! Yes, she may act up at times and be naughty but which child doesn’t? Every child regardless of his/her abilities has his own set of challenges growing up. It just takes different forms in different aspects. Perhaps if Aaishah wasn’t here, I would have never looked at life the way I do now and appreciate the little things that we take for granted otherwise.

The extra time she took to achieve each of her milestones has taught me Sabr (patience) and Shukr (gratitude). My typical older son Abdullah walked at 12 months. I never really celebrated Abdullah’s milestones because I told myself it is just typical. There is nothing extraordinary about it. On the other hand, Aaishah took her first step at 18 months. With intensive therapy each step took so much effort from both Aaishah and her amazing team of therapists. Each and every step was a big celebration. Each word that came out of her mouth was a huge festivity. Little things such as having the ability to walk, the ability to read, the ability to talk are now no more “little”.

With different ongoing therapies, I have come to realize that no blessing of Allah can be taken for granted. I realized how little I acknowledged and appreciated the blessings that Allah had given me. Allah says in the Quran, ‘If you are grateful, I will surely increase you [in favor] [Quran 14:7]  This verse reminds me time and again, that gratitude is a key to Barakah. If we want Allah to increase us in blessings stop being ungrateful and appreciate everything Allah has given us. However, honestly, there are times when I, as a parent, do get worried. My mind does spiral around the infinities of uncertainty. It dwindles to wonder “what is the future of my child? What is going to happen if her parents are not around? Will she be independent?” My mind does worry. My heart does fear as a mother of a child with special needs…. But a verse from the Quran really helps me as Allah says, “And whoever relies upon Allah, then He is sufficient for him.” [Quran 65:3] “Indeed, Allah loves those who rely [upon Him].” [Quran 3:159]

Through my Aaishah, Allah has taught me what exactly is Tawakkul. It’s one thing to
learn the textbook definition of something but it’s another thing to actually “live it” and learn the practical aspect of it. My Aaishah has taught me that in life there is no other option than to trust Allah in His plan and be positive that whatever Allah does is for our best. I have come to realize the meaning of His name “Al-Hakeem” which means the “Most Wise” and realize that no matter how hard life can get there is a hidden wisdom of the All Mighty in everything that happens: some wisdom we can comprehend as time passes and some hidden wisdom will only be known in the Hereafter. I have come to realize that as a parent my only job is to be the best parent to my children that I can: give them all my love, strive hard to make them independent and teach them good Akhlaaq (good character and manners) but the rest lies in the hands of Allah.

Allah is our provider, He is our Creator. If He has created my child, HE will take care of her. HE will provide for her as He is Ar-Razzaaq (the ultimate provider). So, who am I to doubt the infinite wisdom of the Creator whose wisdom our finite minds cannot even fathom? This reminds of the Hadeeth Qudsi, “I am to my servant the way he thinks of me” [Sahih Bukhari, vol 9, #596]  This Hadeeth teaches us that if we trust Allah and are positive and hopeful in Allah’s mercy and hikmah we will get back the same in return. This is true not just for children with special needs but for ALL of us! We are ALL in need of Allah’s help regardless of our abilities or disabilities. No matter how intelligent we think we are, no matter how rich in worldly possessions we are, no matter what our status in societal terms is, we are all humble before our Lord. Without HIM we are nothing!

Through Aaishah I have also learned to truly respect people regardless of their abilitiess or disabilities. Aaishah’s amazing team of therapists has opened my eyes to a new world: a world of compassion and unconditional love. People who choose to work with individuals with special needs are some of the most amazing and kind people; I have learnt so much from them. Even though the initial news of the diagnosis was super hard, the emotional support that I received from my amazing family and in-laws, along with help from Aaishah’s therapists were a great source of comfort and ease. As Allah says in the Quran, “For indeed, with hardship [will be] ease. Indeed with hardship will be ease.” [Quran 94:5-6] I have truly realized how relevant and true each word of Allah is! I have learned to look at the Quran with a new perspective now: the year Aaishah was born was the year of the Quran for me, the year I received my Ijazah in the recitation of the most amazing book in the world! Aaishah has made me realize the true meaning of “success”. Now I don’t equate success to just having a successful career and a Master’s degree. Yes, they are important but they are not what truly defines who we are. True success is what we have truly become as a person, how much Taqwa we have,  what Akhlaaq we have, how much contentment and gratitude we have towards God.

Now my dream towards both my children is to see them grow up to be grateful individuals, to see them be independent, to see them grow up to be good citizens,  to grow up to be good Muslims, good people contributing in whatever way they can towards society around them. It doesn’t have to a big monetary tangible contribution. It could be something as small as a smile or ma hug or a helping hand or kindness or just being a source of happiness towards others. True success is when you come to realize in the Hereafter that your Creator is pleased with you and your efforts have been accepted. True success is when you will be in the companionship of the Most Noble in Jannah. This world is a test. Every difficulty is a test and every blessing is also a test to see which of us will truly remember our Lord and be grateful to Him and trust Him. And no matter how hard this test can get, we need to remind ourselves time and again from the verse in the Quran, “Allah does not burden a soul except [with that within] its capacity” [Quran 2:286]

AlHamdulillah- All praise and gratitude is towards Allah, who gave me Aaishah, my princess who transformed my life for good. My baby who has taught me unconditional love and helped me become a better person and who became a source of me getting closer to my Creator and yours. She may not have been the baby I had imagined to be but she is definitely what Allah wanted her to be: a person who has given us immeasurable happiness and a million reasons to celebrate. In fact, she makes our family picture more complete and more fun. Thank you Allah for giving me Aaishah!

Now I know that the life in this world was never meant to be “perfect” as perfection is stored for us in the Hereafter. Our test is to look beyond the imperfections of this Dunya and strive towards the perfection of the Hereafter. As Allah says in the Quran: “And the Hereafter is better for you than the first [life].” [Quran 93:4]

 

 

 

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