Ramadan is the hardest time for me as a bereaved mother, more than any other time. More than their special dates of death anniversaries and birthdates, I don’t think passing time will ever make the difference. Tears continuously flood my eyes unexpectedly at times even when I’m least thinking of them, and then there are those moments when I feel I can’t breathe. 

I am hesitant to share here the most intense moments of my grief, as all my sorrows are only with my Creator, and I hope this post is not taken as a complaint.

For as long as I can remember, going back 25 years, my every ‘ibaadah of Ramadan was with my girls. When the time of Ramadan started, I had to tighten my belt, meaning I  flipped my switch to an extra active mode -going between my roles of a nurse, a cook, and fulfilling my extra spiritual Ramadan duties. 

Two of my kids were born during Ramadan and one was born just before. 

Their younger years were so much fun for me as a new mom; the excitement of teaching them to stand in salah next to me, doing tasbihat holding them in my lap, or finishing up all household chores and doing my prayers while the kids were asleep.

***

Then came the diagnosis. 

My three beautiful daughters -Abeerah, Khansa, and Zahra- were diagnosed one after the other (after growing normally until the age of 4) with a rare genetic disorder called Sanfilippo syndrome (also known as mucopolysaccharidosis type III or MPS-III for short). Children with MPS  are missing one specific enzyme the body needs to break down molecules called glycosaminoglycans, which as a result accumulates and causes damage to the cells of every organ in their central nervous system -including the brain-, resulting in them slowly losing all their abilities and then eventually death.

We were told that they would not make it to age 13 but Allah knew better, and gave us extra years with them. Alhamdulillah 

All three have recently returned back to our Lord. 

***

Ramadans immediately post-diagnosis heralded for me an extremely hyper and sleep-deprived stage where life was always on a fast track. My biggest concern was their safety and well-being, even building a safe room which became our main area for everything. I would start my salah on the prayer rug facing the qibla, but ended up facing God-knows-where, or even on the floor as one of the children had either pulled the rug away or were climbing on me during sujoods, or with them all gathered on the rug front of me with their toys and leaving no room for me to prostrate. In those years, I mastered the skill of praying with the loudest noises or learned to ignore Barney playing in the background – learning that it’s okay to make up the extra sajda or even rakah, in case I had missed the count. 

As they grew older and become very sick, it became so much harder. I remember the struggle of trying my best to reap the most benefit of Ramadan as possible while keeping up the most ‘normal’ time for the rest of the family. I had to juggle between making suhoor, ‘ibadah, and iftar. Including the iftars for family or friends invited over for big iftar gatherings at our house, suhoor for the staying guests, Quran study, taraweeh prayers – all this along with taking care of three very sick girls hooked onto many running machines, while also keeping an extra eye needed for an Autistic boy on the constant move and who (still) hardly ever sleeps, continuously messing something somewhere or trying to break the locks to escape.

I remember 

• How many times I had to turn the stove off from cooking suhoor to run and suction one choking girl; clearing the air airway and then getting right back to cooking. A simple fried egg sometimes took me three stages to finish.
• How many miles I had to walk or run back and forth from the kitchen to the girls’ bedroom during suhoor or iftar prep, either checking on them, monitoring oxygen levels, or changing their sides as they would develop pressure sores quick.
• How many times someone handed me a date to open my fast while I was dealing with a seizure or caring for one after a grand mal seizure. 
• How many times someone had to shout out louder through the noise of 3 loud machines for me to please drink a sip of water as the time suhoor was ending. 
• How many salat (prayers) I had to break to attend to one of their choking incidents, oxygen drops, or when their oxygen tanks needed changing.
• How many times I didn’t even remember that I hadn’t had my dinner, or those uncountable times getting up from the table in the middle of a meal to take care of sick children, and then ending up losing my appetite. 

Every moment -Yes, EVERY SINGLE MOMENT- of Ramadan reminds me of them. 

Every juzz I open in my mushaf to read has some sort of memory left there – either in the form of a torn corner of the page (or even an entire page), or the many marks or folded corners on almost every page that reminds me of why I had to do that then.  

Even the Fridays of Ramadan, especially the last Friday (jummah tul widah) would remind me of how we used to make it so special; dressing up the girls in new outfits (hand sewn by me) and listening to Surah Kahf together by our favorite reciters.

The struggle and anxiousness of making just one night’s taraweeh in the masjid from an entire Ramadan (after the difficult search of finding the right babysitter), felt like found gold.

Such beautiful times…. 

Now I can make an entire fried egg in one shot. I can read my entire salah (prayers) without needing to break many times, and now my prayer rug stays in place (although Ammar still climbs on my back, not realizing how heavy he is now).

Ramadan is the hardest time for me in those memories because:

• I miss that sweetness of the closeness of Allah through those struggles
• I miss that joy and sakoon feeling that comes with the presence of a house full of angels 
• I miss that pouring of blessings all around us especially in my time and in rizq 
• I miss that peace in my heart that I felt in those overwhelming days
• I miss that delight in all my broken worship hoping to find the even the tiniest pleasure of Almighty.
• I miss that pleasure even in my sleepless nights/days and how I never felt tired
• I miss that struggle when you are up trying to catch Laylat ul Qadr on those odd nights, but end up cleaning vomit and poop. 
• I miss that height of satisfaction from those last days and in dua’s

There is no sweetness of imaan (faith) like that in your pleasure of worship amidst all of your trials. 

Yes, I am grieving hard for missing all of those beautiful blessings that have now gone along with my girls. I know they are in a better place now free of all suffering, and we are content with the will of Allah ; looking forward to the day we meet again. But it doesn’t mean they are not missed here.

Our Prophet Muhammad ﷺ would say: 

إنَّا للـهِ وإنَّا إلَيْهِ رَاجِعُونَ، اللَّهُمَّ أجُرْنِي فِي مُصِيْبَتي، وأخْلِفْ لِي خَيْراً مِنْهَا

“We belong to Allah and to Him we shall return. O Allah! Compensate me in my affliction, recompense my loss and give me something better in exchange for it.” Ameen

May we all be strengthened with the understanding that being blessed does not always mean that we live without all the disappointments and difficulties of life. Sometimes those difficulties are your biggest blessings.

Related:

– When Children Die: On Tragedy, and What is Reported about the Death of Believing Children – MuslimMatters.org

– The Forgotten Sunnah Of Raising Stepchildren: Reflections On The Death Of My Stepson – MuslimMatters.org