The twilight months….
The upward spiral of my life with Yusuf finally began after four months which felt like they disappeared somewhere within the twilight zone. I could barely remember much about that time, all that I remembered was tears, darkness, self pity and pain… It was difficult to recollect the missing fragments of time and I guess that I shut it out and stored it far away never wanting to visit with those emotions again….
My hand was quivering and each step before me looked rickety, shaky and unfamiliar to me. It took me a few seconds, sometimes it took more than a few minutes to attempt the step in front of me, but I clutched Yusuf protectively within my embrace just like a lioness protects her young cub. I walked the distance with trepidation and a shiver in each one of my quivering steps. But still I walked, I moved forward, daily…. All praises to Allah…..
Everything about Yusuf was so unfamiliar yet familiar to me. His smile, his smell, his touch, his overwhelming eyes… Its like I knew all of them from having experienced a deja vu. I was constantly floating in the feeling of “have I been here before, it feels so familiar to me“, and I guess that this was Allah’s mercy upon me. Although I forfeited my honor and right of being a mother, Allah still chose me for this role, still He equipped me with all that I needed to resume my role as “mother”….
I thought that I would have to learn how to love my son as he was, as imperfect as he was. I didn’t think that I could or would feel any affection for him, ever!
I was wrong! Yusuf immediately crept into my heart and settled there as if all his life he had waited to return to this (his) home. He stole my heart and seeing to his daily needs became my reason for living. And as I would sit with him, watching him discover the world, discover new things, I would often wonder; “how could you think that you wouldn’t love him, look at him, he’s perfect“….. These are conversations that I had with myself.
I still broke down a lot! Sometimes I broke down as the wave of shame washed over me. I would wonder which mother cannot love her child? How could I want to end his life!!? At other moments I cried out of gratitude… I was grateful to meet Yusuf, I was grateful to be selected as his mother, I was grateful that Allah never left my hand…..
I began counseling to help me cope with the effects of post natal depression and to understand what caring for a child with Down’s Syndrome would entail. I wanted to educate myself, to empower my mind, I wanted to be a pillar of courage, of help and of support to other women like me so that I could spare them the twilight months….
I visited a psychologist and just like all the other steps, I attempted it with trepidation and a quiver. I sat listening to a stranger explain to me that my son may or may not live beyond the age of forty. She flatly said that she could not tell me how long he would live for or what type of future I would have. I looked around the room at the array of accolades that hung on the wall wondering what was I doing there!!!!!
I wanted to get up and leave….
I could not bear to hear her serve me a dismal life sentence…..
But I was stuck…. I could not move……
Her voice was calm… It was an unsettling sort of calm… The calm that made your insides fit and twist in every emotion other than calm!
“Yusuf will always need medical treatment” she said….
She also said that he was prone to many different illnesses, none of which would just go away.
And as I sat there listening to her, my imaginary pillars of strength, courage and hope that had brought me there were trembling and crumbling.
Sadness rised and pooled within my throat unable, unwilling to escape. I remember swallowing hard while breathing deeply,trying to not break apart in front of a total stranger.
But all the while my mind would wander off, all that I could think of was Yusuf… I wondered what was he doing and if he was thinking of me….
As if the rays of different dawns were falling onto me from every side, I understood where I was in life, I understood what the future would bring to my door.
Yusuf will not get married nor will he father any children.
” There is no magic pill that he can pop! No injection, no elixir, no operation, nothing will fix him”, she said….
I was made to see him for what he was, imperfect, flawed, different and of course so very special to me…..
The reality of the future rolled towards me like the sunlight rolls out of the darkened twilight sky. Images of what the future would bring reared their ugly head in my thoughts.
Later that day I allowed myself to break down and to shatter into a million shards’ as I pictured the scenarios that she had earlier painted for me.
The sound of my sobs was likened to the sound of a mirror falling to the ground. The crash, the impact, the sobbing they were all so in sync and with each tear that fell from my eyes, more and more of me shattered.
I guess that this was a process which I had deprived myself of. That of accepting what my son was, allowing the truth to seep in, to marinade there, to release the tears, to shatter, to rebuild myself and then to move forward….
I understand today that there is nothing wrong with the way that Allah creates, there is only something wrong with the way that the world looks at the things that Allah creates, with the way that the world understands and accepts the imperfect things. Allah in all His majesty creates only goodness and perfection even if not to the standard of our idea of what perfection is….
And again I asked myself, and still I wondered; what is perfection!!!!
The question grappled me, it plagued and consumed me as I would stare at the other perfect little beings that Allah had created. I could see that Yusuf was different from those things, from those kids, but he was so perfect to me.
Is perfect an image?
Is it an idea?
Is it a mirage?
Is it a home with a perfect shade of beige paint and white picket fences with neatly trimmed grass that’s just the right shade of green?
Is it having children who look perfect, who excel without effort and perfectly no matter what it may be at?
Or is it having a mind the accepts that life is not perfect, nor will it ever be perfect. Yet within the storm of imperfections do we get to embrace a moment of sheer bliss as my less than perfect yet so perfect Yusuf smiles at me or when he touches my face lovingly.
That to me is perfection….. It is a moment, a feeling, an emotion, fleeting passed me, washing over me, drenching me in more love for my son….
Yusuf’s challenges were unlike anything I had ever experienced before. He needed us to care for him in every way, to see to his every waking and even sleeping need and then some!
He did not crawl or walk when the baby magazine’s said that he should or would. He could not sit when all the other babies at the park were sitting. He did not take kindly to strangers touching him out of curiosity or courtesy more than out of affection. He would throw tantrums that would last for several hours. His needs were at most times draining. He would cry incessantly and I would not know if he was hurt, hungry, angry or just frustrated. I now woke up for him, to see to him, I breathed for him,I lived for him….. And as I would make my way through my day seeing to my Yusuf, seeing him smile, seeing him mess the floor, listening to him try to express what he wanted from me with anticipation and frustration in his tone, I knew that this was how my life would be from now on and for always, Yusuf and I, together and never further than an arms length… The realization did not drain me as I had expected it to, instead I felt that my life had a purpose. Perhaps I was created just for this reason, to be the means to see to another human being, perhaps this was my pathway, my entry to Jannah…. Insha Allah…
I had many moments of difficulties, moments of confusion, moments of such immense joy, peace and pleasure that I could never recapture their emotions with mere words… but none of what life had dealt me so far could prepare me for the new course my life was yet to take…..
I was somewhat content yet restless with where I was. Some days I felt like I was wearing a mask and other days it felt so natural to me to mother my son. I could not picture myself having another child or more children. Farhad and I discussed this and my loving as well as understanding husband once again showered me with unconditional love as he said to me, ” whats to be will be, Allah knows best“.
Considering how long it took me to fall pregnant, I had not expected to have more children. And then as if the rug had been pulled out from under my feet, again, I was three months pregnant in what felt like a blink of an eye…..
I sat staring at my GP’s face as she told me congratulations with a smile. I did not move, I did not blink, I don’t even think that I exhaled! I did nothing but just sit there. My thoughts rolled through the dam walls of my mind and suddenly, I could not breathe!
Yusuf was just over a year old! He would need me to see to his needs for the rest of our lives together. How could I devote myself to him as well as care for another little being! How do I divide myself into half?
There was no other life for me but this life with Yusuf! And the scariest thought, what if this child too had special needs and what if I fell into depression again?
My head felt heavy and I felt anxiety claw into my flesh yet again as the venom of my thoughts seeped into my bones and paralyzed me.
“I’m pregnant?” I asked…
And suddenly all that i saw was black all around me…..
To be continued…..
1. How many of us deprive ourselves of growth, of healing by not allowing ourselves to shatter, to break down, to rebuild ourselves and to accept the circumstances that we find ourselves in?
2. How many of us still look for, still believe in perfection?
3. How many people have taken lessons from stories (such as this one) that had absolutely nothing to do with them?