My Warrior Son

I still miss you.

You would have been a year old in 2 months.

You would have been a big brother.

Mummy misses you my Little H.

My dear boy, you’ve made me who I am today. I have said it before, that it was you who gave me strength – then and even now. I could be morose and melancholic like so many other grieving parents, angry and bitter and jaded; but what would that accomplish? I am ok, in the ways that a grieving mother can be. Days where I function perfectly well and days when things just aren’t so good. I reflect back on those precious 83 days I had with you. Some of it I wished I had pushed harder for a chance to carry you and hold you, before the surgeries, before the ECMO, before the intubation. I asked myself that perhaps, that skin contact we should have had would have saved you because all the ‘i love yous’ I’ve whispered couldn’t.

I am trying to live and to move ahead without regret. I am not moving on without you, always ahead with you in my heart and mind. How could I not wake up or go to sleep without you lingering in my mind? All the precious memories I have of you, playing in a never-ending loop. I miss you, beyond words, beyond emotion, beyond tears and action. Every prayer is tinged with doas for you in Jannah. Praying that your great grandparents get to see you and play with you and look after you before I finally take my place with you. Praying for your happiness and for the memories of the hospital and surgeries to be taken away. I know that you don’t feel or remember all of that anymore. I fear though that you never had the chance to feel and hear my heart beating in the last hour of your life. I was selfish, not letting anyone else hold you, but I couldn’t bear to let go of you because I had been waiting all the time for even just one moment to feel you and your weight, your everything, in my arms.

One day. I hope to at least be able to carry your brothers and sisters. One day. I hope to tell them your story. And I hope that one day, when I am gone, that they will continue to visit you (and me) as I have – to keep your grave tidy and replace the old flowers with new.

I miss you my little nom nom. So much. So intensely. And I love you always, with every fibre of my being.

Today was a hard day at work. I almost got an anxiety attack because of my own paranoia and worry.

And then I realise why did I even feel that way? I had no need to. I remembered that earlier this year, we had been through worse. And we got through it. This was nothing. Nothing compared.

And so I took a breath and I thanked Allah for reminding me. To stop picking on the little details. Take a step back. Breathe. Everything that happened, happened for a reason. What we went through with Little H, the ups and downs, they changed something in us. What we gained from it, even as we lost our son, was to persevere and forge through. To be resilient. To not take things too seriously. To not be so hard-up on the unnecessary nitty gritty.

I will remember my son when I feel I am at my lowest. Because at the time when I thought I would be, then, I was at my strongest. And if I could be strong in such a difficult situation, then I can be strong in any situation.

I love you son.

So much.

And I miss you, every day.

But I am also always thankful, everyday, for the brief moments I had with you. For the precious few moments you gave us.

We’ll see you soon in Jannah. I will work hard on it. 

I promise.

It’s been awhile. 

I wear grief like an old sweater. It’s a familiar friend, one who knows and understands the searing pain in my heart and soul. A friend with a lingering touch and smell, one that reappears from time to time to say hello and hug.

Some days, the grief is easier to manage. It doesn’t eat at you as much, it doesn’t swallow you whole and spits you out grasping for air. But some days, it slaps you with the cold harsh reality that the one thing most precious to you is gone. And all the brief memories and fleeting touches you were given, are but sad consolations.

Grief can make your stomach twist and turn. It makes you see the world through a pale haze. Disbelief. Anger. Doubt. Hurt. Pain. Resentment. The worse is when you have to remind yourself that you are better than this, that you are above the negative sentiment of it all. That you cannot allow yourself to succumb to darkness.

Because then, you dishonour the memory of your son.

I won’t lie, it can be so unbelievably hard to just try and think positive. The thought of putting on a smile, fake, is tiresome. Small talk is torturous. Fumbling and struggling through life? Don’t even go there. My hands are trembling even as I’m writing this. Overcome by a sudden wave of sadness and questioning the futility of it all.

He would have been 6 months. Would have started crawling, make bubbly gurgly sounds, trying to put an endless array of things in his mouth. He would have been smiling endlessly just as he would be frowning for no reason. He would be pooping explosively, drooling everywhere; just being generally adorable.

But he is not. And I will only have these fantasies. And I am lying to myself, that it doesn’t pains me, each and everyday, that he is gone.

I ask Allah for strength, to keep me strong, to hold me firm. I pray to Allah with the knowledge that my little boy is in a place, free from tubes and wires and most importantly, pain. I pray to Allah with the knowledge that I will see my son again, even if it takes a lifetime, and he will be waiting for me, with the same amount of eagerness as I have. 

Waiting all my life to see him again.

I intend to do this, to help myself heal and move forward. Get back to this new normal.

Always.

Because I will always love him, always miss him, always pray for him, always everything. 

He will always be my son. Always be my first born. Always be my miracle of life, my lesson on love and strength and the reminder that we are all mortal and we will return to Him, no matter the age and time.

In a religious aspect, I try to believe in this from the Quran:

My faith isn’t always strong. It hasn’t always been so strong. It isn’t as strong as I would like it to be, but we’ve come a long way since Little H was conceived. Prayer had helped. And on those days when I can’t pray, I zikir to try and ease the pain in my heart.

#captureyourgrief2017

When it feels like your life has just mostly gone on hiatus. That everything good is happening to everyone elsenexcept you. 

And you wonder why you’re the only one being left out.

Wish I could say things are looking up. But it seems not. Not right now. Just gotta be patient. As always. And that leaves us with wondering. Again.

Happy, somewhat, for others. Me? Just found out they put down the wrong day when Little H passed. And pretending beyond the walls of my room that I am ok. Because if I ever show a tear-streaked face outside, people are just going to tell me:

They’re not here anymore. You need to move on. Stick to religion. Pray. Read the Quran. You’re supposed to move on. Move on. Move on.

Oh shut up. 

You weren’t the one who lost a child. All your children are alive. You have grand children on the way. 

You have never spent days, weeks, months in the ICU. Listening to every morning consultation, talking to every doctor, asking a million questions, sitting down for hours in a quiet room watching over a little boy who was barely 3 months old.

You weren’t the one who stayed awake days and nights when things got worse. Forced to remain as composed as you could as you watched doctors and nurses move in and out of his room.

You have never held your dying child in your arms, that being the first time you ever got to carry them. You have heard your child crying and wailing whilst all I have is a 5 second clip of him snoring.

You have never buried your child, because it should be them burying you.

So just shut up.

If you cannot be supportive or understanding of my grief and pain, leave me alone. Your silence is more appreciated and welcome than your insensitive platitudes.

My son would have been 4 months old on the 23rd of September. I went to the grave to give him a fresh batch of flowers – white orchids making the shape of a heart and a red carnation middle. 
Because he is a heart warrior, a heart fighter. He fought with everything, he gave his all, and I will forever honour him and be so proud of him.

My emotions are choked, scrambled. I am filled with so many things that my brain has just decided to blank it out. Sometimes I want to try so hard for another and then I question why even bother. What if it all happens again? What if it does and then I just don’t love them as much as I did the first? They tell me nonsense and don’t think that way.

I loved a small dark-haired big-eyed boy who had my penchant for frowning. I loved him even as he was all wired up, with tubes and lines. I loved him even when he was bloated and paralysed. I love him so much more than I love myself. And now I don’t have anywhere for that love to go, and I refuse to shower that love on anyone else.

It’s hard for anyone to understand the swings of grief. I accept that things have happened, I do not deny it. I do not deny that what happened was for the best. I do not deny that he is in a better and happier place now.

But it seems that it is difficult for people to understand that I am sad because I miss him. I do not want him to still be alive and in pain. I understand the rationale and the hadiths about death in my religion. Even though I know I am blessed, but it doesn’t take away the fact that my heart and soul misses him. And that when he left, it has impacted me in more ways imaginable.

One of which is that I felt as if I had no purpose, no meaning. Just another body on this planet waiting for the end. That is a wrong thing to think of, I know. And perhaps in a few days I can come to terms with it and be ok and believe that my purpose may not be as a mother but just as something else.

But right now. No words can comfort or erase or soothe the fact that I feel aimless, purposeless. It seems clearer and more frightening that my little boy is becoming a vague memory to everyone else. I would have loved to share pictures of him online but I know the repercussions, what people would say. I do not want attention but I don’t want everything that has happened to have been forgotten so soon. Those 83 days were precious. Those 83 days were amazing. Rollercoaster emotions, happy highs and terrifying lows. Forever a part of my life. Forever a part of me. I cannot forget a part of me so easily like that.

I know I’m not weak. I know I can get through this. 

Just don’t forget him too soon. When you forget him, you forget me. And I would be then only one, who will then be seen as crazy, to remember that once upon a time in was pregnant, once upon a time I gave birth, once upon a time, for such a short short time, I had a son and I was a mother.

Don’t rob me of that, please.

In the past few days, I visited you three times. I would have gone more, but the two mornings it rained heavily. It was as if you were telling me not to come alone, to come with the rest of the family. 

There were more fresh grave. Your grandfather counted 12. 12 more mummies and daddies who had lost their precious child like we did. 12 more who are probably in the same amount of pain and grief as we were. 

We went yesterday, before returning the car we rented. The one that ferried your grandparents, your uncle and auntie, to see you. I rearranged the flowers and finally read the Yaasin for you. We were sitting at the edge of the plot when we realized there was a fresh one. 

It was your father who noticed the name first. And I couldn’t believe it when I saw. There was another boy, just like you, who came in a month after you in the PICU. He was their first child too. His parents were there in the NICU the night you had to go on ECMO. They had read the page I created for your fundraising. 

We were all praying and hoping that at least their child would survive through everything. We had hoped that the team would be able to help him, save him, learning from everything they had with you. But like you my dear son, Allah too loved him more. And like you my child, he too has been invited back to Allah. 

They are good people, his mum and dad. You met them, the evening before you left us. Now, you both are playing together, happy together, pain-free together. 

I keep listening to the audio clip I have of you when you were sleeping. The only sound I have of you before that was taken away. We never really got the chance to hear you cry, only that one time after you came out. It was the nurses who did, the other parents and babies. I wish I had that. But all I have are the sounds you made, just like me, when you sleep. And endless quiet videos of you and your big curious and yet… Knowing eyes.

I miss you love. I miss you so much. 

I will never forget.

It started the day before national day. His blood pressure and saturation just dropped without warning. He had been sick with pneumonia for a week already and was still looking good despite the infection. And then they switched to HFOV because they thought that it would help open up his left lung which in turn would get him to recover faster.

He was fighting it. They had to put him on Rocuronium, a paralysing medication that left him in deep sleep and no longer wide-eyed and wondering. His condition continued to deteriorate. That morning, all they did was adjust him slightly for his usual x-ray and his stats dropped again. It felt like forever and his spo2 just hovered over the 50 mark. It never got higher. The team was on alert. The pressure in his lung was too high and it caused the blood vessels to get narrowed and blocked. He was getting puffier from all the fluids. It broke me because he changed so quickly from the fair pinkish little baby to this bloated reddish-purplish angel who was fighting so hard to stay with us.

They thought a surgery would help but he was in such an unstable condition that they were worried we’d lose him on the operating table. It was that morning that I knew, what that sick twisty churning feeling in my stomach meant. We cried in our room because we knew, somehow, that he wasn’t going to make it and power through like he did all those scary times before. We cried because we knew we had to let go. We cried because we knew our son wasn’t going to be with us for long.

We cried because we knew we had to say goodbye to the most precious thing in our lives.

To my little boy’s credit, he kept fighting eventhough he was tired. He fought to stay alive so that all the people who lived him and loved us could be there.

I was almost begging for something to be done. My mother was crying as she stood by me. When the doctors told us to spend as much time with him, when the surgeon said to take him off all the medication.

You know what’s the funny thing in all of this? That at the end, it wasn’t his heart that failed him. Pulmonary hypertension combined with the nasty pneumonia. Little H had never disappointed us, when we prayed and begged for his left lung to be ok, he gave us what we wanted – his left lung opened up, but it came with a price. His life. 

Dr Ryan, we had never met him, never spoke to him. The last one to try everything he knew and could. He told us honestly how worried he was. Throughout the day he and the team were permanently stationed outside Little H’s room. Towards the end he brought us aside and asked us what we wanted, he said that Little H is going to pass soon.

I wanted a bed, so that we could lie down beside him on each side. Like how we always wanted to. But there was no time. And so the husband asked for privacy. For the curtains to be drawn, for it to be just us three. No monitors. For our baby to be in my arms, for the first and the last time.

I could not stop the tears. I could not stop the earth from swallowing my heart and my soul. I could not stop the sadness and pain as they came pouring down my face.

The nurses and doctor turned off all the other machines save for his ventilator. They carried him gently and placed him in my arms. For the first time in 83 days since his birth, I finally held my son. My son, the one I carried for 9 months in my womb. Who kicked and punched and made me laugh. Whose eyebrows furrowed like mine. Who had his father’s kind face and intelligent eyes. Who had my stubborn chin. Who was so fair with such beautiful soft and straight semi-brownish hair that all the nurses and doctors loved to stroke and touch. 

My son who fought so hard throughout his battle and finally wanted to rest. In my arms. In our arms. Just the three of us. And so in my arms I kissed him, I told him how much I love him. How sorry I was to put him through this. I told him it’s ok, you can go. We want you to be free, from this pain, from all the fighting. We want you to be happy. I love you I love you I love you. Always.

I don’t know the exact moment when he passed. I had hoped that when he felt my heart beating that another miracle would happen. But we were out of miracles that day, all we had left was this moment of being a family of three,  forever immortalised in our hearts and memories.

My husband told me later that a nurse did come in to tell him that Little H had passed. He was still alive when I held him, and then slowly left – his heartbeat slowing as all the numbers dropped to a single digit and finally, zero. Everything that happened after was a blur. I vaguely remember people coming in, kissing his forehead, hugging me. I could hear crying. But all I could really see and feel was him, my baby. I didn’t want to let him go. I wanted to keep kissing his face, his cheeks, his eyes, his nose, his forehead. The nurses had to take him to remove the tubes, the wires, and to dress him up. They asked if we had any of his clothes. Another piece of my heart shattered, we had all his clothes waiting for him at home. All his gifts, all his toys.

While they cleaned him up, we had to get his death cert settled. At that moment I felt so deeply for my husband. He was the one who had settled Little H’s birth cert, and now he would sign off on his death cert. I know how much my husband, the father of our child, loves our son. All the plans, all the motivating talks or silent moments he had with the little boy,  who listened quietly and just watched him with his daddy’s eyes.

When we returned to the ward, my mother was carrying Little H. Much later she told me that at least she got to look after him for awhile, got to carry him for that moment. She got to sing to him and pray for him with him in her arms, unlike all the other times she had when she visited and he was in bed. 

The last bit was to settle the paperwork at the mortuary. Throughout this, my brother and both brothers-in-law worked together to get things done and to get us out of the hospital as fast as possible. My brother, who was strong and resolute, was the one who arranged for the undertakers to come the following say, to help bathe our son and to conduct the religious rites. He never cried, not until a few days after the burial. 

I carried Little H all the way, I never once stopped looking at him. Never once stopped kissing him. For once it was just me and him, savouring the moment of just having him in my arms even as he got colder and paler.

I was exhausted when we got home and I wanted to sleep beside my baby, the only chance I will ever get. On our bed, dressed in baby clothes from the hospital, he looked so calm and peaceful. It was like he had been sleeping the whole time. He still smelled amazing, that baby smell that I would never be tired of. That I tried to keep preserved by zip locking his hair brush, breathing his stuffed animals in so deep because they were the ones always so close to him.

I don’t know how I survived that night without going insane with grief. Allah gave me a bit of strength to be strong for my son while his body was still with us. He gave my husband the strength to stay awake throughout the night and day to bathe him, to oversee the rites and to be the last and only person to lay him to rest in the earth.

Even as I write this, I am exhausted by the emotions. So many more things I wish I could have done but it all happened so fast. I miss him. I love him. And I slowly begin to accept and understand the reason behind all of this. Would I have wanted my son to still be living but suffering, his chance at normality taken away with each procedure, each surgery? Or that he will remain this pure eternally, gifted with the blessings and richness of jannah? So that one day he will hold our hands and lead us to syurga. 

Allah watched over us and He knew. He loved Little H so much that He didn’t want him and us to bear so much burden and pain. So He invited Little H to come back to Him. To be free, to be happy. 

And that it’s ok, because Little H will see us at the end of days. And we will be a family again. 

Now, instead of lying down all day in bed not being able to move, instead of having so many wires and tubes putting him in pain, Little H gets to run around and be free and most importantly happy. I will remember the feel and weight of him in my hands, and I will do my best to keep living and moving ahead so that when it’s time, it’s not a memory in my arms, but my precious baby. 

Perfect the way he is, just like on the day he came into our lives and changed us forever.