3. Meaningful Mantra

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

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Left out

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.

4 months

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.

When everyone begins to forget

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.

Friends

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. 

Never forgetĀ 

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. 

Making room

A small part of me is relieved. Because there are no more hard, difficult, painful decisions to make anymore. Fewer anxiety attacks brought about by intense worry. Maybe that little kid knew mummy better than herself. I’d still choose you and the worry over emptiness and longing. But I know it isn’t truly emptiness that you left behind. You know I love you so much. You wanted me to make room for Allah and remind me that He loves us the most. And perhaps you went with Him so that I could love you both without neglecting one or the other.

RememberĀ 

I got this picture from a Facebook Group and it summarised how I’ve been feeling. Or how we’ve been feeling. The loss is there. Sometimes so sharp and acute and sometimes, a little numbed. I know people don’t generally want to talk about it, or ask us about it. They mostly manage a how are you doing and then switch over to another topic. I don’t mind but sometimes I want them to ask more. Because I want to relive those memories again. I want to remember my son. I want to talk about my son. 

I don’t wish for anyone to go through what we have. And maybe better that they don’t understand the pain, don’t understand what we went through. 

I don’t know what’s the protocol of going to the grave and visiting. I don’t know if I should go every day or every month or what. The grave is but a marker. My son’s body is there but he isn’t. And it makes me feel lost at times, confused. I keep seeing his face and I look at videos and watch his eyes. Was he trying to tell me something all those times? Was I just blinded by my own hope to see it? 

I miss him.

People say that you’re still young, you can have more kids. First of all, I’m not young. And as I age, it gets harder and more dangerous. Secondly, it takes almost a year to create one, to grow them in your womb. They don’t come out like instant pancakes! Thirdly, I have the sick worry that something similar will happen again. And can I cope with it this time round? How am I expected to think or feel that each time a perfect creation appears but is only given such a short time with me?

You can tell me I shouldn’t think about this. I should leave it up to Allah. And I do. But don’t lie to me that if you were ever placed in my position (and I hope not) that you would not have these thoughts. 

Surreal and not being able to fully accept

The days are surreal still. Some days it’s as if it never happened. None of it. Like someone tore out all the pain we went through and then stuck it to today’s page. Like it’s all brand new. And then on some days, I made reminded so much of what isn’t here anymore. 

I get angry and upset and jealous at other families and the babies and the children and pregnant woman. And I ask why me? Why me? Why us? I know he isn’t here but my heart cannot accept and so the tears keep falling. I see the videos and its almost as if he’s still alive but I touch the scree  and I don’t feel his smooth baby skin or his warmth or the silky smoothness of his hair. 

And I’m broken all over again and I just want this nightmare to end. 

We were prepared to go through all those things. All the procedures and the operations and the calls,  follow ups. 

We were not prepared for death. I cannot say I was ready to let go because I wasn’t. I knew I had to but I didn’t want to. I wanted to wait for him to wake up and reach out for my face with his little fingers. I wanted to nuzzle him forever, smell him forever, hold and hug him forever. So close and so tight as if to make up for those 2 months I spent only being able to stroke his face and head. 

I miss my son. I love my son and I miss him so much. And like how helpless I felt before as I watched him, I feel helpless again now. This time with an even bigger hurt because he is no longer here. 

Sometimes

Sometimes the pain is so sharp that I can’t breathe. Sometimes it’s just a hole, an emptiness that I can’t quite describe. Sometimes I question myself if all the decisions we made were the right one. Should we have said no. Should we have stopped his hurting. Sometimes I wonder if he understood what we said. When we kept telling him we love him. So much. That we wanted, needed him, to be strong and fight. 

I question myself, should I not have pushed him so hard. 

Sometimes I can think of him without crying. Sometimes when I see his photos, my brain blanks for a moment. 

I miss him. And it’s a missing that’s beyond comparison. 

I miss him so much. And sometimes I wake up thinking it’s just a dream, a cruel trick. Oh how that were true.