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. 

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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. 

Vision

In all the times that I envisioned my future, I never thought that I would be burying my child. It still feels surreal. 

Sometimes I catch myself thinking that I need to go into the ward and check on him. I miss those days when he was awake and just observing the room around him quietly. His eyes darting around and maybe… It was the malaikat who was playing with him and keeping him company. 

I miss those moments when we would try to give him the pacifier and he would fight, using his gums to stop it from entering his mouth. But once it was, he sucked on it with so much gusto and it always made me laugh and melt. Those moments when his eyes would cross when he was looking at his tube and we would stroke his forehead gently to refocus them. Those moments when he waved his arms, covered in the small white towels meant to keep him warm. When we peeked at his fingers and toes and asked the nurses if they could help trim it so he wouldn’t scratch himself. 

Even in such a short span of time, Little H gave us so many memories. His milestones were notike other babies, but they were special and showed us what a truly strong brave and courageous fighter he was. In two months he had grown, his face changed and we got to see what a truly handsome boy our son was. His straight hair, the nice eyebrows, his big shiny eyes, his playful little mouth and that chin. That’s my chin right there. 

I’m so bersyukur that when we buried him, the weather was perfect. It had rained and so it was cooling. There were no giant puddles, it wasn’t muddy. The clouds gave him and us shade. Calm and peaceful, just what he wanted. 

Oh Allah, keep my our son safe in Your arms and grace. 

And Little H, please don’t forget us ok? We will join you soon. We’ll be a family again. 

I love you with all my heart. 

Sayang H. 

Closure 

The day after we buried him, we went back to the hospital. Our things were still at the Ronald Mcdonald house. We needed to pack up and in a way, we needed our closure. 

We were talking to the other family whose son was in the room next to Little H. We shared Monday’s events, it helped us with our grief. And then another parent told me someone was looking for us in the ward. We were still at the pantry drinking milo and talking when one of the nurses and the two admin ladies came in. They found out we were back and they wanted to see us. Hugs and tears. Each time they told us how strong we were throughout Little H’s journey. 

Are you proud of us love? 

We took long walks, passing by corridors and places we frequented in the two months we stayed. The memories it brought back were bittersweet. We didn’t care if strangers saw us with tears streaming down our faces. It was our moment. 

We went to the ward as well. That night when Little H passed on, most of the nurses who had looked after him were on leave. They were shocked when they returned. Seeing us opened up the flood gates. They needed closure too. 

Dear nurses, I said this to you and I will say it again:

Thank you. You are an amazing group of ladies. What you did for Little H, I can never thank you enough. You showered him with so much love, so much care. You treated him more than as a patient, you treated him like the little boy that he is; talking to him, singing to him, making him smile, teasing him. On top of all the things you did as part of your job. You gave him so much heart, made him so comfortable that it wasn’t a stranger who was tending to him, but someone warm and familiar. 

You were so understanding and patient with us. When we had so many questions and kept asking the same things over and over. You treated us as individuals, as real people with feelings instead of just clients. You reassured us, sometimes updating us even before we ask. Some of you comforted me in those dark times when daddy was away at work, letting me unload my worries, sadness and fear. 

When you cried, you showed me how special my little boy was. How he had touched your heart because of his innocence and charm. You showed me that you too are human beneath the uniform. And that made me love you all so much. 

You did your duty and you did it perfectly. I can never thank you enough. You cleaned my child when I couldn’t, changed his diapers because I wasn’t allowed to, fed him milk when I couldn’t. At times I was so jealous because you were more of a mother than I was. But that jealousy was shortlived because I saw how much you truly loved and cared for him and it made me happy knowing that Little H still experienced physical touches of love. 

Little H brought us all together. I am still missing out on two nurses who looked after him. I hope to be able to see them soon and thank them again. 

Thank you son. We are beginning to see and understanding truly just what a special boy you are and how you have brought your daddy and mummy closer to one another and to Allah swt. 

I love you son. I love you. I hope you’re happy playing soccer with your friends and the angels in heaven. 

Good days

There was a good period of time when Little H was in such a good condition. He looked so good. He wasn’t bloated. He wasn’t purplish. He was awake, his eyes were so clear. 

He was so handsome. 

He smiled. He smelled amazing. He could wear the neonatal hospital kimono. He had proper meat on his bones, no wrinkled dangling skin. 

He was healthy. As healthy as he could ever be, even with a collapsed left lung. 

I was so in love with him. So was his father. His nurses loved him. Everyone loved him. 

In fact, even till now, we all still do. 

I miss you love. I’m ok, don’t worry. Daddy’s ok. We are still grieving, because it’s all too fresh. It felt like yesterday that I was still telling you about my day at work. Updating you on the weather. Telling you to be strong, to fight on. 

Telling you I love you I love you I love you. 

I miss you. 

We miss you so much. 

I woke up this morning and it dawned on me so painfully, there is no baby waiting for me in Ward 46 Bed 3. No blinds to bring up, no classical music to switch to. No updates of the weather. 

You left too soon my love. My heart aches. 

I cherish the feel of you in my arms. No matter how brief. I wish I could have held on longer. I wish that by some miracle you’d get better when you felt my heart beating so close. 

I miss you. 

Redha

I wish I knew what to say. There’s so much going on in my head and I thought by writing it down that somehow, I can gain clarity. Turns out you don’t need to be a writer to have writer’s block. 

OK let’s try. 

Dear self, 

Allah swt gave you the opportunity to be a parent. Even if it was for a short while, you are a mother. You gave birth to an amazing Warrior son. One who fought to survive in the womb, whose battle still continues on to this day. 

Do not blame yourself for what had happened. Your son would not have wanted you to. You have done what you could, given the lack of power and control you had over the situation. You have prayed for him, sung to him, told him stories of the Prophets and those of your own creation, stood by him, stroked his head and combed his hair, given him secret kisses on his forehead and cheek. You have stood silently during doctor discussions and meetings trying to make sense of what is happening. You have remained calm even as they deliver not so good news. 

You still love your son with every fibre of your being. 

You are an amazing mother. You are strong even in the face of such a challenge. Even when you can feel your heart breaking, your faith shaking. 

You are your son’s mother. 

The story hasn’t ended. Fight on, fight strong. Redha to Allah’s will. This is one of the many tests that He has given you. He has a plan for you. What will be, will be. InsyaAllah everything will be alright, regardless of the situation. InsyaAllah you will be strong. 

I have faith in you Allah. I believe in You and Your will. 

I redha. 

I redha. 

I redha. 

Choices

How does any parent make the choice for their child to live?

If you saw your child lying motionless on the bed, tubes and wires in and out of his body; it makes you question are you doing the right thing? You want them to live, to experience life but at what cost? At what price? Do you go for the surgery that’s high risk but with the chance to live or at least prolong his life? Or do you make that hard choice that no one wants to make? 

To let go. 

I can’t. I’m so confused now. I want to do what’s best for him. But is it really the best? I want him to live, to grow, to go to school, to get married, to have his own children. To outlive me. 

He can’t tell me how he feels now. He can’t tell me what he wants. I can only base it off what I feel. Am I selfish in wanting him to hold on? Can’t I be allowed to? 

I want to keep fighting. I will keep fighting. Whatever chance there is, whatever way there is, I will go through it. We will go through it. 

You are my Warrior Son. You are my fighter. 

You’re not fighting this alone my son. I’m fighting this with you. 

Anything 

I would give anything to have you in my arms. To track your milestones and progress like any other mother of a newborn. I missed out on being able to carry you and feel your weight gain and your body grow day by day. I can only watch you as you lie on the bed and check beneath the blankets if you’ve put on weight. At least now there’s more meat on your bones and not just wrinkled skin dangling. It pains me to see you being put on the paralysis medication because if you’re awake, you’ll start fighting with the ventilator. I can understand the doctor’s dilemma in wanting you awake to switch you over to conventional but then their worry when your oxygen level drops so drastically. Your left lung is open now thanks to the HFOV but now we need to see if it’ll remain open when you go back to conventional. You haven’t pooped and there’s poor perfusion around the area of your belly. 

It just sucks when we’ve seen you progress so far the past few weeks only to have this stupid infection bring us so many steps back. 

I don’t just want you stable. I want you to recover. To heal. I want you to be off the ett. To be able to hear your cries and snores again. To see you feed through a bottle and not through a tube. 

I have failed so much as your mother even if other people tell me it’s not my fault, nothing I could have done, nothing that I could have prevented. You came out looking so perfect into this world. No one would suspect that you were so ill inside. 

I’m sorry baby. I’m sorry you have to go through this. I’m so sorry you haven’t felt our love through our hugs. I’m sorry that your first few months of exploring the world is limited to the four walls of your ward and the machines that surround you. That you have yet to feel the warmth of the sun on your skin and the feel of the wind against your cheeks. 

I swear when you are healed, when we can finally leave this place with you in our arms, that I will fill your young days with bright and new things. With amazing experiences and emotions. And your cries will be the most beautiful sound I will ever hear, your smile the most beautiful expression I’ve ever seen. 

I love you. This journey is long and it is hard. But I still love you so much. From that first moment I heard your heart beat till now. You are so precious to me. I love you. And when we come home, I will make sure you feel it through my hugs and voice and warmth every second of every day for the rest of our lives. 

Dreams are wishes your heart makes

This was some time back but I had a dream. In that dream I was in the high dependency ward and there was this baby in front of me on the bed. He was a big baby and he was round and I vaguely remember someone telling me to carry him. 

I felt so awkward, like I forgot how to carry babies. And I felt so scared, so worried. But it dawned on me that this could be, or is, Little H. That he had grown to a good healthy size. And that finally, finally after all this time, I could finally carry him. 

I woke up tearing a little. I was so happy. I don’t know how to explain that joy, that happiness. It was as if that process, that transition to being a mother was finally complete. 

Although Little H is still wired up and in his own bed, I knew that the day will come when he can be in my arms. 

I had a really good day, at work and back in the hospital. I never had that dream again, but I can remember ever so faintly, how it felt to hold my dream baby.