I remember a year ago, while putting together your memorial video as a way to celebrate your 1st birthday, my heart was still aching and I have somewhat found a way to get my life back together again.
I don’t think I’m back to normal, I have changed, so has your dad. It’s ridiculous to say life is back to normal, because nothing is normal since you passed. You changed us when you were born, and changed us again at your death. Our shattered lives took a long time to figure out this New Normal, and yet when we think we are ok, there will be reminders to suck us back into the black hole of horrors and pain.
I would love to write about the happy things of how we have healed, or that we have gotten over your death, or to list down all the good and positive things that had happened to us since 26 Dec 2010 so that it will be an encouraging thing to anyone feeling depressed and downtrodden.
The truth is, while I’m laughing more, feeling happier, even hopeful especially since you are going to have a younger brother (I’m sure you knew before we did, I reckon the Good Lord must have kept you in the loop), in quieter moments, I am still consumed with a certain amount of guilt and emptiness that comes, I guess, with the fact that you aren’t around.
I don’t think that will ever go away. A part of me doesn’t want it to go away, doesn’t want to let go totally, because I don’t want to forget you.
I can’t just remember the goodness of your birth, and ignore your death. It will be denying your life, your reality, however brief it may be.
I had written about your birth shortly after you were born, and it should be time to write about your death too. I’ve tried to block out that part of your life but it’s just futile.
The funny thing about birthdays is if you think hard about it, there’s really nothing much to celebrate. Happy that the previous year is finally over? Getting older? Moving a step closer to your grave? But of course, we celebrate, the hope of a another year, of blessings and happy things that will come our way. Your big brother is already planning for his 5th birthday, and we wouldn’t want to disappoint him either.
Likewise if you have been around, this year, I wonder if you would finally be given the all clear.
No more additional oxygen via the nasal canula. No more horrid sounding pumping of the O2 concentrator.
That you would have been off the feeding tube for awhile already and could actually taste how yummy chocolate cake would be.
I wouldn’t have to hear any more heart-breaking alarms going off each time your blood-oxygen level went down.
Or to hear your cries when the doctor peel your eyelids apart and insert the metal apparatus onto your eye socket so as to check on your ROP.
There wouldn’t be a need to accompany you into the motion-X Ray room and wait outside while I hear your screams as the docs and nurses insert a longer feeding tube into your small intestine ‘cos it has either come out or you have grown older and required a longer one.
Or when you were home, and whimpered in discomfort and I couldn’t do anything more to make you feel better. And one night, after being woken up repeatedly by you and the incessant alarms, I lost it and actually scolded you while carrying you in my arms. And I felt I was the worst mother in the world, and held you tight and hoped you would not think of me as such.
I still hear those cries… and they still breaks me apart.
My dearest Leia, I still feel I should have done more for you. Before you were born, the doctors did prepare us that the survival rates have improved ‘cos of medical advances but there would be medical problems you would face. And after your birth, we were so optimistic that everything will just be alright. Because you survived and we would just wait till you were stronger, take you home and things will be as it should be.
Even when medical issues came up one after the other, still we were damn sure you would be ok. It would just be a matter of time, we would wait… for you to get well, get better.
Lots of people prayed for you, for us. So did we. I remembered telling God just shortly after giving birth to you, thanking Him for you and that you weren’t a stillborn and that your cries were quite loud and powerful, so those lungs were ok.
Then as your stay progressed on in NICU, I prayed that you would stop losing weight and God answered.
Just when we thought your lungs would be ok, somehow you had an infection and that scared us to bits. But still I prayed and God answered, well, not by taking away the patchy lungs you had, but the infection was treated and you started to gain more weight.
We prayed hard to have you come home as soon as you could and God answered that after 91 days.
But when we took you to see the specialists at KKH and realised your issues were more serious than we originally thought, still we prayed that all these obstacles are necessary for us to overcome so that you would be healthy. And God answered, by helping us to place our trust in these doctors.
I prayed hard while you were in the High-Dependency Ward that the doctors will know what to do to help you, and I would do anything just so that you could be back at home for Christmas. I learnt from the HomeCare nurses on how to use the home medical equipment, how to change your continuous feeds and set up the machine, how to suction your built-up mucus and phlgem (you hated this and so did I, but someone had to do it).
And God answered, you finally came home the week before Christmas and it felt normal again. My family is back together.
I still wonder if I should have checked on you a few more times that day, or perhaps I was getting complacent and felt that everything would be alright. Perhaps I should have actually woke you up that morning instead of letting you sleep, even though I felt it strange you looked a bit too lethargic and listless that day.
The only time when I felt I would lose you was when you were rushed to the Hi-D ward, but when you came out fine, that fear never resurfaced.
Even when you were cold to touch, your milk had leaked out of your tube and I couldn’t wake you up no matter how hard I tried. I still didn’t think I would lose you. I screamed for your dad to come into the room, and he came in carrying your brother and didn’t know what to do, while I kept trying to shake you gently and a little firmer, but still you didn’t respond.
He finally called the ambulance, as I tried to perform CPR on you and when your tongue rolled out and didn’t retract, all that optimism was replaced by a thick fear and dread. I kept doing CPR, amidst the tears and calling your name, because that was the only thing I could do.
The paramedics came and took over, carrying your limp body in his arms while pressing on your chest. But the fear somewhat disappeared and I just felt you would survive yet another hurdle. The ride in the ambulance was a blur, I couldn’t see you because the paramedic’s back was facing me, but I felt you were in good hands. Surely you would be fine… God, you wouldn’t take her away now, would you?
I saw the ER team all assembled at the driveway, and once we alighted, you had already been wheeled into the room. One of the nurses ushered us into the room, and that was when I lost it. I finally cried big time seeing how serious things were becoming.
I remembered the attending doctor who came to update us in the waiting room, that your condition was critical. I asked since your canula was still in place and the oxygen was still flowing, you would still be breathing right, it didn’t affect your brain right? I was searching for some kinda answer on his face, but the good doctor just said, technically it could be but unfortunately they had a hard time getting your blood pressure ‘cos it was too low, and you needed a dose of adrenaline. And that your heartbeat was faint. On hearing that your heart was still beating, I felt optimistic again, and we would just all survive this scare.
And then you left, just as the doctors were getting you ready for ICU.
I miss you everyday, Leia. “I have loved you for a thousand years. I’ll love you for a thousand more.”