foto: Doris Markač

My dear,

Yesterday I listened to a conversation between your older sister and younger brother whilst they were making sandwiches in front of the refrigerator on which you still reign. Your brother said that he would rather be dead instead of you. As you know I often yell at home. However, not this time. I remained silent. After all, each of us mourns differently.

I do have to admit that I did not expect you to leave us before your tenth birthday. Hello?! We planned your 10th birthday together. All of us. Me and grandma Sonja. She was the one that helped us when necessary to hug you, change your diapers and feed you. You made her lough. Occasionally she would also reluctantly admit that you were a little bit to heavy for her back. But who else could have looked after you for a couple of hours or perhaps for a day? You know that made it a lot easier for me. When you were with her, I chased your brother or complained about your teenage sister. We were alone. We were a normal family at which no one stared and your sister didn’t feel uncomfortable by the stares. I knew you understood this. Even more. You didn’t push yourself in the limelight. Even when I was fuming at people who wrongly parked on the parking place for people with disabilities and everybody else felt uncomfortable.
But you know me. I yell and freak out. I chase my kids like an animal. Just like I chased and convinced doctors when I felt they should have done something differently.

Especially during those first days. Thank god we went to Ljubljana where everything was different. Even the air and space I had given you. I wanted you to die and for us to bid farewell. However, you stubbornly wanted to go with me. I would lie saying that I firmly held you in my arms. But we went home. Together. Into the unknown. Despite not having any knowledge, we were stubborn. As only we could have been. I have to say that this often resonated in my head. Your roughness that needed no confirmation to move forward. and your focus that needed no applause. If only you had known how I adored you. Did you feel it? I was in love with you as we were the couple unlike any other. A couple that raged during unbeatable storms in an unknown river-bed. And yes, I was harsh. I was not easy to understand. Yet you were peaceful in my arms.

Many people ask how you left. It is enough for me to say that you flew away. In your own style. And off course without a warning. Suddenly. Decisively. Without any words. As some need to hear how it happened and I do not want them asking the medical staff or look into your medical records I will explain what happened that day:

“I had back pains during those days. I admit that this did not happen often. I asked myself how would I be able to carry you on all those stairs as you had almost 20 kgs. Your father took you to the car that day. We didn’t dance. Your teacher prepared a bath for you. I drove you home. I remember. There was heavy traffic. An old lady’s car broke down in front of us. An older gentleman without a leg and myself tried to push it. It was pathetic. He excused himself because of his leg. And I had a sleeping kid that needed to get home. I apologized to the lady. She understood.

As always, I changed you and prepared you a bath. Oh, how you adored it. I needed to get off your urine-soaked clothes. This is how it was. None of us was to blame. We still wanted you to smell pleasantly. You know this. Well, forgive us. You smelled similarly to your great-grandmother Matilda with whom you got along nicely. But let’s move one.

As I was trying to get you into your seat, you started to bend. You didn’t have an epileptic seizure in years. I yelled at your father to get the meds which off course we didn’t have as they expired. You were half asleep and I took you to the sofa where I held you. I protected you and talked to you. I should have noticed your dilated pupils and shallow breathing. Not much of a healthcare worker, huh? I phoned our friends to the nearest drug store whilst holding you in my arms. Eventually I called the health centre and I realized that I needed to take you to the experts. Because I DID NOT want to lose you. I thought it was just one of the seizures after which you always came back.

Dad took us to the health centre to pick up the referral (let’s leave out the possibility of calling the ambulance as this would take longer and too many important people would have had to leave the fieldwork) as the nurse needed one via phone. And then you were lying on the hospital bed of the Paediatric clinic. You were so cold that I joked if you were skiing. The on-call doctor had a too long private conversation in the doctor’s office. I finally relaxed with the intensive care unit team that knew you. Even more. I knew them myself. As I was heading back home in expectation that as always, I would see you the next morning, they brought you with above normal speed together with your bed to the fourth floor. And by then we started to lose our golden thread. I was told about this by a nurse who was with you and was also a friend of our babysitter, who was the only one that could sleep at our house with the three of you whilst we were away.

During my walk home I picked-up your sister. We took home her painting. The one, for which I said it should remain simply red, but she and your father wanted it to be deeper. Well, what should I have done? Occasionally I know how to listen. As I undressed, we received a call from the Paediatrics for us to come back. I came and the team stood at the door. The doctor said with sad eyes that they had lost you. As I walked to the room, I tried to remined how many minutes you were without oxygen for not to leave any consequences. Perhaps only you knew, how certain I was that you will become alive again. I was certain that at least my warm hands or my tears would revive you. But nothing did. I didn’t know when to call your dad. For all of us your passing was a shocking surprise. You couldn’t have just left. You intended to do this many times but still you stayed. You just can’t!”

How should I have known that you were serious, when you had scared us so many times and at the end you were still here.
I knew you would leave. Yet through all these years I simply forgot. I hugged you and held you in my arms as you were completely cold. For a moment I thought that my body would warm you and revive you as it had for all those years. When we were one.
I wasn’t afraid when I was with you. I was fearless with you. We were the crazy ones that showed people something they didn’t know and weren’t afraid of it any more. We were the ones that pushed through all the hurdles whilst others wagged of their heads. We were unbeatable. Nobody prepared me for a life with you. Yet, we succeeded. We succeeded to remain on an unsteady canoe that sailed on river rapids. We held on and started to enjoy. These were the magical ten years. What an era. A journey that only few have enjoyed as much as they wanted to. But no one told me it would hurt so much when you would leave. This is the solitude, that stares into the emptiness. A pain like no other. An acid that scars a mighty heart. One should have been prepared for you to die. But in reality, one can’t be prepared. You left me. And now I am alone. I cannot say that everything is as it should be, because I am angry in my helplessness. I am angry in the long nights when I would rather pick you up from the bed and hold you in my arms. As always. There is neither a day nor a night without you. There is no joy or happiness without you. There is not me without you at this moment … But I have to be here and persevere. I am here without you. Yet different. There is no cheerfulness nor joy. There is no eternal optimism or happiness like it used to be.

It will come a time when I will be able to thank you for being here and leaving. Today just leave me to stand on remains of your rich heritage. I only wish to hold you for one last time. To spin you under the disco light by the tones of the 80’s music. You would lough and I wouldn’t stop kissing you. For a moment it would seem that the time had stopped and we would blend into a magnificent image of a unity.

Tell me, will this ever be possible again?


foto: Doris Markač




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