Round Eight – Meadows of tomorrow

 “It was so unimaginably beautiful,” Kate whispered to us. Late in the evening we were standing on the corridor. She lowered her voice not to wake up kids sleeping in nearby rooms. “One moment I was walking down the stairs to the kitchen, I fell on the floor and next thing I see was this remarkable meadow. I was not traveling through any tunnel, nor light just a blink of an eye…”

“I see you already packed,” Captain Wild entered the room with papers in her hand.

“Yes, can’t wait to go back home,” Mag replied.

“Congratulations, you have finished first stage of the training. We will still need to run the full scan to see how much of the uniqueness we manage to keep and how much we lost due to drugs side effects.” Captain Wild paused for a second, looked at Szymek playing Hot Wheels in his bed and said with slightly lowered the voice, “Now, that you managed to go through the whole 8 runes without any serious issues, I can tell you. There was a high chance of Szymek flying to heaven in the first three months. We hoped that due decreased immunity Szymek would catch an infection, which he would not be able to fight off and automatically made the cut for the fly. Unfortunately, none of that happen and you passed to the next stage. “

“We are also happy that he did not catch anything,” I said with a little sarcasm.

“Regarding the next stage, surgery, please confirm if you would like to have it done in our premises or somewhere else as we need to make sure all formalities are done in time.”

“Ok, we will inform Captain when we come back for the tests,” Mag replied.

Captain Wild left our room and we started to head back home. With a relief in our hearts, finally after such an intensive past few days of not leaving the Center we have a break.

“…meadow was full of flowers, and the grass was so intensively green. I did not see any colors like that on earth. What we have here looks so pale, dull, lifeless while there it was so much richer, so much livelier. It is hard to explain. I laid on the grass and I felt so good. I felt loved, I felt the way, I have never experienced before. And I heard somewhere in the back of my head my parents screaming to me – Kate come back, come back to us – and believe me, I loved them with all my heart, but I could not go back to them, I did not want to leave that place…”

And again, same road back home, same corners, which we knew by heart, same stop light, no surprises. Luckily Szymek was feeling much better and we did not need to stop urgently due to him vomiting on the way. Felt good enough that when we were passing our well-known bakery he asked for his standard order.

“Old roll, small pizza and croissant.”

Not sure, where did he got this old roll thing, but order was placed and we needed to stop to buy what he asked for. Stopped and buy it as this was one of the few chances he will have an appetite to eat it. Once done, we could go back on the road.

“…and the whole meadow was covered with white light, it was not bright, more like a milky light. Rays of God’s love. And there was no time there, I felt like time was irrelevant, like I was there always, like I had finally wakened up from the dream. Dream, which was my previous life, dream that was finally over and now I could start to live again…”

“Who is there?” Well known voice of aunt Monic asked the question from house intercom.

„Simon” Replied eagerly as he could not wait to see his aunt again. She came to visit him, as this was her first cousin, son of older sister, he was also her whole world. “Kiko!” Szymon screamed with joy seeing her opening the front door.

“Look what aunt has brought to you, new box of blocks to play with.” Blocks, Hot Wheels and trains were his top toys. “Let me help you, said Monic and they both sat on the rag and start playing.

We are finally back home. Back to the place where we could again, for at least short while, pretend to be a normal, average family. Family, which eat breakfast together, go to church on Sunday, have some friends over. Remind ourselves how it was before the training. Yet, still with the thought in mind, that there is no sense to plan for the future. We lived like there was not tomorrow.  And we did things that normally you would not do, but the thought the soon we might not have a chance to do it again we took full advantage of them. One of it was three of us sleeping in one bed. It started with a fear that something may happen to Szymek, while he will be in his room sleeping, and ended with us needing to be close to him. Those were moments I would not exchange for anything. I cherished those moment deeply in my heart to remember them always.

“…and when I felt so blissfully, laying there on the soft grass a creature approached me.  It was full of light, I could not see his face, nor body as he was shining too brightly. Only his whole silhouette, with light passing through. Then he said to me…”

“You, need to go back”

“I don’t want to,” I replied “I feel so good here. I don’t want to leave this place”

“You need to go back to your parents,” he insisted.

“I love them so much, but I want to stay here…”

“You will come back here, but not now. Now you need to go back”

“…and this is when I woke up in my house, surrounded by my parents.” Kate paused for a second. ” I was so angry at them, furious that they brought me back to this horrible place. I rush to my room, shut the door and did not talk to them for couple of days.  Time went by and I forgot about this story. What has happened to me when I was a child, but for some reason I felt inside that I need to share it with you. I felt in my heart that you need to hear this story…”

Those few days home ran fast, too fast. Szymon was feeling much better, looking healthier, giving us hope for a better tomorrow. It also gave me a chance to play with him more. Assembling some wooden train tracks for his choo choo train, playing Hot Wheels, where he was saying which car is fast and which not, doing what other fathers do with their sons. The small difference between us and any other father was time, more lack of it. I knew things can not wait, if I wish to do them with my son I need to do them now, otherwise I might never have a chance.

“Wake up, honey we need to pack for the facility,” I tried to wake up Mag.

She looked at me and said with worried voice, “I had a dream.”

„What kind of a dream,” I’ve asked.

„I saw Szymon and Misia, our best friend’s daughter, dancing together and having fun on the meadow…”

 „Well, maybe they will listen to our prays and both will be healthy. Miracle will finally happen,” I replied trying to make her feel better.

“No, those meadows looked strange…they were not on earth,” She replied with tears in her eyes.

End of stage one.

Why so serious

No other place can give you such a rollercoaster of emotions. No other place will drag you through terrifying fear, depressing sense of guilt, tears of sorrow to tears of joy and laughter caused by spark of hope. From happiness filling out your heart, as all those positive test results makes you see things more optimistically. To indifference, caused by lack of strength due to constant duties you need to fulfill when being in the facility. And back to sadness, because of this little demonic whisper telling you how unrealistic is to finish this training with Szymon coming back to normal life. Silenced by his smile and joy when playing toys with me.

And on this path of peaks and valleys to sustain sanity you develop, consciously or not, certain type of defense mechanisms. You start to have this strange sense of humor, black, sarcastic humor, which in most cases helps you to fight off the depression.

It was very disturbing for me when for the first time I have faced parents in the common kitchen area laughing, having fun, while I could not feel anything else besides sadness and powerlessness.  It was such a contrast to my emotions, that I have start to wonder. “What the hack is wrong with those people?!? Their child is about to leave, fly to heaven, and instead of sorrow I see joy on their faces?” I could understand Corporals and Captains having fun at work. One liked the job, other needed to cope somehow with stress. But parents?

Soon, I’ve realized, that there is no other way but to let it all go, trust God and just see where he leads you. Time help me also with it. Once we got a bit more familiar with all the procedures. Facility stopped being unknown, horrific place to us. And we heard from Captains, that it is not that quick and certain, that our son will fly to heaven. We start to have more and more those moments when smile returned to our faces. And enjoyed the time we had we Szymek as much as we could.

People who we started to meet in the CSD also helped us forget for a second where we were and what we were going through.

„Oh shit! I wet my bed!” Mark stood up quickly seeing a stain on his bed. “Neah, can’t be” He looked at his dry trousers, making him even more puzzled on what has happened during the night.

“What the hack has happen?” He nervously started to check himself to see why his bed is wet while the clothing does not show any sight of him having a bad night. The mixture of slight embarrassment, discomfort and puzzlement on what could potentially happen.

Mag seeing Mark trying to figure out what has happened at night could not help laughing.

“Oh, just face it. You peed in a bed!” She smirked at him.

This did not help, as Mark started to be even more embarrassed. At this point he was sure, that this was not a case, but could not find a reason for his bed to be wet.

“Shit! Drip leaked.” He shouted and felt a relief in his voice, as it just proved it was not him.

This did not last long, as now he started to worry why this happened and if Bubcia will not need again the meds.

Mark called the corporal to come and fix the issue. In the meantime, Ann, his wife came after a night spent home, to take care of Bubcia.

“Good morning Mrs. Ann. Coming to change your husband?” Corporal welcomed Ann.

“Yes, I leave him for one day and we have an accident.” Ann responded to Corporal, at the same time teasing Mark a bit.

“You have a nice-looking sister.” Corporal continued while fixing Bubcia’s drip.

“Sister?” Ann asked confused as she did not have any sister. At least not to her knowledge.

“Yes, she was here yesterday in the evening, when I was starting my shift. I saw her leaving the room.”

“A, thank you, it was me…with make up!” Ann responded with a smile and slight confusion, as she never would assume that dressing up and putting make up on can change her looks so much.

Ann and Mark were this breath of fresh air much needed in those stuffy rooms. First people, we share the room with, who brought with them, this very needed here, sense of humor. With slight distance to reality and a bit of sarcasm, it helped to loosen up dense atmosphere. They were the ones who helped us cross the bridge to the other side, to join those parents who digested the fact that for next couple of months they will need to be here and started to find some positives in that situation. And this helped a lot, fact that Mag could take her mind of the training, Szymon uniqueness and talk about other, non-related topics, help her not to collapse. From clothes, shoes, wine, travelling and books to just making fun of situations we were struggling with caused that all those demons that were hunting us for past few weeks were not that scary any more.

Round Six – High hopes

„This is unacceptable!!!” Captain Blind entered our room and tossed the recent test results on Szymon’s bed. “We put so much effort in making sure your Son will make an early cut! We have listed him into European Space program, supported with Neupogen, in between chemotherapy injections, to ensure proper tumor growth, and all for nothing!! Instead of growing his tumor shrank. Now it’s almost half of the size it was when you were listed. Marrow is clean and bones are showing much lower presence of cancer cells…”

“Yell, scream… spill all that anger on me. The second you leave the room those words will bring me to tears… but for the first time in the long time those will not be tears of sadness, those will be tears of joy…” I looked at her trying note all what was she saying but my mind suddenly went somewhere else. To the place where I wanted to be for a past few weeks. I heard her voice but second she told me the good news, rest was not important.

“…this puts us back in the whole training program. If this will be his way of reacting to the training I am not sure if he will make the flight at all!!! Do you hear me!?! There is a risk he will be cut of the program!” Captain Blind stop for a second to catch a breath. “It doesn’t make sense anymore. I had such high hopes in you and you ruined it all.” With much calmer voice, hearing here ambitions just collapsed. “I need a break… long break. I am going for an annual leave.” She paused for a second with her thoughts wondering off to some other place. “Your test results are not showing any risk of sudden change. You can go home for couple of days. We will inform you who will take your son when you will be back. Thank you! And have a nice trip home!” She left the room.

Mag and I looked at each other and fall into our arms. We waited so long to hear something positive, to have some proof that our prayers are being heard and it finally came. Our hearts finally felt a relief. Huge burden was taken from our shoulders and tears, which fall on our cheeks, were not coming from sadness but from happiness.

“We are going home!” Szymek shouted and energetically started to pack his things. He looked so adorable, bustling round, lifting his hands up and down, showing how much he is busy with packing.

“Yes, we are going home!” We replied looking at him with all the love we had in us.

“And Happy Birthday, Happy Birthday and aphooo”. Szymek looked at us smiling.

 “Yes! And birthday cake!” Mag replied with a smile. “It is our new tradition, to have birthday cake each time we leave the facility! And blowing up candles”. She lifted him up and I finished picking up our things, so we could head to the car.

We walked the corridor to the elevator and suddenly saw this place in much more cheerful colors. Warmer, sunnier tones, feeling that not only terrible thing can be encountered here.

We left for home, having Captain Blind’s words in our hearts. We left for home much lighter, much younger, and full of hope. Hope, which for the first time, was something more than just our wishful thinking. Hope giving us first signs, that it is possible for Szymek to be cut from the program due to lack of any signs of cancer in his body.

Close to our home we spotted Granny, Bunia – Szymek greatest companion, walking back home from grocery store. As we stopped to ask her if she would like to ride with us those couple of meters back home, it was good reason for Szymek to get anxious and get out of his seat. It was also a good reason for him to ask if he can fulfill his new passion, which was driving a car while sitting on my laps. I took him on my knees and we slowly drove those few meters to our driveway. And as much as I tried to forget the nightmare he was going through, pretend for a second that we are just a normal, typical family, as much as I loved seeing him having a time of his life, turning the wheel left and right, as much as I tried to take the most from this very moment, I could not quiet this one horrific thought, which hunted me in past few weeks. The thought telling me, that in a year or so what currently brings me so much joy and happiness, what is so much important in my life – time spend with my son, in few months’ time may just be another memory of him cherished in my heart. Memory treasured so deeply and constantly return too, as this is the only thing I have of him. The only thing I was left with from the day he flew to heaven.

“Why are you crying?” Mag saw my tears and asked.

“I am stilling memories. Trying to store them deep in my heart.  If we will not succeed those will be only thing I will have left of him…”. I replied.

Her tears came without asking for permission…

We have entered the house, decorated with balloons. Soon cake with lit candle was waiting for Szymek to blow it. And for the first time with joy in our voices we sang birthday song.

 “Happy birthday! Happy birthday!” Szymek tried to sing with us.

”Dear who?” We asked.

“Shiimek!” he replied with a big smile.

Smile hidden deep in my heart and warming me up during cold winter nights.

The sound of distal air

“Hush! Let the music play. Just close your eyes and pretend that this sound is something else. Let the violins, trumpets, cellos and clarinets lull him to sleep. Please, allow it, just for a second, to make this world perfect again, make this world more beautiful than it really is. Please be quiet, don’t say a word, let me submerge into the music of beeping pumps and pretend it is something else…”

From day one, when you walk on the 7th floor’s corridors, you are overwhelmed with all different sounds. From children’s laughter, caused by them playing on the corridor, Captain’s consulting their cadets among each other, Corporals teasing themselves, to loosen up dense atmosphere caused by stressful work, to less pleasant sounds coming from the treatment rooms, where children, who needs to have a new needle inserted to their port, are crying, screaming, asking to make it stop. And from time to time you can hear sobbing parent, well hidden in the corner so that his child will not see him having a break down. All of that gave a unique master piece, a symphony of sorrow. When I sometimes sat outside of Szymek room, to rest a bit, and closed my eyes I felt like it was penetrating me up to my bones.

On top of that, there were those beeping pumps, standing in all the rooms. Those pumps, to which most of the cadets were connect, to take their meds. And even though they all looked the same each beep was a special one. Each beep was associated with a child, your child, therefore you listen to it, like it would be his or her heart beat. Reacted to any abnormal behavior. Fear caused by the fact that pump might malfunction was high, therefore each time you saw an error you ran to a corporal ensuring nothing wrong is happening, nothing which would harm your little one.

From the start, you are instructed what to do, when the pump is jammed. “Close the clip, mute the error beep and ask for our assistance.” Corporal said, while showing how the pump works. “Most common error is caused by either pump having a small amount of air in the tube or the meds are over. In both cases, as I said, key is to close the clip, so that blood will not float back to the tube, and ask for assistance. Otherwise we will need to clean the tube and it is not that easy.”

“What?! She is talking about the air in the tube with such a calm voice?!” I though. “They teach you in school, that air injected into your veins will kill you and she is saying like it was nothing?!”

We were freaking out each time we saw “Distal air error” text on our pump. Closing the clip immediately and almost running to the corporal saying, that something wrong is with our pump. And could not understand why they are taking this so peacefully, something even with a bit of the smile.

“No problem Mr. W. Let me just finish distributing the meds and I will come to your room.” Corporal responded with warmth and smile on her facing. It shocked me a bit that she is not seeing that as potential life threat, but just a normal, nothing to worry, error, and will come in few minutes. So, I just turned around and went back to the room.

After few weeks, we realized that it is so commonly occurring thing, not causing anything bad, that finally understood why corporals do not react with panic when we report this to them.

Unfortunately, there is one sound that makes Captains and Corporals run. I saw it twice, both cases pressed by accident. Frist time by Szymek playing with the buttons on the wall, and second me, when I leaned against the wall – life threat Alarm. It was then, when I saw them coming to the room, at least three people ran. Hoping to see him flying, hoping to help him on the way. What was a disappointment on their faces, when I told them it was just a false alarm. An accidental push, which we promised not to do again…and we kept our promise.

“Hush! It’s night again. Lights are dimmed and little ones are asleep. I can quietly walk the corridors to hear it heartbeat. Its music full of pings and beeps, distal error sounds, combine with parent’s snoring. Music no one would want to hear but me. As this it is free of cries and pain..sleep little ones tomorrow comes another hateful day.”

The nightmare of letting go

“I will walk you through the path of fear and sorrow, holding you by your hand. I will gradually prepare you for what is inevitable, so when the day will come, your heart will stay calm, as you will watch him received the greatest gift one could get – eternal life.”

“Amm! Amm!” One of the worst things we had to cope with was a sound of Szymek begging for food and us saying “no” as he needed to be on an empty stomach.

“Amm! Amm!” From asking, to begging, to angry yelling, and finally ending with despair. “Amm! Amm!”

Seeing him falling on the bed with eyes closed, as he has no more strength to keep them open, emotions aroused in us. Emotions, you try to control, to have your mind clear. The anger mixed with helplessness, pushing you to your limits, as you would do all, just to end your child suffering. At the end, you know all you can do is just wait and watch. Wait for hours, as we needed to refrain from feeding him from midnight the previous day, to sometimes even 2 p.m. Each testing day the que of cadets waiting for their turn was long and not much we could do to speed up the process.

The reason for all that suffering was a fact, that cadets could not move during the tests, not to distort the results. Therefore those, who were too young to understand it, like Szymek, were put under sedation. And for an anesthesia to work properly, he could not eat nor drink eight hours before the test. Since nobody knew exactly what time the test will be conduct, we need to be on this horrible standby mode until Captain’s performing the test called us in. For us there was nothing worse than telling Szymon, that he can not take any food or drink. Telling our two-year-old child, who suffered enough already, that we can not do anything about his hunger or thirst.

“Ammm. Ammm.” This time with much weaker voice and tears in his eyes, while he was trying to point to the cupboard standing next to his bed, where normally he could find a sandwich, pretzel, or boxed juice. Now all was hidden from him, not torture him with the sight of the food.

“Just few more minutes. Soon we will go for a quick test and then there will be amm.” Mag tried to calm him down, which in most of the cases just made him even more angry.

“Szymek, your turn” Said the corporal entering the room. “As always please take a blanket with you, as it can be cold in the corridors.” Mag took Szymek from the bed, as he did not like to travel in it. And we walked to the elevator pushing his bed along the way.

Road to the testing room begins with a labyrinth. Leaving the elevator, we need to cross almost whole basement, constantly making right or left turns, passing by doors to either technical rooms or, lost in the depth of the basement, Captain’s clinics. Once, one of the corporal admitted to us, that after two years of working here, she still, from time to time, gets lost in this little maze. The final turn and we are at the straight, long corridor where at the end, on its left, there is glass door leading to the testing area.

Szymek never liked going through this corridor, especially when he needed to travel is his facility bed. Due to lose tiles, the beating wheels were making him nervous and he preferred to pass it in Mag’s arms where he felt safe. The look of this place was also not helping. Although on the left side there was a wall full of windows, giving a bit of natural light inside, old paint on the walls, dirty windows, and those loose tiles, were making an impression like we were in b-class horror movie.

The testing area was divided into two sections, waiting room – well known to many parents, and two cabins with the testing equipment. When we arrived there, we needed to wait for few minutes, for the previous test to be over and then they called us in.

The testing cabin is a huge room, with lots of equipment. Funny how all this new, high tech equipment was kept in the old, not renewed for years, building. They kept low temperatures inside, so that once everything will be turned on, the heat will not get to unpleasant levels. We laid Szymon on the big bed, and while holding his hand to keep give him comfort, prepared ourselves for the worse.

“Mrs. W we are ready to start the sedation. We will start with a small douse to make him sleepy and then once he will shut his eyes inject the rest. He should be sleeping for next 30 to 40 minutes, while we conduct the test.” When Captain finished explaining us shortly the procedure they started to inject the meds into his veins.

The nightmare of letting go, preparing you to your worse fear. Allowing you to get use to the thought of him flying to heaven one day. I saw it only once and this was already an image that hunted me for long, but Mag was expose constantly to it. From day one of our presence in the facility, she had to see how he passes away. And it’s not looking the same to just falling asleep, not with little scared child.

This one time, when I was present during the sedation, he was holding Mag hand, calling her constantly to make sure that she will not leave him. Looking with his scared eyes and hoping that she will end this. Take him far away from this horrible place and will not allow for any test to be performed.

“Mum! Mum!” Szymek was trying to call her when it happened. He started to lose his voice, it sounded like his lungs would fill up with water. Sound that was giving an impression, that he was drowning. Like he could not catch a breath. “Muuummm! MMMMMmmmm…”

He started to mumble, slowly closed the eye,  and soon silence is the only thing you could hear from him. Firm shake became loose, as his body begins to be flaccid. Our hearts started to pound and fear paralyzed the body. Is this it? Has he flown to heaven? We were nervously looking for any sight of life. His hands were still warm, and soon we could see chest moving. He still breaths! What is so obvious to a side observer, for us, for some reason was covered with dark cloth. We knew, that he was just asleep, but for those few seconds, those few seconds, which lasted a life time, we wanted to scream, yell for help, as it looks like we just lost him. We lost our beloved child.

For those few seconds, you can not force yourself to think rationally, you don’t think at all. Just allow panic to take over whole your body. As to all, after a couple of sedation, Mag slowly got used it. The routine and knowledge what to expect next, help her to cope with it somehow. But fear never went fully away. It was just hiding behind the glass door and waited for a good occasion to come back.

“We are good to go, you can release his head and hand and proceed to the waiting room, we start the test soon.” Few words coming from anesthesiologist, reassuring us that all went fine and Szymek just fallen into deep sleep. They hooked Szymon to respirator, to assist him during the test to hold his breath for couple of seconds. This was also part of the procedure. This was the image you see when you leave the room.

“I lead you through the dark times. Guide you, so you will not get lost on the way. As you are blind now, but someday I will show you the plan, I will make you see.”

The doors opened and captain came out of the room. “We are done. See, nothing to worry about.” Said a Captain with a bit of a smile on her face. “Please stay here for couple of minutes until he fully wakes up.”

So innocent and vulnerable sleeping on his bed, like all those things that just happened were just a bad dream…just a bad dream…from which you can not wake up.

“AMMMMMM! AMMMMMM!”

Celebrities are also humans

“You are all equal in my eyes, you are all special in my heart, as each one of you is unique in its shape and form and I will treat you all the same. Giving and taking back what is the most precious to you, life, and no one can change that.”

„Did you see it?” One of the mothers stopped me on the corridor and whispered, not to be heard by others.

 “What?” I asked with slight disorientation in my voice.

 “In one of the rooms lays an actor’s child”. She continues with discretion in her voice.

“Who?” Now I have asked with a bit of curiosity.

“Not sure if you know them, they played in one of the TV series. Nevertheless, they have their own private room, not like the others. And he is always walking with a cap on, not to be recognized. Like people would not know that it is him.”

I went back to our room and started to get course, nervous and at the end even jealous. After a while I was not proud off all those emotion but they were too strong for me to battle from the start. Questions roaming in my mind. “Who are they? Can I spot them? Can I touch them? Can I? Can I?” Or even worse. “So, there are equal and more equal people… we need to be in the room with two or three other children, while they have their own room.”

Luckily, I shook off from all those feelings and realized, that being here is no blessing.  No matter how famous you are, how rich, it will not save your child. May give you a bit more chances and comfort going through this nightmare, but that is it.

I watched them for few days, just to see how they cope with the whole situation. And it was then, when I started to feel sorry for them. It was then, when I realized, that they are not really in better situation from us. Fact, that they were constantly being watched was giving them one more stress to battle with. Stress which already you have too much to deal with. I saw people looking at her, when she was walking to the kitchen, to make a meal for her son. I saw how people gaze at her, when she was asking for new bedsheets as her son, same as any other child, vomited and she needed to change them. Just by herself, with no help from any servants. I saw him walking on the corridor with cap on, hoping that nobody will spot him, take a picture to sell to the newspaper. Or be harassed by paparazzi trying hunting for cheap sensation. I saw desperation in their eyes, knowing what is at the end of this path. And it was then, when I felt good to be anonymous. Where I can have a dreadful day, even cry and nobody cares, nobody judges me, nobody outside my close family notice it. I can hide in the shadows and no one will come and hunt me with the light. While each of their steps, actions, moments were at the spotlight. I can not image what additional pressure they felt, what burden they needed to carry, and all just because they were famous. I no longer felt bad for having to share a room with others, and thanks to that, we met wonderful people, had a chance to talk to each other, cheer each other up. While they were left just for themselves, alone in that room, as no one dared to talk to them.

Later in the week I tried to make an eye contact with them, just to share a smile. Just to show them that people here are swimming on the same boat. Wish them well, but they avoided any type of interaction besides, please and thank you. And still, there was no situation, where you could feel, that they think of themselves as someone better.

After a while, I was told what it means to have a single room, just for yourself. It is not that you are famous, but a bit more special. Special like everybody else might be some day. Special due to your child soon flight to heaven. And they give you a comfort of spending those few days, that you have left, alone. Give you slight feeling of intimacy, they can provide. Without anybody looking at you, anybody talking to you. Just the closest family, loved ones. This was the day I said to myself that I never want to be that special parent. To have a room just for my family. And it was the time when I prayed for them, so God will give them strength to pass through this miserable moment.

Round Five – Routine

Rapid Coject – cisplatin [C], vincristine [O], carboplatin [J], etoposide [E], and cyclophosphamide [C] – code name we heard constantly for past 5 rounds. While the intention is to quickly attack the enemy, I sometimes wonder if it’s not just a lame joke, which somebody played on us. Hiding under complicated acronym the real meaning, which is nothing more than just – “You will get rapidly bold to impersonate, Lieutenant Theo Kojak. Our role model from the 80s TV series”.  All delivered in eight short, 10 days, but exhausting rounds – A, B, C, B, A, B, C, B.  At the beginning we had our fears, but also high hopes that it will get easier further down the line, while the truth is quite opposite.

Round five, back again to dose A. We knew more less what to expect, since we already went through all the stages and side effects of all those chemo injections. This help us to calm down a bit and slowly get used to our new home, new life. To things, which were terrifying at the beginning, now seen from a bit of a distance as they were becoming our daily routines.

“Hello Mrs. W, how was the night?” Mag wake up to a pleasant voice of the corporal. “Can I have last night fluid balance?”

Mag half-conscious picked up a notebook from the windowsill. It was 5:45 in the morning. “400ml drank and 200ml peed. And he wet the bed in the night.”

“Thank you” Corporal replied and left the room.

 Mag closed her eyes again. Those were these few more minutes of sleep everybody tried to grasp to have a little more rest.

Balance of fluids

From day one, with first dose of chemo injected to your child’s body, you need to keep track of all the fluid that are going in and out. In our case, as Szymek was still a baby that was using diapers, we need to bring from home small kitchen weight and each time he drank anything or peed into the diaper, write down the amount in the notebook. Keep the books like a good accountant. Additionally, any vomiting and diarrhea, which happen often during the injections, were noted down. All to control Szymek’s kidneys and digestive system. Every 6 hours we have a visit from a corporal, who takes down our balance and later reports to our leading captain. In case of any anomalies, which sometimes happened to Szymek too, certain meds are implemented.

“Szymek just vomited again and I did not manage to catch all of it.” Mag welcomed me with words I always hated to hear. “Can you please bring new bed sheets?”

It was devastating, seeing his ghostly pale skin and lack of strength to keep his eyes open. Without saying much, I turned around and went to the small storage room located in the middle of the corridor for fresh bed sheets. Turned the key, left in the lock to allow parents pick fresh bed sheets once the Sergeants are done with their shifts, and looked for fresh covers.  Pillow covers top shelf, children size, quilt and bed sheet in the middle laying right next to each other. There were days when children size was all out and I had to take adult size just to have clean one. Parents knew this room very well, I would say too well.

“Here, I will change it.” I said to Mag coming back to the room. “I will give you Szymek, so to make it quick”. I have picked him up from the bed and placed on Mag’s chest. She was sitting next to his bed on her camp-bed, exhausted to the limits one can take.

“I could not sleep at night, worried that while turning he will wrap the cord around him causing the needle to come out.” Mag read at the beginning of our training program, that it rarely happens causing chemo burns, which are very painful for a child. She tried to minimize Szymon’s suffering as much as possible therefore each time the injections were happening she was in the standby mode ensuring that in case something happens she will intervene immediately.

Those were times when I had to do best not to make any eye contact, especially with Szymek, so they will not see me crying.  I bit my lips, to cause some pain in me, just to take my mind off it.

 “I need to fall asleep for a while, can you please take care of him?” Mag asked when I was putting Szymek back to bed.

“Yes. Rest, I will keep quiet. “

 „BREEEEAAAAKKFAAAST!!!!” Sergeant’s scream spread out thought the corridor walls informing everyone that breakfast awaits in the common kitchen for cadets to pick up.

Art of feeding

From early days, when we slowly started to introduce other foods into Szymon’s diet beside breast milk, we made sure what he eats is healthy. We knew how much food can have impact on your well-being. We were buying ecological vegetables and fruits, straight from the village, and try to avoid anything that had too much of preservatives. Water instead of sweet drinks. In general, tried to protect him as much as we could to ensure we support his healthy growth.

When we entered the 7th floor for the first time, and went to the dining area, we were genuinely shocked. We knew how important is to properly nourish your kinds during the training to give him all the necessary vitamins, so that he can fight back himself the cancer. We knew that low fat diets and no sugar is a key to sabotage the mission. Instead when you looked around most of the plates had French fries, hot dogs, sandwiches with Nutella, sweet yogurt and desert on it. All full of nasty preservatives.

“What ta hack is happening here?” Mag whispered to me. „Do they know how much they are harming those kids by giving them this type of food?”

“Maybe this is what they need to eat during the flight and they are trying to adopt them as early as they could?” I was also confused by what I was seeing.

Soon we realized it’s not their will but reality, which forces those parents to give their loved ones this kind of food. Seeing how dramatically cadets are losing weight, to be as light as possible for the flight, you don’t even think about healthy anymore. You just give them whatever they willing to put in their mouth, just to have something in, hoping he will digest at least part of it, before it will come back. Even Captains were telling parents. “Your child has high potential, soon he will finish the program and fly away. It would be barbaric to take away from him the pleasure of eating junk food, or with all the other suffering he takes forcing him to eat healthy.” And soon we began our battle too. 

Coming back to the routine. When you enter the program, Sergeant, responsible for the nourishment, conducts a survey with you. It is to know if your child needs any special diet, is allergic to anything. She emphasizes the importance of proper feeding, giving you an impression that food here is top level. Soon you realize that this was just a good marketing.

Every morning, round 8 a.m. breakfast is distributed. Plates are nicely laid on the shelf right next to the entrance. Each containing 2-3 slices of bread and cheaply looking sausages, accompanied with small dice of butter. Honestly, I often thought prisoners get better meals then cadets in the facility. For sure tastier and much healthier. And biggest irony of it are candy bars as part of dessert, full of sugar, and given to trainees with cancer. So, when Sergeant called, for most parents it’s just a sign, reminder, that it is time to go to the kitchen and from plastic containers, their brought from home, pick up something eatable for their children. It is common practice for parents to bring their own food to the facility, prepared either by them or grandparents. Once you enter the common kitchen/dining room area right next to it there is a small room, full of those storage containers, where parents prepare these meals.

Once the meal is ready, sandwiches for the breakfast, something more exquisite for lunch, art of feeding begins. Almost all the cadets, during the training, suffer from lack of appetite. Chemo make the food taste like cardboard, plus constant nausea and vomiting is not really helping. Limited resources, you have in CSD, is not helping also to feed your kid properly. From time to time you can see a parent running around the whole facility, asking others if they have certain food, for which their child asked, knowing that if he will manage to get it, there is a chance his kid will eat it.

„Did he eat anything?” I asked Mag when she woke up after a while.

“I tried. No chance. You know, that we need to wait for the injections to finish and antiemetics to start to work.” Mag replied. “He asked for a soup couple of times, but when I came back after heating it up, he just turned his head and said no.”

We tried our best but as we were moving further into the program his appetite was diminishing, slightly coming back once the injections were over, but still far from what he could eat before the program.

Captain’s audit

Round 10 a.m. everyday there was a small Captains checkup round where cadets, or in case of small children, parents were asked how was the night and what is general cadet’s state. Twice a week there was a general round lead by Major, who was having an eye on all the cadets to ensure nothing is happening without her approval. After a while we just waited for it to be over as we finally could start the day. In case of any questions we just went afterwards to our leading captain.

“As we agreed, not matter what are the results you will be able to go home to celebrate properly you 2nd birthday.” Captain Blind welcomed us two days after the chemo injection was done.

“Blood results are stable and not showing any signs of Szymek being ready for the flight anytime soon, so we don’t need you here. Just remember, same as last time, to come each day here for Neupogen shot, we will try again to stimulate those cancer cells to growth faster. Side effects as you know, growth of leucocytes, but let’s hope this will not happen this time”. Relief came, as we knew home is where Szymek feels much better, starts to eat and to rally. For Szymek, as he was already feeling much better, this was a cue to eagerly start packing. “I’m going home!” he stated with confidence and passion in his voice.

“Yes, take care Szymek, and happy birthday!” Captain responded with a smile and left the room. Soon after, with Szymek’s adorable “Bye!” shouted to corporals siting in the central counter, we were heading back home.

Injections

Next day, when most people were starting their lunch, I packed my family into the car and drove to CSD for the shot. Szymek after few corners knew where he was going, and became gloomy.

“We are just going for a short while and coming back home.” Mag tried to cheer him up. “Will you choose a price afterwards?”

Each corporal, to easy up the suffering, had a box with small prizes. After each procedure, child could choose one to cheer him up. Szymek also liked that and after a while he was saying. “Prize! Prize!” There was no claim in his voice, more of reassurance, that since he took the shot without crying much, he can take the prize now.

We put analgesic ointment 15 minutes before on his port to ensure needle will no causes any pain. And head to the room where the corporal from daily center were doing all the procedures. Once the shot was done smile on Szymek’s face was back.

“It did not hurt! It did not hurt! Mommy, it’s over!” He was laughing through tears and I just couldn’t help it, I needed to bite my lips again. The pain was helping me withhold from crying. On the way back, he was full of joy, as we kept our promise, that it will just be a minute and we are going back home. Szymek is unbelievably peaceful through all time. I often cried seeing, what he needs to go though, and I knew well, that he shows me how the real man should take it. This two-year-old boy showed me, grown man, that you may have a bad moment, vomit, etc. but once that is over, smile should be back on your face. No reason to cry, no reason to feel blue. Life is beautiful, life is full of love and why should we not be happy in it.

Routine

Vomiting, dizziness, weakness and powerlessness. Counting all the fluid, ensuring meds are fine, ensuring needle will not pop out, changing the bed sheets, changing diapers, changing the wet and dirty clothes, heat the food, force to drink, force to eat and Neupogen shots for desert. Another test, another needle into his body, sedation, nerve racking waiting for the him to be back, waking up from it and smile is back on his face. This child is blessing from God. His happiness and love is the only reason why we are still alive…please let it last.

Saint’s parade

“I saw him sometimes at night standing right next to Szymon’s bed. He often stroked his head spreading comfort and easing the pain. He never looked at me, as I was not the one for whom he came, but I was always glad that he cares for him, giving the warms and relief, which I could not give…”

First you seek help among the living, from captains to anybody who, without extorting money, is willing to support you. Soon you realize, that nothing what you encounter on your path to full recovery goes without permission from He, who is not bonded by our reality. Bonded by rules, you are restricted with, to have an illusion of stable, predictable nearby future. In short, superpowers, which people don’t have not to cause even more chaos in this world. You start to read about miracles, which are happening all over the world, people who should be long dead in accordance to our medical knowledge, but are still alive. And it gets you thinking. “What can I do, how can I help myself in experiencing God’s mercy on my soul? To whom should I pray to get proper intercession of saints? To be heard.”

You start to look through those stories and try to find which of those saints had the most of those miracles happening, which had the biggest God’s grace and cured people from dread diseases. You look for patterns, which link all those miracles, and hope that if you do the same God’s mercy will come down on you. Quickly you know, on the path of being called saint, you need to be first proclaimed blessed by church. And the whole beatification process needs prove of miracles. This got me thinking, I admit it could be seen as naive thinking, but you will try everything, so I thought maybe if I pray to one of them, he will have the proof of being saint by performing a miracle on my son.

„Alright! This is my final offer! I know you need this as much as I need it. I know you need this for a different reason to mine, but I know it lays in our mutual interests to make sure it happens.” He paused for a second and then rose his finger to the air. “One miracle! One small, or maybe for some of you big, miracle, and we are good. I need it for Szymon to stay on earth and you need proof of your holiness. We all know that without it nobody will believe that you are saint, and we know only saints gets the best seats there. This is my final offer, take it or leave it. Calling once! Calling Twice! Sold! “

Act I

Blessed Martyrs of Peru

Curtains

They were one of those we decided to turn into. It was one of those situation, one could call coincidence, but those who believe would see God’s finger pushing certain people on your path. Soon after we were listed, to our room in the facility, entered a couple with little girl. And with only few words exchanged, we realized that they came from the same city as my wife, and know same people from one of the prayers group my in-laws were going to.  And we did not need to wait long, when one of those people, from that pray group, said that there is no coincidence in life. And since we are both on the same path we should pray to two Polish Franciscan priests who were killed in Peru in recent times. They were proclaimed blessed by Pope Francis, and if God’s will is to make them saints, they need more miracles. I personally was not too convinced about this idea, so soon has forgotten of their existence.

Time passed and we started to have more and more opportunities to go outside the facility. We used those breaks in the training to travel a bit, close to our home, to escape from the city and sight-see close by towns. We also started to visit nearby sanctuaries to pray for God’s mercy. There was one not far from our home, that for some reason we preferred most. We heard about couple of strange stories that happen there, people got cured from disease when praying to Holy Mary for Her intercession. Church was beautifully, with huge figure of Mary in the center, right behind the altar. You could sense that there is something special there. It was the same place where saint Maximilian Kolbe was living before he was sent to Nazi camps and died giving his life for other man, who was sentenced to death. We thought that it will be an excellent idea if we ask those monks to conduct a mass to cure Szymon. Place where you could order a mass was just next to the church. There was a small booth with priest siting inside.

“Wouldn’t you like to have a yearly mass?” He asked.

“I am not sure if we have enough money for that.” We replied we a bit of hesitation in our voice.

 “Money is the last thing you should worry about.” He replied and asked. “What is your child’s name?”

„Szymon. Please pray for his health, and help in sabotaging his training.”

 Priest stopped writing for a second, looked up and ask us. “What is he training for?”

„He has a large tumor on his adrenal gland, making him unique and qualifying for a space program where they trained children to fly to heaven.”

Priest paused again for a second and grabbed from his pocketed small, foiled picture and handed to us. Out of the whole pantheon of saints he gave as picture with relics of Blessed Martyrs of Peru and said. “Please take it, these are third degree relics of two blessed Polish priests who were killed in Peru. You have huge drama in your family therefore please pray to them and maybe they can help you on your way.”

Tears came to our eyes, from shock and emotions. It was unexpected, very touching gesture, and clear sign from God that we should, at least, try to pray for his mercy with intercession of those two priests.

All we could say was “Thank you.” We turn around and started to cry like little children.

End of Act I

Curtains

My car my confessional

 

“Drop after drop falls on my cheek

is it rain or tears?

I will hide it in my small mystery

I will hide my big misery”

Night again. The stars entered the sky and the moon leisurely is making the scene. The breath of fresh air away from corridors filled with the smell of chemo penetrating my nostrils. At times, it’s making me feel like I am the one taking the meds by inhaling it. I exit the facility and head towards a parking lot. Each step away from that miserable place puts me at peace, at the same time each step away from them, knowing that I had to leave Szymon and Mag there, puts my heart at sorrow. This constant conflict tearing me internally apart.

Few more steps, parking lot, during the day fully filled with cars, now empty with only few cars left, and among those few awaits my best friend – my car. One who stands there patiently, no matter if it’s hot sunny day, which heats up its black paint to the temperatures making the car untouchable or frosty winter day covering the car with snow, so you can barely recognize it among the others. My companion on the way home…

 “If you would have had ears to listen, eyes to see, and mouth to tell me what to do… Well, maybe you do, but I can not hear you because it is me that is constantly talking.”

I heard once that some people believe that cars, as many other objects, have souls. They listen to us, react to our emotions, words, and if you will be mean, it will break on you in least expected, least favorable moment. I do not fully cope with this idea, but still there are times where I joke and talk to my car like it would have ears to listen and mind to decide. In current state, this is the best place for me to release all the tension. Let my emotions go. Allow those words laying deep inside of me to come out, and tiers to fall, well hidden behind the rainy windshield. This is one of those places where I felt save to show my weakness.

Door shut, engine started and the journey began. I said goodbye to the security guide on the way out of the parking lot, and left for home. There are nights when even he gives up and goes to sleep leaving the barrier open, so no one will wake him up when leaving so late. I love road back home, especially at night, when there are not many cars, and once you pass few streets, you enter quite long drive through the woods. Driving in the winter, when trees are covered with snow make this passage even more breathtaking. Or in the autumn when the road is hidden in the fog and I am passing by construction cars, working on the side. Mist make them looked like alien invasion seen on films.

“Dad, I know you can hear me although I can not hear you, see you. Please give me just one little sign that you are with us on this path. Please show me something, which will bring peace to my heart. Something, which will reassure me, that no matter what happens it is your will and nobody else’s. As I know you love us and want what is best for us, but please, I beg you, give me a sign making me certain, that it is not my delusion but your love spread to us.”

Those few minutes that I have in my car when traveling back home gives me a chance to pray, talk to God, ask this reoccurring question “WHY???”, or just say all those things I could not say in front of Szymon. It gives me a chance to cry out all the sadness as I don’t want to show him my powerlessness, which constantly hunted me. Those few minutes spend in the car gives me a chance to make all those little plans of what to do next, as I know that planning for more than a month would be just stupid. And sometimes I could just stay silent and listen to the music, just for couple of minutes, not to think of anything. Just look at the road and take my mind of all the problems I have, we have. I know that it was hardly possible to do but at least I try.

I love road back home, these are those few minutes where I can recharge my batteries for the next day, bring back smile on my face and pretend, or maybe believe, that all is and all will be good. That there is nothing to worry because all those horrifying stories, told about the others flying to heaven, doesn’t have to come true in our case.

“You will not hear me. You will not feel me, but you will know that I am close to you.”

Tarantino’s Chapel

“The path of the righteous man is beset on all sides by the iniquities of the selfish and the tyranny of evil men. Blessed is he, who in the name of charity and good will, shepherds the weak through the valley of darkness, for he is truly his brother’s keeper and the finder of lost children. And I will strike down upon thee with great vengeance and furious anger those who would attempt to poison and destroy my brothers. And you will know my name is the Lord when I lay my vengeance upon thee.”

Once you pass the main entrance of Center of Space Diagnostics, little to the side, there is a room adopted from an office space into a little chapel. During the day, it is open for everyone, and in the evening you can pray through the metal bars, allowing you to see what is inside.  I saw quite often people going there to have their one to one session with God. Praying, begging, promising, arguing, thanking or just sitting there in silence, waiting for some kind of sing of His presence. You may assume, that this is typical Roman Catholic chapel. Modest in its decoration, giving the sensation of peacefulness and calmness. Once you walk inside, you are up for quite a surprise, as I was, when I saw it for the first time.

“Come in stranger to my little boutique! You can find here all you need. Just tell me what’s your worry and I am sure I can find a remedy for it.”

It was at the beginning of our stay in CSD when I found this room. I looked for a bit of peace, for a place where I can reset my mind. I hoped to find there seclusion, as this is what you would expect from place like this. Little that I have knew I was going to have a bit of surprise, for sure this was not the place I expected to find. When I crossed the doorstep I was hit, overwhelmed by all the things, that I have encountered inside.  I sat on the bench and looked around, everywhere my eyes went I saw icons, paintings, figures, drawings or small statues. You name it, you got it!

“Today we have a special offer, say two Holy Mary’s in front of Lady of Fatima, and you can be sure she will listen only to you!”

There are few different paintings of Jesus – big cross hanging right above the alter, Jesus from Manopello or St. Faustina’s Jesus, couple of versions St. Mary – of Fatima, of Czestochowa, bunch of Saints, and even pictures of holy places. And if those were not enough I saw children’s drawings, either thanking or asking for blessing, rosaries and all size of medallions hanging on the walls, relics of saints standing in couple of places. And all brought just one question to my mind. “Where the hack am I? I wanted to have some peace and here is noisier than on bazaar”

“Skip the line to the Jesus, I trust you for only 10$. Please go the left from the main alter and there you will find him. Tell him you are coming from me and for sure He will help you.”

If you feel that you are not worthy of praying directly to Jesus or Mary, you can choose one of the many Saints, whose either relics, painting or pictures are present in the chapel. St. Padre Pio relics are on the right just next to his painting hanging on the wall. If you prefer more recent Saint, one who will better understand problems of the modern world – no problem! John Paul II relics are on the left, accompanied by his portrait and pictures of him. Just ask and he will pray on your behalf. If you prefer more figures over the crosses, or painting over the drawings there are couple of standing here and there. One would ask, “So, what is the issue?” For me, personally, is space. If I would be sitting in large cathedral, I would not even have noticed the amount, but in this small room, where you can hardly fit 50 people, you just don’t have air to breath. And instead of having a spiritual experience, you feel, a bit like you are in the middle of some cheesy Tarantino movie. With more focusing on human rather than God’s aspect of prayer.

“Bring on the actors!”

Leading role is held by priest, close to his 60s, not too tall not too fat, I would say nothing unusual. Until…. until he starts to speak. He has a deep, calm voice, likes to pause from time to time and emphasize words, which are being spoken. At first when I heard him I wasn’t sure if he is serious or not. If this is real Mass or just theatrical play. I saw and heard many priests but this one was too much for me. The culmination of his acting skills can be seen during the Eucharist. “Take this, all of You, and drink from it,“ he paused for a second, then rose his voice ”for this is the chalice of my blood, the blood of new and eternal covenant,” lowered his voiced and started to heavy breathe ”which will be poured out for you and for many for the forgiveness of sins”. He rose the chalice above his head, and it looked like he would dip the bottom of the cross hanging high before him it in and started to speak loud again. “Do this in memory of Me.” Exhaled and lower the chalice. And for couple of more minutes my mind instead of being focus on the pray was wondering, “Did he really dip the cross in the wine or it only looked like that.”

When he kneeled, and bowed his head – people responded, “We proclaim your death, O Lord, and profess your Resurrection until you come again…” And in that response, you could hear our second actor. Mid-age lady, sitting to the right. After participating in couple of masses I saw that this is her spot. She helps to clean the chapel daily and takes care of the decorations. You can see that this means a lot to her, and without judging, you can read from her face, that she had different turns in life, not all good, but now she found salvation in God, and puts exceptional care in being as best as she can in her relation with Him. So what so special about her? First time when I heard people responding to priest her voice stood out. This was the moment when I stated to look through people and try to find out who speaks so loudly, slowly and articulates all the words so much, like she wanted to make sure God understand her very well. And this was far from normal pronunciation. Like your English teacher speaking to you loudly and slowly to make sure you understand every word he is saying to you. From time to time there was also a stand in that help her. Old lady who was singing so loudly and so out of tune you wondered how much more you can get out of this place.

Time for third actor, 30 plus man – The organist. Normally he would not have been even spotted by me, but since he sits behind his organs located on the left side of the altar, you can see him from the start. What so special about him? He has this nervous smiling grimace, that doesn’t fit to the moments in the mass, you starting to feel a bit puzzled. Is he smiling because, he also can not stand priest’s poor acting skills, or he is just nervous, that everybody looks at him when he is playing the organs and sings. I know I am picky here, but in combination with the rest this is just another little relish that just makes this place unreal.

I have tried many times to ignore all of that and just focus on the reason why I am in that place, but I just can’t. It is too much for me. Maybe I saw too many Tarantino movies and still think, that if he would come here, and say “Action!” nothing more needs to be done. No directing, no extra scenography, just “Action!” and he has another good take to his movie. Maybe I am looking for some answers and all those statues, pictures, paintings, people and priest are drowning God’s voice and I just can not hear Him talking.

“Dad.”

“Yes, son?”

“Why you allow all of that?”

“World would be dull, if it wasn’t for those people. And at the end, I loved them as much as I love you.”