There is a famous hospital in Poland that specializes in pediatric heart surgery, and it is about 350km from us. In such situations everyone wants to go there. But from the various people we met, from other specialists, we also learnt there is a ward of pediatric heart surgery in our city, which was brand new, with brand new world class equipment and was only about 5 years in the run. We’ve heard about the main surgeon over there and tried to find as much info as we could about him. And even though some people advised us to pick that more popular hospital, we decided to stay at home, and do it in a more intimate setting, without hundreds of people around us and half country from home. The moment we met the main surgeon for the first time and had a first conversation with him, we knew this is absolutely the best person in the world to take care of our daughter. Actually there are two most important doctors there and they work together. One of them is cardiologist and the second one is heart surgeon. They are like inseparable duo and each rely on the knowledge of the other. And both of them are not only the best specialists possible, but also one of the nicest people we have ever met. Doctor’s straight from the heart, literally and figuratively.

Eventually the surgery was scheduled for middle of November. And just when we had the final date almost set, all of us at home got some infections, cold and all other shit that you can get in autumn/winter season. Unfortunately Alice got small infection too and her surgery had to be postponed again as she needed to be absolutely healthy for it. There goes our luck again but we had to wait patiently for the recovery. Thank God infection wasn’t that bad and as soon as she was healthy again, doctors scheduled surgery for 2nd December. That was THE date we’ve been waiting for since her birth. Until that day I tried not to think about the surgery but when we knew the set date, it just got absolutely real and there was no going back. As my faith was back and strong, all this time I did not let any thoughts that surgery may go wrong into my mind. But no matter how strong I thought I was, that day will be absolutely the most challenging and the worst moment of my life.

My wife was staying with Alice at the hospital day and night and I could only come for short visits. Her surgery was scheduled for the morning and I was at the hospital shortly after 7am. I will remember that look in Alice’s eyes forever. I was holding her hand, looking at her and passing her into the careful hands of specialists, but we were advised that even though they’ve done similar operations thousands of times (literally), always something can go wrong and the baby may not survive either the surgery or die shortly after it. We both were aware it can go both ways. Her eyes were so sad and yet so calm and peaceful that morning. It was almost hypnotizing. And the moment they were taking her away, I was the one who was crying. Not my wife. She was handling it much better than me. But I couldn’t stop the tears. That was the moment I realized I don’t want to lose her. I didn’t care about DS anymore. All I cared was to have my baby with me for the rest of my life. You can live with DS, but you can’t live with heart defect and without that surgery she would have died anyway. There was no doubt about it. And I think that since I was forced to face the edge of life and death of my own child, I was able to set priorities what’s important and what’s not in this life once and for all. In that moment I gave that damn chromosome a final kiss goodbye and from then it has become invisible to me. I know it’s there, it will always be there with us and will be responsible for everything “different from normal”, but I just accepted that. It was the full circle I had to go through since Alice’s birth. Happiness-shock-depression-rejection and then slowly I started to accept the new life. On that day the acceptation part reached its finish line and changed into happiness again. As I think of it now, I think it was a kind of a “blessing” that she had that heart defect, from my point of view. Of course I’d do anything to take all that suffering from her without hesitation, but for me strangely it was cathartic experience in some way that helped me understand and accept DS and the place we were put into.

The surgery lasted 7 hours. We were told they will literally stop her heart and machine will take over the job of lungs and heart, so they could fix all those defects. It’s just a pure science-fiction how they do it, but I am grateful we have specialists that are able to do it. When they took her, we went back home as the hospital is just few km from us. And we live in a part of the city where we can see the whole panorama of the city. As I was praying all the time that day, I looked at the sky and I couldn’t believe my eyes. For the last couple of days the weather was really bad, very cloudy and grey, and on that day, for the duration of the surgery the sun came out and its rays were going through the clouds, cutting it and that light was spreading above the city centre where hospital was. It was such a magnificent look. You can call me crazy, I don’t care, but I took it as a clear sign everything will be alright. I felt the presence of someone much bigger than me, than us. God was with us that day and He knew that it’s not time for Alice yet. She was sent to us for some reason. We don’t know it yet. Maybe one day we will, or maybe it won’t be important anymore. I took a picture of that sky, so I could never forget that feeling and those rays of hope coming down. Surgery went well, doctors fixed all defects and we just had to wait how her body will handle the new environment. Those doctors are the greatest supermen here on earth. Working in silence out of the spotlight. This world got all the priorities wrong and such people should be glorified everyday in this crazy rat race we live in nowadays.

After 3 days her state was stable enough to move her into ordinary ward room so my wife could be with her day and night. And then again another unfortunate event happen. My wife had sore throat and was not feeling well and they prescribed her antibiotics. They also said it will be much wiser for her to go home and not pass the infection onto Alice who was absolutely defenseless for it, as her immune system was very weak after surgery. And so the only person who could take over was me, and I stayed with her at the hospital for few days and nights. I was all she had, and she was all I had. Staying overnight at the heart surgery ward is not an easy thing. Every patient is wired and under special monitor that beeps nonstop. Heart rate, oxygen saturation, breath rate, blood pressure. And that constant beep. But after few hours you can adjust to it. I think I was the only father who stayed there at that time. But I did everything I could and even though I didn’t get much sleep I was happy to be there with her. Again, ironically my wife’s sore throat was a “blessing”, because I could strengthen that bond with Alice by being with her nonstop in such a hard moment. A father-daughter love. I was with her for 3 days and doctors said she is doing very well and we can go home. I felt really fulfilled as a father and husband to have the ability to bring Alice back home to my wife and Natalie, and start a brand new life, with a brand new heart. Not only for her, but probably even more for us.

During those trying months, music also played a key part in our life and has become our greatest armor. First of all, with the help of our friends we formed a band. About 10 years ago I used to play with them and few other people in a Christian band too. We were writing our own songs and played during Sunday Masses. I have written a couple of songs too. We were taking part in various Christian festivals and even won few of them. That was a great time of my life but eventually for various reasons we decided to split after few years of playing. And now, with a partially different squad we started recording covers of Christian bands, like Casting Crowns or Hillsong and other similar artists, only with lyrics translated into Polish language. We started with my fav song “Praise You In This Storm” by Casting Crowns that has actually saved my life several times in the past, almost literally. And for the time of Alice’s surgery and stay at the hospital that was the only song I listened to. This is the only non BJ song, that can match with my BJ fav songs. We have it almost finished but it’s still too soon to share the outcome with anyone. We have a full squad with drums, bass, guitars (including me), keys, and vocals. This band is rather recreational. We rehearse about once a week for 3 hours but still it’s a lot of fun and very cathartic experience for us, because my wife also sings with us.

For the purpose of this band I finally had a great excuse to buy myself a new acoustic guitar. My old guitar is almost 20 years old. That was the guitar I learned to play on, but over the course of time it doesn’t play well anymore to say the least. It is not even a brand guitar as I couldn’t afford one before. Of course as a Richie fan I would love to have Taylor or Martin guitar, but those are still far beyond my budget. This time I wanted guitar with cut away and after a research eventually I decided to buy Yamaha FJX730 SC BS and I fell in love with right away. It sounds amazing. I love it and it’s one of the best things I ever bought.