[Kuba80BJ]

After over 6 months of silence from me here I decided to share with you what was going on in my life. I stopped posting here just few days before the BJ show in Poland, but the reason behind it is totally not BJ related. That’s why I post in it NBJ section, even though parts of it still will include BJ stuff. Once again life has written a special story for me. If you manage to read it to the end you can decide for yourself whether it ends with a happy ending or not. I just have the need to share it with the world and this place is the only place I know to do so. And it took me few months to be ready for it. So please forgive me the tone of this post.

It was afternoon of 18th June, just one day before the show in Gdansk. I finished work and the only thing ahead of me was experiencing the greatest dream of my life. First ever BJ show in Poland, which happened to be in my hometown. When I got back from work, my wife, who was then in her 9th month of pregnancy with our second daughter told me she is not feeling very well and that she has frequent contractions and probably will give birth soon. All my life, I had two greatest dreams above any other smaller ones – to have 2 children and see BJ show in Poland at least once. And to experience them both on the same day would be to cheesy even for a Hollywood script. My wife has been with me at all our previous shows and of course she was going to be at the one in our town too. We even have foreseen the situation and bought a seating ticket for her, just in case it happens on the day. Doctors gave us the date of 25h June as the probable one, but one or two weeks left or right was possible too. I had the ticket for GC on the floor, but in her eyes view, just to check and be ready to leave the stadium if this really happens at any part of the show. So many of our friends were saying how cool that would be for me, such a huge BJ fan. But still I never really took it too seriously this might really happen. Besides, my wife wanted to go for the show really bad and was hoping the contractions will cool down. She’d much more wanted to go to hospital right after the show but not right before. Anyway, just after about 10pm her waters broke and then it was almost certain that this dream might really come true. We left to hospital and after general procedures we reached the delivery room 10 minutes past midnight. So we knew for sure our daughter will be born on the day of the first ever BJ show in Poland. And the whole labor was so fast that exactly at 00.30, June 19th, only 20 minutes after we got there, our beautiful little daughter – Alice - was born. I was with my wife during labor all the time just as I was at Natalie’s birth (our first daughter) and I simply couldn’t believe what had just happened. This went so fast, it was unbelievable. Natalie’s birth took about 5h and this took only 20 minutes. This was no unreal. Especially for me this was too good to be true. On the same day two of my greatest dreams were about to become reality. I think that was the most exciting moment of my life…but…You Can Only Get So High…..

…Then You Gotta Come Down….We had few minutes to see our daughter, they put her on my wife’s chest as they always do, and then took her away to make some typical measurements and basic tests. And when they came back with her, they came back with a new doctor out of nowhere. And she said that baby in general is fine but shows “phenotypic features of trisomy 21”. We both looked at each other and looked like “What? What the hell does that mean?” We didn’t understand a word of that, even though it was Polish, but sounded like foreign language we don’t know at all. But it sounded so serious this couldn’t be anything good. We asked her what does it mean and she said “Well, we have to do some extra tests and we have to make sure about it, so don’t worry yet, but it seems your daughter has Down Syndrome”. And we understood that very clearly. Too clearly actually. And she added that very often it comes with some kind of heart defect, but they will do more test later, and she left. The silence of that moment will stay with me for the rest of my life. We just looked at each other, without words, completely shocked. “How? Why? We are so young! This can’t be true!” Those were the first thoughts coming through our minds. Nothing was certain but that news overpowered the joy we had shared just 5 minutes earlier, and happiness was all gone. We were looking at Alice and we could not see a thing wrong. Then I looked at her eyes closer and it looked a bit weird but not too weird and we still were so confused. After about 30 minutes they put some cables to her foot, and after few minutes something was wrong with oxygen in her blood or something and they took Alice away to do some detailed tests quickly. And we were left there all alone. Without baby. Without words. Without joy. Only with fear and sorrow.

One very important thing is that throughout whole pregnancy my wife’s done many scans, including 3D scan, and visited doctors regularly, that were supposed to show any signs of abnormalities with the baby and they were absolutely clear everything’s fine. Nothing, absolutely nothing suggested that the baby will be born with neither DS nor heart defect. We were told the baby is 100% healthy and there is nothing to worry about. That’s why we were so shocked when they told us about it. On the other hand, even if we knew during pregnancy about it, it would not change a thing. We would never abort the baby. Never. It’s just that there was no time for preparations, no time for adjusting your mind to the thought. It was poured on us like a bucket of ice cold water.
Later we’ve learned that Down Syndrome happens about once every 1500 pregnancies for women at the age of my wife. So you can say we won the lottery. Statistically chances for it were almost impossible, yet we turned out to be that one case anyway.

I remember we only said to each other, that no matter what happens we will have to stay strong and somehow go through this together. We both did not cry. I guess we were both trying to pretend to the other one that this is easy and there is nothing to worry about and that soon it all will be just a bad diagnosis and it will all be good again. But deep inside I think we both were scared as hell. At least I was, but as a man, I felt I have to be that brave knight even more and not show any signs of weakness to my wife. I left her at about 3am and went back home. And over there I could be that vulnerable knight and tears are all I can remember from that night.

In the morning, when I came back to hospital it was 90% clear Alice has Down Syndrome and she only needed some genetic tests done to prove it, which was supposed to be a formality only. The thing is that only one hospital in my city is able to do them and you wait for about a month for the results. So we already knew we will have to wait really long for definite results but they basically gave us no hope. But what was as tragic as the DS diagnosis, was the confirmation that Alice has a severe heart defect, called AVC (you can read more about it here: http://www.lpch.org/DiseaseHealthInf...rdiac/avc.html ) and will have to go through an open heart surgery for sure. They didn’t know how soon, but she will for sure. And just to make it clear, Alice was kept away from my wife all the time. They kept her at a special ward, with premature babies. So you can only imagine what a nightmare my wife was going through even more. She could not even hold her and only wonder how she’s doing, and maybe visit her like twice a day for few minutes. We were maybe 12 hours after Alice’s birth and we already knew, that our life will never be the same from now on. And with that thought in my mind I was few hours ahead of my second greatest dream – first ever BJ show in Poland.

To be honest at that point I actually didn’t want to go at all. I was so depressed and lost all my hope about anything. If you check the thread about the show in Gdansk and go to opening post by me, you’d get the impression how proud and excited I was about this show. And after reading that, you can just try to imagine what must have been happening in my mind to actually even think about not going. Moreover, there was one more factor that has already weakened my excitement about the show few weeks earlier – absence of Richie. I also bought tickets to the show in Stockholm and Tampere and because of Richie’s absence I decided not to go. I’ve been saying loud and clear here over the last few years that Richie to me is the most important member of the band, and always has been. Without him to me there is no Bon Jovi. That’s why I dropped Scandinavian shows, even though I lost some money, because Swedish promoter refused to give me refund for the ticket (Finish gave me refund without any problems). Richie’s presence and charisma, not to mention obvious guitar and vocal skills to me are too important. So actually it was even a bigger miracle for me that the first ever show was scheduled for Gdansk, because if it was any other city in Poland probably I would not have gone anyway, not only because of Richie not coming, but also because of my wife’s pregnancy and a risky date.

[Kuba80BJ]

The thing is that right after the show was announced I encouraged my family and friends to buy the tickets for the show too. 6 people in total. And they all were about to sit next to my wife at the show. I was the only one, the crazy die-hard, with the GC ticket on the floor. And when I was on the edge of not going, they encouraged me to go actually. What an irony, isn’t it? And after giving it a second thought I knew they were right, because the only thing other than going to the show that night, would probably be crying all night all alone at home and going insane with all the thoughts about uncertain future ahead of us. Just 2 days before, I ordered a special t-shirt designed only for this show by the Polish BJ fan club, that hundreds of other fans were supposed to wear that night, and I was supposed to be one of them. But in the last moment I decided to wear my “Keep The Faith” t-shirt, the one I wore at each of my previous BJ shows. I felt that this particular shirt was the only obvious decision in that circumstances, even though in that moment I literally lost my faith. And so we left home for the stadium. I actually sold my GC ticket in front of the stadium for about 1/3 of its price as it would be wasted anyway and decided to go to stands and seat at my wife’s seat.

I am fully aware that my perception of the show was distorted that day but I will just tell you what I remember about it, since I haven’t had a chance to write a proper review as I always used to do here after each of my BJ shows. I will not focus on the set list at all. That was the least important thing about that show for me. Polish BJ fan club had several surprises for the band and I was really curious how those would go. The biggest surprise was the special huge flag that was drawn into the stands at the beginning of the show during Born To Be My Baby. It had a very clear message on it “Good things come to those who wait” and “Thank You”, all of it with bands logo on it and Polish national flag in the background. After 30 years the band finally decided to come to our country for the first time, and we all just wanted to show our gratitude for that. And the way I look at this, I am absolutely sure, that was the moment that changed the destiny of this show. I think Jon came here with the attitude to go on auto-pilot during the show, do his job and leave. Even their schedule seemed to prove it. The band landed in Gdansk after 5pm, so only 3 hours before the show, went straight to the stadium, and after the show they went straight back to the airport and left the country. I personally think that was hugely disrespectful towards us. I was more than sure that they will stay at least for one night here do some sightseeing, learn a bit about the culture and history of the country they’ve never been to before, do some interviews and leave then. Especially when they had day off after the show. Everything seemed so rushed, like we were just a quick stop on the way. And I think, since they’ve never been here, Jon was totally not aware what fans will be like. But when the flag came on, that was the moment when he realized that this will not be an ordinary show and that those people, those who waited for him so long, are really hungered of the music and appreciate it. I was actually seating exactly at those side of stands and the flagged stopped exactly in front of my face. You can see in clearly in my video of this song on my YT channel. The crowd was crazy from the first song but I think that was the moment Jon realized that auto-pilot will not be enough here. And the confirmation of that thought came in the most surprising moment to me – Because We Can. The song I personally really don’t like, but after the band finished it, the crowd started waving their hands again, on their own and forced Jon to sing the chorus again, acoustically. Even though I don’t like the song I am aware that Jon is proud of it, and I guess that touched his heart again. And from that moment on, we saw Jon performing at his absolute best. I was actually surprised with his great mood after that. He was all smiling and you could clearly see he enjoys it and poured his heart until the very last song.

And make no mistake about. Polish fans were 100% responsible for this in my opinion. To be honest, before the show I was really scared how the crowd will react to the songs. Will they sing or not? Will they interact or not? I was even afraid how many Polish fans will attend the show but we were all surprised that over 30 thousand people showed up, which to me is an enormous success. Tickets were not cheap for Polish incomes. Show was in the middle of the week and many people had to take off days from work to get to Gdansk from furthest parts of Poland. No one knew exactly how big is BJ fan base here. But it all worked out perfectly.

I’ve seen BJ in few different countries before, with some of the best crowds of the tour, but on that day I was really proud of the Polish fans. They were among the finest crowds I have ever seen. They poured all their hearts and energy, squeezed during those long 30 years of waiting, and let it all go that night. That was unbelievable sight and the one I will remember for the rest of my life. I personally could not give my heart out that night, but I am grateful to all my Polish brothers and sisters for showing the band what we are really like and make them regret they had not come here earlier, cause the audience like that is very rare thing to witness.

After the main set Jon received another gift from Polish fans – a Polish football national team shirt with his name and he walked out dressed in it for the encores. That gave the crowd an extra boost by the way. I could write more about it but you can check it for yourself on absolutely amazing video of the whole show, made by fan club members after the show. They did a multi-cam video using videos of dozens of different people at the show, including mine. I highly recommend the final outcome here:

Good Things Come To Those Who Wait: Bon Jovi Live...

And me? Well, this was really tough experience for me. For the first time I was at BJ without my wife. I called her 3 times during the show – during my fav Keep The Faith, Prayer and Always. I wanted to have at least some connection with her during that special show and day for us. Of course I couldn’t hear her, but I just held my phone in the air and let her listen to the songs with me. Faith was the thing we both needed that day, plus she knew this is my fav song. Lyrics of chorus to Prayer got a totally new, personal meaning that day too. And Always was just a way to show her my love and unity with her. Ironically, the hospital Alice was born at was the hospital very close to the stadium. After the show my wife told me she could hear the show through the windows too.

Throughout the whole show I had Alice in front of my eyes. She was 20-something hours old and she already was facing this shit world with so many problems. Such a small body that was going to face so many hard challenges soon. I am not going to lie that I cried a lot during the show. I didn’t care about people around me. The ones I was with knew the situation very well. It was all about us, our daughters and my all time fav band. Nothing else.

BJ has been the soundtrack to my life for over 20 years now. It’s such a cliché line but they really are. Somehow they always managed to find me in the hardest moments of my life. Their songs lifted me up so many times. And on that day, they found me again, and not only on CD but personally, standing in front of my eyes, in my hometown, in the most difficult moment of my life. That was actually a kind of a miracle. And it worked, for those two and a half hours they lifted me up again. They gave me strength to survive that day. Once again they saved me and I will be grateful to Jon and the rest of the band for that forever.

Too bad that the most important member was not there though. I needed Richie that night the most. When you look at my videos from the show you can see that every time Phil was about to make a solo, I was zooming out to not have him in the video. I know it sounds crazy. I have absolutely nothing against Phil, I said that here many times. I respect him for everything he’s done to help the band in this hard situation and I think he is a great player. But no matter how hard he tries, he ain’t Richie. And Richie is the only soul of the band that I hugely missed that day. I could be mad at Richie about that. But I am not and I’d rather think that he really had a very good reason to leave the tour and I will not be the one to judge him.

It also seems like it was destined like that. Somehow this band and its members are connected with my life, and our paths crossed in some weird way so many times. For me 19th of June was perfectly imperfect. I received both of my life’s greatest dreams on the same day, which was unbelievable on paper. But both of those dreams were not fulfilled the way I wanted them to be. I wanted two children and I got that. I wanted to see BJ in my hometown and I got that too. The problem is that both of those dreams were hit with nuclear bombs at the most fragile parts of my deepest fears. First bomb hit health of my child, and the other one hit the most important member of the band for me. You could say that on the same day I got both of my dreams and at the same time I lost both of them forever. I was forced to let them go. And I guess that was the most difficult thing I had to accept in my mind.

[Kuba80BJ]

So the show was gone and the real life has begun. Alice stayed at the hospital for about 10 days and she was released home shortly before birthday of our older daughter. Natalie was so excited to see her little sister. When we were at the hospital she was asking about her all the time and it was really hard to explain all that to her, why Alice can’t be with us earlier. Of course it was only because of that heart defect, not DS. We had a special meeting with psychologist already at the hospital, next day after the show actually. I am not sure if it helped us much but at least we knew where we are standing and we both said out loud how we feel. At least I thought I knew but I couldn’t be more wrong.

When Alice was already home I noticed I am doing everything I can to avoid her. And instead I did everything I could to spend as much time with Natalie as I could, who had become my only shelter in that moment and I felt safe only in her company. My wife handled all this much better than me. Maybe this has something to do with natural mother instinct women have and something fathers have to learn, to make the bond with their child. And while I didn’t have that problem with Natalie, for some reason I was not able to make such bond with Alice. And the reason was very simple. That one fuc**** extra chromosome that got into our life and between us. We did not ask for it. I wanted a healthy child, just like everyone else. We are rather young, my wife is only 28 years old and I couldn’t accept the fact this happened to us. It always happens to anyone else but not us. Why? We run a rather calm and healthy life, we don’t smoke and drink occasionally so what was the problem. Of course we knew nothing about DS. We only knew as much as any other person, so basically nothing. The only thing I was aware was the fact how hard living with disabled person is here in Poland. Our country is not helping much, social allowance for disabled child is almost laughable and the society’s approach to disabled people is far from friendly. If you want to insult someone very often you call them here “Down”. That was the stereotype I had in mind and I knew all that shit will hit us too, sooner or later. And the more I thought about the future the more angry I became and the less support I was giving to my wife to take care of Alice. And the further it went, the more I started to hate myself. I actually couldn’t recognize myself in the mirror. I always considered myself as a rather good Dad, towards Natalie, but I guess it’s easy to be a Dad if everything’s fine. I was ashamed of myself I couldn’t give all my love to Alice too. I didn’t want to cuddle her, kiss her, talk to her or even look at her. She was so awaited child. We wanted her. She was born out of pure love and yet because of the fact she was not the way I thought she’d be or I’d want her to be, like beautiful and healthy, I started to reject her. I kind of did not want to accept her as my child. “I”, “I”, “I”. Only my point of view seemed important. Egoism, selfishness and hurt pride overpowered me.

And that was the moment I started hating myself. I was aware I was going south, but I didn’t know how to stop that fall. I felt absolutely helpless. And it hurt me deep inside that I disappoint my wife and that I am not the support she needs, and of course this whole situation was not easy for her either. And most importantly I hurt the person that did nothing wrong at all and needs love the most – Alice. You know this line “Don’t you let your love turn to hate…” And it was coming from my all time fav song. And still I was letting that to happen.

And when I knew I am not able to win this alone I decided to ask for help. Somewhere higher, where mind ends and emotions and faith starts. God. I needed to talk to a priest I knew for about 15 years, and who no longer was at my church. He was the one who celebrated the Mass at our wedding too. Somehow he was the only person that always found the way to say things that touched me greatly and opened my heart on various things before. And I found him. We had a rather short, rough and fruitful conversation/confession. It has also turned out that he served his vows and became a priest on…19.06! I didn’t know that before. He’s always been the most important God’s servant here on earth for me and he got that power on the same day as Alice got her cross to bear and us too. He told me things that helped me find my old-self, lost somewhere in the desert of darkness I was at since Alice’s birth. Out of all the things he told me, and there were many of them, I will tell you one thing. He said more or less this: “When people are married and love each other, they are like one body and soul. The magical thing is that when they experience happy moments in life, the happiness is doubled, but when they experience bad moments, each of them carries only half of the cross that’s been given to them, cause they share it and it’s easier to carry it together”. I understood I can’t let my wife down, nor Alice or Natalie, and put my egoism higher than them. Alice’s health problems were not the real problem. The real problem was only in my head. I stopped asking “why?”, I just said “despite this cross, I will still keep the faith” and will leave everything in God’s hands. Few days later he also baptized Alice and from that moment I was finally, slowly becoming Dad to Alice, just like I was for Natalie. That was the turning point of my attitude towards Alice and her disability and health problems. It was not a rapid process, oh no, don’t get me wrong. But I finally started to accept her the way she was born. I no longer saw only DS in her. I finally saw my little beautiful daughter that deserves as much love as I can offer and care to fix that heart defect and start a brand new life.

Another very helpful thing were meetings with many families like us, who have children with DS. And you wouldn’t believe how many young couples deal with it and most of them learned about it after childbirth just like us. We’ve received such a great support from them. They shared with us all the knowledge they have about it, learned mostly from experience. This was priceless. My wife also found a foundation that is run by the parents of kids with DS, with the main office in our city. We also had the chance to take part in a special conference only about DS, which again took place in our city, and people were coming from all over Poland for it. That was the greatest lesson about DS for us and we’ve learned exactly what we can expect in the future and where to look for help, what kind of help, exercises, rehabilitation, education is available. In this unfortunate situation we got really lucky because in our city a lot of helping hands were within our reach and until then we had no idea such things even exist. In general, so many new ways to improve life of people with DS have been discovered in the last 5 or 10 years, that some stereotypes that we had in our minds were already under control. And that knowledge gave us a lot of comfort too.

For the next couple of weeks and months we became frequent visitors at hospitals and various medical specialists. During all those visits we also met so many parents that struggle with so many health problems of their children. Most of them much worse than Alice deals with. This gave us a new approach to this whole situation too. None of them complained. None. They only did everything they could to help their kids win those battles. They were a huge inspiration for us. If you ever think that your problems are big, go to any hospital and check what things other people have to deal with, and suddenly your problems will become unimportant and small. I think that is one of the greatest lessons we’ve learned over the last few months.

There was still the hardest part ahead of us though – Alice’s heart surgery. She was hospitalized several times before surgery, but only to have some tests done and check how much longer she can handle without surgery. That heart defect was giving one main effect that anyone could easily notice. Alice was breathing fast and was getting weak very fast too. That included even such ordinary actions like feeding her. She even had to take few breaks to drink milk. I am not going to get into details about this defect and you can read more about it in the link above, but shortly that’s what was going on. And since the surgery needed to be done on open heart and also include correction of valves, for surgeons it was important it to be as big as possible. The size of a few months old baby’s heart is about the size of walnut. So you can only imagine how small the valves can be in such heart. For them each gram or millimeter more in weight or size of Alice was raising chances of success pretty much. That’s why the surgery was postponed all the time, at least until Alice weighs 5kg. Alice’s body was handling the defect quite well (if you could say that in such situation) and as long as there was no direct life threat or loss of weight they wanted to wait.

[Kuba80BJ]

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.

[Kuba80BJ]

Of course as always BJ music was with me too, but to be honest for most of the time I was listening only to Aftermath of the Lowdown, almost every single day. For few months that was actually the only album I listened to. Especially 4 songs on constant repeat – Seven Years Gone, I’ll Always Walk Beside You, You Can Only Get So High and Forgiveness Street. Somehow lyrics of those songs has become personal more than ever. Especially SYG which has been my absolute best of the album from the first time I heard it. This year I realized I met my wife 7 years ago. My 7 years are gone too. And since then I was on a constant rise. Everything was perfect, I had success on each level, privately and business wise. So many of my dreams came true, including all BJ related ones and you could read about those in my previous reviews here. So exactly opposite to what happened in Richie’s life filled mostly with troubles and pain. After those 7 years Richie seems to have found peace within, while on the other side I met the greatest question mark of my life – what will future bring to us and will it be now 7 years of pain instead or not. To me SYG has become the only song that can match the greatness of my BJ TOP 3 – Faith, Dry County and These Days, on each level, musically and lyrically, and now I will list them all on one breath. Right now I can’t imagine my life without this song to be honest. „…Can’t find the road to healing when you’re blinded by your pride…” or “…while you’re chasing what’s been stolen change is making other plans” are just examples of how meaningful the lyrics are, and how much I can relate to them now, more than ever before.

I’ve never hidden that Richie’s latest solo album for me is a masterpiece. And I love it more and more with each listen. Unfortunately I can’t say any good about band’s latest album and I think the last time I listened to it was in April or May. What About Now is a huge step back after The Circle, which I love and has become my third fav band album, so it’s not that everything post ‘00 is bad to me. It’s just that WAN didn’t grab it at all. But Richie’s album was my greatest friend in those months. Richie’s absence on tour was a big letdown for me but if he decided to quit for some reason, I take it there was a really good reason for him. But the music itself has always been the most important thing in the world and that has never disappointed me.

As I think of it now, there is no coincidence BJ is my fav band since I was 12. Over those 20 years, with each next album (including their solo records too of course), I received a puzzle that right now formed a whole picture of life’s greatest priorities – Love, Faith, Hope. That’s what BJ is all about. They’ve been preparing me for this moment of my life and have given me the tools to not only survive, but thrive. Each song was a puzzle that has given me the strength to move on. I had them with me all the time, it just took some time to put them all together.

I know that as fans, after this tour, we can have some fear about this band’s future. Will we see them with full squad again? Will Richie be back? I sure want to think so. I sincerely hope that if there were any arguments between them, they will find the solution that will satisfy their individual needs and also will let them continue as a unity. I am sure that we’ve heard only a small part of truth and I hope it will stay like that, and only they will know what really happened. What really matters is whether they are able to stand back again after a huge fall. They had the full right to fall, they are only humans just like any of us. So I see no other way. They are here for a greater cause and they have a huge gift for that. They are here to give us hope with their music. So I still believe we will see them all together somewhere out on the road again in few years from now, hopefully with one more show in Poland too.

So what is Alice like actually? I can tell you that she is the most amazing baby on earth. She is our little angel. She has a very positive nature and loves to smile a lot. She is also extremely calm and quiet baby . She barely cries and lets us sleep all night in silence. At first we thought she was too weak for that because of her heart troubles, but now her heart is fixed and still it’s like there is no baby at home. She is the most fearless fighter I’ve ever seen. All the pain she had to go through at the various visits at the hospital and the main surgery is not ordinary. And she has the most magnetic look and you just can’t stop looking in her eyes. And above all she is a part of us. Just like Natalie is.

Our Alice will stay in her Wonderland forever. There is no going back, there will be no magic rabbit here. We just have to learn how to live in her Wonderland and she has to learn how to live in our “normal” world. Only thing we should do is to help as much as we can to get our worlds as close as possible to each other, but also to accept differences between them. We’ve learned from other parents that people with DS are very lovable, very emotional, honest, so what’s wrong about that. Probably we have a lot more to learn from her than she will from us.

It’s not a fairy tale though, the challenge has only just begun actually. We are at the starting point of a very bumpy road. Right now Alice is very young and it’s much easier to deal with everything, but as she will get older it will be much harder. I am sure there will be tough moments again, there will be tears and pain again at some point. But to tell you the truth I don’t think about it now. I just focus on this day. And I’d rather focus on happy moments and positive attitude and it will all be alright.

So, you may now ask yourself, why on earth have I written all this down to you? There are two reasons. First of all it might be helpful to someone out there looking for comfort in a similar situation. I can tell you that we’ve met a lot of people dealing with the same problems, or read many blogs or websites run by such people, and at the start of the road those were most helpful to us. We couldn’t understand when they said they are happy, but today we feel the same. It is possible to go beyond impossible and see more than meets the eye in the first look. It doesn’t matter how low you fall, it’s important whether you will find the strength to rise again And if there is only one person in this world that will read it and this post will somehow help them to regain their hope for better tomorrow in the middle of the storm, than I’d be the happiest man on earth. This is me giving back to the society what I received from it recently too. Simple as that.

And second of all, this is my final personal encounter with this year’s experiences. I wanted to close it with a hopeful note and I managed to do it on the very last day of this year. This year I learned a lot about myself, about my wife, about my family and friends. We are absolutely blessed to have them and each other. I wish everyone such support in their life. They all prayed for us and with us. Everyone can believe or not in whatever they want, and I respect that, but I strongly believe that without God and faith I would have not been here today. This is my ultimate source of power and as long as He’s with me, anything is possible.

And last but not least, recently one more of my dreams came true. From the first listen of Aftermath, I always wanted to record our own version of I’ll Always Walk Beside You. Maybe you remember our cover version of Every Road for Richie’s contest -

Kuba & Ladies - "Every Road Leads Home...

- and it had a short snippet of this song at the end. And finally, after Alice’s surgery, when all the storms of this year disappeared, we were ready to do this. Moreover, with the help of our friends from the band, we were able to record it in really good quality. Of course I used my new guitar to record it too. The lyrics of this song are word by word about my family and our relationship and what we would like to say to each other. It’s like Richie has written it especially for us. Of course I know it was for Ava, but maybe that’s why it’s so powerful for us too, because it comes straight from the heart from the very beginning. To me this is the best ballad since Always, by band or on their solo projects. I really do. I was hoping to hear this song and SYG the most in Berlin last year, but I did not. Hopefully one day I will. And I still believe that one day I will meet Richie personally and will have a chance to thank him for his music. But in the meantime I would like to share with you our version of it along with photo presentation of my family. I already told you everything so the only thing that’s left is to show you what we are really like. It is also a kind of testimony and commitment in front of everyone, that I am proud of my girls, that I am not ashamed of Alice’s difference, that we are still a very happy family and that no matter what life will bring us we will always walk beside each other. It’s like a finishing chapter of this year’s experiences before moving on to the next chapters, whatever those will be. I hope you enjoy it (by the way I recommend listening to it with headphones on):

I’ll Always Walk Beside You – our cover version – http://youtu.be/FZV205PIiyI

I will finish this whole story with the quote from SYG though:

“…Like a moth dances with the light
Sometimes the shadow burns too bright
Shattered silence in the night
YOU WAKE UP
MOVE ON…”

And I think I finally did that. Today I finally did.

Thanks for taking your time to read this monster post and Have a Great New Year 2014!

Keep The Faith

Kuba

[JonGirl]

Thanks for sharing this very inspirational story with us. My heart is with you and your beautiful family.

[Sami]

Sharing the story on the board, that was a very brave thing to do. God bless your family.

[aljo]

Kuba, you are an amazing person and I am so proud to call you my friend. You really let it all out!! Very courageous of you and very inspirational!!!

[Kathleen]

Oh Kuba - my heart goes out to you and your family. What a day that must have been from the "high of highs" to the "low of lows". Her heart surgery must have been terrifying. It's a miracle that they can even operate on a baby that small.

You seem to be dealing with this in the only way you can - one step at a time. I hope your daughter can grow up and become somewhat independent. There are gradations of DS. I grew up next to a girl who was the eldest of 5 kids with DS and she was always a member of group that played together. She was also able to go to a special school. She was accepted by us because we didn't know any different - that was just how Teresa was.

And last but not least - my son is dating a wonderful Polish women who will probably become a member of my family. She is wonderful and I am very fond of her. She is a wonderful representative of your country.

[VanJovi]

Kuba, thank you for this sharing your story. This story is what we need to read more often. Truly inspirational and I can only imagine what you and your wife have gone through from the day Alice was born till her surgery.

Sending you the best wishes for a truly healthy 2014 to you, your wife, Natalie and especially Alice.