February 14, 2018 – Valentine’s Day
With hindsight, it often all makes sense…
February 14, 2018, Valentine’s Day, my son (Riv Eli) was diagnosed with Tetralogy of Fallot, a combination of several congenital abnormalities of the heart. The defects include a ventricular septal defect (VSD), pulmonary valve stenosis and a thickened right ventricular wall (right ventricular hypertrophy).
At the time of writing this 1st love story (1st, as there are many more to come), he’s 11 months old. And the past 11 months were the best my wife and I have ever experienced. Riv Eli is such a blessing to our lives and the people close to him. From the start, there’s something about him…a positive flow of energy, pureness, happiness, much, much happiness.
And of course, every parent will probably say the same about their kid(s). At least, that’s what I’m hoping for.
Image 1: Shining bright before we ever knew about the missing piece of the puzzle
During these past 11 months, he was very happy, enjoying life to the fullest, smiling, very positive/bright energy and not showing any signs of a major heart defect.
With hindsight, I do have to admit that there were minor signs, like a puzzle that missed a piece. But you don’t see it yet as you just unwrapped the box and see the potential of what’s in front of you.
One of these missing pieces of the puzzle, popped up whenever he put in a lot of effort. His lips would turn blue’ish….not a major change in color and only visible to the trained eye as the doctor later explained.
Some days, I blame myself for missing signs like this, (and what comes next is no defense of me, myself and I), but my wife and I only had eye for the happy place we were in: a beautiful boy growing as he should, enjoying life as he should, always up for a smile and playing games with “pa-pa”.
No-one ever noticed the problem my son had, besides my sister who mentioned once that he looked a bit pale. My sister is a trained and professional nurse, so, once again with hindsight, we should have paid more attention to her observation (I hope she doesn’t read this).
This process that changed my life, started when we went to our general practitioner for checking up on a flue that kept my son busy. He noticed a small noise when he listened to his heart and that’s how this emotional roller coaster and awakening started. I’m thankful that he did not send us home saying “take some rest, he’ll be fine”.
The last 3 weeks was a roller coaster ride, going from disbelief to euphoria to complete depression. Now we’re back in the euphoria phase as we’re home again, with The Heart Of A Boy that is completed…the missing piece of the puzzle.
After the first surgery, February 16, 2018, we received the news that the surgery succeeded. My wife and I were euphoric, in a happy place…like if we were the only three people in the world, in a place where time stands still and there was inner peace. We cried, hugged, started calling our family and friends with the good news.
That did not last for long.
Image 2: our hero.
The next morning, Riv Eli encountered every complication possible: lungs, liver, kidneys and he was not able to release the excessive fluids from his body/organs. And I can tell you, then you’ll become very, very humble. Completely out of control. You see your pride, your love, your everything fighting for his life, and there’s nothing you can do. At least, that’s what I thought.
Image 3: my beautiful wife, guarding his life. Look at his left hand.
For me personally, it was a major wake up call, that if he would get through this, I needed/wanted/had to change my life, how I treat others and above all, how I value myself. With hindsight, this was the moment I lost my ego and I realized I had a lot of work to do to become more like the boy I used to be. A boy that had a heart of gold, equal to the pureness I see present in my son.
I prayed to “God / The Universe” every minute of every day, even though I’m not religious. I cried for nights, when I was alone, back in my hotel while my wife was taking such good care of our son, in the hospital. Like Raphael, she was guarding him every minute of every day. We were split apart, but without realizing it at that time, we were also in a process of growing closer to each other.
Image 3: my view from the hotel room…..so close but so far apart.
And then the worst case scenario, that a parent is allowed to think about, happened: the patch in his heart did not function as it should, a stitch broke loose and our boy needed a 2nd heart surgery to fix the problem.
This was the final push over the edge for me (my wife stayed strong, as she often is, so much respect and appreciation I have for her). I stared in the dark, not knowing what to do, completely empty. I asked myself over and over: why him? Why us?
And when you ask, you will be heard. The answers came. Like the Niagara waterfalls, it’s unstoppable, and the best thing to do is go with the flow. Resistance is futile.
And during that week, I lost my ego. I realized I needed to change, in order for me and my family to keep things together. And now, in the midst of this process, and right after the 2nd heart surgery in a week, I’m so thankful for this 2nd chance we have been given.
Our boy is doing very well, a real fighter, recovering from this 2nd surgery and slowly becoming the happy boy he used to be.
Last Sunday, he showed his inner smile again, for the 1st time since 3 weeks. For the peeps that have kids of their own, you know that’s the best feeling ever. At the end of this week (March 8, 2018), we’ll have another heart scan, to see how the patch is functioning. But I now have all the faith in the world, that we do not have to worry anymore as his heart frequency is very calm (170 before, 110-120 now), his oxygen is at 99%-100% (was 70%-80%, sometimes even 40% when he was active) and his breathing rhythm is now as it should. And he’s smiling again, saying the small talk he used to do. And above all, we accepted the challenge, appreciated the 2nd chance we had been given and made our own spiritual progress. I can’t express how happy and thankful we are.
The reason I’m sharing this, is that the last 3 weeks changed my mind about life, how fragile we are and what I want to contribute to my family and the world. It was a very, very rough wake up call, but I’m grabbing it with both hands, and feet, even the heart is in on it ;))
So from now on, I want to share the message of my boy: love comes from The Heart (Of A Boy).
Only thing we need to do is: open up and see it, let it in. Embrace it, with every cell of our body, with every last drop of energy we have left. There’s no need any more to judge, feel misjudged or complain about all the stuff we do not have.
All we want and need to do is:
Open up to the world and the world will open up to you.
I lost that feeling, but it’s back, bigger and better as never before.
Enjoy your day!
The Father Of A Boy With A Beautiful Heart
ps 1. We will always remain thankful to Sira, the women that helped me waking up. Without her help, we would not be where we needed to be. Thank you Sira, from the bottom of our hearts.
ps 2. This is 8 days after the 2nd surgery….like nothing happened 🙂