This is for sure the most honest, personal and vulnerable post I have written to date. This year we received the wonderful news that my wife Intan is pregnant. We had not been trying for very long so it felt like a huge blessing that it worked out so quickly. I’ll never forget when and how she told me. We were supposed to be taking the test in the evening, after she got home from work. I was working from home, so I wanted to get some fresh air at the end of the day. I took my race bike out for a ride and missed many calls from Intan – double digits. I called her back and so I found out somewhere in the middle of nowhere. I was thrilled and so happy for the rest of the ride – and the weeks after.
It’s a big contrast with the moment we found out that our daughter’s future might look very different from how we had pictured it. We had our 20-week echo, which is a bit more medical in nature, in the Amstelveen hospital instead of at the midwife. The sonographer told us she could not see everything she needed to and referred us to a gynaecologist and children’s cardiologist in another hospital. Not very comforting, but we didn’t think too much of it. Actually, our thinking was that the sonographer didn’t feel that comfortable with the ultrasound and it just didn’t work out. Maybe our daughter was just not feeling up for it.
A couple of days later we went the AMC, a hospital in Amsterdam Zuidoost. A gynaecologist took a good look at Intan’s belly and she confirmed the concerns of the sonographer. She was afraid that it would be a heart disease called Hypoplastic Left Heart Syndrome. HLHS is a congenital heart disease and basically means the left side of her heart and her aorta are severely underdeveloped. Her left ventricle is barely present. She needs three open heart operations to ensure she can live her life with half a heart – which will heavily influence her for her whole life, unless a miracle happens. That was a huge shock. It felt like the expectations that we had as parents-to-be moved from firm ground to shaky ground, or maybe even quick sand. It felt like all the dreams we had been talking about in the last four months we being ripped from us. As if 2020 didn’t bring uncertainty enough already.
I am writing this ten weeks after learning that our daughter has HLHS. We don’t know whether this is a story with a good ending or a story with a bad ending. I considered holding off writing until after, but I think the story sometimes changes once it’s concluded. A journey feels different once it has ended. When you look back, it’s sometimes like you forget some parts of the journey. Or you tell yourself a slightly different story afterwards. It feels different when you are still in the midst of it all. So I wanted to write now about how we are dealing with this adversity, what’s helping us.
We don’t isolate and we lean on close ones
I think that when times get tough, we tend to isolate. That is a natural reaction – it feels safer. It was our first reaction as well. However, we did immediately tell some of the people closest to us – parents, siblings and some of our closest friends. They were amazing in the first number of days. I mean that in a practical way. We were so down, it was helpful not having to do our own groceries and preparing our own dinner. We still went to the grocery store and spent some time in the kitchen, but it was to have some distraction and not because it necessary. This helped a lot. If you ever need to help a friend who is down, do something practical. Get their groceries. Clean their house. It helps.
The other reason it was helpful to not be silent about it, is because it was hard believing for the best outcome initially. Sometimes it still is. It helps having friends who can believe on your behalf. Sometimes it’s easier to believe on someone else’s behalf than it is to believe for yourself (we do believe and trust though). It helps having people that pray for you and encourage you, without being naive to your emotions. Our daughter is not a lost cause; she has a shot at living a good life. However, we don’t know the outcomes and that affects us. We have good days and bad days emotionally speaking. On the good days we believe it will end well, but on the bad days that is hard to believe. This is why it’s important to be part of a community; so you can celebrate the highs and be supported through the lows.
We support each other
We are both blessed with really good and understanding colleagues. So the first week after getting the news, we didn’t have to get our heads into work. We were able to take time, feel, be there for each other and process. We didn’t have to do anything really. We just processed, together, but also by ourselves, in each others company.
We pray for each other more frequently than we did before. We need to carry each other in prayer. Like I said before, it’s a bit easier to believe for someone else sometimes – so we believe for each other.
We try to enjoy this season and we take it a day at a time
We don’t want to be robbed of all the fun things pregnant couples do. And we don’t want to do all of them with a heavy heart. So we do photoshoots. We try to enjoy the shopping for all the baby stuff. We enjoyed preparing her room. That was hard sometimes because we had to fight the thoughts of that room remaining empty. The fun moments can feel like we are pretending there isn’t some big problem, but still I think it’s important that we do them.
One good friend advised us that we should try to enjoy the pregnancy as much as possible, because we might not get more time with her. That sounds incredibly confronting and upsetting, but we understood what she meant. If she doesn’t make it, we don’t want to have spent this pregnancy depressed. We want to have enjoyed the time with the three of us wherever possible.
I am a scenario thinker and could spend all my time playing all the possible outcomes and scenarios in my head. I am not going there in my thinking. Because we simply don’t know. For now, we are believing for the best, preparing for both the best and the worst and we are trying to enjoy the day that is right in front of us.
We don’t lose hope
It’s a weird season to be honest. We have had to adjust from a care-free pregnancy to a worrisome one. We live in a season that is uncertain. There are more hospital visits and check-ups and worried doctors. There are diagnoses that are ruled out and others that cannot be ruled out. A baby’s heart is complex, small and therefore it’s difficult to see what the actual situation is in some aspects. Some visits we don’t get bad news, which is a good thing currently. But it’s not hopeless. We have hope. We believe that a good outcome is possible. Our feelings don’t always align with that hope and belief and that is okay for now. We have hope and believe for the best.