Hemi What?!

On July 15th, 2018 our beautiful daughter was born. She was premature by a month due to preeclampsia which caused danger to our daughter as well as mom. We’d already been to the hospital regularly since we participated in a research program but also because previous to our firstborn, we had a miscarriage. This led to some trauma which could easily be diagnosed by the panic attacks I had during EVERY checkup, scared of not hearing a heartbeat or some other bad news.

Eventually we got bad news in that the condition (preeclampsia) of my girlfriend was becoming endangering to her and the baby. Needless to say, I was full on panic mode inside but rather calm on the outside. I’ve always realised that my presence was of great influence on my girlfriend and therefor the baby. So I swallowed my anxiety for another day (and trust me, that day came).

From this point on we were told to come back to the hospital every week and eventually led to us being told she had to stay under constant surveillance. Not a good sign usually. When after a few days in the hospital my girlfriends vital signs were severely affected, they decided to help nature a little bit and get our daughter the fuck out of there.

At the moment of her birth, I collapsed. She was doing so well and nothing seemed out of the ordinary. Even her weight was higher than expected. But I just prepared for the worst and the moment I saw her hair I just broke. Even as I write this I get emotional because the sensation was so overwhelming that part of it always seems to stay with me.

We were asked to stay because even though she did so well, there was still risk involved for her and the mother. Who was insanely affected by hormones and wanted to leave really badly. Fortunately the doctors stood their ground as I tried to convince them not to let her go yet. And so it went. We stayed and all seemed well. We went home.

Fast forward to a few months where we started to notice how she did not meet her milestones (sitting, crawling, etc.). In no way did I compare her to anyone, because I don’t care. But eventually we did decide to check up on her and ask a doctors advice. This started a bureaucratic rollercoaster of appointments. Where one specialist would say one thing and the other would say another thing. Time went on and it became clearer by the week that something was wrong, because she was still not crawling and we also noticed her left hand being clenched a lot of the time.

Then the day came. She had to go up for an MRI which meant general anesthesia. I was gutted. She was so small and so scared of other people. And now we would go and hand her over to doctors that would put a mask on her face to make her ‘sleep’. The actual day where this took place is one of the worst days of my life. I can’t explain. I felt so bad. It felt so unfair. Even the waking up was a fucking disaster because they told us that she’d not wake up before we were there but, she did. And she was in a total panic when we arrived. I was ready to fuck up the whole hospital, but realised that would get my daughter nowhere nor did I help my girlfriend. So again, I swallowed my anger for another day and focused on being present for my family.

Now all we had to day is wait..

And then came the call. At first they thought of a tumor in the brain that affected the right side of her brain (hence the problem with movement). I was shattered but my girlfriend broke into a thousand pieces so I wanted to be there for her and waited for the rest of the diagnosis. Which was a good thing, because it was NOT a tumor but she did had a stroke before she was born. This led to so called periventricular leukomalacia. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates “holes” in the brain. “Leuko” refers to the brain’s white matter. “Periventricular” refers to the area around the ventricles.

Simply put: there is scar-tissue in parts of the brain where there should be neural pathways. Pathways that allow us to move the left side of our body. With our daughter, this is damaged.

Even though this lightened things up, it is hard to ignore the fact there is something ‘in’ your baby girls head that is threatening the brain. I wasn’t ready to lose her now, but also not in twenty years! So now what?

Fast forward again, she got diagnosed with cerebral palsy (do realise this can vary A LOT in severeness and our daughter was on the mild side of the spectrum). We were slowly getting introduced to the idea that she would forever have some sort of disability but that it was hard to predict how severe this would be because there is such a thing as ‘neuroplasticity’. This little piece of science is discovered very recently but basically says that the brain is capable of making new pathways. This is done by endless repetition and forcing the brain the find new ways to use all the limbs and so on. Even better was the fact that with young children, this process is way more efficient than with adults who suffer a stroke. Still, what can we expect and how will it affect her life?

Which brings me to the essence of this blog. Because, even though I will probably write more in-depth about the various treatments we went through and hospital visits, there is one thing that I’ve learned and that I want to share. Two weeks ago our daughter turned two. Two years since have passed since that moment I broke down to my knees upon seeing her hair for the first time. And I get it now. I just want her to be safe and happy. Always.

Her condition (call it whatever you want: cerebral palsy, periventricular leukomalacia, hemiparesis and what not) will affect her happiness and sense of safety. But to what extend is partially within our control. She is making steps now, walking around the table and pulling herself up. She talks barely but is always communicating with sound and expressions. She is way behind on most of the milestones. But the thing is, she is happy. So happy. And that makes me happy. And all the comparisons in the world would not make me less happy if it did not affect her. And beyond that, I feel that this situation has forced us to be so grateful. I hardly meet people that remember vividly when their daughter first sat up straight by herself and even if they did, they usually take every time after that for granted. I still cheer and clap whenever she pulls up, even if it’s her 1000th time doing it. I’m still so happy that she can now. And you should see the look on her face when she pulls something like that of. She radiates pride.

So what was I trying to get across with this blog? I don’t know. Maybe I feel like sharing these things can help other parents with dealing with similar situations as reading other stories help me as well. Maybe I just wrote it to get it off my mind. I can’t really tell you.

All I can say is that if you are ever in this situation, find joy in your child’s joy; find happiness in their happiness and always realise that as long as you are proud of them, they are proud of themselves.

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