Stories and Thoughts

From time to time, we'll share updates here: how things are going and how Jana is doing. And if you have any questions, we'll be happy to answer them.

You have asked how Jana was affected by the arrival of her little sister.

Well, she grew fond of her sister very quickly and got used to having her around. She gives her lots and lots of hugs and kisses, too. She looks out for her—if a toy or object that isn’t meant for her ends up in her hands, she immediately takes it away from her and brings it to us. She was very sweet to her right from the start—she’d bring her toys and stroke her back when she was sad. Now they take toys from each other’s hands, just like good siblings :))

They always greet each other with great joy and smiles.

How can we allow ourselves to question God?

We live in a sinful, broken world. Illnesses are a consequence of this. It is not a miracle that there are sick children, but rather that there are so many healthy ones.

We don’t deserve anything good. Being healthy is a blessing. It’s not the default. Yet we act as if we’re entitled to everything. But the only thing we’re truly entitled to is condemnation. Yet God is merciful, and He is present even in our hardships and illnesses. He grants healing—not always to the body, because that’s not what matters most; it’s the soul that truly matters.

I’m happy to report that Jana is interested in God; she really loves listening to Bible stories and praying. She has heard the Gospel in a way that’s appropriate for her, and I believe she has understood and accepted it. So it’s certain that one day she will receive a new body—one in which there will be no pain, no tears, and where every movement won’t be a struggle. And that is far more important than the present, which is just a few years.

We’ve been to quite a few medical appointments lately, since her episodes have become more frequent. We’ve visited the cardiology, neurosurgery, and neurology departments several times. And Jana is so brave and clever. She cooperates with the doctors and nurses. She lets them examine Shunti without a fuss (which used to involve screaming, even though it doesn’t hurt); at the cardiology department, she watched the monitor with interest and laughed when it tickled her; during the EEG, where the photo above was taken, she not only handled it skillfully but also cheerfully handed the little sponges to the nurse as they were placed on her head. We’re so proud of her!

It was a pretty difficult time, as we were dealing with new types of seizure; now we have to monitor her heart rate and oxygen levels as well. Seizures affecting her mouth and face are common, which can lead to her biting off or swallowing her tongue. That’s why it’s a little more stressful for us, too, and of course it takes a toll on her as well, since these seizures cause the most damage right there in her little head.

We adapt to new situations as they arise, trying to keep up and achieve remission—or at least a reduction in the frequency of seizures. God is with us, and He helps us in this as well.

Will she learn to walk?

We don't know where Jana's limits lie, since she has already surpassed what the doctors described. Her progress is ongoing. We remain optimistic about this as well, and we hope she will learn to walk—if not on her own, then with a walking aid.

One thing is for sure: in heaven, she certainly will! There, she’ll get a new body—she'll learn not just to walk, but to run and jump as well. It’s so sweet—she already knows this, and she’s looking forward to it.