Roller-Coaster

We’ve had a few days of joy and happiness. We enjoyed our baby and did not spend much time on thinking of her down syndrome. You could call it denying reality, accepting reality or not knowing, what reality is.

We are determined to help our baby as much as possible to make the most out of her mental and physical potential. When we as humans only use 10% of our brain, why shouldn’t our baby be able to use a little more to compensate for her genetic handicap? When Arnold Schwarzenegger could become Mr Universe after being mocked as a weak boy, why shouldn’t our baby be able to train her muscles to compensate for her genetic handicap?

During pregnancy I was playing with her and trying to get a reaction to my voice and touches. She did — at least I fantasized. I now talk to her a lot — and I imagine she is reacting to some words from me specifically. I help her learning to use her hands — and she seems to enjoy it. She mainly pees during changing the diapers — very smart girl. Or as cleanliness obsessed as her daddy is.

Friends who visit us, don’t see anything. Either we don’t mention it and they don’t bring it up. Or we mention it and they say, they didn’t see anything. Probably only very polite or embarrassed friends — or not connecting the dots. That at least reinforces the happy bubble we are living in.

Glimpses of reality

The mid-wife is unhappy about the weight. Our baby should have gained at least her birth weight back — but she hasn’t. We visit the pediatrician the first time. She didn’t get the report from hospital yet. During her first examination she asks diplomatically if all check-ups during pregnancy were positive. We tell her that we know that our baby has down syndrome. Of course, she has seen it immediately from the face. Of course, our baby has a softer body tone. And she still has jaundice that makes her weaker — additionally to being a pre-term baby and having down syndrome.

We have to feed her with formula every 2.5 hours, day and night. More or less force feed her. It’s heartbreaking to wake her up after a short sleep. It feels like torturing her for more than one hour that she eats the absolute minimum. One hour every 2.5 hours! When does she sleep? When do we spend time with her without forcing her not to fall asleep?

We start to realize that “special needs” is not only a politically correct term for down syndrome. She actually will have special needs because of her condition. And it’s already draining energy out of us. You tell yourself: Well, all parents experience the same. Now it’s our turn. Yes. But. Is it objectively harder because of down syndrome? We don’t know. But it feels like — even if it’s only the realization that she always will have to struggle and make the extra effort. Her whole life!

Doubts, if we can make it. If we have the strengths to give her what she needs. If we can provide this for the rest of our lives. It’s not a sprint. It’s not a marathon. It’s a live long expedition. It will get better, right? She will develop. We will develop. Of course. But what, if not? What, if it even gets worse? What will it do to our relationship? Will we have enough time and energy for ourselves? Is it self-pity? Is it sleep deprivation? Are these questions normal?

And total joy

The moments of total wakefulness compensate for all the questioning and doubts. When she looks into your eyes, you are taken by the moment, by the love. It warms your heart.

We love her. We will make her strong. She will make us strong.

Next: The unusual usual.

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