On Sacrament and Sound Effects

Hello friends!

Arthur has developed a condition called Laryngomalacia, defined by Wikipedia thus -

Laryngomalacia (literally, "soft larynx") is the commonest cause of stridor in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction.

Essentially what it means is that Arthur now breathes with a very loud wheeze. He does this all the time, apart from when he's feeding, drowsy or asleep. Apparently it doesn't hurt him as it's just his larynx moving as he breathes, but it sounds very much like he's gasping for breath. It's not dangerous, and therefore doctors rarely offer any treatment. It comes on typically between 6 and 8 weeks (Arthur was 7 weeks when it started) and tends to go away by the time the child is 2 years old.

Let's face it, given that he's at high risk of developing both hydrocephalus and kidney damage, you wouldn't have thought harmless noisy breathing would be much of an issue. But it's really getting me down. Laryngomalacia isn't at all related to spina bifida, so I'm inclined to think "hang on, this isn't fair, haven't we got enough to deal with?" but that's just selfish and I know it.
 
The one nice thing (if there is a nice thing...) about spina bifida is that it isn't obvious. This sounds slightly odd coming from me, because I'm not ashamed of his disability, but hear me out... It's been wonderful to just be able to walk round town and for people in shops to say "oh what a lovely baby." And I get into a bit of a conversation with them and don't even have to mention that he's disabled. Now people tend to say "oh dear... is he ok?" and the conversation is completely different.

What  we're really worried about is church.

Last Friday Arthur threw a huge wobbly in church (screaming, not wheezing) and Paul had to take him outside. Having to take a crying baby outside is just one of the realities of taking a baby to church, and it's fine. But Arthur now wheezes for much of the time he is awake and it's very loud - Paul and I sometimes struggle to have a conversation over it. Church is such a difficult one because, ideally, everyone should be able to go to church. After all, we wouldn't ban people with learning difficulties who make spontaneous noises.

But the reality is that people like silence in church. It's about finding peace, and we often like quiet to do that. A child who screams and is swiftly taken out by a parent is one thing. A child who wheezes loudly with every in-breath is another. And even if people say they don't mind, it stresses me out. that he's being so disruptive

I'm not sure if I'm going to take him to College Eucharist tonight or leave him here with Paul. Depends if he's asleep I suppose.