A beautiful, balmy Summer’s evening the other Friday, myself and the husband decided to relax outside in our tiny urban garden and enjoy a glass of rose wine or two and cook some dinner on the BBQ.
It was lovely, sitting there as the sun went down, listening to the birds tweet in the trees, drinking our wine, watching our steaks sizzle on the BBQ, letting a hard week be washed away by a feeling of contentment.
“BEEP BEEP BEEP BEEP BEEP BEEP BEEP!!!!!!!!!!!!!!!” emanated from the baby monitor. The chilling sound of Marigold’s Snuza alarm which goes off when she is not breathing.
Wine glasses cast aside, steaks forgotten, we both raced up the stairs with our hearts in our mouths and mobiles in hand, ready to call emergency services if we needed to.
Of course, Marigold was absolutely fine. It was a false alarm. Although her peaceful slumber may have been slightly shattered by us frantically shouting “Marigold? Marigold?” on loop in her sleeping face and shaking her awake to check she was still breathing.
Back down for our lovely, relaxing outside BBQ we went, with me feeling like I was going to throw up, still shaking with the physiological response to hearing her alarm go off and imagining the worst about what sight might greet us upon running into her room.
Back in our tiny garden, the husband said gravely: “I think it is time to get rid of the alarm.”
But I have a secret. I don’t think I am ready to give up the alarm. I am horribly addicted to the alarm. We have a co-dependent, toxic relationship where I know having it on Marigold provides me with the peace of mind that she is still breathing, but then I spend half my time on tenterhooks waiting for it to go off. And if it does go off it easily ruins a nice relaxing BBQ evening or an entire night’s sleep.
The alarm was our reaction to Marigold’s major apnea episode. When we got back from our week in hospital, she wore it 24 hours a day. We were hugely dependent on it. Even though we were assured the apnea episode had probably been an extreme response and was unlikely to happen again now she was on medication, it provided us with a much needed security blanket. Gradually, only after about six months, we weaned ourselves off having the alarm on her in the daytime. But the alarm on her nappy is still very much present at night and despite the recurrence of many false alarms recently, every one of which I think shaves a year or so off my life, I can’t give it up. Not just yet.
Because having a child with a medical condition, in Marigold’s case, a unique genetic condition (mosaicism trisomy 3q11), the worrying about their health never, ever goes away. It is lifelong, as is their condition. With Marigold, (although arguably you may say this of a typical child as well of course) you never know what might be round the corner.
So for the moment, the alarm stays. And hopefully one day soon, when we are all feeling stronger, we can wean ourselves off .
One day soon.
And almost definitely before she turns 18 😉