To Parents with Kids like Mine

Dear Parents with kids with my daughter’s condition,

How would I live without you? Today is a difficult day, Wawoo is sick, I’m tired, my mind is at its wits end. This is a vent I posted on a FB page for families who deal with my daughter’s condition, Kernicterus.

“I’m hiding in my bathroom for a few minutes of blessed silence. Actually the exhaust fan is on drowning out the noise beyond the door, which is the same thing as peace right now. Radhika had a cold all of last week and part of the week before. Fevers, stuffy nose, etc. She went to school all this week, well on her way to being better. Then the weather changed yesterday and she woke up completely stuffed up and feverish at 1 am. I nearly lost my mind. I woke my husband up and (I don’t clearly remember this part) ranted about reaching my limit and take your kid and I’m sleeping. Something along those lines, to his eternal credit he simply got out of bed and squeezed my arm and took her to another room. Then I’m up at 6am to take over. The sound of swollen adenoids and mucus and stridor, the clashing of teeth as she attempts to the clear the mucus while swallowing, the inability to breathe through her mouth and subsequently, the sound of strain as she forces air into her nasal passage and finally at the end of the breath inhaling through the mouth, is enough to put me in bedlam. I’m serious, at this moment I might lose my mind. I. Can’t. Deal. With. Another. Day. Of.This. Shit. Seriously. I just needed to put it out there. I just need a break for more than a few days, I need a break from illness.
Rant over, thanks for listening.”

The outpouring of empathy, love and understanding from other parents going through the same situation was a balm for my ravaged heart. They live my life, my love, my anguish, my happiness and my insanity. They commiserate, they crack jokes, they support, but most importantly , they tell me it’s ok to feel like this , in this moment. They remind me it will pass eventually. Not to say I won’t be right back in this situation in a week, a month, a year, but that I will get a break at some point.

This is so essential to us parents. We need to know that someone knows what our life is like and that they can truly empathize. Sometimes, that is enough to get us through the day. We need someone to laugh with us at the absurdity of the situations we find ourselves in constantly. Some of these people I have never even met in person, some I will never meet, but we are connected in a way that goes beyond time and space. We are connected by our love for our children. We are brought together by the very conditions we hate.

In case people were worried, I had a good sob after this vent and then swapped off with my husband for an hour of relaxing in the bath with lavender and chamomile oils, soothing music and the blessed exhaust fan on full blast.

I am ready for the next day, as my new motto states:

This too shall pass….

and then come back…again …and again …..and again…..

But, I will have my special parent buddies to help me through. ❤