I belong to a few support groups, one in particular being a Facebook group for Pierre Robin Sequence awareness. A question was posed today:
A question to parents with older PRS kids. what has having a child with PRS taught you, how has it changed you as a parent/person?
So here’s what I’ve learned, as the parent of a child with Pierre Robin Sequence.
You can deal with anything
Let me tell you, tubes are scary. But even the scary things like tracheostomy changes and suctioning will become like second nature. But if you think we were scared, just imagine how our extended family felt. My brother-in-law refused to even hold Namine for the longest time. He repeatedly said, “No way. I’m afraid I’ll break her.” But he came around too.
You need a break
Not everyone is so lucky to have the support of family, I know, but if you have support, use them. You’ll run yourself down quickly if you refuse help.
Babies dislike being dressed as chili peppers
This one is self-explanatory.
You will spend holidays in the hospital
But you won’t mind. You adapt to your family’s needs, and take the joy with you wherever you go.
You will become a zombie
Maybe not literally (I guess that was just me). But you will lose sleep. Hours and hours of sleep. But that won’t matter, because your child’s health is all that matters. You will make sacrifice after sacrifice, all in the name of keeping your child safe, but every moment is worth it. I promise.
You will taste delicious
If, you know, you’re foolish enough to let your fingers anywhere near your teething child’s mouth. Seriously, don’t do that.
It will be messy
Not everything will go your way. There will be moments of mega stress, times of pure hell-on-earth panic. I remember the night Jessica sped to the hospital, with me in the back seat give Namine breaths with the respirator bag. We feared for Namine’s very life that night, and it’s one I’ll never forget.
It will change you for the better
The life we have as parents is a lot harder than most. But we don’t give it a second thought – the life we have is ours, and ours alone. Pierre Robin Sequence has given Namine more challenges, but it has also given her compassion, kindness, opportunity to grow. It has made her a hard worker – and she has seen the benefits of her labor.
It has changed us – all of us – for the better.