I’m a POLP. Now you won’t find the definition of that in any dictionary, and you probably have never heard the word (acronym) before. Neither had I…until after that surprising, magical day of December 8, 2011. But I am one (a POLP, that is) and I will always be one. I’m a parent of a little person.
It’s kind of amazing really. This whole community of people; ready, willing and eager to welcome you to their club and to make you feel at home right away. So at home, that you somehow forget that you were once never a member of this club you previously didn’t even know existed.
Support, resources, questions answered. Invaluable knowledge sharing. You see, us POLPs are pretty amazing. Without any forethought or studying required, we are suddenly the expert of our child’s medical team. We all of a sudden have associate degrees in neurology, genetics, orthopedics, respirology.
We don’t live in a major centre and most of Declan’s care providers have never before had a patient with achondroplasia. We have received really great, proactive care so far, but I have also done a lot of footwork and gathered the necessary information and armed myself with plenty of questions. Sometimes I feel like I get the ‘oh right, so you read what on the internet?’ shaft. But really, us POLPs are our children’s best advocate for proper care and sometimes that means I get my best information from other POLPs who have been there, done that.
At times I think I might be a bit overprotective and overbearing, but when it’s your child and you know what could happen, I think it’s only natural. The LPBC family lost one its young members earlier this year and learning about that story, it only reinforces those natural instincts. I’d be lying if I said I didn’t go in and place my hand on his back while he’s sleeping at night. Yep, still breathing. We had a scary incident when Declan was 6 weeks old. They called it an ALTE (apparent life threatening event). It involved an ambulance ride to the hospital in the city and a stay in the PICU. Let me say that you never want to walk through the doors of a hospital rushing and following behind a stretcher that your tiny infant is strapped upon.
It’s not fun knowing that young children with achondroplasia have an increased risk of SIDS. It’s not fun knowing, when your baby has to have anesthesia for a brain MRI, that it’s more difficult to intubate people with dwarfism. It’s not fun knowing that vomiting is a sign of spinal cord compression. But we, us POLPs, we know because it’s our job. These are our babies.
Thinking about and feeling grateful for this wonderful community that I was born into less than a year ago. And sending healthy, healing wishes to one of my POLP families whose little guy is at Children’s hospital with pneumonia. Hope C is feeling better very soon!