#polymicrogyria

/pt: polymicrogyria. end pt/

a flag for polymicrogyria (PMG). see notes under definition for some notes on the flag and symbol + their meanings.

"Polymicrogyria (PMG) is a condition characterized by abnormal development of the brain before birth. While a baby is still in the womb, brain cells called neurons are migrating to where they are supposed to go. For some reason, the neurons become disorganized and land in the wrong places. The surface of the brain normally has many ridges or folds, called gyri. In children born with Polymicrogyria, the brain develops too many folds, and the folds are unusually small. The name of this condition means too many (poly-) small (micro-) folds (-gyria) in the surface of the brain.

The area of the brain involved by the polymicrogyria typically does not function normally. The impairments depend on what parts of the brain are involved and how severe the deformity is. Sometimes polymicrogyria may affect only a portion of one hemisphere, but at other times can affect one entire hemisphere or be seen in both hemispheres. If seen on both sides, sometimes the changes are quite diffuse throughout the brain but at other times can affect a predominant region of both hemispheres (such as bilateral perisylvian polymicrogyria)." source (link)

we went searching for a few different sources of inspiration and previous awareness symbols for pmg. pmgawareness.org (link) was the biggest and only one we found, but we didn't like the idea of the brain and key symbol for pmg. it also seems to be used more so as a logo for the organization.

due to this we settled on creating our own symbol for the flag, only really keeping the pink that the PMG Awareness Organization has used. the symbol represents the brain and its ridges / folds being smaller and having too many.

the stripe meanings and colour choices are reminiscent of what we've seen specific colours signify in vexillology, the PMG Awareness Organization's ribbons and symbols, and our personal synesthesia. we were debating putting specific symptoms in the meanings but didn't as to not alienate anybody.

the flag stripe hex codes top to bottom: #7f1f1f, #c75180, #e9d1f3, #607cb9, #441f7f. the symbol hex code: #da2f6e.

resources for dealing and learning about pmg can be found here (link). thank you to the PMG Awareness Organization for being our only reference to look at for past symbolism.

I have been wanting to write this post for some time now, but I keep waiting for something to go wrong. I think it is finally time to share the good news:

It has been over a month since my daughter has had a seizure!

We finally found the right mix of diet, surgery, and meds thanks to her amazing team at Stanford. Sometimes God heals with miracles (like her heart), so much more often God works through the process. Either way we praise God. And we thank our friends and family for their support, prayers, and well wishes. It meant so much to us.

No one expects to be a helicopter mom - or a parent to a child with unique challenges, as I prefer to frame it. Did I want 107 days in the NICU? Did I want to spend the first five years of his life dragging him to physical, occupational, and speech therapies weekly? Did I want my child to always be separate and different? No. No parent does.

But that’s what it is. The amount of effort it takes to get him ready each morning is exhausting. Executive functioning is a challenge. Every small thing is a big thing, and some days I want to quit. That’s not an option. No matter how tired I am, no matter how stressed, no matter what else occupies my mind, I have to prompt him through his activities of daily living.

And it’s not just me. We wouldn’t have gotten this far without the love and support of my parents, whose primary role is now that of his grandparents. Our regular caregiver. His team at school.

More than anything, I want to be a regular mom. But I will never be; I can’t be. And I’m not complaining - I don’t know any different so I have nothing to which I can compare it.

I parent as I parent out of necessity, not from a desire to dedicate myself to helicoptering.