#polymicrogyria

[museedu]

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.

taglist: @radiomogai @wsys @mwamymelody @bryanmcfnaf @hopefulwand @sedenvy @goregender @emailmeurheart ask to be added

[pmgawareness]

Despite the Corona virus pandemic, we were reminded today that there are good people out there! Our son, Sean, was born with a rare brain malformation called Polymicrogyria (www.pmgawareness.org). The disorder leaves him with many challenges including being nonverbal, but it does not stop him from his passion which is cars...loud cars...preferably with four tailpipes. Today, we would like to extend our heartfelt gratitude and appreciation to Russ Taylor, Hunter Swift, Soren Swift and the entire Skittlez Squad Exotics group for their drive by this morning for Sean. They put together a very large group of amazing individuals to drive by our home. They revved their engines up and put a huge smile on my son's face! They even handed him a few gifts! The last six weeks have been very tough for him with his world being turned upside down due to the virus. Sean is extremely social and finds such joy in going to school and being with his friends and teachers. He doesn't understand why he isn't going, why he can't see his friends and teachers, and why we are staying away from family. So we want to thank them all so much for their kindness and compassion and for blessing my son in this way today. It will be something he will remember always! Hoping the video I uploaded comes through so everyone can see how amazing these people are!! Check it out here! https://1drv.ms/u/s!ArOwqEN6Qrw4lGzr0tlaCsKbnBjf?e=T1hoR8 To learn more about my sons disorder (Polymicrogyria), please visit our website at www.pmgawareness.org. You can find us on Facebook at PMG Awareness Organization, on Instagram at pmgawareness and on Twitter at @PMGAwarenessOrg #pmgawareness #polymicrogyria #PMGA — with Rick Hudson. https://www.instagram.com/p/B_c31L-JJ_9/?igshid=11mpddoha1rbe

[shak3rmaker]

had a seizure last night and now my. head hurts 💔

[herunswithscissors]

I've written about my daughter before. How she is basically bedridden from seizures every few minutes. We got a really top notch team working on her from Stanford Children's Hospital and we have slowly been making progress.

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.

Now, it's not quite completely seizure free and back to "normal"- she still has very occasional seizures in her sleep plus the meds make her sleep a lot during the day, but she has been able to walk around and be a lot more independent without fear of falling. And without getting her brains scrambled every few minutes, she is so much more with it and her personality is able to come out more. We have been so happy with this development and a huge weight has been lifted.

[mourningparlor]

my brain is like. wrinkled

[troyssix]

when you struggle w/ something that is so painfully under-researched and you dont know if What's Happening To You is like. symptoms or if you're just being weird

[troyssix]

oh for pmg to be more studied and talked about about so that i can actually understand myself

[susanbednar]

Someone called me a helicopter mom last night with all the malice and anger of calling me a bitch. I’d rather they have just said that; it would’ve been about me as a person and not about their resentment of my relationship with someone else.

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.

Those who know and love me (and him) get it. For those who don’t, may you never face the adversity we have, and be grateful.