Originally a CaringBridge post. Link to original post is the date.
6 months pregnant. 25 weeks down. 15 weeks left. Each week I keep wondering how am I already “that” far? How have I already had 25 weeks with this little girl and yet feel like only days? It’s not fair. I’d like time to stop so I can catch up. Too bad life doesn’t work that way. Grr.
Today Aerilyn is bouncing around and shaking my belly a whole bunch. There’s no denying she is an active little girl. I have to try to experiment soon, let me explain. Yesterday I wasn’t feeling well and Kanin decided to give my belly a “check up” like Doc McStuffins. It was absolutely adorable, he used a stethoscope, rubs my belly and even scratched his head saying “hmmm” all inquisitive like. Freaking hilarious! The last part of my “check up” was using his flashlight to look at me. Aerilyn kicked right where he was shining the light. I’m not sure if it was happenstance or her actually reacting to the light, either way, I need test it out. Most anencephalic babies are born blind. If she were reacting to the light, that means she might not be. That would be amazing and even more proof she is special and beating the stereotype afflictions for this NTD. So, when I get a chance to sit down and play with her, I’ll be testing out the light theory. Stay tuned for that news. Aside from that, she is doing really well. Active, keeping me awake and constantly hungry. I couldn’t ask for more at this point in time.
I had a conversation today that got me thinking. We talked about heroics, being brave and what constitutes them. Long story short, I said I believe military members, firefighters and the like are brave and heroic. They sacrifice themselves with not much gain. They’re willing to give up their lives if they must, to protect others. In Washington State, there’s currently massive wild fires raging throughout the state. Recently three firefighters died trying to save homes and contain the fires. They were brave and heroic. I also said burn survivors are as well. They’re shoved into a situation they had no control over. Losing body parts, their faces, smooth skin… you name it, people who’ve been burned have all sorts of obstacles. They don’t choose to go through the pain, scars or the ridicule that come from insensitive, ignorant people. They are brave and heroic. All that lead to the person asking me if I thought I was brave or heroic since I have been burned. Nope. I don’t. Not even in the least bit. Why? Why do I consider all these other people to be but not me? I have no clue. Maybe I’ll figure that out soon. Then she asked if I thought I was brave or heroic for choosing to carry to term with Aerilyn. Once again, I said no. I’d sat there an advocated for all these people but couldn’t see myself as one of them. As I just stated, maybe I’ll figure that out soon. Until then, I can tell you who I do find brave and heroic in my current life, in this current situation. Below is a list of some babies who have/had anencephaly/acrania. Their parents who advocate/d for them and who suffer from their loss or potential loss. These are their websites, blogs of Facebook pages.
Saoirse Elizabeth
https://www.facebook.com/groups/399825543522977/?hc_location=ufi
Jacen Lucas
https://www.facebook.com/pages/Jacen-Lucas-My-Anencephaly-Warrior/224511634385951
Joy
Www.facebook.com/anenjoyhubb
Brielle Marie
https://www.facebook.com/lovingbrielle
Presley
https://www.facebook.com/BabyPresley
Oliva Elise
https://www.facebook.com/BabyOliviaElise
Phoebe Ann
https://www.facebook.com/knowingphoebeann
Bella Marie
https://www.facebook.com/groups/873666486049960/
Luca Charles
https://www.facebook.com/lucacharlesgagliano
Braelynn Elexis
Www.facebook.com/prayersforbaby
Jesaiah Alexander
https://m.facebook.com/Jesaiahlettersoflove
Marley Jane
https://www.facebook.com/MarleyJaneAnencephalyAngel
Angela
https://www.facebook.com/ourbabyANGELA
Joel Ahmed
https://www.facebook.com/JoelAhmedAguero?hc_location=ufi
Arabella
http://3-strandedcord.blogspot.com/
Colin
Carryingcolin.com
Kolton
koltonsagesanchez.blogspot.com
Gemma Madeline
http://www.caringbridge.org/visit/tirens
John Raphael
http://johnraphaelpaniagua.memory-of.com/About.aspx
Eliana
www.caringbridge.com/visit/babygirlsinouthasy
And so, so many more….
As rare as anecephaly is, there’s still a large group of us that have been inducted in its “fan club”. So do I consider myself brave or heroic? No, not yet. Maybe not ever. However everyone else who’s going through or have gone through what we are, are. Not just anencephaly, but anyone who’s lost a child.
15 week count down….
