Today marks a very special day to me and many other mothers around the world. It’s Anencephaly and Acrania Awareness Day: a national day dedicated to this defect that claims so many lives. It also marks five months that I’ve been without Aerilyn. Considering all of this, I thought it appropriate for me to share Aerilyn’s story.
By: Nicole Miller
1. How long has it been since you gave birth/been diagnosed?
It’s been exactly five months since I gave birth to Aerilyn.
2. How and during what stage of pregnancy was your child diagnosed? How did you react?
On May 26th, 2015 at 12 weeks and 5 days we went in for an NT scan. This scan is typically to determine if a baby has Down syndrome or a different type of birth defect. There, we were told the baby had Anencephaly. At first I let our sonographer go find my doctor, I didn’t cry while she was in the room. As soon as she left, I broke down and cried.
3. Do you know what caused the defect for your case?
After doing our genetic testing, they said our event was random.
4. Did you ever consider terminating? Why didn’t you?
I briefly considered it, maybe for a few minutes at most. I had already felt that precious life in my body move, I couldn’t think of giving it up. But I wouldn’t make the full decision until I talked to Josh, who agreed with me.
5. Would you change anything about your experience?
I would entrust my friendship to other, more reliable people. I’d make even more memories and bond with her more than I did. However, even after all of the heartache, I wouldn’t change her for the world.
6. What was your favorite moment while being pregnant?
My favorite moment while pregnant has to be when we were in Hawaii. It was our last night there and we’d been swimming at Waikiki Beach, it was getting dark and I floated on my back and watched the sun start going down. I felt her kick and squirm and knew she was loving the moment as much as me. I’ll cherish that brief moment of just her and I forever.
7. What was your favorite part of meeting your child?
My absolute favorite part of meeting her was the peace that surrounded her. She lit up the room and made everyone feel and cherish life.
8. Is there any special meaning behind your son/daughter’s name?
Aerilyn was suggested by a friend of mine, who I can’t thank enough, and Grace is from my mother’s side. It’s the name of a great-great-grandmother.
9. If you could tell anyone anything about your child, what would it be?
She was a person. She was alive. She deserved the life I gave her and she is more loved than you could possibly believe.
10. Birthdays!! How long did they live? Born sleeping?
Aerilyn was born December 15th, 2015 at 3:42PM and lived for 37 minutes, she didn’t take a single breathe and laid on my chest the entire time.
11. Do you belong to any support groups that have helped? Any that didn’t?
I belong to Anencephaly.info group on Facebook as well as a few other grief groups. I haven’t encountered any groups who’ve made things more difficult.
12. What were your most effective coping mechanisms?
Therapy has been the best coping mechanism for me. Being able to talk to her and not feel judged or wrong has been amazing. Music has helped, as has writing this blog. This Awareness segment has done more for me this past month than months of grieving with no direction.
13. How did it affect your relationships; marriage, family and/or friends?
I learned who were my real friends through all of this. Who really cared and who were able to put aside any indifference, and be there for me no matter what happened. I can’t thank them enough.
14. How do you want them to be remembered?
I want Aerilyn to be remembered for he spunky personality. Her love of banana splits and chocolate cake. Ultimately be remembered for a determined fighter she turned into and who made me a better person.
15. What’s your favorite keepsake?
My favorite keepsake is a blanket she was wrapped in in the hospital made by an amazing friend who was backed by an even better group of ladies.
16. What do you want everyone to know about Anencephaly/Acrania?
Anencephaly and Acrania happens. It doesn’t discriminate and when you least expect, it hits. You can do everything right and it can still happen. Take your folic acid or eat lots of folate. I want those who doubted Aerilyn’s existence because she was “incompatible with life” to see she was compatible with life, like all Anencephaly/Acrania babies.
17. What dreams and hopes did you have for your child?
I dreamed of Aerilyn having long hair, a dimpled smile, and a cherub laugh. I hoped she would be everything I’m not and grow up into a beautiful soul, inside and out.
18. What kind of things did you do to bond with your child?
We did an Aerilyn’s Adventure list. We went to Hawaii, a build-a-bear with her brother, many banana splits, and lots of moments cherishing her kicks.
19. Did you have a baby shower or celebration of life? What was most exciting about it?
I did have a celebration of life! An amazing person who also lost a daughter to Anencephaly threw one for me. I was hesitant at first, but I’m so glad I did it. The most exciting thing was all the people who showed up for a little girl they more than likely wouldn’t meet. Not to mention 90% of the people I didn’t even know! They brought gifts, hugs, stories and companionship. I loved it!
20. Did you or do you have any other children? How has this loss affected them? Did they ask any questions? If so, what were they?
I have one other child, Kanin, who’s almost four. He had turned three when we found out about the Anencephaly diagnosis. While I was pregnant he would stuff his “friends” (stuffed animals) in his shirt at night and mimic me. There are many pictures of him sleeping, looking like mommy. He still does it occasionally, even though I’m not pregnant. At first he didn’t understand, but he met Aerilyn. He gave her kisses, hugs and wanted to see her belly button. They would have been best of friends. Recently he’s been asking more about her. Asking where she was, why she wasn’t here and if she could come home. It’s heart wrenching and adorable he loves and misses his sister.
21. How do you incorporate your son/daughter into your lives and the lives of your family?
Aerilyn is thought about every day. I have her blanket with me wherever I go and I wear a necklace that has a ring on it that she wore.
Recently Kanin asked if he could have her ring, so we bought a ring to put on his necklace and he says it’s from his sister. ❤ I also write as much as possible and try to spread the word about her and Anencephaly.
22. Did you have twins? Were both Anencephalic? How did having twins change your bonding? How do you cope seeing one twin and not the other?
23. Were there any unhelpful comments made to you? If so, what were they?
I had people tell me to “buck up” and “it’s okay”. Both of which I wanted to scream at them for. The worst though has to be when people told and tell me “everything happens for a reason”. No, they really do not. No one can tell me that my daughter had to die for some unknown reason. Do I think her life had purpose? Yes, but I don’t believe that there was a purpose behind my losing her.
24. In what way would you want to inform the world of your child or Anencephaly/Acrania?
I want the whole world to know what this defect is. I would want them educated on what to do to possibly prevent it (folic acid/folate) and that this is important to know about. That more research would be done so my pain of losing her would be the last.
25. Do you run a blog, Facebook page or other support or organization? If so, what do you hope to accomplish with it and how has it benefited you? Links?
I run my blog, obviously. =) www.carsandstars.net
26. Were you able to keep your child with you after they passed? How long? What do you cherish the most about that time? i.e. their toes, eyelashes.
We kept Aerilyn for a full 24 hours. She passed at 4:19pm on December 15th and we handed her over to the funeral director at 4:19pm on December 16th. I cherish the moments we got with her. Her dad and I watched a movie with her, had a few meals and got to sleep next to her. She was constantly held and kept warm as can be. Her eyelashes were amazing and I miss seeing them. Also, her hands and legs were so soft.
27. In what part of the world are you in? Have you met any other mother’s who’ve lost their child to this?
I’m currently in South Berwick, Maine. I’ve met a few ladies actually. One being from Hawaii, Joy’s mom, Tiffany Hubbard. I have also met Stacy, who lost Rachel, Kaitlin, who lost Emmanuel and Sarah, who lost Naomi. All three of these ladies are local and are amazing for me.
28. If you’ve lost more than one child to this, how did one experience change from the other?
29. How do you celebrate your child’s birthday?
It’s only been five months since she passed and I’ve yet to figure out how to celebrate her life. I hope it’s something memorable!
30. Mother’s day is soon, how do you celebrate? Is it difficult for you and in what way?
Mother’s Day was terrible for me in many ways. It was my first without her and I felt that absence more so than normal. She made me a mommy for the second time and I couldn’t even be with her. Although, Josh had Kanin make me cards from him and Aerilyn. I love them.
31. Have you published any news articles or gained media attention? If so, would you mind sharing your experience and links?
I haven’t published anything except on this blog.
32. Did you do neonatal donation? How has that helped you?
We did not do donation. I considered it, but Josh wanted all the time he could have with her. So we chose not to. After looking up the qualifications, she would have been too small to be considered.
33. Were you able to pump and donate your child’s milk? Why did you chose to donate or why not? How did it help you?
I pumped Aerilyn’s legacy milk for awhile before I started having breast issues. I chose to donate because I saw a picture of Tiffany pumping and she stated how it helped her. I knew right then I wanted to pump and help other babies. That Aerilyn’s milk needed to go to needy babies, even for a short while. It helped because it made me feel like I was doing something to honor her and live up to the amazing gift she was. Pumping was also like I had a part of her for a little while longer.
Aerilyn will always be a part of me and a part of my life. I think of her, honor her, and remember her every day, no matter what I’m doing or who I’m with. Just like her blanket, she will always be with me. She will always be my little girl. Spreading awareness is only one of the ways I can honor and remember her. If just one person takes her story, or any of the stories in this segment, to heart and reduces their chances of an Anencephaly/Acrania diagnosis, it makes a difference. This is a part of her legacy, and all of the participants’ legacies.