Q. Would you change your daughter's condition if you could?
Since Avery and her well-being are my foremost concern, I would say, with all my heart, YES. I would take this all away from her if I could. Watching your child suffer so profoundly is absolute agony. Any parent would want to spare their child this kind of pain.
For myself, no, I wouldn't change her for a second. I'm deeply honored to be her mother. It sounds cliche, but she has changed my life in a million ways and all for the better. I would never go back to being the Meg before Avery.
And for all of you, if even one of you has been touched by Avery's life, then all of this has been worth it. I will happily, gratefully help Avery carry this cross to reach even just one. One is enough. One is worth it.
Q. What's your favorite go-to meal for you and the kids?
Baked chicken (thawed chicken breasts, salt, pepper, garlic powder, a thin layer of mayo and sprinkled with Parmesan cheese - baked at 400 degrees for 40 minutes or until juices run clear), brown rice and veggies!
Q. How do you stay so positive when it comes to Avery's diagnosis? How do you not let the states or rude comments get to you?
I have my bad days and I've had my bad MONTHS before, but I have so much hope and feel so much purpose for Avery's life that it's hard to stay down for long. I also love a good challenge and do my best work under pressure, so always having a milestone to chase keeps us busy and focused.
Avery is still young, so I haven't had a ton of experience with rude comments or stares, but what we have experienced, I really don't mind at all. I may feel differently when she's old enough to understand, but if she takes any of her cues from me, I plan to walk into every room with her like we own the damn place. She belongs anywhere she sets her feet.
And I've personally experienced enough rejection and disapproval to know how futile and useless being bothered by others' opinions is. I won't hide or cower. Don't like my kid's face? That's fine. I don't need you to.
I feel like it's important to add that 98% of the time, people are very accepting and open to her. I think the more uncomfortable YOU FEEL the more uneasy other people will feel around your child.
It also helps to pay absolutely no attention to other people. Haha! People usually tell me that I seem really mean or scary in public because I am usually very serious and focused on what I'm doing and I don't have a very inviting persona. 😂
Q. How long did it take you to accept Avery's condition?
About 10 hours. Seriously!
I remember researching about craniosynostosis one night before she was born and knowing that I was in for it. No one anticipated that she would be syndromic, but me. I cried myself to sleep that night and woke up the next morning like, okay, let's do this.
The second the nurse handed to Avery to me after she was born, I could easily see how severely syndromic she was and I was ready. I had researched the crap out of Crouzon syndrome and knew the ins and outs of what we would likely face, so each new diagnosis took me very little time to accept. I also "get over" things quickly and rarely fight change.
Q. What vitamins do you take daily?
I take a prenatal vitamin, DIM, magnesium and probiotics every single day. I take other supplements, but these are the ones I take no matter what!
Q. How do you even manage a good eating plan, staying home with the kids and being a good wife? How do you even manage a sex life?! lol
I know my priorities! You didn't ask about my social life because I absolutely do not have one! Lol! Everything I do revolves around my family and I plan ahead for EVERYTHING. I meal plan and grocery shop online, so I always have healthy food in my fridge. I clean and organize my house once a week to avoid feeling overwhelmed by STUFF. I keep my lifestyle as simple and efficient as possible. I think the key is not trying to do too much!
We rarely watch TV at night so my husband and I can catch up as much as possible. We go on long walks as a family, so I'm still active even on days when I can't actually work out. I'm stingy with our time for extracurricular activities and I'm reeeeally purposeful with our nutrition.
Q. How do you manage to just keep moving in those moments when you feel like you're drowning?
I literally pray and tell Jesus that I cannot keep moving and He reminds me of all the times I thought I might die and He didn't let me. I think of our track record and know without a doubt that the victory has already been promised to me. Somehow that always puts some strength back in my legs.
Q. Do you worry about how life will be for Avery when you're no longer around?
I think about that regarding each of my children all the time! I feel so much of my job as a mom is to prepare them to function completely on their own, so I parent each differently to help their unique personality achieve healthy independence. We're not promised tomorrow, so each day is a chance to get them ready to take on the world alone.
And I'm so grateful that Avery has older siblings! Having older, healthy children certainly complicates things, but if Avery had been the oldest, I definitely would have had to birth a few more kids. I want her to have a sizable cheering section after I'm gone!
Q. Why are you so against the Mirena?
I feel like I've beaten this topic into the ground recently between my Instagram live and all the messages I've responded to, so I'll keep this short and sweet.
There are pros and cons to the Mirena and it's all about your personal perspective!
The Mirena works by dehydrating the lining of your uterus. It does not suppress ovulation or conception, only discourages it, so theoretically, you could fertilize an egg every single month, but once that egg makes its way to the uterus to implant, finds no lining in which to burrow and gets flushed out.
Pros- it's not systemic, so your brain/ovary signals are still being sent (though, it does suppress the body's progesterone production, so having the Mirena removed may send you into profound estrogen dominance), as opposed to the Pill, which overrides all your natural hormonal processes. The Mirena IUD is localized hormones sent directly to the uterus. Another pro is minimal or absent period because no lining = no shedding!
Cons- really nasty side effects, from what I read/hear. Not everyone reports side effects though, so it's very individual. Also, increased risk of ectopic pregnancy. Since you can still technically "conceive", a fertilized egg may find a place to stick in Fallopian tubes since the uterus is out of the question. I personally know so many women with that experience and several that lost a Fallopian tube.
The main reason the Mirena isn't an option for me is the abortive aspect. I believe that life begins at conception, so I can't even consider it. I did consider using the Mirena to shrink a fibroid and continue using a barrier method to prevent pregnancy, but the book Sweetening the Pill really helped strength my resolve to resist.
So many women seem to believe that our only options are artificial hormones or pregnancy, but that's simply not true. There are VERY EFFECTIVE methods for preventing pregnancy that have nothing to do with artificial hormones. Of course, they're not sexy, but they're plenty effective.
The book Sweetening the Pill is a really powerful piece about hormonal contraceptives that is agenda-free (not republican or democratic, pro-life or pro-choice!). I highly recommend that every woman in her reproductive years give it a read, especially any woman who identifies as a feminist. You may be surprised by what you find.
Q. Is Avery's diagnosis sporadic and random or is it genetic?
Avery's syndrome is a sporadic mutation, as most cases of syndromic craniosynostosis are - really just a fluke that occurs at conception. Avery's chance of passing her syndrome on is 50%, but none of the rest of us are at any increased risk.
Q. Do Macson and Lolly ever ask why Avery looks different?
Macson's reaction to meeting Avery was, "Oh, she's so CUTE!" (his exact words)
Lolly was only 15 months old when Avery was born and she was so mesmerized by having another baby in the house that she didn't even appear to notice. Avery seems completely normal to her.
Q. What's your daily routine like?
I'm going to do a Instagram story takeover of the lifestyle site "Springible" sometime this month, so you can see what my day is like firsthand! It's pretty much the same every day, because I LOVE routine.
Q. How do you manage stress? Do you take an prescription anxiety medicines?
Stress relief deserves its OWN blog post for sure, because stress and its impact on our hormones is a topic about which I am VERY passionate!
As far as prescriptions go, I only have a prescription for my pre-natal vitamins and Vitamin D supplement. I do not take any medications for anxiety. I do love ashwaganda supplements and yoga for adrenal support.
I may have to do a "Q&A Part 2" because I've barely scratched the surface with these answers! And I will DEFINITELY have to do more Instagram live sessions for Q&A on the fly (seriously so much fun!).
Now it's my turn to ask the question...
What's your favorite form of self care? It can be anything!