Whether you look to her to find the latest fashion “must-haves”, or you want to see what adventures she’s up to with her sweet fam, Shannon Willardson is clearly doing something right to have amassed such a huge following. Her blog, For the Love, is a San Francisco-based style blog but what really sets it apart is the honesty and girlfriend vibe that she exudes in each and every post. Things aren’t all rosy for the mom of two (and soon to be three!) however, her daughter Charlie was diagnosed with a rare genetic disease for which there is no cure. We caught up with the busy mama to discuss how she stays so positive, what advice she gives to women going through hard times and what she always makes time for, no matter what. Read on…
Shannon, we’re so excited to be featuring you! You run a successful Bay Area blog, For the Love where you talk about fashion, family and favorite finds. You also have two adorable children; a son Jack, and your daughter, Charlotte (or Charlie, as you call her!). Your baby girl Charlie, has a rare genetic disease called a Congenital Disorder of Glycosylation (specifically ALG11-1p or CDG-1p) for which there is no cure. Tell us more about this diagnosis and journey.
My pregnancy with sweet Charlotte (or Charlie as we call her) was totally normal and complication free. At that time to our knowledge, we had just had a perfectly healthy baby girl. It was when Charlie was around four months old that the health problems started creeping in. We went to her four-month checkup and she had lost weight. She was also beginning to miss milestones. Then, Charlie began having a very rare type of seizure called ‘infantile spasms’. This is when we knew that something definitely had to be going on.
We were admitted to the hospital where Charlie underwent an EEG scan of her brain and several other tests. The test confirmed that she was indeed having infantile spasms, but we still didn’t know why – what the root issue was and what was causing them. In an effort to get a firm diagnosis, we did countless tests over a span of months and months. It was admittedly a super grueling time for our little family – my husband and I especially – both physically and emotionally.
Finally, when Charlie was almost a year old, we had a test come back that revealed her diagnosis. We discovered that Charlie had an incredible rare genetic disease called Congenital Disorder of Glycosylation (CDG) – a disease in which one of her most basic metabolic processes is impaired and a variety of tissue proteins and/or lipids are deficient or defective. There are over 130 types of CDG. Charlie’s type (CDG-1p) is one of the rarest of them all and currently has no known treatment or cure. She is one of less than 15 people who have ever been diagnosed with the disease. CDG can cause a variety of serious health problems. In Charlie’s case, the disease has manifested itself through seizures, super low muscle tone, developmental delays, and being nonverbal and nonambulatory. You can read more about our journey to Charlie’s diagnosis and updates on how she’s doing on my blog, HERE, HERE, and HERE.
That must have been such a hard time for you all. You are now proactively trying to raise awareness for rare diseases. What specifically are you doing for the cause?
It was a really difficult time, I’m not going to lie. We really leaned into our faith, family and close friends to help us pull through that. It definitely put a lot of things into perspective, that’s for sure. As far as what we’re doing now to raise awareness for rare diseases: to be honest, I always wish we were doing so much more! Because Charlie’s specific disease is so incredibly rare, figuring out the best ways to help/raise awareness for it has felt like literal pioneering. There definitely hasn’t been much of a road map! However, I’ve tried to focus my efforts on what I know and where I’m comfortable — specifically, using the platform I’ve built on social media and my blog to educate and raise awareness for CDG. I’m also trying to use those platforms to connect with other special needs moms and families who are going through something similar in their own families. These worlds of rare-diseases and special-needs can be very isolating and lonely at times. There is inevitable struggle and pain that accompanies discovering that your child’s health and development may not be exactly what you had planned on or hoped for. I never want another mama to feel like she is alone while she’s going through that.
My husband and I also try to take every opportunity we can to educate ourselves on this extremely rare disease. We attended a rare diseases conference last February in San Diego and will be attending another one in Portugal next July that will allow us to learn more about CDG and connect with other CDG families. I will actually be presenting at that one on ‘Caring for the Care Giver’, so I’m excited for that opportunity. We’ve run a couple of fundraisers where a percentage of profits went to an organization that funds research for CDG. We hope to carry out many more of those types of fundraisers in the future.
Lastly, I’m starting to actively seek out opportunities to share Charlie’s story with others — like through this HEYMAMA interview! The ultimate goal is to find a cure for CDG. I figure that the more people there are who hear about Charlie’s story and learn about the disease, the more likely we are to get the funding and the expertise needed to find a cure. That’s the dream!
Is there someone in your life that has motivated you or inspired you when things felt particularly overwhelming?
God is always who I turn to first and foremost when I’m feeling overwhelmed or discouraged about our situation. He is my ultimate go-to! I’m blessed to have the best husband, who is always my next source of strength and inspiration. My mama and my three sisters are the other rocks in my life who help me feel up to the task when it all feels like too much.
I think I have felt most inspired by other mamas and families who have kiddos with special-needs. As we’ve been integrated into that community, I’ve had the opportunity to connect with several of them, virtually or otherwise. And I am continually in awe of the impact they make and the force for good that they are for their precious kiddos. It makes me feel so motivated to do more and to fight harder for my baby girl. It also makes me want to replace my fears with faith and be more relentless in my belief that we can find a cure for her disease one day, and that she can defy all the odds. The sky is the limit if we believe. These special-needs mamas and families remind me of that on a daily basis with their perseverance and tireless efforts.
What advice do you give to others when things don’t turn out how they had planned?
1. Take a deep breath and tell yourself ‘it’s going to be ok’. Because the truth is, it really IS going to be.
2. Allow yourself to be sad sometimes. The feelings associated with major disappointments and dashed hopes/expectations are real, and they can be heavy. I personally felt like I was able to get past them faster and arrive at a more hopeful, productive place if I gave myself permission to really feel my feelings. I didn’t want to wallow in heavy, sad emotions, but I found that trying to deny I was having them or push myself past them before I’d really processed them wasn’t helpful either.
3. Reach out to your ‘squad’ and resist isolating yourself. We all deal with things differently, but when things are particularly painful I think many of us can unintentionally withdraw, even from the people who are most capable and willing to offer us the support we so desperately need. My advice is to be honest and vocal about your pain/struggles with those who you know will be there for you, free of judgment. I also recommend seeking out a community of people who have gone through/are going through something similar to you. They can particularly empathize and offer super relevant insight and advice. They’ll also help you realize that you’re not alone, and that everything really is going to be ok, somehow.
4. Lastly, some of the go-to advice I remind myself of in almost any and every situation is this: Focus on what you have instead of what you don’t have (in other words be grateful), focus on what you can do instead of on things that are out of your control, focus on the future instead of the past.
Many people don’t know what to say to support someone going through a difficult time. What has your experience taught you about being there for others? What did you/do you find helpful?
Just listen. Don’t feel like you have to give advice. Let the person know that you’re there for them and that you love them. Reassure them that everything is going to be ok – somehow. But beyond that, don’t feel like you have to relate to what they’re going through, and don’t try to guess or assume that you know how they’re feeling. Sometimes attempts at that can actually make the person feel worse I think. Listening though is one of the most powerful, under-utilized communication skills out there in my opinion, so being a good LISTENER is the best advice I can give.
That is excellent advice. We love that you are super close to your girlfriends. How do you find time for your mama tribe with everything else you have going on?
The older I get, the more I realize just how much relationships matter. I’ve gone through phases in my life where I’ve allowed busyness and endless ‘to do’ lists to interfere with nurturing my existing friendships and cultivating new ones. Admittedly, this is a bad habit I still tend to slip into – cuz life just gets crazy! What I’ve learned though and keep re-learning is that at the end of the day, your relationships with others are what really matter and are what bring true fulfilment! And neglecting those seems to leave you with little more than loneliness and regret. I’m speaking from experience here! For that reason, I really try to make time for my mama tribe and other friendships/relationships, even when life feels insanely busy. I’m not always good at it, but I try. I get together every year with my two very best friends who I grew up with in Boise, Idaho (my hometown). The three of us carve it into our calendars and make it a priority despite the fact that it requires us to travel and usually ends up feeling like inconvenient timing. I have never once regretted making time for that reunion with my girls. After all is said and done, I tend to believe that we’ll all care a little less about how much money we made, or how many followers we had on Instagram, or how many things we crossed off our to-do lists and a lot more about how we made people feel and how we nurtured our relationships.
You have almost 250K followers on Instagram (no biggie!). For all the positives you’ve experienced, I’m sure there is a flipside. How do you deal with negativity on social media?
I have three ways of dealing with negativity on social media:
1. Turn to your squad to give you a reality check and to boost you up when someone has torn you down on social. People can be brutal on social media, but when I receive a negative comment (depending on what it is), I try to ask myself ‘could there be any truth to what they’re saying?’ This is when I turn to the people who love me enough to be totally honest with me for a reality check-in. Should I give any ear to what they said in this comment? Is there room for improvement here? Or should I completely disregard? Honestly, in most cases the answer has been to disregard because the comment seemed to come from a place of limited understanding or was just mean-spirited. But there have been a handful of times when my squad and I concluded that there was some merit in the comment, even if it stung a little to hear it. In those cases, I try to humbly take the feedback and improve/change where necessary. In any case, I believe that your squad should be the people who remind you of why you’re completely awesome and amazing, imperfections and all (and who threaten to take down any haters who would dare mess with you.
2. Kill em’ with kindness. Instead of getting offended or being defensive when someone leaves a mean or critical comment, I try to make my responses as kind and as humble as possible. Sometimes I’ll even agree with their comment! I never get sick of witnessing people’s reactions to that. It always seems to catch them by surprise, and kind of makes them take a step back and reassess whatever it is they said. I’ve actually gotten some apologies and earned some loyal followers this way!
3. Maintain perspective. In this day and age, how we’re doing on social media can feel like one of the most important things in the world – especially if it’s a substantial part of our business/income. Social performance seems to have the power to affect our moods, our actions, even our identities and how we feel about ourselves. But sometimes I stop and ask myself ‘Should it have the power to do all of that?’ My personal answer to that question is NO. Sure, a portion of my livelihood is connected to that performance. But I think it’s important to remember that the people who leave negative comments are usually complete strangers who only have a tiny sliver of the full picture of your life and who you are, and therefore are in no position to judge. And, when it’s all said and done, the number of followers we had on Instagram will probably not matter a whole lot to any of us. Perspective perspective perspective.
Well played! How has becoming a mother influenced the way you approach your career?
Being a mom has made me think a lot more about what truly matters to me and what I want to use my platform and my voice for. It may be faster/easier and more lucrative to throw together fashion and outfit posts on my blog every day, but I’m trying to push myself to talk more often about the things that matter way more to me than any of that stuff. My kids have heightened my desire for my blog and social platforms to be a reflection of the deeper part of me and the things I care about most – like faith, family, and trying to help other people.
Who do you look to for inspiration for your career? In Motherhood? In life?
In motherhood and life, I look to my own mama, my mother in law, and to my sisters for inspiration. They’re all such stellar examples of what it means to be great moms and great people. For my career, I have so many beautiful and successful blogging buds who are slaying the game and killing it in mom life as well. I totally look to them for career inspiration. They help me stay motivated! I also look to a few high profile people who seem have gained a ton of success while maintaining perspective and a sense of grace and humility, and while staying true to who they are and what they believe in. I’m inspired by those who don’t seem like they’re ONLY concerned with chasing fame and fortune. I secretly love The Rock for his ‘hardest worker in the room’ and ‘gratitude’ mantras. I love me some Tony Robbins. I love me some Ayesha Curry.
Take it 1 hour, 1 moment at a time. We all have mom-moments we’re proud of and not so proud of. EVERY moment of every day is an opportunity to re-group and recommit to being the kind of mom and the kind of person you want to be.
Don’t neglect yourself. I’ve learned that I’m a better mom to my babes when I take care of myself as well. Cuz yes, I’m a mom - but I’m a lot of other things too. Nurturing the other sides of my being helps me bring my best, most energized self to the role of motherhood.
Pray a lot, and have fun! The role of motherhood is one of the most important ones we’ll ever have. It’s a privilege, but let’s be serious - it’s also a challenge! Prayer is required! Despite the challenges though, I believe it should also be fun! I try to take how I parent really seriously, without taking myself too seriously. In other words, be willing to laugh at yourself and appreciate the things that make this mom-gig a total blast.