How I Parent: A Mom of 3 Who Uses Her Blog to Advocate For Special Needs Families
Name: Amy Webb
Location: Cincinnati, OH
Occupation: Mother, writer, artist.
Family situation: Married with three daughters [editors’ note: She uses pseudonyms Big Sister, Lamp and Baby Zuzu when writing about the girls on her blog]. I’m a stay-at-home mom. My oldest two are now in school, while my youngest is in preschool three days a week. We don’t live near family and have always had to hire sitters or nannies for any type of child care.
Parenting “philosophy” in a sentence: “Every single human being is a gamble, and we love them anyway.”
What was your journey to having the family life you have today?
My husband and I come from a similar faith background. We belong to the Church of Jesus Christ of Latter-day Saints, otherwise known as the Mormon church. From our first date to marriage, it took eight months. There wasn’t a huge conversation about having kids. We both knew we wanted them and coming from a similar background and having our family and religion as a prominent part of our lives — we were just on the same page.
I was 30 years old when we started trying. I knew I wanted to start sooner than later because we knew a lot of people who were having fertility issues. We eventually had three daughters in three different states. I really loved that — we joke about how they’re our favorite travel souvenirs — but I dealt with a lot of postpartum depression after my three girls. I also had a miscarriage in between each kid.
Early on during my second pregnancy, I started bleeding and hemorrhaging. I said, “Oh no, here I go again,” because I had just had a miscarriage and it felt similar to that experience. We rushed over to the doctor and we prepared ourselves for the worst. But instead, the doctor was like, “There’s the heartbeat, your baby is fine.” … It was several weeks later that we ended up having an ultrasound that told us about her limbs. My middle daughter was born with a rare condition called Microgastria and Limb Reduction Complex. She has a small stomach and limb differences on all four limbs, so that was a very unique, special experience for me.
My second miscarriage happened a lot quicker and a lot earlier and wasn’t nearly as difficult for me. It was still hard but each time is very different. I’ve learned that not every miscarriage is a huge tragedy; some are more difficult than others. I eventually had my third and final daughter and I am very happy with my three girls.
Throughout this whole process, I was writing for my blog, which my husband and I started back in 2005; since we had moved away from our families, it was a way for them to see what we were up to. I’ve since found that it is the perfect way to talk about what we were going through as parents.
When I was pregnant with my second daughter and we found out she was going to have these limb differences, I started writing more for cathartic reasons. It helped me process what was going on but it was also a way to get information out to friends and family on a larger scale. At the time, I didn’t want to share everything that was going on over the phone, and it was this great outlet for me.
I wrote so much about my thoughts before my second daughter was born and what we were experiencing after she was born. We didn’t know anyone else going through a situation similar to ours. We had so many doctor’s appointments and we were figuring out what it meant to have a two month old who had to go to physical therapy. But soon, I was viewing disabilities in a different way. I also began to view my blog as a platform to give to other parents who might be going through a similar experience and it’s been so helpful to me.
I told my husband that I wanted to spotlight another family every Friday on the blog who were becoming special needs parents like ourselves. At first, he was like, “Every Friday? That’s a lot,” but that was seven years ago and I’m still doing them. I’ve done over 225 interviews for my Special Needs Spotlight section and what I didn’t realize I was doing then was that I was getting this great education that’s become such a foundation for pretty much everything else I’ve done towards disabilities.
I started with this perspective that was like, we’re special needs families and we’re going to tell all of you what it’s like. It was a very “me” perspective. I felt like I knew a lot but I quickly learned that, yes, I have this one daughter with a very specific disability, but I didn’t know anything else. So I really listened a lot and I learned a lot. I just felt so incredibly honored and humbled that so many people wanted to share their stories. It really is beautiful and has been an absolute joy for me.
My blog also inspired my new children’s book called When Charlie Met Emma. It starts with a little boy named Charlie, who meets a girl named Emma at the playground. Even though his mom has taught him that differences are okay, he’s still unsure about Emma who is really different … He eventually learns that Emma likes to do a lot of things he likes to do. He learns that different isn’t weird, sad, better, or strange. Different is just different and different is great.
How did your upbringing influence your parenting style?
My parents got divorced when I was about 2 years old … We spent five years living with our grandparents and those were like the golden years of our childhood. My grandparents were just wonderful, great people, and they provided the stability that we didn’t have in a lot of other ways. My brother and I were kids who grew up very detached emotionally and financially from our families. We had to grow up pretty quickly and we watched after ourselves a lot.
When I became a parent, I had to figure out for myself what a good mom looked like. I had to figure out how to measure that on my own and how to be very mindful about it. Because of the way I was raised, I wanted to be honest with my kids and I wanted to be myself around them. I try to let them know, I’m the grown-up in your life, so it looks like I know what I’m doing, but I don’t always.
And while we have this open dialogue, I also believe in boundaries, because my brother and I didn’t have that. When you’re allowed to go anywhere, anytime, or do whatever you want, you don’t feel loved as a kid — and I know that’s true, because I felt it. I have some boundaries with my kids because I want them to know that we’re fun, we’re fun-loving, but there are responsibilities and rules in place because I care about them and I want to keep them safe.
What’s your favorite thing about parenting?
When your kids are young, it’s so fun to see the world through their eyes. It’s super cliché, but watching them discover the newness of the world is amazing. I’ve definitely thought to myself, I might be raising my best friends, and I hope that is still true down the road. I also love watching them interact as siblings.
When we were pregnant with our second daughter and we found out she was going to have these differences, we just didn’t know if she and her sister were going to have that typical sibling relationship. But immediately, our oldest daughter would come by and grab her [baby sister] under her arms and walk away with her and they would be giggling.
At first, we were like, “Hey, you can’t do that. We don’t want you to drop her!” But then we started to see that the older one would come up to these games that allowed her sister to not just sit there but also participate. Never once when she was little — never once — did I ever hear her say something like, “She’s not fun to play with.” The two of them would just laugh hysterically and they just had a super sweet, tender relationship from the start.
I remember one time my oldest had just gotten these scarves at school because they had been learning to juggle. She sat down to teach her sisters and she never hesitated to think whether or not our middle daughter could do it. In my head, I might’ve been like, “Oh, she probably can’t, so I’m not going to even bring it up,” but my oldest never thought that way and my middle one never thinks that way either. She doesn’t think about if she can do something. She finds a way to do it in her own way.
What’s the hardest part?
Sometimes I question if I’m doing enough or if I’m doing it right. We all know there’s no handbook and we’re all just doing our best. But I wrestle with my doubts and worries sometimes.
How do you find time for yourself and your relationship?
I was never one of those moms that gave and gave until I was depleted. I know when I need help and I tend to ask for it readily; I’ve always been able to rely on my husband. I just try to prioritize things and I try to recognize when I’m not doing well mentally or emotionally because that leaks out onto everyone else, so then I need to take time off. I like to recharge because then I can be a better and more present mom.
What’s the best advice you can share with new parents?
For most special needs parents, our journeys tend to start with blinding fear. For other parents, maybe it was when their child was first born or after their child’s first diagnosis but for me, it was the ultrasound appointments. What I’ve learned is that an ultrasound machine is not a future-predicting machine. It told us about her limbs and I’m grateful for that information but it didn’t tell us anything else about her. It didn’t tell us how hilarious she was going to be. It didn’t tell us that she would have the best laugh in the entire world. Your child is so much more than whatever doctor or specialist can tell you on a piece of paper or screen. That’s just a small bit of information that’s a small piece of who they are.
Think about how much time we spend dating and choosing a partner … and then you give birth to these little people and you have no say in their personality, no say in their likes and dislikes, their abilities or disabilities, but we love them anyway. I feel like the whole message behind my blog can be distilled down to the fact that “Every single human being is a gamble and we love them anyway.” I think it says a lot about our capacity to love — it’s greater than we sometimes realize.
As a new parent, you also have to trust your gut. After interviewing hundreds of parents, I can’t tell you how many times I’ve heard that a doctor said everything was fine but a mom knew something was off. I really believe we are gifted with something that’s deeper than intuition. It’s more like just knowing, when you are a mother, and just listening to that — always listen to that.
How do you embrace the most unpredictable moments of parenthood?
There are times when it’s sheer chaos and you’re like, “This is not what I wanted,” and everything feels crazy. Then you really think about it and you’re like, “No, this is exactly what I wanted.” The key is to really embrace those moments and think this is it, this is the life that I dreamed of. All of these moments, even the crazy ones, are part of your story and they all add texture, color, and flavor to it. You have no idea what you are signing up for, but you have to be open to all of it.
What would you want your kids to say about you as a parent?
I would want them to say that they remember all the fun and how much we laugh in our house. I hope they can always say that we provided a loving, fun home for them.