Being Mama: Amy Webb

The activist and author behind ‘This Little Miggy’ sheds refreshing light on the reality of raising a child with disability. 

Amy Webb writer

On the morning of their baby’s gender-revealing 18-week ultrasound, Amy and Bracken Webb excitedly traversed the parking lot of Amy’s obstetrician, toddler in tow. 

“In my mind, my husband and I are all smiles, holding our daughter’s hand and swinging her in the air as we bounce into the doctor’s office with the sun shining all around,” says Amy, remembering that day. In the ultrasound room, Amy mentioned to the technician that she hadn’t felt the baby move much, but was swiftly reassured. “There’s the heartbeat – it looks great!” Amy relaxed, chatting away with her family while the technician went quiet. “I think it’s a girl,” she said, almost stoically. “I can’t get a good look, but I think it’s a girl…’  

“And I’m like, really? That’s how you tell us this exciting news?” But Amy, who’d had her heart set on another girl, was too happy to care. The technician kept working, silently, and then suddenly stood up. “Stunned, I said, ‘Is that it?’” Amy recalls. The technician hurriedly replied, “I’ll be right back”, and walked out. “Bracken and I looked at each other and immediately our hearts dropped. Bracken then said, ‘I feel like I didn’t see an arm on the baby…’”  

While Amy struggled to process this prospect, a doctor walked into the room. “When I asked him if everything was okay, he said, ‘No’.  And I will never forget the following sentence: ‘While your baby’s head, heart, lungs, and spine look fine, it’s the limbs. All of them are misshapen, deformed or in some cases missing bones altogether’.” 

As terms like “skeletal dysplasia” and “dwarfism” spilled over her, Amy felt like she was drowning. “When I finally opened my mouth to ask a question I got about halfway through before I burst into tears, buried my head in my hands and sobbed. We left the office with no answers. This completely unknown condition was either ‘incompatible with life’ or if she did live, she was clearly going to have a host of issues all of which would remain unknown for an indefinite amount of time. That day we felt utter despair and hopelessness.”  

Almost 10 years later, Amy feels very different. 

Known to thousands of followers as Miggy, the blogger behind ‘This Little Miggy’, she posts thoughtful writing on the joys and challenges of not-so-typical parenthood, profiles other disability families and shares playful snippets from her days with three daughters, whose internet aliases are ‘Big Sister’ (almost 13), ‘Lamp’ (9) and ‘Zuzu’ (6). 

Amy is straight-talking, smart and funny – musing as endearingly on complex, weighty topics as she does her latest haircut.   

In her pre-children life she had met, dated and married Bracken within eight months (“I know!”). The newlyweds then moved to New York City where Bracken started dental school, and Amy worked remotely for an internet company. With a fine arts degree under her belt, her hope was to do something creative from home while raising her children. Bang on schedule, the couple soon discovered they were pregnant. 

“With my first I had a very typical, that is to say, uneventful pregnancy,” says Amy. “Birth itself was a pretty big deal in the sense that it was a natural, drug-free birth, but that too was all very straightforward. I went into the hospital and three hours later she was born. We went home the next day.”

Amy grappled with the first four to six months of motherhood – an emotional ride she now understands was post-partum depression. 

“In my subsequent births I chose to get treatment in the form of medication, but with my first it went untreated and honestly, I’m not sure how I survived. My first daughter was also our fussiest and most difficult baby. And even if it didn’t look that hard, I remember how it felt. I dreaded waking up each morning because I knew I’d have to do feed and nap, nap and feed a fussy little baby all day long in a teeny-tiny apartment by myself. It was isolating and so overwhelming.”

It wasn’t until the eight-month mark that Amy started feeling like herself again and found joy in motherhood. “I loved slobbery baby kisses and toddler arms around my neck, pulling me in close with all their might. And my gosh, the love that little ones have for their mamas and papas is just so pure and unconditional, it could just blow me away at times.”  

Amy had a miscarriage before falling pregnant with Lamp, and two ‘threatened miscarriages’ in the form of unexplained bleeding and cramping. “I thought I was going to lose this baby too – it felt like a miracle at the time that I didn’t. Then once we had our 18-week ultrasound revealing her unnamed disability, it was like our whole world was flipped upside down.” 

Numerous ultrasounds, meetings with teams of specialists and several hospital visits later, Lamp was delivered via a planned C-section at 37 weeks. After only an hour or so in the NICU, Lamp was declared otherwise healthy. “I spent four glorious days in the hospital with her, resting up, being taken care of, and just loving on my new baby. Then we went home. Horrible pregnancy, wonderful birth.” 

Again Amy suffered PPD, and went on medication when Lamp was six weeks old. “About three weeks after that things were much better,” she says. “I truly didn’t understand how a little pill could change anything, because my life was just more difficult. But my brain wasn’t working right and what I didn’t understand was that this little pill was going to help my brain function better. When my brain functioned better, my entire life could function better.”

Lamp’s first year was a whirlwind of appointments. “It felt like we lived at the hospital. A big part of that came from the fact that she also ended up having some issues with her stomach, and needed a G-tube [gastrostomy tube], which of course required surgery and plenty of follow-up visits as well.”

Amy and her family had recently moved to Ohio where they formed a community through their church – one that Amy would often call on. “You can’t do this kind of thing alone, and while some people have a hard time asking for help, I’m actually one of those people who doesn’t,” she laughs. “I don’t know what that says about me, but in this case I needed help and I knew it.” 

When Lamp turned one the Webbs moved again, to Texas, and so began two-and-half years of thrice-weekly therapy appointments. In the midst of all this, Amy and Bracken wondered whether or not to have another baby. “The rug had been pulled out from us once before and we had finally settled into a new normal, so I was scared to shake things up again,” says Amy. “At one point my husband was ready to try again and I wasn’t. I just needed more time. In one sense I felt guilty for even worrying [that we could have another child with disability], but I think it was a completely human thing to worry about, too. Eventually I stopped worrying and felt that everything was going to be fine. It was.”

Enter sweet and easy-to-settle ‘Zuzu’,“the absolute perfect caboose to our trio of girls”. 

Amy Webbs children

“For the first time, my life felt easier with a baby in it!” says Amy, who this time had started medication the day she went into labor and managed to avoid PPD. “Those early days and weeks were pure bliss. The older two girls just adored her.” 

All the while Amy continued to write for her blog – a creative outlet that’s been crucial in maintaining her sense of self – and last year published her first children’s book, When Charley Met Emma, inspired by Lamp’s interactions with curious children on the playground. A follow-up, Awesomely Emma, will be published this September.

“It was this huge, eye-opening moment when I realized, holy crap, the reason so many kids don’t know what to think when they meet my daughter is because their world is almost completely scrubbed of disabled bodies. They don’t see disabled kids in their TV shows, Disney movies, advertisements, magazines and not even in their children’s books.” 

Having sold out on Amazon on its release day, When Charley Met Emma has helped demystify disability for countless children and their families. “It has been an absolute joy and honor to hear [their] stories. I know it’s just one cog in a huge machine of representation, but it honestly feels like, ‘It’s working! It’s actually helping kids to understand more about disability and to be more inclusive!’” 

Amy’s Instagram posts are often set to the backdrop of her family’s gorgeous home, complete with elevator, where Lamp gets around in her power wheelchair. “We were fortunate enough to be able to build an accessible dream house last year and it has been life changing,” says Amy. “The costs of medical care alone means that so many people can’t afford to make modifications to their homes… that’s a problem that needs to be fixed, along with many other things from a broader social and political standpoint.” 

When asked how we can educate ourselves and gain more awareness of families living with disability, Amy says: “Expose yourself and your family to positive, accurate and varied representations of disability.” She points to disability advocate Stella Young’s TED Talk as a good place to start. “Because of disability, my eyes have been opened to many social issues I just didn’t see or choose to see before.”

Nowadays, when she thinks back to that 18-week ultrasound, Amy views the situation in a vastly different light. “Yes, my daughter’s limbs are quite different – thus the common term used to describe her disability as having ‘limb differences’, but other than that, the doctor didn’t tell us a damn thing! Ultrasound machines are not ‘future predicting machines’. If that ultrasound had been really accurate our appointment might have gone something like this: 

“Doctor: ‘Looks like your daughter has a wicked sense of humor, an incredibly compassionate heart and if I’m seeing things correctly it looks like she’ll be born with extra awesome, as well. Congrats. It looks like you’ve got a helluva kid joining your family.’

“Us: ‘Well, what about the limb differences, Doc? Should we be worried?’ 

“Doctor, chuckles: ‘Compared to everything else she’s got going on, small potatoes, guys. Like I said, you guys are lucky. I just had to deliver an ‘asshole’ diagnosis the other day and it was devastating’.” 

 

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