Heidi met some incredible women last year at Alt Summit. Women who take the blogging platform to a totally new and inspiring level. We introduced you to Meg Conley, SpitfireMom and Warrior Woman, back in August. Today we’re delighted to showcase Amy Webb. Amy’s story stayed with Heidi long after the summit was over. Amy’s blog, This Little Miggy Stayed Home, is a lifestyle blog focusing on all the stuff she loves: sewing, painting and art, DIY. It’s a fun place to hang out, but what makes it really incredible to us is her “Special Needs Spotlight.” See, Amy’s younger daughter, affectionately nicknamed “Lamp” by her older daughter whose blog alias is “Princess Sparkle Pants,” has an incredibly rare disorder called microgastria and limb reduction complex. Put simply, Lamp has a teeny-tiny stomach and all four of her limbs are different. Amy blogged during her pregnancy and has continued throughout sweet Lamp’s toddlerhood. Her honesty is brutal and beautiful. She doesn’t shy away or back down from the difficult things she has had to face. Lamp doesn’t have hands. Amy struggled through Lamp’s slow development, knowing her baby was frustrated a lot. Her reaction to Lamp’s wheelchair was raw and powerful. But Amy has such a bright light within her as well (as the mother to a girl called “Lamp” should). She has lived this reality for about five years now, and she is nothing short of amazing. After a particularly beautiful moment while shopping with Lamp, she wrote:
What I know now and what I want others to know is that an ultrasound machine while great at predicting genders and certain medical issues, is horribly, woefully, unspeakably inadequate at predicting futures.
About a year after Lamp’s birth, Amy had the idea to highlight other special needs kids on her blog. I asked her where the idea came from. She responded:
The idea came just from my experience blogging about Lamp and our experiences–I felt so grateful to have this outlet in writing as a means of sorting through everything in my head. I was also thankful for the platform my blog provided to help others know what we were going through–it was therapeutic, but also a great way to let people know on a wide scale some of the ups and downs of this journey. I knew that what we were facing as a family was unique yet universal. In that first year I was experiencing so many new and different aspects of parenthood that come with having a child with special needs I just needed a place to share and talk about this stuff! Luckily I had my blog. So my initial idea was to give parents of other special needs kids this platform to just share their experiences as I knew that was so important for me.
The result of that labor of love hit the century mark last week. Amy has featured 100 families, their children’s sweet faces, and their stories. Every Friday Amy showcases a child with special needs and their incredible family. The variety of maladies these families are facing is staggering: cancer, autism, epilepsy, heart defects, muscular dystrophy – the list goes on. But the common threads through each post are Amy’s dedication to this subject and her awe for each and every person she encounters, and the families’ perseverance even in the face of what would make the rest of us crumble just thinking about. Of those 100 amazing stories, I asked Amy if there are any that stand out to her.
I think of Aviana–a sweet little girl who was adopted into a loving family, born healthy and ‘normal’ but who was hit by a car one day and suffered a traumatic brain injury. She has since passed away. I think of sweet Jeremy, who required round the clock care–meaning he needs to be in line of sight 24 hours a day! So his family moved his bed into the living room to accommodate this. His sweet face melts my heart and his family is full of love for him. I think of Celia who was born seemingly healthy until her family found out that she was born with a terminal, degenerative disease called Battan disease and she would not live much longer. She died when she was 4. She was the first child I spotlighted who passed away but there have been others. And there are so many, many wise moms, who have shared beautiful and profound insights, one mom who stands out to me recently was Trisha–the mother of micro preemie twins Ingrid and Charlie. Ingrid and Charlie both had a lot of medical issue that were seemingly under control. Then Ingrid had her first seizure at age 6 and passed away unexpectedly.
I went into this series thinking I was an insider who totally ‘got it’ and I’ve come away learning so, so much. Which has made me realize no matter how much we relate to someone else’s experience, we can still can’t speak for them.
As with all our SpitfireMoms, we ask if they have a few words of wisdom to share with us. Amy’s translates to any person in any situation:
I seriously think I read this on a chocolate bar, but it’s something I remind myself of often…whether it’s facing the life-altering news that one of your children has special needs or just trying to summon the courage to follow your dreams remember this, “If they can do it, you know you can.”
Amy has so much to say and so much to offer, we were inspired to focus on special needs kids and their families all this week. Please check back on Wednesday when we’ll be highlighting other blogs and resources to learn more, get inspired, and be moved. And on Friday we’ll have a post about how to talk to your friends, acquaintances, and even strangers about their special needs children.
Thank you, Amy, for all you do to shine a light on these extraordinary families!
Jenn & Heidi
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Photo credits: Amy alone – Clair Johnson, Amy and girls – Rachel Thurston, Three girls – Mark Warnick, Others – Instagram