Balancing a career and a family is a challenge at the best of times, but Michelle Sullivan had it figured out. She had a successful wedding photography business and with her husband Eric they were raising 3 beautiful girls. Michelle thought she wouldn’t miss a beat adding a fourth child into the family. But the universe had bigger plans.
Michelle’s son, Eli, was born chromosomally enhanced (one extra chromosome).
At her 20 week prenatal appointment the doctor told Michelle and Eric their son’s intestines were blocked and he had a heart defect. This combination often indicates a chromosomal abnormality. A blood test would later confirm he had Down syndrome aka Trisomy 21. The doctor said there was a strong possibly he would be stillborn and if he did survive birth he would need to have open heart surgery right away. The doctor didn’t give them much hope and even suggested terminating the pregnancy, all of which left her feeling overwhelmed and terrified.
She cried herself to sleep that night and grieved for the little boy she thought she was having. But when she woke in the morning, she believed deep in her heart that everything was going to be alright. Although, changes would need to be made.
First up, canceling a photography contract for a wedding that would happen one month after Eli’s due date.
Soon after Eli was born Michelle knew the next couple of years would be filled with hospitals, doctor visits and therapy. She didn’t want to disappoint any more clients so she closed her photography business. There was no sadness – it was just the way it had to be.
With the hospital bills piling up she needed to find a way to earn income while staying home with Eli so she could take him to all his appointments. The thought of a t-shirt business to spread awareness and inclusion came to her. And just like that Littlest Warriors was born.
Michelle took a leap of faith and several small steps to get to exactly where she wanted to be – there for Eli. And in the process, she found so much more than she ever expected. The experience transformed her into a stronger, more tolerant, and more compassionate person. She gained a deeper understanding, respect and acceptance of all people. She closed one business, only to open another and discover her life’s work of spreading awareness and inclusion about Down syndrome and kids with special needs.
None of this would have been possible without Eli. Together this dynamic duo is helping to change the conversation about kids with special needs one rad t-shirt at a time!
Michelle tells us more.
Do you miss being a family/wedding photographer?
I still use my photography skills quite often – I bring my camera pretty much everywhere I go. I use it for my t-shirt business and just everyday lifestyle shots of our family.
What was the hardest part of your reinvention?
To be honest it came so naturally, I can’t think of a hard part – sorry!
In moments of self-doubt or adversity, how do you build yourself backup?
My kids really help keep me grounded and remind me daily why I need to pick myself back up, brush myself off and keep going. Eli is my biggest hero – if he can go through everything he’s been through and still have a smile on his face, so can I.
One thing you want people to know about Eli or your family?
The last thing I want is for people to pity us. We don’t feel sorry for ourselves or Eli and neither should anyone else. We love Eli and every single one of his chromosomes.
Tell us where your inspiration for the t-shirts comes from?
Clearly Eli is my muse!
My very first t-shirt design, the Holland Tour Guide, came to me after Eli was born. While pregnant with Eli I read the ‘Welcome to Holland’ essay written by Emily Perl Kingsley. For those that haven’t read it, it’s a metaphor about welcoming a child with a disability. It brought me great comfort and gave me a new perspective. After Eli was born I started calling him my little tour guide. So when it came time to design my first t-shirt I hoped the slogan would do the same for others. I love that when we wear Littlest Warrior t-shirts, they end up being conversation starters and that’s a great way to spread awareness.
Have the goals for the t-shirt company changed over the past two years?
At first I just wanted a little side business to help with medical bills, but now it’s turned into something I never dreamed of. It truly is a community. When I started meeting other moms of kids with special needs I learned so much about disorders and diagnosis I had never heard of before. It’s become my mission to educate and spread awareness.
You give a significant percentage of profit to charities, why is this important to you?
I believe in giving back. So many people rallied around us when Eli’s medical bills were overwhelming for us. I wanted to be able to pay it forward.
What does success mean to you?
Success to me means creating change and bringing joy to others. If that’s all I do with Littlest Warrior I know I’ve done my job.
What would you tell yourself knowing what you know now?
Knowing what I now know I would tell my terrified self that there can be so much beauty in hardship, that going through all the surgeries and facing the unknown would give me a strength I didn’t know I had. Eli has truly enhanced my life. He has given me a love for people with special needs. He’s taught me so much about patience and endurance. He has made me a better person and for that I am so grateful.
Any advice for someone thinking of reinventing themselves?
My advice would be to do what comes natural. If change comes into your life, follow it, don’t force it. I love the saying bloom where you’re planted. If you try to change things and it’s not a natural process, it might not work.
Your son’s diagnosis was poorly delivered. Do you have any suggestions for Doctors delivering the news?
I understand it isn’t the easiest information to deliver but with some thought and consideration it could be delivered in a more sensitive and complete way. The good: people with Down syndrome have a greater quality of life and a longer life expectancy now, more than ever before in history. The bad: the health problems that are typically associated with Down syndrome. In addition, they should provide information connecting parents to the various support systems in place today as well as other families of children with Down syndrome.
I’m hopeful things will continue to get better. It wasn’t that long ago that parents were told that their child would never walk or talk and it would be best for everyone if they put them in an institution. Slowly parents stop listening to the doctors and instead they brought them home and loved them and amazing things started to happen: their kids walked, talked and many started to go to college and get jobs.
Recently a friend of mine brought her son with Down syndrome to a college for an observation day with pre-med students. If we can expose students to people with Down syndrome then hopefully the next generation of doctors can be fully educated and not just rattle of some old statistics they read in an outdated medical journal, but instead tell them all the amazing things they’ve observed with their own eyes.
Do you have any thoughts on how Doctors could break life changing news?
Photography: Michelle Sullivan