My name is Michelle, I’ve been married to Eric for over 20 years. We have 4 kids – three girls (Daphne is 18, Gretta is 15 and Roxanne is 13) and a 4 year old boy named Eli who happens to have an extra chromosome.
He’s completely rocked my world in the best kind of way! He inspired me to start a tee shirt company for kids with special needs to spread joy, awareness and inclusion. You can follow along @littlest_warrior. Eli was a big part of my journey to freedom – there’s great freedom in realizing you are not in control. Handing him over for his open heart surgery when he was 6 months old and only weighed 8 pounds was the hardest yet most freeing thing I could do. I had no choice but to trust God. Sometimes the thing that you are most scared of can be the very thing that sets you free.
Before I had Eli, I was a wedding photographer on the weekends and a stay at home mom M-F. Now I run Littlest Warrior from home, as well as a portrait photography business @michellesullivanphotography and I also work for a non-profit for women called Freedom Movement @freedom_movement.
I’m passionate about showing people their worth – whether it’s someone with a rare disease, or special needs, or a woman who has yet to see herself through God’s eyes. #shouttheirworth @meeshellsullivan
Natalie: What are some words to describe Eli? What do you love about him?
Michelle: Eli is gentle, sweet and funny. He is curious and loves to learn. He amazes me how quickly he can learn things – he already know all his colors and can count to 10. Eli inspires me everyday to be a better person, to be kinder and to stand up for those who can’t stand up for themselves. He reminds me of what’s truly important in life.
Natalie: How did your journey begin with Eli, what was going on through your mind and heart during this time?
Michelle: When we first found out we were having a boy, our first boy after 3 girls, I was beyond excited! The life I painted for him flashed before my eyes. I saw him grow up, get married and have children of his own. Then came our 20 week ultrasound. The very first diagnosis we received was for his blocked intestines and his heart defect. The doctor didn’t give us much hope, so I was terrified. The doctor told us that the combination of the intestines blocked and heart defect possibly indicated a chromosomal abnormality, such as Trisomy 13. They said he could possibly be stillborn and if he did survive birth he would need to have open heart surgery right away. When we did finally receive the diagnosis of Trisomy 21 (Down syndrome) around 30 weeks, I felt relieved knowing that he had a far greater chance of surviving.
But there was still grief. I had to grieve the life I had already dreamed up in my mind for my first boy. I felt sorry for him, I felt sorry for my daughters, I felt sorry for my husband and myself. I thought our life was over. I thought it was all downhill. I had no idea what joy and adventure was waiting for us. Knowing what I now know, I so wish I could go back and give myself a glimpse of what our lives are like now. Yes, our lives are different, but so much better! There is so much more joy, and love and hope. We are stronger, better people because of Eli.
Natalie: What is the name of the condition(s) that Eli has? Can you share with us a little more about it?
Michelle: Eli has Down syndrome (Trisomy 21) which means he has 3 copies of the 21st chromosome. According to the Centers for Disease Control and Prevention, approximately one in every 700 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. Individuals with Down syndrome have developmental delays and can have heart defects and other birth defects. Eli was born with his intestines blocked, a condition called duodenal atresia. He also needed to have open heart surgery to repair his AV canal defect when he was 6 months old.
Natalie: What are your worries and wishes for Eli?
Michelle: The biggest worries I have for Eli are for his future after I’m gone, who will take care of him? My daughters have already started fighting over which one of them it is, but I still worry.
My hopes and dreams for him are that he would truly be included. In school. In work. In life. I want him to be a bright light in a dark world and for our family, that dream has already come true.
Natalie: I’m passionate about the (special needs/medical needs) and self care connection. Raising a child with a medical condition or diagnosis can bring some big challenges, how do you cope? Are there any self care practices that helped you on your journey? How do you get through the tough days?
Michelle: I believe self care is extremely important. I can’t pour out if I’m empty. I make sure that I leave room in my calendar for the things I enjoy like getting my nails done, going on a date night with Eric or planning a girls night out with my friends. Community is so important. You can’t do life alone, especially if you are caring for kids with additional needs. You need to find a tribe of moms who are either going through something similar or who will be there for you in good times and bad. Another thing that has been huge for me is working for Freedom Movement. When I first started working for them I worked for free and it felt so good to step outside of my story and to serve. Helping others in the midst of my hard days helped me to take my eyes off of my situation and that, I believe, is a healthy coping strategy.
Thank you for sharing your journey with us Michelle,
If you would like to share your miracle moments and special needs journey, please get in touch here.
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