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 disorder, such as Trisomy 13. They said he would most likely 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.

Eli 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.

Eli is now 5 years old and the biggest blessing of our lives. He is gentle, sweet and funny. He is curious and loves to learn. He amazes me how quickly he can learn things - he already knows all his letters and is starting to read. 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.

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.

To learn more about Eli and follow his family’s journey, follow @meeshellsullivan on Instagram!

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