Special Needs Spotlight || Eli

Miggy: Welcome Michelle! I’m so excited to be featuring you and your son Eli today. Let’s start at the very beginning, can you take me back to the day you learned that Eli would have Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

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.

Miggy: I know that most every condition exists on a spectrum, can you talk to us a little about what Down syndrome looks like for Eli and how it affects your day-to-day life?

Michelle: After I had Eli, I promised myself that I wouldn’t compare him to typical children. What I didn’t prepare myself for was how much I would compare him to other kids with Down syndrome. Eli is 3 and just started walking. After his second birthday passed and all of his peers with Down syndrome were walking and he wasn’t, I realized how much it was bothering me. I quickly realized that every individual has their own strengths. Instead of focusing on what Eli couldn’t yet do, I started focusing on what he could do and it’s amazing how much peace that perspective shift brought.

As far as everyday life goes, Eli is Eli and he’s working on his own timeline. We accommodate based on his current needs. We are just passengers on this crazy, fun ride he’s taking us on 🙂

Miggy: What are the biggest worries you face for Eli? On the flip side, what are your hopes and dreams for him?

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.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Michelle: There have been many funny situations – my husband is hilarious and has a great sense of humor – I’m constantly laughing, which is great because laughter truly is the best medicine. Recently at Eli’s IEP meeting, which short of surgeries and hospital stays, can be one of the most stressful things a mom with a child with special needs can go through, they were reading through all of Eli’s diagnosis’s and when they said Down syndrome, my husband said “Wait! He has Down syndrome???” And we all got a good laugh and it really broke the tension in the room.

Miggy: You started an apparel company called Littlest Warrior that sells inclusively minded t-shirts. They are so fantastic! How did this company come about and how has it changed the way people interact with Eli and other kids when in public? In general, how can people best approach or respond to Eli? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Michelle: After his open heart surgery I was looking forward to connecting with other moms who have kids with special needs. I also needed to find a way to earn an income and be able to stay at home with Eli so I could take him to all his doctor and therapy appointments and the thought of a shirt business to spread awareness and inclusion really sounded great to me! My very first design was the Holland Tour guide tee because I read the Welcome to Holland story about what it’s like having a child with special needs when I was pregnant with Eli and it brought me great comfort. 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. I’ve had so many people tell me that Littlest Warrior tees have helped break the ice and helped people approach them more easily. I love that so much! If, through Littlest Warrior tees, I can turn wondering stares into warm smiles, I’ve done my job.

The best thing to do when your children notice someone different (because they will) and ask about them (because they are innocently curious) is to go with them and say hi to that person. The worst thing you can do is tell them to be quiet and walk away. They (and you) are missing out on a great opportunity to learn something new, break down stereotypes and they’ll miss out on making a new friend!

Miggy: If you could say something to the mom who just starting on this journey of Down syndrome, what would you say? What would you say to yourself if you could go back in time?

Michelle: Knowing what I now know I would tell my terrified self, or a new mom, that there is so much joy waiting for you! 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.

Miggy: What is the biggest lesson you’ve learned since becoming a Eli’s mom?

Michelle: That there can be so much beauty in hardship.