This World Down Syndrome Day, our Luke is 5 years old! The past couple of years have been both challenging and rewarding. In my experience, ages 4-5 are the “terrible twos of Down syndrome.” This child is into everything! Teaching boundaries has been tough, and to make the job tougher, Luke is bigger, stronger, and more experienced than any typical 2-year-old, which means he can get into that much more trouble. We’ve had to take “baby-proofing” to an advanced level with this one.
But there is always progress! It’s slow progress, but he is surely maturing and learning and growing. Most helpful is his newfound use of consistent language. It has improved by leaps and bounds this past year! We can now ask him questions. He verbalizes many of his needs. He uses our names. He tells us he loves us. We still have a long way to go to be fully able to communicate verbally, but what a blessing this growth has been! To be able to hear some of what is on his little mind has been an answer to prayer and a wish come true. I can’t wait for him to learn more so we, in turn, can learn more too.
When you learn that your child has a disability, I think most parents anticipate the challenges. I know I did. I worried and wondered (and still do sometimes). I expected that some things would be harder because of it. But what I didn’t expect were the blessings. Of course I knew that Luke himself was a blessing, but I had no idea that his diagnosis of Trisomy 21-Down syndrome would open so many opportunities and connect us with so many people. These are people I would not have met and groups I would not be a part of otherwise!
Take, for example, our homeschool co-op. I chose it specifically because it is special-needs inclusive. Knowing that all of my kids could attend and learn and make friends is what drew me to it. And what a blessing it has been for us! We’ve all formed wonderful friendships and received love and support that we likely would have missed out on had it not been for Luke and his needs. It’s amazing how God plans and lays out our path for us.
Equally amazing to me is how positively having Luke’s needs have affected our other kids. Don’t get me wrong, there are plenty of challenges there too, but not in the ways I initially worried. I worried about jealousy or others feeling left out or not understanding why he is sometimes treated differently or given extra attention. But having a sibling with special needs has only increased their awareness and acceptance of others with differences. It’s given them a comfort level well beyond any I ever had as a kid. As our circle of friends has grown to include more and more families with kids who have varying needs, I witness time and time again how loving, compassionate, and understanding my own kids are. And I feel like I can’t take credit for that. They’ve learned something well beyond what I could teach them. God is teaching them bigger things through their brother with Down syndrome.
Lately I’ve been hearing other parents of kids with Down syndrome refer to us as “The Lucky Few.” They’re using a symbol of three small aligned arrows to represent the third copy of the chromosome and to also represent the strength that we find when we are pulled back even farther than we think we can handle. 1 in 700. Approximately 1 in 700 babies in the US is born with Down syndrome. Hitting that jackpot was not something I ever anticipated, and I can most certainly feel myself being stretched and challenged on a daily basis by this 5-year-old in his “terrible twos,” but they’re absolutely right in comparing it to an arrow on a bow string. The further you allow yourself to get stretched and pulled back, the stronger you become and the farther you can fly. With each obstacle that we overcome together with Luke as a parent, a sibling, a family, we grow that much stronger. We need him more than he needs us-in so many ways this is true. Not just for our family, but for the world. The world needs people with Down syndrome and all other varying abilities so God can teach us the bigger lessons. So in celebration of World Down Syndrome Day this year, I will continue my attempts to “advance baby proof” to teach Luke his boundaries. I will continue to try to allow myself to be stretched beyond what I think I can do in order to meet his needs. And I will leave the rest to Luke and let him continue to teach us the bigger, more important lessons-the ones God knows our world needs. That’s what this March 21st means to me.