In the last few weeks I have fallen more in love with Elias. It's not because he smiles all the time and is really easy for me. He has actually been really difficult lately. He yells at me because he can't tell me what he wants. He collapses in the middle of the street and pulls his hand away from mine. He wakes me up multiple times in the night, and then once more at 5:30 when he's ready to start the day. Having a child with Down syndrome is hard work.
In the last four years with Elias, I have come to know and love a bigger picture. I have come to understand the heart and mind of my son like no one else. When Elias yells at me, it's not because he wants to be mean to me. It's not because he's obnoxious or dumb. When he yells, or pulls his hand away, or wakes me up in the night, it's because he wants me to know more about him. He wants to tell me about things. Sometimes he doesn't feel like walking. And every night, multiple times in the night, he wakes me up. I'm not sure why. Maybe he's cold, or scared, or just wants to be close to me.
I have a lot to learn about being a mom of a boy with Down syndrome. There are many books and blogs that want to help, but they don't know my son. I know my son. I'm getting to know my son. I battle guilt when I say that some days are really hard with Elias. I want to always be the perfect mom for him. I always want to be strong for him. But I feel weak, like I don't know what I'm doing or don't know how to help him. That's a hard place to be.
As I write these words and look at these precious pictures of my son, my eyes blur with tears. My heart beats a little faster. I am in love with everything about this boy with Down syndrome.
His life and all the things I am learning through him is no mistake. There was no mistake when his extra chromosome was strategically placed by the Creator of the universe. There was no chance or fluke that a younger woman—me—would carry a boy like Elias. Everything was carefully planned and artistically woven together in my belly when God created my son.
Although today might be difficult, and I feel like there is nothing more than what's in front of me, I remember that there is a bigger picture. There is a painting, a mural that only covers a corner of the wall. How thankful I am that I am not the one with the paintbrush. I am not the one painting the strokes of color that make up my life with Elias. Some parts of the painting seem a little awkward and hard to understand, but I trust the Maker. I ask Him to help me find beauty in what I don't understand.