When the boys were very little, maybe three and four years old, we tucked them into a side by side double stroller and set off with sippy cups and a diaper bag. As we walked along, Matthias saw someone staring at David, and he protectively put his arm around his brother. Steve and I exchanged a knowing glance. It was a small action with big meaning. Matthias was beginning to understand that his big brother needed looking after.
Months later, Matthias asked me, “Why do they stare?”, His green eyes full of innocence and righteous indignation. “They’ve never seen a child with only two fingers before. It’s unusual and they’re curious.” I tried to explain. My words sounded calm and rational, but inside their stares tore at my heart too. “He’s just David.” was Matthias’ perfect, childlike answer. “He’s my brother. He’s fine just the way he is.” In his unwavering acceptance of David, Matthias was beginning to grasp that his brother was different.
Sometimes I wish Matthias didn’t know so much about how hard life can be. Having a brother with a disability means simple outings sometimes turn into complicated situations. He’s heard my voice shaking as we debate taking David to the emergency room. He’s had to be flexible too many times when plans get changed because his brother is sick or in the hospital. And no one is as better at packing a bag with art supplies, books and snacks to wait out a long doctor visit.
And each time everything grinds to a halt to care for David, my heart hurts a little for Matthias. He assures me he’s fine. And I know Steve and I are intentional to make special time for him, too. But it’s hard. It’s imperfect. The stress that comes along with having a disabled brother affects Matthias, and it isn’t fair.Thankfully he also sees the beautiful and amazing parts of this journey. Those long waits at the doctor’s office have given him time to nurture a passion for drawing and creativity. He has insights beyond his twelve years that will serve him well in life. He has compassion for others and cares for those who are hurting. Matthias adds stability to our family. We are better because of him. His life hasn’t been easy. Having a brother with a disability has shaped him and given him a bigger heart. As mothers, we want every good thing for our children.When I see my child struggle, it breaks my heart. But as I see those struggles produce a kinder heart that loves more deeply, I’m flooded with gratefulness. This journey has it’s twists and turns but I’m finding, step by step it’s taking our little family to beautiful places. We are stronger together.
Have you walked through a hard time with your child?