It’s hard being a teenager and having a sibling with a disability can make it even harder. Children with disabilities demand more time and attention from their parents, and if that’s not enough, add in a baby sister who’s an Internet sensation. Those circumstances are enough to make any young man feel insecure about who he is and where he fits into his family.
My son, Isaiah, was always very vocal about wanting a sibling. I was a single mom for many years, so it was just the two of us. He frequently asked me when I was going to have another baby, and I would politely answer: “When I’m married.” He took it to heart. We often laugh about the time he asked Santa to bring me a man so that I could get married and give him a sibling. I don’t know if all kids make this request, but Isaiah was eager to have a baby brother or sister. I married my husband, Jeff, and along came Grace Anna.
Isaiah has always been a loving, thoughtful person, and Grace Anna’s arrival didn’t change him. In fact, he did things most thirteen-year-old boys don’t. He changed diapers and did early morning feedings. At times, it felt like he was a third parent. And while I was incredibly grateful for his help, I also felt guilty. I worried that I was missing out on special moments with him, and I knew he was getting very little attention. I was overwhelmed with the realities of being the mother of a child with a very rare disorder, and Isaiah was picking up the slack on tasks that I normally did because I was so focused on Grace Anna.
When we went places, strangers asked about Grace Anna, and they would occasionally ask, “Where’s your other kid?” Sometimes people couldn’t remember his name. It honestly became frustrating after a while.
I would normally say, “Grace Anna is doing fine, and her brother, Isaiah, is doing well too.” I knew they didn’t mean to be hurtful, but I didn’t want him left out or treated as a side note. I think these kinds of comments upset me mostly because they were a reflection of how I was already feeling inside: guilty and defensive.
One evening, I was at home and thumbing through Facebook when I watched the video that would serve as my wake-up call. In the video, Isaiah scored the winning basket at one of his high school basketball games, and I didn’t even know about it. My heart ached for having missed it, and I had hardly attended any of his games that season.
Something had to change. Now, I’ll be the first to admit that it’s hard to balance it all: events, games, school, appointments, life -- but we had to get more involved in what Isaiah was doing, and we were going to have to work together to make it happen. I didn’t want to wake up one day and realize I had missed a big chunk of his life.
I had to ask for help -- something I hated doing. Yes, Grace Anna needed my attention, but I had a husband and family members who would help if I just asked. So I did. I started attending more of his games and sometimes brought Grace Anna. We would sit at the top of the bleachers and away from people to protect her from catching the flu or a cold. She loved cheering for her brother, and you could tell he was glad we were there.
We also set aside time specifically for Isaiah and me to enjoy activities together -- just the two of us, and we set aside time for Jeff and him to do the same. We coordinated with Isaiah’s dad, Freddie, to celebrate birthdays and holidays. It was awkward at first, but it was wonderful for Isaiah to spend time with his entire family, and Freddie loved Grace Anna dearly. Looking back, I’m so thankful that we united because Freddie died unexpectedly in a car accident during Isaiah’s senior year. The time we had together gifted us with precious memories that we will never forget.
Isaiah never said a single word that led me to believe he was jealous or angry over all of the time we were devoting to Grace Anna. He came home from school happy every day, and the first thing he would do was run to Grace Anna. Still, I did not want that pure love between them to change or resentment to build. We had to adapt our lifestyle to make sure everyone in our family knew they were valued and included. They were both incredible in our eyes, and they needed to know that.
Of course, it’s hard to find balance when one child requires more attention. The time may come when one child gets left out simply because we’re caught up in the details of life and not paying attention to what is truly important. We must remember to care for our children with disabilities but not at the expense of our children without disabilities. The family unit is the backbone of our society, and every member needs to feel loved and important. It’s not easy, but we must find the way and the means to make it happen. We are so much stronger when we come together to support one another. Remember to make your time meaningful and be genuine in your praise and involvement in the activities your children love.
Isaiah is a college student now and lives almost two hours away from home. He visits regularly, and we visit him often too. The bond he shares with Grace Anna is so very special and heartwarming. I’m pretty sure she has him wrapped around her pinkie, and he loves every minute of it. I’m thankful that God blessed me with both of my beautiful, amazing kids.