Mom Guilt Over the Siblings of Kids With Special Needs

Thirteen years ago, I couldn't have known all that motherhood held in store. I knew I wanted to be a mom and have a handful of kids. 3-4 would be good. God saw fit to bless our family with three wonderful boys. Benjamin came first. He was going to be William until the day he was born. I was in labor at home, and we were just sitting in the living room waiting to go to the hospital. We found ourselves discussing his name, and we remembered we had really liked the name Benjamin. All of a sudden, William went out the window and Benjamin took its place. Labor was weird and nothing AT ALL like what we had learned in Lamaze class. It was so far from text book, it took us all by surprise - especially me. At 9:23pm on January 11, 2004, I birthed my first baby. My Benjamin.

I wish I had known more of the warning signs of post-partum depression. It took several months before I talked to the doctor about everything I was experiencing. I thought I would be the mom who went running at every little cry or noise. Instead, I couldn't bring myself to get out of bed to feed him when he cried. I couldn't shower. I felt like I had no feelings for him, most of the time. I felt disconnected and absolutely nothing about being a new mom matched the picture I had in my head of rocking him to sleep, singing to him, and just loving every single minute. I did rock him to sleep. I did sing to him. In fact, I printed out the lyrics to the standard lullaby song because I didn't know all the words. I napped with him swaddled next to me in bed. I did what I was supposed to do. But there were times in those first few weeks when the feelings hadn't quite yet set it. And when I think of those days and the obvious depression I was in that I didn't even realize, I hate myself for it. I feel like a terrible mother because I didn't love him the way I should have—the way I was supposed to be able to love him. Of course I loved him. But there should have been more. I should have been better.

On Ben's first birthday, I announced to all our friends and family that I was pregnant. He was getting the gift of being a big brother (8 months later) on top of all his actual toys and presents. My depression had been controlled by that point, so life was much better. I was feeling better and felt normal again. Then Samuel was born. While I also had PPD with Sam, it wasn't as bad as the first time around, and I knew what was happening when I felt it to be able to treat it asap. Life was hectic with two young boys, a toddler and a newborn. But Ben SO loved his baby brother.

As Sam grew out of the baby stage and into toddlerhood, we knew things were not right. The meltdowns with head-banging, the outlandish screaming, the non-communication ... we were beside ourselves. What were we doing wrong? What was wrong with him? And Ben was the innocent brother just being his happy little self. He always tried to help, but after a while, it was hard when Sam screamed in his face. After the diagnosis came and as the boys grew older, we had to explain to Ben about why and how his brother was different, and why he behaved the way he did. And we asked Ben to be a big boy helper. To be patient with his little brother because he was younger than him, and he had to be a good role model.

Toddlerhood turned to little kid-hood, and they were rambunctious boys. Ben has always been the fun-loving, happy-go-lucky one. Sam liked to have fun too. Just on his terms. This is one of my favorite pictures of the two of them. Ben was 5, and Sam was 3. If ever one picture could tell an entire story of brothers, this is it.

Sam kind of looks like maybe he's laugh-screaming, but he's not. He is totally terror-screaming. And there's Ben ... grinning like the goofy kid he was. He was laughing, not realizing in the least just how little Sam was enjoying it. I happened to be playing outside with them with my camera, and I told them to smile. They were originally side by side. At the last second, Ben ran behind Sam, grabbed him by the neck, and I snapped the shot. This photo perfectly displays their relationship. Ben just trying to have fun, and Sam having some sort of problem with it.

The night before Ben's 13th birthday, I had picked him up from playing in the pep band at a girl's high school basketball game. As a 7th grader, he has had the opportunity to be in the high school marching band, as well as the pep band. We pulled in the driveway and just sat for a few minutes talking. I suddenly felt so overwhelmed with emotions evoked by the very sight of the blossoming young man sitting in the passenger seat next to me. All of a sudden, all those little moments that made up the young life of my firstborn flooded my mind. It felt unfair. I thought I had time. I thought I would feel ready for this day, this becoming an official "teenager." But I wasn't. I'm not. And all the time I thought I had years and years ago when my days were filled with therapy and figuring out how we were going to raise his brother... did I ever stop to think about how I was raising him? I know I did. But rushing upon me was an avalanche of guilt. The guilt I felt as a new mom unknowingly struggling with post-partum depression and the experiences and emotions I feel we were wrongly gypped out of because of it. The guilt I felt in relying maybe too much on Ben to be a big helper. Growing him up too fast. Being too hard on him. Looking back on old videos and hearing his tiny little voice and I don't remember seeing him the same way when he that little. He always seemed so old. He was always so independent. He could correctly operate DVD and VHS players without harming the DVD's or tapes when he was just 2 years old. Because I taught him how so he could do it himself if I needed to deal with Sam.

That heart-to-heart we had in the car began as yet another discussion about Sam. We had recently had multiple conversations with all three boys about treating each other with love, respect, and kindness. Stop the snark. Stop the sarcasm. Stop purposefully aggravating. Stop responding with frustration and try to be more patient. Stop, stop, just... STOP. And earlier that evening at dinner, Sam had been too bossy, too frustrating, and too aggravating to his brothers. We corrected him, and he ran off, upset. While Kyle took Ben to the game, I was doing laundry after dinner. Sam interrupted me and handed me a note written in his perfect handwriting that read, "I am the worst brother EVER." He hates that he is bossy and aggravating. He hates that Josh always wants to be with Ben and hardly ever with him. It broke my heart to hear my son say in his broken, tearful voice, "I feel like I'm not a match. I'm not a match for this family." He feels like he doesn't fit in. Ben tries to just play with Sam. I've watched him. But Sam always ends up getting hurt. Either physically or emotionally. And Ben feels like a failure. Every. Time. And every time, I feel his pain. As if it's somehow my fault. I know it's not. Part of all of this is just that they are brothers, and brothers argue and get on each other's nerves and hurt each other in various ways, not always intended.

So as we sat in the car in the garage, it all started to come out. I told him that I knew it wasn't easy being Sam's older brother. Not because Sam is so awful. I don't mean it that way. It's just hard on Ben. He's always had to be the bigger man. Not just because he's literally bigger, either. I told him I see him. That I know there are a thousand things he could have said or done but didn't because he knew that it wouldn't be helpful to his brother, not to mention the fact that he'd get in trouble. But that showed me he is growing in self-control. In compassion and empathy. And that I was SO incredibly proud of the young man he is becoming. Of course, I couldn't say any of it without a few tears. But Ben, being Ben, joked with me and said in a high voice, "Don't cry, Mom. Because then if you cry, then I will cry, and then..." He was being all silly and it cracked us both up. He has always made me laugh. Just like his dad.

Moms of kids with special needs and neurotypical siblings, you're not alone. You feel like you put the needs of your child with special needs first. Sometimes, you have to. Sometimes, it's literally a matter of life or death. And your other kids stand back and watch from the shadows. And when the quiet of the night comes, especially the night before those kids' major milestone birthday, you wonder if you did enough. You feel confident you didn't. That you didn't love them well enough. That they didn't get enough of you because you were needed elsewhere.

But ask yourself this: do you love them? Do you love the son or daughter standing before you?

Towering over you as my son does? Do you love him? The answer to that is all you need for this moment. Life with special needs shatters the picture we all had in our heads about what our family life would look like before life really happened. The fact of the matter is that the pictures that exist are all that matter. My mom has a magnet on her refrigerator that says, "What could have been doesn't exist. So don't even go there."

I know that for every "I could have loved him better in this way" thought, there are a thousand, "I DID love him in this way" moments. Focus on what you can do now, rather than what you could have done more of, or better.

Ben is now 13 years old. And before I know it, he'll be getting his driver's license and applying for college applications before our student loans are even paid off. And when those momentous occasions arise, I'll be in this same place again. Wondering if I did enough. Feeling guilty for the things that have made life difficult or complicated for him. But those very things are exactly what God is using to make him who he is. Ben's story isn't over yet. All of these things - even the things he didn't get to have when I would have wanted him to have it - are being used in his life to make him into the man God desires for him to be. I have to trust that even the ways I feel I have failed as a mother will be redeemed one day. But what I do know is that I love my son, and I am doing whatever I can whenever I can to make sure that he knows and feels that.

Maybe your neurotypical son or daughter is only 1, or 4, or 7 years old. Maybe they're 42. Whatever season of life they—or you—are in, it's never too late to find ways to love them today. You can't always give them everything they want.

But if you love them, you are always everything they need.