“Mom! Dad! Mom! Dad!” This is my wake-up call every morning. Over and over, Jack yells this until one of us goes to his room to get him. When we moved to our house in September, Jack got a big boy bed in his new room. Partly out of concern for the number of changes that he has experienced over the last year and partly because if it ain’t broke why fix it, we went ahead and put his crib in his room too. Even as a 2-year-old wearing 4-year-old clothing, when he is completely stretched out, he still fits in his beloved “little” bed.
He talks a big talk when it comes to his big boy bed, but has only slept in it one night. That one night, I watched the monitor as he tossed and turned until he found a comfortable enough spot. It is hard for me to describe what happened to my heart, but watching that brave boy work out his own solution by propping pillows and readjusting blankets until he finally felt safe enough to drift off to sleep on his tummy was nearly too much for me. Not once did he call out for help. He didn’t need me.
The feeling is no different than when he learned that he could give kisses by closing his mouth and puckering his lips instead of open-mouthed licking your cheek or when he learned how to ask for “water” instead of “lala” or how his entire curled up body no longer fits on my chest. I hear far more “I do it by myself, Mama” than I want.
Once his feet hit the floor each day, he is asks, “Where’s Ellie?” as he runs towards her room. “Hi Ellie, Hi Ellie. How doing today? You a sweet girl all day,” he tells her as his face is turned to the side in order to see her through the slats on the railing of her crib.
This morning I asked him if he thought Ellie was cool. “No. She a Pteranodon,” he replied, a compliment of far higher regard than anything that could be described as cool. Dinosaurs are at the very tip top of his list, even higher than cinnamon rolls and sprinkles.
The feeling seems to be mutual. If she hears his voice, Ellie scans the room until she can catch a glimpse of Jack running by. Smiling her biggest, gummiest smile and giggling while giving a very good impression of one of those floppy, waving inflatable tube guys you see in front of used car lots, she watches every dump truck he drives along the floor and every lap he and Skooart race around the couch. She just wants to be party to her brother’s fun.
Jack went with me to pick up Ellie from school the other day. While I was still scanning the classroom for her, Jack instantly found his sister playing on the floor. In the parking lot, I had a tough time getting Jack to sit back to strap him in his seat because he was too busy talking to Ellie about his day. Before we even pulled out into the street, there was a back and forth of growls from the backseat. Ellie started it and then Jack would respond by mimicking her. One would growl, one would laugh, and then they would switch roles for miles.
I remember putting the two of them in the bathtub together for the first time. Even though Ellie can’t talk, they share some sort of language and can communicate with each other. After a few minutes of splashing and showing her his toys, Jack turned to me and said, “Ellie likes it.” And she did. She was laughing for the first time in days.
One night after Ellie’s second surgery, we were able to have dinner with Jack. He told us that he wanted to go see her. He knew she was at “Ellie’s Hospital” and that was the place he had first met her months before. Even though he didn’t understand the details, he could see from pictures that she had a fresh incision covered with purple Dermabond on her chest and a system of tubes and wires on her body. He noted these as new accessories that she did not have when he saw her last. At this point, she was a couple of weeks out of surgery, but was battling pneumonia and weaning from a number of narcotics. She was kept mostly sedated to keep her from thrashing around because of withdrawals and if she was awake, she was inconsolable.
We could have kept him from seeing her, but in his brave big brother way, he insisted. We prepared him by telling him that he couldn’t touch anything, not even her, and that I would hold him the whole time. He understood and agreed. When we got to her room, he immediately grew concerned. I could see it on his face and in his furrowed brow, a familiar tell-tale sign in his father too. I talked to him again about how the tubes were giving her medicine to make her better so she could come back home. He wanted to “bring her home now.” In broken toddler speech, he told us to give her all of the medicine and unhook her so she could leave with us. He got louder and louder in his demand and it was time to leave. On the way out of the room and down in the elevator, he was crying over and over, “put her in car now.”
He will be her fierce protector. Just as any brother loves his sister, he will be no different. I hear and read about how having a sibling with a disability gives one a different perspective on life; priorities are clearer. The disabled sibling becomes something like a compass for the other sibling. All bright beacon of light sort of stuff. While it is a nice thought, I do not believe it is a rule.
I listen to Dax Shepard’s “Armchair Expert” podcast. (I take any chance I can to keep in touch with a Braverman.) I learned when he interviewed Ashton Kutcher that Ashton has a twin who was born with cerebral palsy and is also the recipient of a heart transplant. Ashton told a story about a conversation he had with his brother when they were older. He said, “… he said to me, you know every time you feel sorry for me, you make me less. … The only life I’ve ever known is this one and so don’t make it less. …It was a massive wake-up call because … I realized at that moment that I had felt bad and sorry and guilty my whole life for the fact that my brother was going through this and I wasn’t and so it flipped a switch for me. … I can have compassion and I can have care, but compassion and care is very different than feeling sorry for someone … in a sense feeling sorry for someone is a nice way of saying pity, and it was a huge shift in how I see people and the world.”
That interview hit me like a ton of bricks. Ellie’s life is definitely no less. One day, it will most likely be up to Jack to take care of his sister. I think a lot about how that will happen. Taking care of her right now is overwhelming. One day, she may be more independent and self-sufficient. She may not. I do not like that we have saddled Jack with this future. Then again, who am I to think that he will see this as a burden? He is a caring, empathetic, sweet boy who deeply cares. I can see that already. However, I don’t know what it is like to walk a mile in his Lightning McQueen shoes.
While there is no crystal ball for their future, I can’t help but think about my relationship with my own brother and sister. Looking back, it is incredible to think about how we have grown and learned how to better support each other over the years. My siblings have taught me so much about life, about empathy and how to unconditionally love. I know that no matter how bad I screw up, I have two people out there in the world who have my back. They will let me know when I am wrong all while being my loudest cheerleaders. I am so glad I have them.
My hope for Jack and Ellie is that they can be each other’s comfortable spot. Like Jack rooting around during his first night in his big bed, I want them to find a sense of security in each other. I want Ellie to know that she can always count on her big brother. I want Jack to know that he can always count on his little sister. This world can be a tough place and the older we get, the harder the challenges become. Knowing that you have someone who grew up with you in your house that you can call on to stand with you in the storm or someone to help you celebrate your hard-fought wins is special. I know it will not always be hand holding and cuddle parties, but I want them both to have this safe place to share.
I believe they are on the right track. At the supper table Ellie sits between Jack and Ben, but her highchair must be touching Jack’s chair. Jack likes for his sister to sit in his lap and to hold her hand when they are reading. I find cars and plastic snakes in Ellie’s bed that Jack has put there. He sits in front of her on the floor and talks to her about his dinosaurs. I can’t wait for Ellie to tell Jack about what she has learned at school or force him to sit for his first tea party.