Medically Complex Siblings

Since we lost Declan and have been finding ways to cope with our grief, I got Nash a dog. This dog has been a blessing and a curse, and deserves her own, separate blog post. But she has helped highlight some issues that I didn't even know were there. I know that siblings of medically complex children have their own sets of issues, but I never really realized that Nash should be included in that bucket. I thought that we had done a better job, that we'd protected him better.

Maybe I should back up. What issues is she talking about? I imagine you are wondering. A quick google search will spell it out pretty fast. Many of these children have their own challenges, specifically around feeling like they can't be a bother to their parents because their sibling is too much for them to deal with already. They often struggle with jealousy and feelings of neglect, while also experiencing the anxiety that their parents experience when their sibling has a medical crisis.

But we had done better! We showered Nash with love and affection. If anything, sometimes I felt like we swung too much in that direction. We adore Nash and love spending time with him, and, let's face it, he was always easier than Declan. When we would divide and conquer, it was a privilege to get to be the one to take Nash to his stuff instead of staying back to be the nurse and caregiver for Declan. While I hate admitting that, it's true. We loved Declan, but Declan was always a ton of work. And as I write this, I'm realizing... maybe that was part of the problem?

Kids are so much more in tune with things than we think they are. Sometimes more in tune with things than we are. Nash must have picked up on the fact that we always knew he was more fun to do things with. That he was the 'easy' kid. So that's what he felt like he needed to be.

I'm sure you're wondering what I've been seeing that made me realize that Nash was affected in this way. He's always been considerate of others, but I have started to realize that he is TOO considerate. He needs to take up space and advocate for himself more. He needs to get in the way and be the squeaky wheel sometimes. And its small things. Like when he needed me the other night. His dog was sick and needing to go out a half dozen times in the middle of the night to go potty. And instead of bothering me, he took her out. On his own. 6 times. He is nine years old! He needs to sleep. He's too young to take on so much.

"Why didn't you wake me to help you?" I asked him.

"I just didn't want to bother you," he said.

The two nights before that had also been disrupted, but not as bad as that night. The relief I saw on his face when I told him that the next night he was going to sleep in my bed with daddy and I'd go sleep near the dog so I could take care of her if she needed something was prominent.

It's also not speaking up when he's getting scolded for something that he didn't do. Or correcting people if their assumptions are wrong. He came up to get me in the middle of the night, again about the dog, not long ago.

"She keeps coughing," he said.

"Huh?" I asked. My brain was not registering the issue. "Does she need to go outside?"

"No," he said. "She's just waking me up."

"Ok, then put her in her crate and go back to sleep," I told him.

Well. Duh. He didn't come get me because she needed to go out. He came up because he was worried and I completely missed it. When I woke up the next morning and talked to him, I asked him.

"Buddy, did you come up last night because the dog was waking you up or because you were worried?"

"Because I was worried," he said.

"Oh. Dude, why didn't you tell me that when I told you to go back to bed? I obviously didn't address the concern you were trying to raise. This is what I mean by needing to speak up for yourself, sweetie."

Nash's therapist tells me we're doing the right things by reinforcing to him that we want him to tell us. That it's safe to. That we will love him even if he isn't always the low maintenance child. She says that stepping in to physically put myself between him and the dog was the right thing to do. That I was showing him that I'd protect him too.

I know that no family and no situation is perfect, but I really had thought that we'd done a better job by Nash throughout our journey with Declan. And I wonder what issues may come to light over time. It makes me sad that I missed these things.