Thoughts from a sibling of a disabled child

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Declan, my youngest son, is only 8 years old. He will turn 9 in May, although I think he is 9 going on 29 at times. His life is unlike most boys his age, and to be sure, so is his view of the world. In those short 8 years, life’s experiences as a brother to a severely disabled, medically fragile – and palliative – older sibling, have provided him with opportunities to develop his innate sense of compassion and empathy. And while he is the younger brother, he has clearly taken on the role of the “big” brother as he lovingly tends to Brendan’s needs.

In the past few months, Declan has said some tremendously insightful, wise-beyond-his-years comments. I asked him to actually write this piece for me (because much to my pleasure, he is proving himself to be quite the great little writer!), but he said he’d rather talk to me and I can write it out for him. Fair enough, I thought, he is only 8 after all! So, I recorded our conversation. What follows is a direct, unedited, transcript of his words.

He wants people to understand our life, his life, and what Brendan Bjorn means to him. I want that, too.

With much pride and love, I share the words of my amazing little boy, Declan…

“So Brendan is more special than any of us. I mean, what’s the chance you’d have a son? Sometimes you can’t because it could be too late and other reasons. Brendan’s a rare child to have and he even teaches us things. He’s really special. He’s different to all of us. Well, we all are different, but he’s more different. He’s more different than really anyone – that’s what makes him special. He has broken bones in certain places to show how much CMV has gone in him. But he still does teach us things.

It’s a hard life for me and you, Mom, because really we have to work with Bren, we have to do so much for Bren, so it’s just really hard to do lots. Well, sometimes we can’t get in certain places it would be hard and we even have to buy ramps that cost so much and we just have to buy them. There’s always just a problem all the time. We get one problem out of the way, there’s always another problem and we just still try to sort it out. And then it’s just really hard to deal with Brendan…I’ve always wanted a brother that I can play with and I really can’t but it’s just hard that I can’t because like I’m sometimes lonely at times because you always have to do the work with Brendan and I understand that you have to do that but yet again it’s hard that I can’t play with Brendan.

And we have to buy him a wheelchair that sometimes people who just broke their leg would need it but we need it for a serious condition because just normally if you broke your legs you would just have legs that would hurt bad, but everywhere on him hurts. He’s different from us. Sometimes people don’t like people that are different. He is really different. Some people don’t like that we’re all different but that’s what’s good about us – we’re all different, we have different personalities.

Brendan really just sits in a chair all day but it’s just not fun for him at times, yet again we always do come up to him and play Nemo and we get stuffed toys for him. He is happy with the life he has now because like there’s no turning back to having a different son so we have to stick with the same one. I’m not saying that I do want a different one – I mean he’s perfect the way he is. Everyone is perfect the way they are. Because even if you’re really different you always know there’s something really fun to someone else.

I think [our family] is fine, I’m used to having this family, anyway I still like this family and there’s no way that I wouldn’t like it because Brenny is really nice. Even though Brendan can’t walk or talk, he is still my brother to me, he can still show affectionate love even though he can’t really say it, but he can show it, it’s really just like sign language where you don’t talk and that’s really what he does but he can’t move his arms. Because when he looks at you, he knows that you want to, and when he laughs and smiles at you that means that he wants you to come over to him. So, the thing is about him is that he is really different and that’s what’s good about him. I like that people are different but he’s really different and that’s what I find really fascinating about him is that he’s different and not much people have this. It’s rare to have them and even not much people have it so they don’t know how hard a life it is.

Even though it’s hard, I still love Brendan because he’s my brother. I know someday we will lose Brendan and he’ll be with God and I don’t want that to happen but maybe you’d be able to spend more time with me – but I don’t mean I don’t want him here I always want him to be with us, I just mean…he’s my brother and I love him so much…”

And with that, we ended the talk holding each other and crying, talking about our little family and how we will always be there for each other, through it all.
The tears flowed as freely as the love. 

collage of boys pics

 

 

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