When Your 6-Year-Old Has Become a Caregiver as Well as a Sibling

I started this blog to raise awareness mostly, about Alexander’s disease and what it’s doing to my son, Corry. But it’s also important to recognize the impact life-limiting conditions can have on other family members. My blog page is a place for my strong feelings. This particular piece is to recognize that often “the other child,” or children, from families similar to ours can be overlooked and undervalued. They don’t get the credit they deserve.

The guilt I carry for my daughter, Lily, is ever present. She holds so much on those little shoulders of hers. She has no choice but to weather this storm. The cards we have been dealt have seen Lily take on a lot more than she should have to. She can appear to be a happy, sociable child, full of energy, full of life — A typical 6-year-old girl. And yet she is worn. Tired.

I have many days where I crack. I have never been an emotionally easy person. I am especially fragile of late. When functioning on little sleep, an empty stomach and behind cloudy eyes, the smallest of difficulty can feel intense and overwhelming. I can damn well blow it all out of proportion. There have been times, too many times, that I have been a person I don’t want to be amidst my fear and anger at having to watch my son in pain, violently sick, unable to hold himself up, frightened at what is happening to him.

At the sight of his NG tube coming out just as we’ve arrived home from the trip to hospital to have it put back down already.

At the state of the house while I’m just sitting around staring at it all, not an ounce of energy to do anything about it.

During these times, I have said some absolutely unnecessary things to Lily. I have acted selfishly. I can resort to becoming a spoilled brat at the unfairness of it all.

She once gave me this response to my outburst: “It’s OK mom. You feel sad about all of this. I love you.” She cuddled me while I cried. I cried out of exhaustion. For release. I cried for the overwhelming guilt I had that she felt I should be excused for speaking to her that way, that she was coping with her emotion in a far better way than I was.

Mostly, I cried because I couldn’t quite believe how absolutely amazing she is. How proud I was and am of her. She could see my weakness and run with it. She could make sense of my actions and not take it personally.

I feel sad that she has had to become so emotionally ready at such a young age, but also blessed that she has been able to do so and find the strength within herself to take this on.

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Lily is a sibling to Corry and a daughter to me, but she is also a caregiver, and a truly amazing friend. She’s a person who sees me at my worst and still shows me love. She’s a little, but very grown up, 6-year-old girl who I hear get out of bed in the morning and whisper to her little brother, “Come and play trains with me, so mom and dad can have five more minutes of sleep.” A sister who so often has to take second stance to her brother’s needs, but adores him nonetheless.

You are everything to me, lovely Lily. I hope that you know. I am here for you, as you are for me. Even when I have to be away from you, for appointments and hospital stays, and when I miss your school events and your activities.

When you can’t have your friends over to play.

When we are not together for your birthday.

When you have to go to stay with other family members.

When Corry has slept all day and therefore stays up later into the evening, while you stick to your routine.

When he gets to choose exactly what he wants to eat, even if it’s chocolate all day long, because anything for him is better than nothing.

I know it must seem unfair.

That at times you will feel hurt and pushed out. That you must feel sad and fed up with all of it. I will feel it too. It’s never my intention for you to feel bad. This was never part of my plan for you, or for Corry. It was not the plan for me or for Dad. But we must roll with it. Through these tough times we will be connected like no other. Together we can see through the deepest darkness.

I love you so.

A version of this originally appeared on littlehartsblog

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