An open letter to the siblings of those with special needs. Written by someone who understands because she was you many years ago. And when she sees you, she sees her younger self. Enjoy the letter, the feelings and the love.
It often happens when I least expect it. I walk into a room and introduce myself to your sibling, to your parents, and finally to you. I find you sitting quietly beside your mom or dad, waiting patiently for your brother or sister’s appointment to finish up. Though you may not know it, we have a lot in common. I sit down in the rolling chair and log into the computer to start the visit, and I think about what I would tell you if I only had the chance.
I would start by telling you it’s okay not to be perfect, that there will be days where you don’t want to wait at the doctor’s office. There will be days when you are angry for your sibling, angry that they have to go through something that other people don’t understand. There will be days when life feels too big, too messy, too unfair to approach it with the composure and the maturity you feel you should have. You may even be ashamed of yourself for it. But we don’t expect perfect behavior from adults, and it should never be expected of you. The people who tell you that you don’t deserve to have these feelings are wrong. They may mean well, but they are still wrong. There is space in this life for joy and sadness, for gratitude and anger, and you deserve the space to process them all.
I would also tell you that the world can be mean. You may think that children are the worst offenders, but it is the behavior of adults that will hurt and shock you the most. After all, children have to learn it from somewhere. You will find a world that does not always accommodate your sibling and others like them, a world that would rather leave them outside than build a ramp to invite them in. You will feel hurt, and you will feel angry, at times angrier than you ever thought possible. Again, it is okay to feel. These emotions are powerful, and they will shape you and the way you see the world. Empathy can grow through pain. This pain may even become your north star, may lead you to fight for a world that is more tolerant, a world that is more inclusive, knowledgeable, and just. A world that is kinder than the one that you and your loved ones endured.
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I would also say to you that there are seldom easy answers. The future might feel secure at times; other times, it might feel scary and uncertain. Parents get older, medical conditions change, the world itself forces us to adapt. It is difficult to know what is coming, where your family will go next on their journey. Where you will go next. Learning to live in this uncertainty is one of the hardest things I have had to do. I don’t have much advice for this one; I am still learning, and that learning is lifelong. But I will tell you that you are resilient, perhaps more so than you know. Know that there are people out there to support you, and that you don’t have to do it all on your own. Know that there is always help, and never be ashamed for having to ask for it.
Lastly, I would tell you to love. Love your sibling, love yourself enough to give the grace you give to others, love others with the love you wish your family had received in their hardest times. Love is difficult. Love is complex and painful and beautiful all at once. Though the more I see, the more I don’t think you need me to tell you this one. I see you sitting on your small plastic chair, holding your sibling’s hand from time to time. I watch the way you help them, advocate for them. I watch the joy in your eyes as they show me all the new things they learned how to do. And I know that in spite of it all, you will be just fine.
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- Balancing the Care of Siblings with Different Needs [5]
- Siblings Are Special, Too [6]
- Engaging Siblings to Build Social Skills: A Relative Solution to a Complex Problem [7]
- Getting Real about Resentment and Finding Small Ways to Make a Big Difference for Siblings [8]
Free Downloads
- How to let Young Siblings Know you Care [9]
- What Siblings would like Parents and Service Providers to Know [10]
This post originally appeared on our March/April 2023 Magazine [11]