It's not easy watching your sibling struggle growing up. You tell yourself, "They're the sick one, not me." You put your needs aside. You sometimes forget you even have needs. You help as much as you can out of love, the seemingly unbreakable sibling bond, guilt, convenience and because you feel you have no choice. You're fine because you're not the sick one... that's what everyone tells you, anyway.
Truth is, you're far from feeling fine some days. You live with the immeasurable guilt. You wonder, Why not me? You hope and pray each day for a cure. You write a letter to Santa wishing for something that will make life easier for your brother or sister.
Again and again it feels like no one knows or understands how you feel. Many people don't know what the heck they're talking about; they just talk to say something. People say things along the lines of, "Could you imagine if you were like him; you're the lucky one!" ...and you just want to scream. You feel anything but lucky. You feel helpless. In my case, there was a 1 in 4 chance for both my brother and I to be born with Spinal Muscular Atrophy, as each of our parents unknowingly carried a mutated gene for the disease. I inherited one defective gene; my brother inherited two. He got the disease; I did not.
I know not everyone's story is the same. Some siblings may have better coping skills to deal with the ups and downs. Some people are naturally good at looking at the bright side, while others need some help finding the light... and that's OK too.
I want you to know, it's OK to need attention too. You need love. Your parents try to make time for you too, they really do, but your plans may not always happen. You may kick yourself for feeling sad because you don't want to resent your sibling or look selfish. You might be confused as to why it doesn't feel right to feel disappointment or let down when it comes to anything for you. It's nobody's fault, and for that reason, you stuff down what you feel.
The unexpected hospital stays give you anxiety -- so does the phone every time it rings or if a family member pauses before speaking on the other line. In the back of your mind is always, What now, what next, what happened, is he/she going to be OK? You choke down your anxiety over and over because you're "not the sick one."
You love your sibling with all of your heart. You're their best friend, sidekick, the Robin to their Batman; they're just a regular kid to you. You don't see the disability first, you see the brother or sister who gets on your nerves, pushes your buttons and steals the bigger piece of cake. To you, everything's "normal;" it's your normal. You would give anything to make their life easier, and some days it feels as if you have given everything, but that it's still not enough. Take a step back, take a break; take a little time to yourself. I promise the overwhelmed feeling will subside, even if it's just a little, if you allow yourself some time for you.
I want you to know, you're not alone. You're feeling anxiety? Let someone know. You're scared almost every day that your sibling isn't going to be OK? Let someone know. It's not easy to live in fear of losing someone you love. Yes, you can embrace the fact that life is short and each day is a gift, but you can also feel scared too; it's OK. Your life matters too. Your feelings matter too. Your health matters too. There really are people in this world who do understand. I understand. Plenty of other siblings understand.
You have a chance to grow a totally different level of understanding and compassion for others. You have the chance to set an example of acceptance for those around you.
Beyond that, please do not devalue your feelings because you think you have to. Take care of your sibling, love your family, be the rock that holds everyone together if that's the role you want to take, but don't forget about you. You matter; don't be afraid to speak up, don't forgot to take care of yourself. You need love too.