Dear typical sibling of a brother or sister with a disability,
Today I want to speak to you as a parent, perhaps not your parent, but a parent nonetheless.
I know you’ve had to sacrifice so much, and I wish you hadn’t. For the many times you’ve thought it wasn’t fair, we’ve felt it too. And if you’ve had to miss out on life experiences, please know that we wish we could offer you the world.
Perhaps at times you’ve felt overlooked, because your sibling’s needs demand all of your parents’ attention. But they see you, they see you in the cracks of their vision, and their hearts hurt for the moments they’ve had to sacrifice time with you. But many nights they think about you, of the wonderful person that you are. I want you to know that the pride and love they feel for you could never be measured, you are what keeps them going many times. You make their days brilliantly beautiful.
And you’ve told us – your sibling with a disability has affected you too. Yes, there’s been sacrifices and some things you’ve had to give up, but you’ve gained so much from your sibling too. You’ve said your siblings with disabilities have shaped you into who you are today. We look at you, and we’re sure there is not a more compassionate, caring, accepting, and kind human being walking on this earth.
We’ve seen you be frustrated with your sibling, because after all you are siblings. We’ve seen the frustration in your eyes. But then something happens – perhaps it is a look that as parents we don’t recognize – but we see that frustration be replaced with love. You can be annoyed by hands pulling at you, and suddenly be a willing participant in the biggest, sweetest embrace that any siblings could ever share. I see the love in your eyes for your sibling, and I cannot believe that the two of you can share this kind of love. It’s not typical, but it runs so deep, and it reflects a quiet strength in you that brings me to tears.
We’ve seen you stand up to the bullies, even when it was scary. Because you understand so deeply that it isn’t right to diminish anyone, in any way.
And you have extended not only a smile, but a friendship to the kids that others so easily overlook. Because you don’t, you don’t ever overlook people. You notice them, you affirm them. With your smile and friendship you remind them that they matter in this world too.
You are perhaps more mature than someone your age. You’ve probably had more responsibilities than most of your peers. I guess in some ways you’ve lived a different life, life impacted by disability. And every day you’re out there, moving in this world with an understanding about the beauty and value of life that makes you stand out, an understanding that few people posses.
You’ve known these truths from a young age, they’ve always been a part of your life. As the parents, we arrived to those truths much later in life.
And you smile at life, enjoying every moment. You are stirring the people around you, helping them to see what you see, to know what you know. You are affecting people’s perceptions of disability as you advocate for your sibling, as you give them a voice when needed. You have willingly embraced this role…it humbles me, it brings me to tears.
You are moving those around you, and you will continue to do so.
As parents, we hope to make this place a better place for our kids. But as the siblings – with hearts so full of acceptance, compassion, an understanding of the value of life – you will go out into this world and change it. Not just for your siblings, but for all of us.
Thank you!
If you ever wonder who we look up to, it’s you. We could not be prouder or love you more fiercely.
***
Siblings and Down Syndrome: So Full of Love
I Wish You Could See What I See
Special Needs Parents, Are You Surviving?
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Thanks for this post :’) I have a brother with Down syndrome and when I was reading of these I completely resonated with all of them
This was such a great article, thanks so much for sharing! I am putting together a book of stories of siblings who have a sibling that has Down Syndrome, so this hit home for me!
Thanks,
Chloe
Chloe, are you still taking in stories? My youngest wrote one a few months ago and we forgot to send it to you!
Thank you so much for posting this. Being the brother of a sibling with autism has had a profound affect on my life. You have a true insight of what it is like to be a sibling. It really helps to hear someone else articulate what it is you feel. Thank you again.
You wrote my thoughts exactly. I think my daughter is the most amazing sibling to her disabled brother and I know she has suffered and sacrificed for and because of him but you wouldn’t find a more loving sister.
I don’t remember how I came across your post, but I have since saved it to my “favorites”, read it several times when I needed to, and shared it with other siblings and parents of special needs kids. Thank you so, so much for writing this! These are things we “typical siblings” need to be told! We need to hear that someone sees our strength, courage, and love, and also sees us struggle and overcome! Again, THANK YOU!!!
Brittany, I am glad to hear it has meat so much to you!
So true. So well said. I sent this to my 15 year old son–the sibling of our 20 year old son with ASD. Thank you.
what my daughter had to say about this, her lil brother from Our Guide Lewi, & thank you for this wonderful article: I’ve read so many articles similar to this one, and they always ring true to my heart.
My little brother means the world to me, and I will never understand how anyone can see those with developmental delays any differently than anyone else.
Lewi is just like any “typical” soon-to-be 3 year old. He throws tantrums, he’s sometimes stingy, he loves to play, he has his good days and he has his bad ones. He does have something a little extra though.
Those sweet, almond shaped eyes that seem to look deeply into my soul, that are wiser beyond their years and make my heart melt with only a passing glance.
His perfect, tiny seashell ears that upturn with each wide grin that graces his face.
His cute little monkey feet which are much more perfect with his sandal-toe gap
His unconditional, unwavering love. I have never felt the kind of love that I receive from Lewi from anyone else.
It’s a special kind of love that constantly tugs at my heartstrings and hurts in the best possible way.
My baby brother has made me a better person. I am more understanding and compassionate, more patient and loving. He has shown me that even when things go awry, there is always something to smile about.
He has shown me strength, because I have never met anyone as strong as him. He is my light at the end of the tunnel.
Happy National Siblings Day.
Tiffany, I love this! I would love to share this on my Facebook page maybe with a photo of your kids? Here is my email ellen at ellenstumbo dot com
Thank you for posting this. Not going to lie, it made me cry a little bit. 🙂 I am a sister to a handsome guy with Downs Syndrome. He is the light of the world. Yeah I have missed some things in life… but I have gained so much more. Being involved in Special Olympics with my brother has allowed me to do things I never though possible and has changed and grown me since I was young. I always knew my brother was “different” but always in a GOOD WAY… it took the first time he was bullied in front of me that I realized that not all humans were taught compassion for others and that I would be standing up for him the rest of my life. He’s not only my buddy… but a friend. 🙂
Thank you for the article (and although it made me cry a little…) I loved it!
-Michellen
Michellen and thank you so much for sharing, because for me, as the mom to a wonderful typical sibling, it is good to hear from “your side” and know that although some things are hard, it is also so good.
Ellen, I really enjoyed this post. My sister Cindy is now 57 years old, I can remember chasing off the bullies, holding while she cried, and playing with her when no one else would. Growing up with Cindy did make me the person that I am today. I worked in the field of Development Disabilities for 22 years officially, but have always said that I have been in this field for 57 years. I retired two years ago, to raise my three Grandsons, who have some difficulty due to mother using drugs and alcohol while pregnant. The quote hanging on my wall as a daily reminder is “I may not have gone where I intended to go, but I think I have ended up where God needed me to be. Keep writing, I enjoy reading your thoughts. God Bless
Thank you for taking the time to leave a comment and share about your experience. I would say you are definitely not a typical sibling 🙂