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, and 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.
This post first appeared on ellenstumbo.com
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Thank you. As a sibling of a person with profound mental and physical disabilities is an interesting thing.
It defines you in good ways by giving you strength, endurance and empathy. It has made me the type of person who has become an amazing morher.
But that’s not necessarily because of the good things that happened in my growing up. Frankly, our parents were so caught up in the care of my sibling, there was nothing left. We were left to flounder, and words like this were never spoken to us.
It’s also a huge responsibility, that we did not choose, and most of us are left with. Because when you as the parent are no longer able to care for that small child, as they become adults, now to much for you as aging parents to care for.
I make sure my sibling is taken care of, as do most of us. And we do it with honor and pride.
Please continue to try so hard to make sure your other kids understand your feeling and have time.
These words need to be spoken, and are not.
Truly this is so beautiful . . . my Mom told me every day, “I’m so proud of you” and I never really understood for what — my good grades ? that I was a tough girl ? that I stood up for my little brother to bullies even though I wanted to smack him around myself ? I think you put it in the words she could never share with me before welling up into tears every time she said “I’m so proud of you.” Kudos Ellen, and I’m proud of her, and of you and your kids too. Somehow we all get where we are going in the end, even if we aren’t aware of the steps we climb and stumble over to make it happen. much love ! Becky Andruskiewicz
P.S. Mom is still with us, and still tells me she’s proud and still wells up without explaining why. I think I will share this with her – thank you !
Thanks for this lovely letter,
I’ve put it in my resources folder to send out to families – I run a sibs program in Melbourne, Aust, and we love things written by families from the heart – its the same the world over, and we’re grateful for the diversity and struggle and achievement and love in our lives!!
Well done.
xx
Oh, how true this is! I couldn’t do this without my other kids, without their love and support of not only their brother, but also of me and each other. I can’t count the times they’ve been there for each other when I have not been able to be there.
I was a sibling of a disabled little brother. This article rang ttue for me. Oddly, I ended up the parent of a disabled child who has had it even worse than my brother. I try to look at it as training for the patience I would one day really need. It gave me a different level of empathy. Even now I can’t stand asside and watch people make fun of anyone with a disability unless they are making fun of themselves.
Please check out my book, Hey I’m Alex” on Amazon…. Its all about this subject.
i love this! so wonderfully said and true. i just wrote about it myself – http://www.fragilex.org/2014/hope-inspiration/best-sister-in-the-world/
I was in tears about two sentences in- thank you for writing this. I will be sharing it with my dd older siblings, whose lives changed the instant she was born. They are all my heart and soul, and some times the pain I feel over our inability to provide them with everything they need is unbearable. I hope this will convey to them how amazing and special they are, and how much we love them equally, even if our time is not always divided equitably.
I will be sharing this with my 12 yr old daughter, who has verbal dyspraxia, but otherwise is normal. She has had to put up a lot from her 15 yr old sister who has Autism and ADHD combine type along with anxiety issues. Ms 12 has been on the end of Ms 15 tantrums and meltdowns when they got out of control before we knew we were dealing with ASD, as it took over 7 yrs to get to a diagnosis. Ms 12 is very mature for her age and sometimes I forget she is only 12 and that she needs a lot more of my time than she gets as she doesn’t make any fuse. I am very proud of both my daughters. Ms 12 does support me a lot, making school lunches when I have been too sick to do it, just getting on with her homework etc with being asked. And going out of her way to play the games that ms 15 wants to play.
Oh Fiona, give your girl a hug. What an amazing young lady you have raised!
This is beautiful. I will be sharing this with my 10 year old son, whom I have always said had to grow up too fast. He and Sam (autistic) are 19 months apart, so Ben barely remembers not having a brother. He was 3 years old when his second brother was born, who although is not diagnosed with special needs, has been diagnosed with essentially “something.” They just don’t know what it is. It sometimes looks like autism, sometimes not. In any case, Ben has sacrificed much, been put on the back burner once too often, and sometimes overlooked in order to attend to the needs of his brothers. He was always a very independent boy, even within his first year. I hope and pray that as he transitions into adolescence, and then into an adult, that the frustration I see cropping up far more often now will also transition into fierce compassion and love for not only his brother(s), but for all individuals marginalized by their peers. It makes me cry to think that maybe I failed him in some way, but knowing I have done the best I could and I can only continue to show him as much love and care as I’m able and still do what I need to do for Sam. God bless these special brothers and sisters.
Sarah, thank you for sharing. Sometimes all I can do is pray and trust that the Lord covers the cracks I am unable to fill.
Did you cry as you wrote that? Because I’m sitting here crying, reading it. I don’t realize how much I ache for my siblings-of-SN kids, but I do. How do you keep from breaking down when you think about this? It’s heartbreaking to me for some reason today…
Oh Laurie, how did you know? I was bawling! At some point I had to stop typing and grieve for and admire my typical daughter. To say I am proud is not enough.
: ) Thanks.
I’d like to think my mom, who has since died, wanted to say this to me but she didn’t know how to do so. I’m 48 years old, and I’ve been my 35 year old sister’s —parent, best friend, and yes, sister since I was 13.
You’re right it isn’t easy. That’s ok. My shoulders are a little bigger and a little stronger. I just know that when I put my hand out, her hand quietly takes mine. For which I thank The Lord, for I am blessed.
Maria, and thank you for all you do for your sister. For the love, the friendship, and your steady presence in her life!
Thank you, Ellen, for such a wonderful post. You expressed the feelings of my heart perfectly. I plan to share this with my 7 year old son who has seen and experienced way too much trauma as a result of being a sibling to an older brother who struggles with Autism and Bi-polar. My 7 year old has a heart of gold and is so loving and supportive of his brother, but it pains my heart daily to see how much my 7 year old has sacrificed and how he has been forced to mature so much more quickly than any child should have to do.