When a Stranger Shared Her Experience as a Special Needs Sibling
I received a private message a few months ago from a complete stranger. Her message was warm, kind, and sincere. She has a sister with special needs and my family’s experiences have touched her, so she felt compelled to reach out. I can’t tell you how wonderful it was to gain some insight from a sibling. A few things she wrote resonated with me, and I think about her words daily.
“Amazing children are on the sidelines.”
We do know this. It wasn’t just our life that changed when we received their little brother’s diagnosis; theirs did, too. The other day I realized just how amazing our (almost) 5-year-old is when I realized how he sees his brother. We were visiting a child with severe strabismus (crossed eyes), and when we left he expressed deep concern regarding this. I explained to him that sometimes people’s brains have a hard time telling their eyes what to do and that his brother has this same problem. He looked at me as if I was speaking Russian and adamantly stated “He does not!” He doesn’t see congenital disorder of glycosylation with global developmental delay, failure to thrive, sensory processing disorder, hypotonia and strabismus. He just sees him.
We have to leave places early or change plans last minute depending on their little brother’s mood and needs. I can’t imagine how they feel when their brother is the one who is running the show time and time again. But I’ve never heard them lay the blame on him, and in fact, sitting in their car seats after a meltdown at Target, I hear “I’ll sing to you to make you feel better.” So, yes, I do know amazing children are on the sidelines, and I promise to never forget this.
“I wouldn’t give up my experience.”
I pray this is true. I always have a small fear in the back of my mind that we’ll be resented for extended hospital stays, constant appointments and the tremendous amount of care that takes time away from them. I pray they grow up with empathetic hearts and advocate for the underdogs. I hope they’ve learned to persevere even when odds are against them. I want them to know it’s up to them to choose how they will react when life hands them something unplanned. I hope they choose to walk with their heads held high and never give up. I pray their little brother has taught them to always find joy even on the darkest day. I pray after watching their brother’s determination, they never take their abilities and experiences for granted. I hope when they reflect on their life without a “typical” brother, they see a life with a phenomenal brother.
“I just wish someone would have told me it was OK to need attention, because I felt bad for wanting it.”
I can’t tell you how happy I am that she wrote those words to me. I’m so grateful I have the chance to tell our kids they deserve our attention and we will always be here for them. Yes, their brother requires so much, but they do, too. They need love and attention just as much as he does. I want them to know they should never feel guilty for wanting time with us, even if it’s just a 20-minute walk around the block to collect things for our “idea box” or a drive to Dairy Queen. The last thing I want is for them to grow up and think they were slighted or deserved less. I’m forever indebted for this reminder.
I’m not just a special needs mother; I’m also a mother to smart, silly, amazing, typical boys. All of our boys are unique. All of our boys are special, and all of them are loved beyond measure.
I’m grateful I opened my message from a stranger.
Follow this journey on The Special Mom.
The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.