I received a private message a few months ago from a complete stranger. Her message was warm, kind, and sincere. She herself has a special needs sister and our experiences have touched her and 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) five year old is when I learned that he doesn’t see his brother’s disabilities or imperfections. 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. It’s not fair. I can’t imagine how they feel when their brother is the one who is running the show time and time again. 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 that 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 that they grow up with empathetic hearts and advocate for the underdogs. I hope that they have learned to persevere even when odds are against them. I want them to realize that life simply is not fair. You can do everything “right” in life and sometimes things will not turn out in your favor. I want them to know that it’s up to them to choose how they will react when life hands them something unplanned and undesired. I hope that they choose to walk with their heads held high and never give up. I pray that their little brother has taught them to always find joy even on the darkest day. I pray that after watching their brother’s struggles and determination that they themselves never take their abilities and experiences for granted. I hope that when they reflect on their life without a “typical” brother that they see a life with a phenomenal brother.
“I just wish someone would have told me it was okay to need attention, because I felt bad for wanting it.”
This is tough. I can only imagine. I can only imagine what our preschooler sees on the days when exhaustion wins and all he wants is one more bedtime story. I cannot tell you how happy I am that she wrote those words to me. I am so grateful that I have the chance to tell our kids that they deserve our attention and we will always be here for them. Yes, their brother requires so very much but they do too. They need love and attention just as much as he does. I want them to know that they should never feel guilty for wanting time with us, even if it’s just a twenty minute walk around the block to collect things for our “idea box” or a drive to the Dairy Queen. The last thing I want is for them to grow up and think that they were slighted or deserved less. I am forever indebted for this reminder.
I am not just a special needs mother, but I am 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 am grateful that I opened my message from a stranger.
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