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. (to follow his journey on Facebook)

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Don’t forget who they are

As a mom with a complex kid it’s easy to get caught up in daily chores and things on my to-do list. There never seems to be enough time in the day. Ever. The list keeps growing and things get forgotten.

Our little guy has a day filled with his own tasks. As soon as he wakes he needs to take on a day filled with therapy and activities I have planned for him. Wake up, meds, water bolus, sit in high chair and play with food while having breakfast via g tube, get ready for therapy, after therapy more tastes of food while feeding him, stander for an hour and a half, play on floor with communication cards, nap…and when he wakes there’s sitting in the corner chair, exercises with peanut ball, outside for a walk…his list goes on and on. Every extra moment is used as a learning experience or therapy. I’m working so diligently to help him reach his full potential that sometimes I forget something…I forget who he is.

First and foremost, he’s a little boy. He’s a silly, loving, raspberry blowing, small child. He’s not a to-do list. He’s not an appointment. He’s not his diagnosis. He’s the 2 year old with the best hair on Facebook. 😉 Yes, he has many issues that require an immense amount of work, and to be honest, there are some things that I’m not ever sure he’ll do but we will never give up. There are far too many unknowns but when I look at him none of that really matters.

He’s my amazing little boy who just wants to be snuggled by his mom. When we are reading books he probably wants to scream stop asking me to point to the cow and just read the book already!!! He’s a child. He’s not congenital disorder of glycosylation. When he throws his head back and screams he’s telling me geez mom! therapy again?! He’s being a toddler, not CDG. He’s being my naughty little boy who is telling me that he wants to make a choice.

Last night as I was holding him on the couch he looked up at me with his beautiful blue eyes and made a “kiss” sound. I kissed him a million times over and he looked at me with so much true love. He was saying thanks for remembering. Thanks for remembering that I’m a little boy first.

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