When Your Child Asks About Mine

When Your Child Asks About Mine (3)We all know that children are naturally curious. And when they see my son G, they often stare. I see your daughter eyeing his wheelchair, trying to mentally process why he’s her size but can’t walk. I see your son, confused as to why G makes funny {and sometimes scary} noises but says no actual words. Sometimes, your child asks you a question, one that I can hear and that makes you cringe.

“Mommy, what’s wrong with him?”

You’re embarrassed, I know. But I also know that you’re curious. What IS wrong with him?

Please don’t be embarrassed. And don’t try to dodge your child’s questions, either. The truth is, while G’s spirit and soul are absolutely perfect, his body is broken. I’m not one to pretend that he’s just “different” and that’s okay, because it’s not. G has an awful diagnosis, a life-limiting Mitochondrial disorder called Leigh Syndrome. Every cell in his body is affected. He can’t walk, talk, or eat. He takes nine different medications three times a day just to keep his body functioning. His brain is marked with lesions, and it doesn’t communicate correctly with his muscles, making his body twitchy and stiff. He drools, a lot.

When Your Child Asks About Mine (1)As awkward as it is, when your child asks you what’s wrong with G, or any child with special needs, do your best to find out. Come talk to me. But first, acknowledge G and talk to him as you would any other child. Your own children will see this and follow your example. The children who are the most natural and engaged with G have parents who also engage with him. It doesn’t matter that G may or may not understand you. He, just like your child, loves attention and knowing that he matters.

Answer his questions as truthfully as you can, but know that it’s okay that you don’t know exactly what to say or how to explain my son to yours. Seriously. I don’t know what to say most of the time either. There’s the official medical reasons for why he can’t walk, talk, or eat, full of words you could barely pronounce, never mind understand. And then there’s the simplified reason we give our three year old about her big brother: G has a boo boo on his brain and his brain doesn’t tell his legs to walk, his mouth to talk, or his teeth to chew his food. The best explanation for your child is probably somewhere in the middle, depending on his age.

Teach your children to respect his limitations, but not to be afraid of hurting G. Of course, they can’t yank on his feeding tube or hurl a basketball at his head, but G loves to give high fives {be patient, as it takes his brain a little longer to tell his hand to touch yours}, play peek-a-boo, or even dance to music in his wheelchair. He won’t break {trust me, I’ve seen his physical therapist work him out; the kid is tough}. And if you are at our house or a place where it’s possible, please ask if you’d like to hold him. I’ve had close friends confide that they are scared to hold G. I understand why, but please know children like him crave physical affection, just like your typical kids. And I’ll be happy to show you the best way to hold him so you’re both comfortable.

When Your Child Asks About Mine (5)Encourage your children to include children like G when they have the opportunity. G’s Sunday School friends often role-play Bible stories where he is the star {he was Jesus on Palm Sunday, which simultaneously cracked me up and made my heart burst}. Some of our best friends threw G a little birthday party when he turned five this year. There were singing, cards, and cake, just like any five year old would love. These are seemingly small gestures that leave lasting impressions on our family and make G’s life a little sweeter.

Here’s the truth :: Your children will probably benefit more from befriending my son than G will. All those important lessons in empathy, acceptance, and compassion – the ones you’ve been teaching or letting Daniel Tiger teach while you cook dinner {hey, been there many times} – can be put into practice with my sweet boy. Children are curious, they stare, and they ask embarrassing questions, but they also know how to connect with another child, no matter how different. But you have to give them the chance to know him, and that starts with letting them stare a little, and by answering that first awkward question.

When Your Child Asks About Mine (4)

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6 Responses to When Your Child Asks About Mine

  1. LaTonya Tichavsky April 21, 2016 at 10:36 pm #

    Thank you for writing this beautiful article Elizabeth, sharing your story and words of wisdom, both of which touched my heart. Even though my baby girl is only 7 months old, my dream is for her to be compassionate and kind- your guidance will help me show her how.

  2. Jewell April 27, 2016 at 2:05 pm #

    So well written! My granddaughter suffered a TBI during open heart surgery at the age of 7. That was almost 4 years ago. The injury left her ‘locked in’ – she has cognitive function but very limited motor skills, non verbal and unable to swallow correctly. Most people don’t try to find out that she is ‘there’. But her smile usually wind them over. Bless you and G.
    My prayers are with you and your family.

  3. Meagan Schultz April 28, 2016 at 3:05 pm #

    Thank you so much for sharing this! So timely for me – I was *JUST* at our children’s museum today and there was a beautiful little girl in a wheelchair and I wondered what I would say if my son should ask about her. This is so helpful – I hope it spreads!

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