An Open Letter To My Able Bodied Children

I can only imagine what growing up with a special need sibling must be like – and how different your lives are because of your brother’s disability. While his disability won’t get worse, as all three of you get older, there will be new challenges to face – some that may become easier and some significantly more difficult. Regardless of your brother’s disability, there are a few things I need you both to know:

I SEE you. I know it doesn’t always seem like I’m watching what you’re doing, whether it’s making it across the monkey bars for the first time or perfecting a split you’ve been working on for weeks (and yes, the extra Hershey’s kiss – I saw that too). But I do, I see everything you both do. I may not always be able to acknowledge it right away but know that your accomplishments make me incredibly proud.

HEAR you (sometimes louder than I’d like :-).) Aside from the fighting you two do, when you talk, I hear you – but more importantly I am LISTENING to you. The pure excitement and joy on your face about going to the movies with your summer camp friends. The immense pride in your voice as you tell us about each of the steps for a research project you did in class. The sadness and confusion in your voice as you retell of someone not being nice to your brother.

FEEL you. Your struggles are my struggles. Your triumphs are my triumphs. I’ve said it before and I will continue to say it, neither one of you will ever have a bigger, louder, more loving cheerleader than me. I will be there with you for every up and every down. And just like I am your brother’s biggest advocate, guess what? I’m your biggest advocate too. I will fight just as hard (and loud) for both of you as I do for him – when the need arises.

LOVE you both more than you’ll ever know. I know this part might be the hardest to understand. At your current young ages all you see is how much time and energy we devote to caring for your brother. All you see are the numerous doctor’s appointments, school meetings, device fittings, phone calls, etc. that we have to deal with. And that you equate that to us loving him more than you. But that couldn’t be farther from the truth. Each of you is so vastly different in such amazing and perfect ways.

Peanut – seeing life through your eyes is an amazing experience. Frustrating at times to be sure but your view of the world around you is so unique and beautiful.

Bubba – even when you’re doing something you know you aren’t supposed to be, your ability to make everyone around you smile is a very special gift.

My hope is that one day; you will both look back and realize that both dad and I did the best we could in very uncharted territory. That we tried as hard as we could to give you both as “normal” of a childhood as we could. And that no matter what, we loved you both more than anything in this world.

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