Additional Needs

Dear Tallula-bula

Posted by Kara Melissa on 6th December 2018 Additional Needs, Advice & Support

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Dear Tallula-bula,

You are the sister everyone would hope for, but only Sebastian got to be so lucky.

You are the sister that makes him laugh when he’s feeling overwhelmed, tired, or in pain.

You are the sister that tiptoes away to make a big heart, cut out and coloured in bright red marker, with an ‘I love you’ message on the back; because Sebastian’s foot got stuck in his skinny jeans and we thought we might have to cut it out, (the jeans, not the foot).

You are the sister that creates the best energy for dance parties.

When you were little, you used to sit on Sebastian’s tray facing him as I twirled his chair around to ‘What I wouldn’t do’ by Serena Ryder.

Now we twirl him back and forth across the room to each other. And Serena Ryder is still one of our favourites.

You are the sister that learned to crawl because she wanted to reach her brother’s glasses and pull them off of his face, making us all laugh together with each no that I said.

You are the sister that said ‘Are you gonna catch me guys?’ wearing your pink piglet outfit during a game of dress up; you waited until Sebastian got a head start, with my help, to starting running away.

You are the sister that helped Sebastian learn how to play games on his eye gaze, so little that you still pronounced his name, “Abees’.

You sit next to him now, so he can ask for help if he needs support navigating his folders.

You teach others how to communicate with him.

You are the sister that thinks drool and reflux is gross, but still climbs up into bed to snuggle next to your big brother for story time, knowing he might do either or both.

You are the sister that invites us to parties in your bedroom, with handmade tickets, even one for service dogs, and special accessible seats, so that we can watch you perform a song about the things that you love in the world: friendship, gymnastics, music, and singing.

You are the sister the loves all abilities soccer because you and your brother get to play on the same team, with the same friends.

You are also the sister that loves your own school friends, quick to explain something about Sebastian to them if they don’t understand, ‘he smiles for yes and puts his eyes up for no.’

You are the sister that I was afraid to have for three years after your brother’s traumatic birth.

You are the sister that let out a loud cry upon taking your first breath outside of my womb, a cone head from all the pushing and getting stuck in the birth canal.

But you made it into the world, so much more easily than your brother. But your life in the world may not always be easy.

You are the sister that sometimes misses out on things because your brother is sick or in hospital.

You are the sister that also knows the hospital so well that you find the fun in each visit; hugging the big, purple Mickey Mouse statue in the cafeteria, every time.

You are the sister that has to calm your emotions so you don’t upset your brother.

You are the sister that feels a weight other sisters don’t feel.

You are the sister that helps your mama when she is tired and weary. You are the sister that loves learning how to help take care of your brother, even though we never ask it of you.

You are the sister that offers unconditional love and comic relief when we all need it so much. I can’t imagine our lives without you.

You are the sister that completed our family.

Love always, no matter what,

Mama Jama