TO THE DAUGHTER WITH A SPECIAL NEEDS SIBLING

My dearest Ila,

This isn’t the kind of letter you usually write to a younger sibling. In fact, it’s usually the other way around. You’ll write a letter to the bigger sister, readying them for your arrival, readying them for the time taken from them to take care of you. But your sister is a special needs kid. So there will be times where she needs special attention.

I have been writing this letter to you in my head since before you were born, before I was pregant. Your dad and I discussed whether we’d be happy to raise two special needs kids, and ultimately we decided that we knew no other life. That we were already in love with you. With your sister, we were thrust into a foreign world, without a map, without instructions, without being able to speak the language or ask for directions. Our lives revolved her completely. Making school appointments, ENT specialist appointments, speech therapy appointments, EEG appointments. And on some days we were so focused on doing the right thing rather than just spending time with her, loving her. Through all of this, somehow, we were prepared for another autistic child. But a few weeks before you were born I started having insomnia and anxiety about you not being autistic. I don’t think in the history of having kids that any mom has ever been worried about her kid NOT being autistic. For a long time, you were just a concept in our minds. But now that you’re here, and I see you eat every meal placed in front of you, sleep through renovations and reach every milestone in a textbook fashion, my fears have become so real. You are here, so bubbly, so busy, so determined, such a social butterfly. You’re crawling around, eating everything in sight, so ‘aware’ that sometimes I cry a little. Because I know what lies ahead.

So, my darling Ila,

I’m sorry if it’ll sometimes seem that we’re tending more to Lily's needs than yours.
I’m sorry that you’ll one day have to leave parties you’re enjoying because she is overwhelmed.
I’m sorry that sometimes money will go the therapy for her, rather than swimming lessons for you.
I’m sorry that it’ll seem that I’ve spent all my energy on her, with very little left for you.
I’m sorry that she’ll get the choice of better schools and extracurricular activities that’ll help her on her journey.
I’m sorry that some days you’ll have to take the role of the “big sister”, and grow up faster, as you explain the struggles, joys an ills of the world – in all their realistic glory. Whether relating to studies or careers or relationships or friendships, or coming into your own as a womxn.
I’m sorry that we might move away from a place or friends you love, in search of a better life for her.
I’m sorry that it’ll seem that we love you less.
I’m sorry that there’ll be things she’ll struggle with that you may have to help her with.
I’m sorry there may be things that she excels at that you struggle with. I’m certain that you will help each other.
I’m sorry that there’ll be days where you’re frustrated - angry at the attention taken from you or simply frustrated at how unfair life can be. I’m sorry that you’ll feel you’ll have to bottle it all up. Know that you’ll never be a burden to me. That you can always come to me. I will always listen.
I’m sorry that we’ll spoil you a little, desperately trying to make up for our shortcomings as parents.
I’m sorry that you’ll watch ‘Dora’ 114 times.
Although Lily is fiercely independent and I don’t think this may be the case, nevertheless, I’m sorry that you may have to take care of her when we’re gone.
I’m sorry that it’ll seem that your victories and achievements are less important, while we celebrate that Lily grabbed a handful of sand without squirming.
I’m sorry that I may forget things that are important to you.
I’m sorry that you’ll one day surpass your sister’s abilities and feel guilty.
I’m sorry that you’ll want to share things with her that she won’t understand.
I’m sorry that you’ll have to share even more than other kids do.
I’m sorry that you’ll sometimes get uncomfortable stares. But I already know you, and know that you’ll handle it boldly.
I’m sorry that you’ll feel pressured to be the ‘perfect’ sibling – the one you believe your parents dreamed of. I can assure you, both of you already are. And you were since the minute we first met you.
I’m sorry that she may miss your first ballet/flute recital because the sounds will overload her.
I’m sorry that there’ll be days where I am a ‘terrible mother’, failing at everything, excelling at none.

I’m sorry. But this I can say. The things I can promise you, far outweigh the things that I’m sorry for.
Your sister already loves you more than you can imagine. It’s so strange, she has my exact personality and you, my sister Caron’s. I can’t even begin to describe what a blessing that is. Based on our relationship, ahead of you lies something so beautiful and precious; an eternal friendship. You’ll have someone who will have your back, no matter what. Someone who will listen to your every bit of pain, however minuscule, and celebrate your successes with more excitement than you can muster. Someone who will stand up for you when the world lets you down. Someone who will value you when the world underappreciates you. Someone who’ll offer a shoulder even on days where you think you don’t need one. Someone who will know you, and see you and love you and know your worth. Someone who you won’t be able to 'bullshit' on days where you put on a fake smile. Someone who will encourage you when you feel like giving up. Someone who will push you beyond your limits. Someone who will believe in you, every day. Someone who will only ever have your best interest at heart. Someone who will brush on your make-up in the morning, and wipe away your tears at night. Someone you can stand with side by side, and have conversations with, without using words. Someone who will help you.

Already Lily is so protective of you. She strokes your hair and says, “Shhh, the baby is sleeping. On days where you shed tears, she comes in running, ready to attack whoever hurt you. Once she even grabbed me, not aggressively, lightly, but enough to let me know that she’ll protect you at all cost. I see how you look at her when she comes from school, practically leaping from your cot with glee. Already you have a bond, without words. A bond that can never be broken.

So I can promise you:
I promise you that you will know love. In its simplest, most innocent form. Without all the extraneous trimmings. And there’ll always be an abundance of it.
I promise that we will never love you less.
We will never care any less.
We’ll try our utmost to not place her needs above yours.
I promise that you will look at life with a different lens.
I promise you that you will be kinder, you’ll have more empathy and an understanding of the world. You’ll accept and appreciate everyone for exactly who they are.
I promise that you will learn what pain means, which will make the mundane struggles of the world almost irrelevant. You will learn what’s really important.
You will learn to celebrate the littlest moments.
You will learn patience.
I promise that I will always see the good that you do.
I promise that I’ll always be proud of you.
I promise that we’ll laugh together, more than most.
I promise that you’ll always be a part of her life and help become an amazing adult.
I promise that I’ll always try to split my love, attention and energy fairly.
I promise to find out what you’re passionate about and celebrate it, every day.
I promise to find ‘our thing’ to enjoy together.
I promise to tell you each day how amazing you are. How cherished you are. How talented and funny and beautiful you are.

You have been one of life’s greatest gifts. And given me memories and milestones I didn’t know I wanted. I love you so damn much. For months I stared at your sister, wondering how you’d fit into our lives, since my heart was so full of love for her. But you came, with that demanding little personality of yours, with that infectious laugh and opened another compartment in my heart that you filled to the brim.  
I promise I will do everything I can so you know how worthy of love, attention and praise you are.
I promise that I’ll never give up.
I promise to make you feel that your every worry and emotion and feeling and achievement has value.
I promise that you are her first superhero and will remain one in her, and my, eyes.



There will be many things that I am sorry for, but I promise will all my being that I’ll give you the happy life you deserve.

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