Wednesday, March 10, 2010

The Hurt, The Sibling, My Daughter

Since she was born, I've always called my daughter my heart. I never imagined that "my heart" would be exposed to so much pain and challenge at such an early age. But she was. My little man was born, and her journey began. Not the typical journey for a 5 year old who was expecting a fun baby brother. Nonetheless, it is the journey she got and there is nothing to do to change it.

So, I do what I can. I pray that her brother will make her stronger. I do all I can to make it easier, fairer and soften the blows. But in reality I wonder: Can any of us, who have not experienced it, really imagine what it's like to be the sibling of a child with autism? Really? Nine years into this journey my answer is "I don't think so". No matter how hard I might try, the truth is I can't imagine what it would feel like to live with a little brother who isn't any fun and just sucks everyones time and attention. A brother, you see as a pest, and everyone else seems to adore. I can't imagine how it feels living with a mom who exists in a perpetual state of pins and needles, wondering not when, but what will be the next shoe to drop. Or how it feels to always hear people ask how the one with autism is doing, before they ask about you. Or to be the child who knows, that one day, they will inherit the job.

I try to do all that I can to make sure that Nicky is not Evyn's job, while I'm here. I probably give her less responsibility than most 16 year olds have for their little sisters or brothers. But you can't make the facts go away. I remember two years ago - she was 14 - we were driving along the freeway. I looked up and saw a man running down the embankment towards our car. I could tell by the look in his eyes he was one of ours. I burst into tears. Evyn looked at me and asked why I was crying. I told her, that for a minute, all I could see was her brother, alone running on the freeway. She stunned me when she said "Don't worry Mom I will never let that happen to Nicky". At that moment I realized that despite my attempts to not burden her about the future, she knew. She really knew.

She is an incredible girl. I think that finding ways to reduce her burden, if only a little, has helped. I think taking her to sibling support groups has helped. I think talking to her everyday has helped. But there are some things that I think have helped the most:
l. Acknowledging that I know it no breeze for her
2. Letting her see that it's not easy for me either. I let her see me cry.
3. Putting her in sibling workshops so she can learn she is not alone
4. Being honest with her, that it will never be even. They will never be the same and therein lies both the good news and the bad news.
5. Letting her know that I am doing all that I can to make it better for all of us.
6. Letter her know that I care how she feels, even though there is little I can change.
7. Selecting therapist who understand that everyone in the family is important not just Nicky.
8. Making her a part of his care, when she wants to be. She's harder on him than I am and it's a good thing!
9. I ask for lot's of hugs

I believe that Evyn will use every challenge life throws out to grow into a more interesting and compassionate person. She will use every bit of her experience to cultivate a depth of character that will take her from an amazing girl to a phenomenal women who will make this world better for all of us. I believe that will be the gift her brothers Autism gives to her. I believe the gift will be bigger than the burden.


  1. a great post
    ya made me cry this morning
    your an amazing mom

  2. Evyn is an amazing soul, a sensitive and sweet girl who continues to be hopeful for the future. What more could a mother ask for in a child? That she has been overshadowed by Nicky's tremendous needs is heartbreaking, but her brother's needs have also contributed to making her one of the most giving, deep-thinking, rational and kind 16-year-olds that I know.
    Luv & hugs to your fabulous family,
    yr VT pal

  3. I echo Pru,Ev is an amazing person - even when she's being a pain in the derriere!

    PS I can say that, I'm her grandma!

  4. I read your blog. It brought tears to my eyes for several reasons...

    Evyn is a wonderful young woman.

  5. Donna, you have done a great job with Evyn! I've seen you interact with her and we know that even though Nicky can consume a lot of your time you have always been a dedicated mom to Evyn. She is and will always be special. She loves her brother not because she has to but because she wants too! She also has great support system. She has your family, and all of us. I am so blessed to be a part of your families journey. You all touch my heart daily. And although, I have not walked in your shoes, I'm by your side along with so many others. I can't wait for Evyn to get accepted into Stanford! Whoo-hoo.
    Tammy & Family

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