Sometimes I watch my kids and I wonder.

I wonder if Lauren, Trevor’s faithful sister, ever gets tired of so much of the focus being on Trevor.  Given her sweet spirit, she probably doesn’t.  When I worry about it, I’m likely projecting.  

Trevor is important, and this year has been a significant year surrounding our oldest son, but there is so much more to our life and to our family, and little Lauren is a beautiful part of that.

Being the sibling to someone with special needs can be trying — I’ve heard that, I’ve read that, and we’re trying to be aware, as parents, that this may be taking a toll on our sweet daughter.   I have assumed that there is jealousy (and maybe there is some).  I’ve assumed there is a feeling of being invisible (and maybe there is some).

But what I didn’t anticipate was the tenderness in her little soul, and how even at only 9 years old, she hurts when Trevor hurts.

We had a conversation the other day — Lauren was in tears because she found out that Trevor gets to go on a special trip to Germany with Jason.  She wanted to know why Trevor was chosen to go, and not her, too.  She tried to be strong, but her little chin quivered when she admitted, “I just… think it would be really neat… to get to travel out of the country…” and she began to cry.

I thought that having an honest conversation with her was the best thing.  So I said to her, “Lauren, sweetheart…  I know this year has been a lot about Trevor… and you’ll probably see as time goes on that sometimes Trevor will be offered opportunities before you will.   It’s not because Trevor is more special, or more loved, or more deserving of them.  It’s because Trevor may not always get to enjoy these things.  We don’t know how fast Trevor’s disease will cause him to get worse, but we do know that Trevor’s ability to walk and stand gets worse every year.  He may not be able to walk much one day, and traveling will be a lot harder for him.   You’ll always be able to walk, and run, and jump, just like you can now, and you’ll get *more* able and *more* powerful as the years go on.  
It doesn’t mean you won’t get those opportunities, it just means we’ll make sure you get them a bit later, when you’re most able to appreciate them and enjoy them.”

Lauren cried harder.  I said, “Oh honey, I’m sorry you’re feeling this way.  Does this hurt your feelings?”  and her tiny, slender shoulders shook and she wept, “No… I’m just… I’m really worried about Trevor and how his disease is going to affect him.”  (yes a 9 year old spoke like that.  She’s my little adult in a tiny girl’s body)

My heart swelled for the love that this little girl has for her brother.  She supports him, she stands up for him, she cheers him up, and she is his biggest fan.   If I could have one wish for my family right now, although there are many, many wishes that I’d like to have, I would wish that these two will remain the kinds of deeply connected, best friends that they are.

In this picture, Lauren slept next to Trevor with her hand on his head, because Trevor was suffering from severe headaches from a spinal tap he’d needed for testing.  She slept next to him like this all night.

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In this picture, Lauren stayed right by Trevor as he struggled to finish 3 miles walking in memory of Mitchell Jones, to help raise money for other families with sons afflicted by Duchenne Muscular Dystrophy.  We were last, by a longshot.  So far last that the police vehicle that was assigned to ensure everyone got in to the race without getting lost was hovering behind us the whole way… because we were very last.  Because Trevor was determined to finish.  Lauren could have run that whole thing and come in to the finish long before us, but she stayed with us so that she could finish with Trevor.

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…and afterwards, they played together like they’d prefer nothing else than to be with each other.

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I am grateful for the bond that they have.    Trevor is so lucky to have Lauren as his sister and his very best friend.  She doesn’t mind that he’s slower or needs more help.  She rarely even notices.

But she is more than Trevor’s sister— and for her, I am grateful… just because she is who she is.  She is tender and loving, drinking in the small details in life like the softness of her baby brother’s skin, or the way that he smells so good.

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She is thoughtful and quiet when she finds beauty somewhere.

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She is 9 years old, so she is certainly still a child, and one who has her days where she is grumpy or sullen, combative or self-centered, but she is a treasure nonetheless.  She is talented and bright, sensitive and loving.  When she comes across something like this wishing tree, she ties a wish to the tree for her brother.

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As she grows, she will shine.  We have to have faith and be conscious of our role as parents to foster the type of environment where she will always be Trevor’s best friend, and that she will always know that her identity is so much more than “Trevor’s sister”.  That she will know that she is loved for all of her.

Trevor is lucky to have her as a sister.

But we are even luckier to have her as a daughter.

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Written by jackie