Tuesday, July 29, 2014

Quiet House

Well Becca has been at camp for a week and yesterday we took Ian to camp.... So the house is quiet.  We hope both kids have the time of their lives... For them both to be normal and not worry about treatments and all the other stuff....for will take a little bit of getting used to, some in the same as other parents and some not in the same way....

Friday, July 25, 2014

Letter To My Daughter

Lately I have been struggling with many different emotions, figuring out the reasons for all of them is not always easy.  One of those things I have been struggling with is helping Becca be the "typical sibling" and all that comes with it.  The good, bad and indifferent  Some of this letter I have gotten from other parents who have shared online…I have not given her this letter and am not sure when I will but do know that I will at some point and time. She deserves to know that I know/understand what she goes thru and how I wish I (we) could have done more.

I know you have had to sacrifice so much, and I wish you hadn’t. For the many times you’ve thought it wasn’t fair, we’ve felt it too. And if you’ve had to miss out on life experiences, please know that we wish we could offer you the world.

I know there are times you’ve felt overlooked, because Ian's needs demand all of our attention. But we see you, we see you in the cracks of our vision, and our hearts hurt for the moments we've had to sacrifice time with you. But many nights we think about you, of the wonderful person that you are. I want you to know the pride and love we feel for you could never be measured, you are what keeps us going many times.

In your own way you have told us how having a sibling with a disability has affected you too. Yes, there’s been sacrifices and some things you’ve had to give up, but you also gained so much from having him as your brother. Because you are only 11, still so young you don't know all you have gained. I know having Ian as your brother has helped you become who you are today and will continue to help you as you grow. We look at you, and we’re sure there is not a more compassionate, caring, accepting and kind human being walking on this earth.

We’ve seen you get frustrated with him, because after all you are siblings, twins to boot. We’ve seen the frustration in your eyes. But then something happens – perhaps it is a look that as parents we don’t recognize – but we see that frustration be replaced with love. You can be annoyed by clucking for something, him having “control” of the TV and something happens…a light goes on and you willing find out what he needs (or maybe unwillingly). I see the love in your eyes for Ian, and I cannot believe that the two of you can share this kind of love. It’s not typical, but it runs so deep, and it reflects a quiet strength in you that brings me to tears.

You’ve shard with us that others will understand it isn’t right to bully, to frighten, hurt, or threaten another person is not ok. Because you understand that it isn’t right you struggle with how to handle people who bully…we will continue to work with you to find the way to handle those situations.

You are perhaps more mature than someone your age. You’ve probably had more responsibilities than most of your peers. I guess in some ways you’ve lived a different life, life impacted by disability. And every day you’re out there, living with an understanding about the beauty and value of life that makes you stand out, and understanding that few people have.

And you smile at life, enjoying every moment (trying to). I hope as you continue to grow you will continue to help others see what you are seeing, to know what you are knowing, raising awareness of disability as you advocate for those differently abled, as you give them a voice when needed. You have willingly embraced this role… it humbles me, it brings me to tears.

As parents, we hope to make this place a better place for our kids. As a child, this is not something you realize…but we hope you do and we hope we realize how much having a sibling with a disability differs…but we know it has opened our world up to things we never would have experiences and will continue to share with you…Ian has taught us an understanding of the value of life – one that you will take with you thru the years.

If you ever wonder who we look up to, it’s you. We could not be prouder or love you more fiercely.