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.
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