September, 2011
Dear Ava & Henry,
The picture above was taken at your Thea Lillian's house in New Buffalo, MI on a crisp, clear Fall day. I love this picture because it shows my three beautiful children looking out into the world. A world that is very different from the one your mother and I grew up in.
As you three look out over Lake Michigan, I can't help but feel a sense of awe for both of you. You are young in this photo...Ava, you're freshly 4 years old. And Henry, you, my boy, are just about to turn three. Your sister, Ella, is 15 months old.
When this picture was taken we had known about Ella having SMA for just over a month. In that time we have felt much of the human spirit. We have felt the love and support of family, friends and strangers. We have watched both of you respond in your own ways to what you understand to be happening with your sister.
Ava~~We delight in how you cradle Ella in your arms, call her your "Little Sweetie", and shower her with kisses and hugs. We are amazed at how much you already understand about SMA, how much you intuitively know how to care for her. We are blessed that you are her big sister for we know that you will be one of her best advocates. Sisters are special people to one another and Ella is fortunate to call you hers.
Henry~~Your strength and determination will allow Ella to blossom into the best she can be. As we watch you interact with her we can see that you have a soft spot for your sister. Although, at your age now (almost three) you understand very little about what is happening with her and the SMA, you obviously know that she depends on you for much. She will always look to you to keep her safe, to keep her at her best, and to keep her close to you.
I see more than three children in this picture. I see three kids looking out not only to the waters that lie before them, but to the future that is unfolding. I see three young souls individually preparing for a lifetime together~~however long that may be. I see three members of one family forming a bond that will never be broken. I see a sister and a brother surrounding their sibling with themselves; physically, emotionally and spiritually. I see love.
As I write this letter to you, I know not what the future holds...I know not where the waves of life will take us. I do know, however, that I am grateful for the blessing of you.
With love and adoration~
Daddy
Ava~~We delight in how you cradle Ella in your arms, call her your "Little Sweetie", and shower her with kisses and hugs. We are amazed at how much you already understand about SMA, how much you intuitively know how to care for her. We are blessed that you are her big sister for we know that you will be one of her best advocates. Sisters are special people to one another and Ella is fortunate to call you hers.
Henry~~Your strength and determination will allow Ella to blossom into the best she can be. As we watch you interact with her we can see that you have a soft spot for your sister. Although, at your age now (almost three) you understand very little about what is happening with her and the SMA, you obviously know that she depends on you for much. She will always look to you to keep her safe, to keep her at her best, and to keep her close to you.
I see more than three children in this picture. I see three kids looking out not only to the waters that lie before them, but to the future that is unfolding. I see three young souls individually preparing for a lifetime together~~however long that may be. I see three members of one family forming a bond that will never be broken. I see a sister and a brother surrounding their sibling with themselves; physically, emotionally and spiritually. I see love.
As I write this letter to you, I know not what the future holds...I know not where the waves of life will take us. I do know, however, that I am grateful for the blessing of you.
With love and adoration~
Daddy
