Dear Mom: A Letter From A Former Preemie

Dear Mom,

I know you're scared, holding a 3 lbs. 12 oz. baby girl who can't even breathe on her own, but I'm here to tell you that everything will be okay.

I'm here to tell you that with your support that baby girl will grow into a strong independent woman who is sure and confident about her place in this world. You will become her greatest advocate, and you will teach her that it is okay to be different, and that being disabled does not mean you're less valuable or worthy of respect in this world.

I can't imagine what you're feeling in this moment as all your expectations for what your child would be like change in a matter of minutes. I know everything feels uncertain, and in a few months you will find out that your daughter has cerebral palsy, but you will quickly learn that that's not necessarily a bad thing.

It is true that disability will color many of your, and all of her experiences in this world, but even though there will be struggles, she will learn that being disabled is not a bad thing. In her disabled life, she will find beauty, joy, love, fulfilling relationships, and purpose beyond what you could ever imagine.

Disability will shape the way she moves through the world, but it will  not always be a burden. It will bring you and her, and your entire family a vibrant community, new experiences, and opportunities to see the world differently.

As a grown disabled woman I'm here to tell you that living a disabled life does not mean living a less worthy, joyful, important, beautiful, or valuable life. I'm here to tell you that being disabled is not a bad thing, it's just part of the diversity that makes our world so amazing. I'm here to tell you that your daughter will grow to know these things as truth, and learn to embrace her differences, and everything that makes her who she is.

I'm here to tell you that the greatest thing you can do for her, now and forever is teach her to find her place in this world, and fight for her own equitable treatment, and the equitable treatment of others in this world. 

From you, she will learn to find and use her voice to make the world a better place for herself and others. She will learn to see who she is as valuable, and will always be good enough. It will take time, but she will learn to love and accept herself exactly as she is, disability and all.

I am not you, so I don't know what your expectations were for her life, but I can tell you with certainty that in time the life she wants and creates for herself will meet and exceed any of your wildest dreams.

So today, in the beginning, I want you to know that in all the uncertainty there is hope for a beautiful, valuable, joyful, and purposeful future. I want you to know that the coming diagnosis is not the end of anything but the beginning of a new journey.. I want you to know that she will grow and change, just like all children do, and she will learn that it is okay for her to be exactly who she is. In the beginning, I want you to know that it's okay to be scared, but I also want you to know that although things may be vastly different than what you had planned, they will be beautiful.

I want you to know that for all your mother-daughter ups and downs she will be immensely grateful for the role you play in her life, and the advocate and activist you teach her to be. I want you to know that this is a journey, and it's okay to feel whatever it is you feel in this moment, but things really will be more than okay. I want you to know without any uncertainty that this is not the end of your dreams for your child, but the beginning of new dreams that are more powerful and more beautiful than you could ever imagine.

Love Always,

Your Daughter