Dear Parents of Disabled Newborns,

Remember that...

They'll tell you that the great adventure you just began with me took a turn towards the uncertain. They'll tell you raising me is going to be filled with insurmountable challenges and numerous struggles. They'll warn you about the medical bills and costs I'll require. They'll try to explain all the surgeries or therapy I'll need in the coming months and years. They may tell you to not plan too far into my future. They'll tell you that they're so sorry and ask if there's anything they can do for you, or me. They'll tell you that I will consume your life. They'll harp on about the sacrifices you'll have to make (as if they had a clue). They may even take me away from you for awhile. They'll smile in that way that belies their relief that I am not their child.

And then... 

You'll take it one day at a time with me. You'll feel sad when you watch the other parents with their gurgling and healthy babies. You may feel angry and frustrated because you're always grasping for that "what else can I do..." Your blood may boil when they tell you you're wrong but you just know you're right. You may ask yourself why you continue to do this. You'll doubt yourself more than a few times, more than a hundred times. You'll soon find yourself unwilling to give-up; and you won't know why, or maybe you know exactly why but it's difficult to put all of the emotions and beliefs into words. You might even get fed up with me on more than a few occasions. You may feel guilty for all the reasons 'why' and 'how.'

Before you know it...

I'll change your life's priorities. I'll show you what you are capable of before I figure out what I am capable of. I'll invent new dreams for you. I'll teach you how to be patient and push your sense of trust. I'll reconstruct your idea of 'family.' I'll exercise your strength just when you thought you're exhausted. I'll hold you to your stamina and make sure you never waver. I'll push your determination to the point of unrelenting. I'll show you what it means to go to "infinity and beyond!" I'll guide you to be my ears and eyes until I can do it on my own. I'll prove to you why expectations should never be set in stone. I'll make sure you're paying attention to the smallest of things. I'll instill your intuition with an iron-fist confidence. I'll challenge your sense of courage and may change your sense of faith.

We'll triumph.

 We'll have a relationship that humbles academic experts. We'll put on our brave faces and stare down the most daunting obstacles. We'll know what makes each other tick and grin. We'll remember our toughest days to cherish our greater ones. We'll remind each other of our weaker moments to bolster our strength. We'll tell each other all the right words in moments of struggle. We'll pick each other up because no one else will know how. We'll spur each other on in the face of a fight. We'll tell each other "yes" while the world screams "no." We'll hold each other tight when experts tell us "I don't know." We'll tell each other "it's okay because we are together." We'll be each other's bottom-less pit of hope. We'll trudge on because at some point we'll realize "we've come this far..."  We'll empower others and say "you can do this too."         

Love always,
Your newborn baby

Written in the voice & perspective of a newborn. 

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5 Responses to Dear Parents of Disabled Newborns,

  1. Wow! This is a beautiful post and will benefit many parents.....

  2. Thank you! I really hope it does too

  3. Oh Sandy! You are making me cry! Beautifully written, as always.

    Sara M

  4. Bravo! Great heart, great courage, so good to hear yr voice, darling newborn :-)

  5. Thank you so much! Happy holidays & new years to you and yours :-)


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