“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Thursday, March 8, 2012

Things The Doctors Can't Tell You

When writing a comment on a friend's blog the other night, I found myself once again mentally reviewing everything we were told to expect after Lydia's birth all of those months ago. All negative, worst case scenarios which continue to play themselves back in my memories of what should have been the happiest time of our lives, waiting on the arrival of our own tiny miracle. The me I was back then found myself praying fervently that the sweet baby I saw frolicking on the screen of the ultrasound machine would carry just enough spunk inside her, just enough fire, to set those doctors on their collective asses when she finally made her appearance into this world. I even prayed that she would be born with her middle finger shoved high in the air.....
By chance, or by God's intervention, those prayers were answered (not the giving the finger ones...) and the tiny, sick baby we were told to expect was born practically swinging. A 7 pound wonder, with sweet chubby cheeks and fabulous hair, bucking the system which said she shouldn't be healthy, that said she shouldn't be as wonderful, as bright, as beautiful as she is from the moment that she took her first breath.
In keeping with the general tone of my last post, I find that while doctors can attempt to tell you a whole lot about what they think you should expect when you're expecting a baby with 47 chromosomes, there is even more that they absolutely could never tell you......

They can't tell you about the moment you first lay eyes on the baby that you have waited so impatiently, so fearfully, for. They can't explain the almost heart breaking love you feel that first moment or tell you how in an instant you are filled with the overwhelming desire to protect her from the prying eyes of the world at any cost. They can't say that the moment you first hold that baby in your arms, you will fall more in love than you have ever been in your life, or how you will be choked with tears because she is more beautiful than you could have ever imagined. They can't tell you how at that moment everything changes, YOU change, the person you were before falling away like a forgotten cocoon, the person you were always meant to be emerging like a butterfly. They don't say that what you feel for that tiny baby with the odds stacked against her turns you into someone who is almost super-human, someone who will put aside any discomfort, any fear, any reservations about being the mama (or daddy) of a child with special needs in an instant and become a roaring mama bear in the blink of an eye if you feel your child isn't getting the credit she deserves.

They can't explain how your family will open their arms and welcome this baby or how in the end, the thing you all feared most will turn out to be the very best thing that ever happened to any of you.
They can't foresee how hours spent on bended knees, crying out to God for your child's protection, will bring you faith strong enough to move mountains. Or that love can give you the courage to stand against the growing tide of opposition in an attempt to change the world and make it a better place for her to live in. Or that the determination of one tiny little girl will teach you more about what is important in life than anything else you have ever experienced. They won't tell you how every once in a while you will be completely stopped in your tracks, spellbound and breathless with the beauty that is this tiny miracle you get to call your own.

Your eyes will be opened to a world you never knew existed, a world that is often heartbreaking and senselessly cruel, but that same baby will give you the burning desire to DO SOMETHING. You will be folded seamlessly into an extended family, with arms all over the world, and will make friends that will last a lifetime. Yes, sometimes you will face the most difficult obstacles, like handing your life to a surgeon who will hold her tiny heart in his hands, but through the fear and heartache you experience, you will find that you are stronger than you ever imagined, capable of handling that which you truly believed you could not, because that's what it takes to keep that child here with you.

 You will burst with pride at the tiniest accomplishments. You will cheer at every small gain. You will be blessed with slobbery kisses, bubbly laughter, and beaming smiles. You will cry at the word Mama coming from her lips for the first time, because in that moment, there is no more beautiful sound on Earth........

 You will find yourself again and again falling to your knees before God in unceasing thankfulness that He knew exactly what it was you needed when you didn't have a clue yourself.

 Doctors don't know everything and it would be impossible for them to be able to tell you how absolutely amazing your child will be to you....how she will captivate everyone she meets with a flash of dimples and the twinkle in her big blue eyes, even those same doctors who blindly couldn't see past the diagnosis they gave you.

Have faith. God never makes mistakes.


  1. I wish I could have read this blog post before I had my daughter 13 years ago. We didn't know beforehand and I had so many bad images of what DS would be. It is EXACTLY as you say. I loved when you said your cocoon fell off and the real you emerged! I have never heard it said that way, but it is ABSOLUTELY true. I would never want to be the person I was before our precious girl was given to us by God above. We weren't worthy of something so grand and I'm thankful He trusted us with her care. Love your spunk!

    1. I totally agree my daughter is 9 now and life has been fun and rewarding,she has brought so much to our family.Doctors should ask other parents to tell new parents adout how it is and some of the correct information may get there.

  2. As a peripheral member of the medical community (OT) I sit in that gray zone. I hear all of the things they warn parents about, I know they CAN be true, but I also know, If those new parents take those words as gospel... that is EXACTLY how their children will turn out. So I say, doctors dont really know... I say IQ is a stupid test, I say be a fierce lion and your child will find their own roar. And I go home crying for the boxes those damed doctors love to put babies in... brain damaged, "R", crippled, sick,,,, and for all the new parents I can never say these words to... and they believe them. Rock on Momma, be a fierce lion and your Liddy will inherit your roar! <3

    1. Vicky, one of these days I am going to be a member of that medical community as well. My hope is that being the person who has a foot on each side of the fence, I will be able to make a difference, even if that difference is only to one person. One person is all it takes. :)
      Trust me. Liddy already has a roar completely all her own....and as I have always said, she will do more to change the world with a simple flash of her smile than I can ever hope to do. But I'm still going to keep trying until that day.....

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  3. Love, love, love this post! : )

  4. She is so stinkin' cute! One of the prettiest little girls, and I'm not just saying that. She is a doll!

  5. She is a beauty. I'm very proud of you and how you are making a difference in people's lives. This post is wonderful and sooo true. I hope to be a more positive role model once my daughter's surgery is past us. Keep it up girl. Your are on the right track. :)

    1. Valerie, if you need anything as far as your daughter's surgery, please let me know.
      And I am sure that you will be an AWESOME role model (although I don't see myself in that capacity. I just see myself as a mom trying to make this world even a tiny bit better of one for my kids to grow up in....)


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