To The Mom Whose Baby Just Received a Special Needs Diagnosis

On May 2, 2017, my daughter Aurora Blake entered this world.  She came fast and furious, with a head full of black hair, perfect tiny hands, and feet.  This sweet baby girl made her presence known as her cries filled the delivery room.  Her coming took control of my body and I had little say in the matter. She happened to me. Not because of me.

Little did I know, she would continue to change every part of my makeup from then on. Aurora was diagnosed with Down Syndrome on the day of her birth. This unexpected diagnosis left me wandering in the wilderness of confusion, grief, and guilt. It took six months to begin to see my reality clearly, shedding the perception of loss I was carrying around like a heavy blanket.

 

 

From where we stand now, I see the gift we have been given. I see the blessing of this journey and the opportunity for a richer life because I have my daughter. Below is a letter I have written to myself 12 months after her birth.

 

Dear Mom,

Right now this is about you— your shock, your guilt, fear, anger, and confusion. This is about being forced into something you didn’t see coming. It’s about waking up to the news that you’ve been loving and preparing for a baby that wasn’t going to arrive the way you thought they would. But what’s next is about them. And thank goodness for that, because without them, you might not make it past these feelings. You might not have the chance to see this is about the long game, about legacy building, about living a life of extraordinary love and being given the gift of loving people you haven’t even met yet. People who will encourage and enrich your life in so many ways.

 

In the haze of shock, you lose sight of what’s possible and fear takes over. The waves of loss will always be there, but it is the loss of a false future you created within the constructs of an imaginary life for an imaginary child. Knowing THIS child will teach you daily how great love without boundaries or expectations can be.  So when it comes to acceptance, it’s going to be a daily process accepting the loss of what you thought your life would look like, but accepting this child will happen as soon as the dust settles and they are lying in your arms.

 

What’s to come is why you took the leap into parenthood. That “why” is not lost on this baby. The joy, the love, and the family are all still there, waiting to be had.

 

The stretching and reshaping of the woman you are is happening right now. You’re aching because you’re evolving into a mother, being replaced with someone who’s on the road to a wiser richer version of herself. This version would not be possible if not for this moment, and what a loss to the world it would be to not have you walking in this specific role. You will be equipped to care for this child. The people, emotions, and resources will rise up to meet you at exactly the right time.

Source: Mindy Vinson

 

This baby has a purpose and you are aiding them as they navigate this world leaving behind imprints of compassion, joy, acceptance and more wherever they go. I promise you’re the girl for the job. The baby you got news will be arriving differently than you expected, or the one who is laying in your arms is the prize at the end of the road of acceptance.

 

When you walk through the woods of this new reality, you’ll come to a clearing. Leaving behind the labels and doctor-proposed shortcomings to see the face of this dear child. Their smile and joy begging you day in day out to not play it safe. To be all in, loving them without fear or regret.

 

It will push you past your previous regard for social standards of perfection, teaching you that easy doesn’t equal perfect, that sameness shouldn’t be the goal. This baby will leave you thankful for this multi-faceted life that is now yours to champion. Someday you’ll be able to look at the pregnancy pictures, and photos of the “before” and be willing to experience this day, this ultrasound, this birth, this pain over again for the sake of the love you will experience raising this baby. Right now you might not see how you could possibly celebrate this experience, this outcome. But someday you will shout their worth. Someday you won’t be afraid of pushing social standards and will fight for inclusivity for this child. There will be no fear, the only determination to go out in front of them preparing the world for their independent entrance.

Today, you’re in the thick of those woods with little sense of direction.  Know you have a sisterhood of mothers behind you, beside you, and more beckoning you from the clearing up ahead. We’ve walked this uneven road. We know all the secrets. We stand on firm ground when we tell you it will be ok. So feel all the heavy feelings, ask all the question and grieve what you feel is lost. We’ve got you while you walk through.

We promise you, you are one of the lucky few.

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