A few weeks ago, my therapist had me write a letter to myself. One that I wished I could have opened up and read shortly after Callie’s birth. She said to fill it with things I wish I had known, lessons I’ve learned, and new perspectives I have now (almost) 15 years later.
It was deeply healing for me. I poured my heart out into it and I thought that if it was helpful to me, maybe it could also be helpful to someone else–someone that’s at the beginning of their own journey.
Here’s my letter–to the mom who’s baby was just diagnosed with a disability
Right now this is about you— your shock, your guilt, grief, rage, hurt, fear, anger, heartbreak, and confusion. This is about feeling plunged into a life 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 in exactly the way you dreamed they would. But what’s next in this journey is about them. And thank the lord for that, because without that sweet baby, you might not be able to pull yourself out of the deepest part of despair. You might just stay curled up in the fetal position, tears streaming down your face for the rest of your days. You might agonize forever over which pain is worse–the shock of what happened or the ache for what never will. But if you did that…..
You might not get the chance to see this is actually about something bigger than you, about leaving a legacy, and about living a life full of extraordinary-one-of-a-kind love.
In the haze of shock, you can lose sight of the shore–of what’s actually possible and your fear takes over. You feel like you are drowning right now, and I promise that will subside. Wave after wave knocking you over–first confusion, then despair, then anger, and then grief. I won’t lie though–the waves of loss will always be there. They still lap at my feet and tug gently on my heart some days. But what I’ve come to realize is that I was mourning the loss of a false future I dreamed up within the boundaries of an imaginary life for an imaginary child. Loving THIS baby in all their unique, special, perfectly imperfect ways will teach you daily how great a love without boundaries or expectations can be. Acceptance will come. And when it does, it’s going to be a daily process of holding space for the loss of what you “thought” your life would look like, but accepting this new life was always meant to be yours because you were meant to be THIS child’s mama.
The adventure of what’s to come? That’s why you made the choice to be a mama in the first place right? You wanted joy, love, laughter, and family, right? You wanted baby giggles and milky burps. You wanted to see your husband be a daddy and hear someone call you “Mama.” You wanted family movie nights, road trips, and inside jokes. You wanted jammies with footies, setting cookies out for Santa, and countless renditions of “Goodnight Moon.” Fingerprints on the wall and a house full of love. That calling on your heart to be a mama? That “why” is not lost with this baby–it is still yours to have.
You will be stretched and reshaped. You are going through an utter evolution–being molded into a woman who’s on the path to become a richer, stronger, self-assured, more compassionate, grounded and fierce version of herself. I don’t know if you would have met that version of yourself –would she have even shown up under different circumstances? Would she even be here if this moment, this child, and this family hadn’t happened? What a loss to your husband, your child, your family, and the world that would have been to not have you walking in this specific role. You will be perfectly equipped to care for this child. I know it doesn’t feel like that now but trust me. The people, community, emotions, and resources will rise up to meet you exactly when you need them. You are not alone.
This sweet baby has a purpose, and you are their guiding light as they navigate their way through this big world leaving behind glimmers of compassion, empathy, wisdom, strength, inclusion, inspiration, joy, and acceptance wherever they go. I promise you’re the mama for the job. You were chosen for this baby, in this lifetime, for this reason. You were meant to be their mama.
When you break the surface of the waves, and enter this new world, you’ll wade your way to shore. Abandoning the labels, the clinical diagnosis, and the medically proposed shortcomings of your new life to see your sweet baby’s face. The love, trust, and acceptance shining from their eyes will pierce you to your core and bring you to your knees. And you will make a silent fierce promise to them–to not play it safe. To be all in. To love without any fear or regret. To show up as the very best version of yourself every day.
To be their mama.
This new life will upend your previous pursuit for social standards of perfection, teaching you that perfect isn’t the goal, that being like everyone else isn’t actually what you want out of life. This new life will remove any of the status quos, checklists, and preconceived notions of motherhood you previously held. This baby will leave you grateful for this beautifully nuanced and multi-faceted life that is now yours to champion. Small wins will become big wins. Milestones will look different. Authenticity, gratitude, and living your truth will become core values.
One day in the future, you’ll be able to look at the pregnancy pictures, baby announcements, and be willing to experience this day, this ultrasound, this labor and delivery unit, this birth, and this heartache over again without it absolutely destroying you. Right now, you might not see how you could possibly celebrate your birth story, your first few moments as a mama, your first few days in the hospital, or even this end result. It might take a long time to heal and that’s ok. It’s ok if you thought you were over it and it hits you all over again. It’s ok if you fall apart after you thought you had it together. It’s ok if your healing is messy and non linear. Grief is like that. Grief exists only where love lived first.
And my God, do you love this baby.
Someday you will pick up your megaphone and shout their worth to the world, Mama. Someday you won’t be afraid of pushing back against social standards and will fight for inclusivity, access, and acceptance for this child. There won’t be any fear or trepidation, only pride, determination, love and courage to go out in front of them– preparing the world for their glorious entrance.
Today, you’re being battered by the waves. Each one hitting you, dragging you under the cold dark waters to the depths of despair, until you have no idea which way is up. Know you have an enormous sisterhood of mamas behind you, beside you, and more waiting for you from the shore ahead. We’ve pulled ourselves up from the depths of these waters. We know all the secrets. We know all the emotions. We stand on solid ground when we tell you it will be ok. So give yourself permission to feel all the hard and heavy feelings, cry all the tears, scream at the frustration, and grieve what you feel is lost.
We’ve got you while you wade through it.