When I saw I’d missed 3 calls from an old friend in the middle of the night, I almost didn’t call her back. My name starts with “A” so I am often butt-dialed. But I was on vacation alone in Washington, so her timing was perfect. Sitting on the edge of a forest, overlooking the ocean and having a long, uninterrupted conversation with an old friend sounded dreamy.
“Who is this?” she answered playfully. She moved away years ago and the time difference has made staying connected hard. It was so good to hear her voice. And she immediately burst into tears when I said my name.
“What’s his diagnosis?” I whispered.
Somehow I knew to ask about her boy. As she filled me in between sobs, I assessed. Not life-threatening, but definitely definitely life altering. I started to cry too. Her baby . . . I was so touched she thought to call me.
We’ve been friends ever since we met at an awkward, hipster party on Christmas Day over 10 years ago. She has a defining smile that I noticed first. When I couldn’t tell if she was laughing with or at everyone (including herself) I knew that we’d be fast friends. She’s really good at laughing. It broke my heart to hear her cry.
Who could have predicted that all these years later we would end up together here? In this oh so special club reserved for those of us with kids with special needs. We are every pregnant mom’s worst nightmare.
“Remember when we thought we had problems?” we laughed through the sobs. Actually, we cackled through the wails. It’s an unbelievable What-The-Fuck-Just-Happened-To-My-Entire-Life and Why-Is-The-Universe-Messing-With-My-BABY kind of place to find yourself. It felt both really good and really shitty to have her here with me.
The initial years post diagnosis are an extended rite of passage into the dark margins of parenting. I wish I’d had a friend to howl at the moon with me when I was first initiated. Let me be your guide . . . down . . . into this underworld, I teased . . . because when she got quiet, she got REALLY quiet. I could feel her trying to separate and slip into a void where it felt harder to reach her because we were on the phone.
I kept talking to pull her back in, speaking directly to the horrors she’s confronting. One by one, we took them out of the dark to see what might change in the light. All the raw layers of additional wounding we hadn’t expected to be a part of this path, but are.
The loss is vast and could include, but is not limited to:
- life as you know it
- future hopes, dreams and goals
- bandwidth and patience
- sanity and grace
- friends, yours and your child’s
- financial security
- faith in modern medicine
- faith in God
- faith in anybody or anything
- the child you have now
It can happen all at once. As the thunder clouds roll in, announcing the storm, you will plead for reprieve. Don’t ever ask, “Could this possibly get worse?” because lightening often strikes more than twice. Don’t fool yourself that it won’t. You will compare yourself to others, and feel jealous, ashamed, and grateful. People will wonder how you do it and you won’t freaking know either and you will hate them for asking. Of course God gives us more than we can handle. Every. Single. Damn Day.
You will live and relive the stages of grief. It’s part of it, you’re suppose to. Because over time, all the denial, anger, bargaining and depression WILL lead to an uncomfortable place of acceptance.
You will accept, because you’ll have to. (It’s one of the few ways out.) You will always be looking for a cure but trying to accept your fate. Don’t expect to figure either one out the first year. Or even the second. But know that you will.
Trust that this diagnosis will transform you. You’ll resent that. You’ll give zero shits about silver linings and just want your simple life back. THIS is the very rub that is refining.
This diagnosis WILL elevate you. The nature of your child’s new needs requires you to step into an expanded role and you will grow. You will experience increased discernment, courage, strength, and heart. Your already keen bullshit detector will become razor sharp. Your circle of friends will get tighter. You will find others “who get it” and make them yours. (Forget those basics who don’t.) Your faith in what IS good and true in your life will exponentially increase. You’ll learn to remain open to all sources of inspiration and wisdom because limitations will restrict your ability to work your mama magic. Beyond all the obvious frustration, fatigue and fear, there is heartbreaking beauty in the tender places you will touch. You may find yourself honored by the ways you become deeply intimate with the most precious, pure, and fragile places of the human experience.
With this diagnosis comes a calling. In addition to being a mother and now a caregiver and case manager, most importantly you are a healer. Our work is the most sacred.
When people ask you how you do it, THIS is how, Goddess.
And when you’re SO OVER IT and wondering how you do it too, look up into the dark night’s sky and trust that I’m there, howling at the same moon with you.
** Hey sister . . . You’re in my heart every day. I totally believe in you and am so proud of you. You’re the best mom, like we knew you would be. I wish we were at least in the same damn time zone, but it would be even better to be back on the floor of that old bed and breakfast drinking a mimosa and eating something delicious you just took out of the oven. I love you guys. Kiss that baby for me.
Great job Allison!
Simply beautiful, inspiration at the same time you hit the “how do you do it bullshit question” that you get tired of hearing. Knowing that special needs moms are working together at this is what makes me proud to be part of this. Thank you for sharing this!
Allison Ray Benavides says
I’m proud too. So good to know you.
Anna Sindelar says
Allison, this makes me feel less alone. Thank you.
Karen Copenhaver says
Love this. <3
Madigan Kent says
What an absolutely powerful piece Allison. I am so impressed by how you articulated the inarticulable (see that’s not even a word).
So right on— and incredibly beautiful. What a wonderful friend you are. 💜💜💜
Jalene Salus says
You are such an inspiration, Allison. I love how real you are, I feel like we are sitting beside each other with your compassion: you offer such depth of heart & wisdom. And humor & humaness. I am honored to know you & to call you my friend. Love to you, Allison. ❤️🙏🌸