Welcome to The Rare-Mama Sisterhood: Rare-Disease MoMS United

Welcome to the club of rare-disease mothers, the best club you never wanted to be in. Welcome to a group of mothers who actually understand rare childhood disease.

If you’ve had your heart broken, your life turned upside down, and the wind sucked out of your sails, you’ve come to the right place. You have found your people. We are here.

You’re tired? We know.

You’re scared? We get it.

You’re not sure how you are going to do this? We feel you.

You’re not equipped? Sing it, sister.

You are understood here. You can bring all your hurts, pains, and fears. You are one of us.

Out there in the big world, your story may be unique, and no one may fully understand what you are going through. But here in the rare-disease world, I want you to know that all your feelings surrounding your child’s rare-disease diagnosis and coming to terms with a rare childhood disease are understood. Here among rare-disease mothers, you’re a fellow sister in experiencing the penetrating, raw, earth-shattering moment of receiving a rare diagnosis for your child. Most of us mothers can recall the exact details of diagnosis day more vividly than we might like.

Us rare-disease mothers know the break of the heart. We know the ache of the soul. We know the crush of the spirit. Sister, we have sat where you are. We’ve trembled, we’ve shuddered, we’ve stumbled, and we’ve wobbled. We’ve been distressed, unnerved, troubled, stirred, and stunned.

We have felt unbearable pain. We have heard unimaginable things. We have faced situations that are entirely out of our control and just plain unfair. We have been thrown into unforeseen jungles. We have seen ourselves shaken. We have seen ourselves unravel.

You know what else we’ve seen? We’ve seen our tired bodies pick ourselves up and carry on. We’ve seen our perspective become clear. We’ve seen our soul reawakened. We’ve seen our spirits ascend. We’ve seen our hearts grow immeasurably.

We were no more prepared for a rare childhood disease or rare-disease parenting than you. We were no more equipped than you. We were no braver, stronger, or savvier than you. We were just as blindsided, just as frightened, and just as heartbroken. And yet here we are.

The only difference between you and us is that we are a little farther down along the way since receiving our child’s rare-disease diagnosis. We’ve logged some mileage under our feet rare-disease parenting. We’ve registered some years under our belt dealing with rare pediatric disorders. And with that, we now know what you someday will too—you will be okay.

“How?” you say. “How will I ever be okay again?” Trust us. We know it’s hard to believe right now, but you will.

Look, we’re not saying you will be the same. You’ll be different in many ways. But you will be okay. You will. You just don’t know this yet because you are just starting out on this journey. That is why we feel it is ever so important to invite you into the rare-mama sisterhood. Us rare-disease mothers know the feelings you are feeling, and we want to scoop you under our wing, nestle you in, and lift you up.

Listen, let me be real. I understand that this is a club you most likely never wanted to be in. Trust me, I get it. But I can tell you that for me, after the acceptance of my child’s diagnosis when I was ready to get busy doing all that I could to help him, I found comfort in other rare-disease mothers. These mothers understand the ins and out of childhood disease and chronic childhood disease. They are some of the most compassionate, caring, and determined women I have ever met. They have helped me tremendously on this journey, and they have become a source of comfort and strength. I’d like to offer you that same source of comfort and strength, and I’d like this community to encourage you in your time of need and help keep you moving forward along your way.

This community of rare-disease mamas has been down the road you are walking, and we are returning to light the way. This is our popcorn trail. Follow our footprints. Can you see us? Flurrying and scurrying around trying to babyproof the path for our new rare mama. We are pounding in big Danger signs to block you from certain detours in the road. We are lighting big marquees and glitter sprinkling paths to say choose this way. We are pointing out potholes and rocks in your path. “Step here, not there.”

We want no other rare mama to tread these rare childhood disease roads unaccompanied. Take our hands, let us lead you down the paths we’ve tread before you, and give you all that we know to make your road just a bit easier. Let’s walk this road together!

As fellow sisters in rare-disease motherhood, we are standing alongside you as living, breathing reminders that you can make it. That you can survive and that one day you might even thrive (we already know you will). Because, look at us, here we are. We are just a group of ordinary, everyday mothers who were handed an extraordinary circumstance and are making our way through it.

When you look around your immediate surroundings, you may feel alone. You may feel like you’re the only one walking the road of rare childhood diseases. But, mama, trust us when we tell you, mothers of children with rare diseases are everywhere. If you start to look around, you’ll see us, rare-disease mothers.

You’ll see us shuffling our amazing kids in wheelchairs and walkers. You’ll see us marching in and out of your child’s doctor’s offices or your children’s hospital. You’ll meet us at your physical therapy, occupational therapy, or speech therapy office.

You may recognize us by all of our apparatus. You may know us by our quick tempo. You might recognize us by our battle scars.

You know what else you’ll recognize us by? Our warmth, our wisdom, our fellowship, our hearts, our smarts, our passion, our fortitude, and our grace. You’ll recognize the way we walk—our gait, leading and always marching forward but at the same time checking back and lovingly allowing time for those who are catching up. You’ll recognize our faces, a little weathered, a lot tired, but with resolute determination and well-worn laugh lines.

Mama, you are not alone! From one mother to another, who has been where you are, hear me: you are not alone.

We come from all walks of life. We come from all religious backgrounds. We come from all races. We come from all ethnicities. We come from cities, farms, suburbs, and boroughs. We come from poor, middle-class, and upper-class backgrounds. Some rare diseases have higher rates of prevalence among particular background and ethnicities, but many don’t. Rare disease often doesn’t discriminate among these things.

With over seven thousand different types of rare diseases, the chances are good that our child’s condition may look very different from another’s. Some are cognitive. Some are physical. Some are both. Some are moderate. Some are severe. Some are life-threatening. The same disease can even vary greatly in its effects from one child to the next.

So while the diseases our children are facing may be different, and though we as mothers may all be different, there is something that unites us: the love for our child.

I have seen the power of this love. I have seen mothers step up in strength and hope because of this love. I have seen them choose bravery over fear. I have seen them grow and flourish. I have seen them cultivate admirable parts of their personality and push to new heights of their abilities that they may not have even known were possible. I have been a witness to their miracles.

Mama, this community of rare-disease mamas has journeyed before you and has returned to tell you that you are more powerful and capable than you think you are. We see you, and we already know all the good you are going to do.

The thousands of mothers who have gone before you are cheering you on, saying, “You can do this, mama! We are doing it and so can you!”

We are waiting for you. We are rooting for you.

We are welcoming you with open arms, beloved sister.