The Mom Tribe No One Would Choose

There is a lot written about “finding your tribe” when you become a mom. It is important to find other moms who “get you” and with whom you can share your fears, frustrations, and joys of raising up little people. Motherhood is hard, isolating, and no one should have to do it alone without a support system.

But what if your tribe wasn’t made up of the usual, expected moms :: moms who live in your neighborhood, attend your church, or whose kids attend the same preschool as yours? What if your tribe’s underlying common thread was grief, fear, and need for support?

What if all the moms in your tribe had children who are going to die?

I belong to this tribe. All of us have children with life-limiting diagnoses, diseases that are robbing our babies of a normal childhood and will eventually steal them from us.

We didn’t meet in the usual ways. Awkward support groups, mutual friends, and Facebook were our means of introduction. We don’t see each other in person very frequently, and due to the unpredictability of our children’s health, our plans often get cancelled or postponed. But when it counts, we are there for each other.

Moms in My Tribe are Fierce

The term “Momma Bear” had to have been coined about a mom with a sick child. The moms in my tribe fiercely protect their children, as well as our friends’ children, against ignorance and unfair treatment. We aren’t afraid to speak our minds to doctors, educators, and family members. We may avoid conflict in other areas of our lives, but not when it comes to our children.

Moms in My Tribe are Smart

When I have a question about an unusual symptom, malfunctioning medical equipment, or an insurance issue, I turn to my tribe first. Collectively, we have just as much practical knowledge about our children’s disease and the logistics of living with it than any medical professional. We have long lists of medications and their dosages memorized, and we know the names and functions of procedures and treatments, even if our own children haven’t needed them {yet}.

Moms in My Tribe are Compassionate

There is a delicate balance of grief and joy when raising a child who you are eventually going to lose. There is joy in the everyday moments, but grief because they are fleeting and you know they will be gone sooner than is fair. Moms who are also in this position are the only ones who can truly empathize. We may not always have the right words for one another, but we understand. We grieve with and for each other, perhaps differently and more deeply than anyone else.

Moms in My Tribe are Vulnerable

We can cry with and in front of each other, curse our children’s disease, and make inappropriate jokes about death without fear of being ostracized or misunderstood. We all have the same fears and the same horrible future, and there’s no reason to process these circumstances alone. We have to be strong for one another.

Just days before Christmas, a family in my tribe lost their son to the same disease as my son G. Their sweet angel boy was just a few weeks older than my own little boy. His death has rocked me. I am devastated for my friends who are how navigating life without their child, and I have been forced to face the reality that my family could be next. And if we aren’t next, at some point it will be our turn. But the outpouring of support, prayers, and shared grief from our tribe that I have witnessed gives me comfort that we won’t walk that road alone. We belong to each other.

My tribe isn’t a group I ever would have chosen to join, but I am honored to fight alongside these women and call these moms my friends.

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