The B Life: Mom-Tribes Matter (and why special needs Moms need each other, too)

Mom-Tribes Matter (and why special needs Moms need each other, too)

Navigating motherhood as a new mom is never easy. 

As new moms, we can all relate to the same list of struggles: is baby eating enough? how long should I be depending on my husband for help around the house? what if I don't like being a mom? why did no one tell me I would need to wear a bra all the time? The list goes on.

We all complain about the absurd amount of diapers we use (honestly, HOW DO THEY POOP SO MUCH?!), and we share stories of first smiles, milestones reached, and those precious moments we spend holding our sweet babes in the wee hours of the morning. 

Motherhood is a tribe. No one can deny that. Similar questions bring us together; joys are shared, successes celebrated, and differences provide fodder for interesting conversation. And you know what? We need our tribe. 

Special needs moms need their tribes too, perhaps more. 

I don't think I quite believed the doctors and social workers when they told us that anyone with a "normal" child would never understand what we are going through. They told us to learn where to spend our energies, and that relationships with our friends are families would change. I didn't want to believe that my tribe of moms would not be there when I needed support, or understanding. I didn't want to believe that my own parents or in-laws couldn't understand what I was going through. It seemed so pervasive, so assuming. 

They weren't wrong, though. And they weren't right.

Moms have a unique and innate understanding of each other's troubles.

But moms of special needs Trisomy children have their own way of coping with additional challenges. 

Because the fact is that our children won't reach the milestones when "normal children" will - if at all. We understand life with machines and monitors and specialized care. We live life with G-tubes and Oxygen back-ups. We have nursing staff in our home, and medical appointments to attend almost weekly.

We have had people tell us that our children are "incompatible with life."

We have had to reconcile with the fact that our child may succumb to health issues at any time. 

We didn't take our babies home from the hospital right away. Instead, we visited an NICU for weeks and weeks, and asked permission to hold our own children.

We've mourned our children with the diagnosis. Mourned expectation, faced reality, and tried to adjust to a normal - even one where our child may not be living. We prepared for the worst when we wanted to prepare for the best. And we tried to remain gracious to others, because they offered so much grace to us. 

But grace isn't always understanding, by no fault of its own. 

We have to worry about feeding bags, expensive medications, tubes, ventilators, and sterile water. "Normal baby things" like toys, diapers, and a change of clothes make up maybe a third of what we actually carry in our diaper bags. 

We worry about nursing schedules, flu shots, and how on earth we're going to get groceries this week (whether because we can't afford it because medical supplies needed to be purchased, or because bringing our child out in public during flu season is too great a risk and need appropriately trained childcare). 

We struggle with normal - because it will never exist for us the way it exists for other moms. 

Special needs changes everything.

Yet we find so much joy in the smallest accomplishments. And when these accomplishments come, EVERY mom from EVERY tribe celebrates with us. It's a beautiful celebration too - one filled with Instagram likes, Facebook comments, hugs, smiles, and joy - and in my case red wine and ice cream. There's something universal in the joy of mothers when their children succeed in finding their own strength. We rejoice together - special needs or not.

Truly, we've been blessed with Joseph. His medical needs pale in comparison to other Trisomy children. We have been able to start living our lives away from machines: away from saturation monitors and feed pumps, syringes, tubes, wiring, and vents. Of course, we have it all ready just in case. 

But in some ways, that makes me stuck between tribes. We don't live our lives towing ventilators. We have only three medications to give. We've had success with oral feeding. And we're working on meeting some average milestones. 

In either regard, my mom-tribes are irreplaceable. Why? Because I couldn't have gotten through the early days without many of my closest mom-friends and family. They knew ME (albeit not necessarily all Joseph's complications), and that was invaluable. They prayed with me, and laughed with me, and their hearts poured out with love and sympathy and grace beyond measure. 

And now? They celebrate wildly and fully in Joseph's achievements. They offer encouragement in daily struggles.

My Trisomy mom tribe? They rock too: they have insights on medical gear, toys, hospital appointments, and general development. And that's why special needs mums need each other - those relationships form for our children and often inform their success. 

But your tribe of normal mums? They feed your soul. 

Because even though I'm a special needs mom, I'm still one who needs other moms in fellowship and love. Ultimately, that's what our tribes are for.

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