Passionate About Fort Worth
and the Moms Who Live Here

The Tribe I Never Wanted (But Can’t Live Without)

The tribe I never wanted Everyone says it takes a village to raise a child. My village is filled with people I never asked for.  

Doctors. Therapists. Nurses. Durable Medical Equipment reps. Nursing supervisors. Schedulers. Pharmacists. Dieticians. Respiratory therapists. Orthotists. Surgeons. Mobility equipment reps. Insurance case managers. 

Lots of people. All the time. In our home, and in our world.  

On any given day, I will communicate and spend time with at least three of these individuals. They have seen me at some of my best and worst moments — crying in my pajamas, praying with my children, disciplining post-tantrum, and holding steady in the face of the unknown. 

In some ways, they are exactly what you’d want in your tribe — people who have seen you at your worst and love you still. 

Except their love is not for me. It’s for my child. 

My daughter is the glue. She’s the center of this village, and no matter how I feel about my tribe of friendly strangers, I know I need them . . . for her. 

My daughter’s nurse helps keep her healthy and allows me to focus on being mom. 

Her therapists keep an eye on her muscles and development, teaching me how to stretch and play with my daughter to encourage her growth. 

Her doctors and surgeons watch for critical care markers, sharing the responsibility of her wellbeing and livelihood so I’m not the only one to carry the load.  

And all of the paper pushers — the office schedulers, insurance case managers, and equipment and mobility reps — take care of the details behind the scenes. These people work hard to ensure my daughter has what she needs. When they do their job well, I am free from the burden of chasing down authorizations and signatures. 

I am free to spend time loving my child and caring for my family, like all moms do. 

No, I didn’t pick these people. I didn’t ask for them or ever want them in my life. But I know without them, I wouldn’t survive. 

My tribe humbles me. 

Now, that’s not to say I love having people around all the time. And there are many days I miss being alone. 

physical therapyI will always cherish the memories of those first few weeks with my daughter, before any diagnosis existed in our lives. We watched cartoons, snuggled on the couch, took long walks, and slept on a blanket outdoors. 

No one was watching or asking about her input and output. No one was instructing me on how to maximize our playtime. She didn’t need respiratory treatments or suctioning. And, I didn’t need the help because I was fully capable of being her mom. 

It’s taken me almost three years to arrive at this place, where I can put expectations aside and look to my daughter as my compass. I’ve learned to step into that vulnerable space where I can freely admit, “I need help!” and then humbly accept whoever arrives. 

And, I’ve learned that for some parents, being able to provide for their children means widening the circle and letting others in. Because regardless of the circumstances, we were never meant to parent alone. 

So, whether you are still searching for your tribe or learning to accept the one you have, we all need extra people in our village. 

I guess some of our villages are just a little bigger than others. 

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2 Responses to The Tribe I Never Wanted (But Can’t Live Without)

  1. Alyssa October 5, 2017 at 8:44 pm #

    Such a great article and so true!!!! Add to the tribe a family of should be strangers connected by a disease No one wants. A family I couldn’t make it through this life without! I love you sweet friend!

    • Jenny Pope
      Jenny Pope October 6, 2017 at 8:00 am #

      Oh I so agree!! That tribe deserves an entire post unto its own! Where would we be without each other and our SMA moms?? Love you friend!

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