I have urges, needs, dreams, desires, goals. I’m human. I have all of those things. Some of them are selfish and some of them are selfless. Finding a way to combine all of my worlds seems to be my hardest task these days. Maybe because it’s the one task I’m supposed to have the most control over though lately I feel I have control of nothing. I’ve swallowed the far too large pill that is Rileys health. I know I cannot control what happens to her but also know how to be right there with her when it does. That part I know I can do. That is the only thing I am sure of. I know how to be “that” mother…the hospital mother…the “nothing else matters but this moment” mother. But right now…right now Riley is home, she’s stable(ish) and so my most important job is to be a functioning mother in the out and open. The mother who’s skin I can live in and they’ll be proud of. The mother that isn’t waiting for one of their children to get sick again. The mother that makes them grateful for every moment without making them feel time is fleeting. The mother that attends to their needs but teaches them independence. I don’t know who she looks like…I don’t know how to manage the time and responsibilities in a way that serves every aspect of our reality.  One minute I want to quit work, live off grid and soak up every moment in the sunshine with Riley knowing that there may not be an endless amount of summers ahead of her. The next I’m yearning to go back to work for 2 reasons…number 1 I am passionate, full of ideas and LOVE working, number 2 I need Presley to learn the balance of working mother and know that even through hardship women GET. SHIT. DONE. The next I want to curl up in a ball in the farthest corner of my house and hope that no one asks me for anything because even the request of toast might break me.

I look at them and am lost as to how to not fuck them up. I honestly feel like that’s 98% of parenting…just not fucking them up. When I go back to work will they understand and appreciate now that it is because there are bills to pay?…because work is a part of me?…because it’s a part of teaching them ethic? Or will they just feel secondary…secondary to my schedule…secondary to bills…secondary to lessons they won’t value until they are past the phase of thinking I just suck. I envision Presley as an adult…who do I have to be to make her look at me and thank me as opposed to resent me? What is the schedule that will make her remember me as a dedicated mother and professional? How do I work to put food on the table but also sit at it with her? And then there’s Riley…Riley I can’t picture as an adult. Riley I can only see in the present…which makes being away from her even harder. The life lessons I yearn to teach her are simpler…they are to enjoy, to endure, to appreciate…to just be present. Funny thing is…I feel I’m learning most of that through her. There is not a human on this planet that I have learned more about endurance and appreciation than that little lady. But while most days I feel she is my teacher I am still hers.

The pressure I put on myself is immense but necessary. There isn’t a thing I can put down. Nothing I can neglect. I have an enormous tribe of supporters but at the end of the day it is me tucking these girls into bed and hoping that tomorrow I’ll be better for them. And then I lay myself down and beg that tomorrow I’ll be better for me. I looked at a calendar yesterday…reviewed all of Rileys upcoming appointments and Presleys school functions and around that I penciled in a work schedule that I think I can manage. Trying to plan my life out even 5 weeks in advance seemed ludicrous…my brain keeps taunting me. It whispers things like “sure lady that’s a great plan”, “ha…this looks a whole to like the schedule of a healthy kid mom” and then it shouts at me “you’ll never pull this off” and  then “fuck off, yes you will”. Earning a living while raising non-assholes while managing Rileys complicated little body while maintaining sanity just seems well…impossible. But it’s not. It can’t be because turns out that is my life. We all only get one…this is mine and it has to work, it has to be beautiful, it has to mean something…it has to do all of that…for them.

As for Riley…she continues to equally amaze and confuse us all. The only thing that is certain about her is uncertainty. We have no answers only more questions. We have no cure only management. We have no timeline only the time in front of us. We have one goal and that is to keep her as happy and healthy as her body will allow and love her viciously no matter what. I keep telling myself that somehow if I just keep coming back to that thought everything else will fall into place. We aren’t in the hospital anymore Toto…we’re back in the world and it’s time to be a part of it.

As per usual…thoughts, prayers, juju…keep it coming y’all.


3 thoughts on “

  1. You’ve got it!! I hate to sound bitter, cause I don’t like to think I am. But as a parent it just doesn’t seem like one can win! No matter what you do or how hard you try, someone is going to complain!!!

    Sent from my iPad Pamela (Gigi) Stringer 322.148.2306. Mobile 322.113.2179. Home


  2. How’s your mom doing? Is she still staying with you? You seem pretty chill on the outside, but I know your churning on the inside. Are you a Christian?

    Sent from my iPad Pamela (Gigi) Stringer 322.148.2306. Mobile 322.113.2179. Home


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