Story of My Life..

Tomorrow is Monday. Usually my favorite day of the week, this one happens to be slated for a full day of chores. (WTF Monday? You coulda warned me.. 😒)

It has come to my attention that we’ve less than a full pack of pull-ups left here in the house, and I don’t have a clue where to buy them.. They were being delivered once a month by some place out in Pearl but they stopped for no reason sometime earlier last year. When I called (and I’ve called like six times – seriously) I’m told we need an updated prescription and that they’ll fax a request over to her doctor. Well after waiting a few months and getting nothing i went to the pediatrician and asked her what to do. So she finds the website and prints out the forms and then sits down with me and fills them out. I can only assume she faxed them in as I have yet to hear back about anything.

Its SO frustrating. If I were a toddler I might throw a tantrum. Hell, I might throw onevanyway..


Will It Ever?

I wonder if it’s ever going to get any easier.. Not that I’m complaining, really.. It’s just that the older she gets, the more she seems to realize that she’s different. 

Watching her try and be like her sisters is so hard sometimes. She wants so badly to be able to do things for herself but she can’t. She’s so frustrated all the time now that she’s constantly lashing out at everyone. Tantrums and tears have become an every day thing and it’s awful. 

Not that I blame her..

We’ve always done our best to allow her to be as independent as she possibly can, and I really think it’s added to her overall quality of life. Sure, we could have built a ramp when she was two and let her live her life sitting in a wheelchair as suggested, but I don’t think she’d be who she is today.. The smart, strong willed, independent little girl we’ve managed to raise could never have learned to do things for herself in a chair. Hell, those doctors all said to prepare for the worst and just look at her now, she’s incredible. We’ve never treated her any different than we have her brothers and sisters and she’s never had it any other way. Today she laughs and loves and tests her limits just like any other seven year old would. She gets her feelings hurt and loves to dance and spends every day at the same public school as her siblings. 

She’s perfect just the way God made her and if given the choice, I’m not sure I’d want her any other way. Don’t get me wrong, I would do just about anything if it would mean giving her a normal life. For her to walk and talk and get up and dance on her own would be a miracle, but I love her all the same the way she is. 

God doesn’t make mistakes, and I’m pretty sure He didn’t start with her. 


Randomness 😒

​Gracie. She has good days and bad. The older she gets, the more defined they become. There is no longer a grey area where she sits back and chills. Nowadays I look back on things I used to complain about and just laugh. I thought I had it so rough..

I had no idea how life would turn out and I still don’t, not really. She’s changing all the time. Something good for today might be a train wreck tomorrow and there’s no way to tell which way she’ll go. It’s exhausting. 

We live on the outskirts of a small town in Mississippi. At roughly 2,000 people and no stop light, we’re hardly a blip on the map in my book. Surrounded mainly by timber and fields, it’s a fifteen minute drive in various directions just to get to, say, a Walmart.. Or a movie theater.. Or a restaurant that doesn’t have a drive through window. 

Our town is old and beautiful and quiet but there’s not a whole lot here. I have to drive at least 20 miles to another town to find a Walmart or a restaurant without a drive through window, the nearest being Philadelphia. This is where I shop and do my banking and get my gas. It’s where we go to the doctor and to the dentist and to get our vehicle tags and pay our utility bills and where Dratton has worked for more than sixteen years. 

Gracie doesn’t go to Philadelphia. Not willingly anyway. She starts crying as soon as she realizes the rest of us are putting our shoes on and doesn’t stop until we get there. Sometimes she cries until we get all the way back home again.. 

Those are her bad days. On a good day she’ll still poke her lip out and whine but it isn’t so bad if I stay clear of the railroad tracks that run through the middle of everything. (We got stuck waiting for a train to pass by once and she’s terrified to near hysterics now) To cross them on certain roads or to be away from the house after dark (no matter where we are) is to invite the most ear-piercing screams of sheer terror imaginable. Within minutes she can be red with fever, shaking and crying inconsolably while her lower lip literally trembles. It’s awful and again, there’s not a thing any of us can do for her. 

We’ve tried anxiety meds and backseat DVD players and darkly tinted windows, nothing helps for very long. 

I’m at my wits end. I mean, all of this is just fine and dandy during the school year. I simply do what needs to be done before two o’clock. But right now it’s summer and she goes with me every where. It’s not like I can snap my fingers and conjure up a reliable sitter for a seven year old with a feeding tube and in diapers. That’s not happening. 

So I deal with it. Every day. My “fountain of patience”, as my mom used to call it, is fast drying up as this summer crawls by at a snail’s pace. 

I never thought I’d say it, but Lord, how I miss getting up at 5:30 every morning and dropping the girls off at school! I miss teacher meetings and homework and afternoon complaints about the bus driver and what they served for lunch. 

I. Miss. School. 

Is summer over yet?