On a Prayer..

Dear Pastor H,

I am writing this letter to give my ten year old daughter the voice she will need to sing the praises and prayers that have been hidden within her..

If I had to guess, I’d say you probably get a couple of hundred of these heartfelt, devastatingly tragic letters every month… maybe more. Probably a good bit more than you could possibly have the time to read… Still, I hope somehow this letter finds its way to you. And when it gets there I hope you’ve got time to read..

My name is Amber. I live in small town Mississippi and my youngest girl believes that you will one day change her world.

Miss Sandra Grace Howell has been Gracie since the womb, and she’s brought me more happiness and joy and pain and worry and fear and an utterly unfathomable love within this life than I could have possibly imagined. More than any single soul could really ever need..

She is my anchor, my hope, my sorrow and delight. She’s so much more than what she looks like and I wouldn’t give her back or change a thing..

But if things had been different…

Gracie was born full term (38wks, 3days) and with an APGAR score of 8 and then 9 after two minutes of life. Being insulin dependent, I was inundated with amniotic fluids and, after about 7 hours of labor, had to have a c-section. The next time we saw her we were told she had had some complications and that she was going to need some specialized care. At 4 days old she was transported by ambulance to the University Hospital in Jackson, MS.


She was more than a month old before we got to bring her home with us. The Drs still weren’t sure it was a good idea, but we’d spent enough time in the NICU and her daddy and I wanted her at home.. if she wasn’t going to live she still had five siblings to meet and who wanted to love her.

The day we left the Dr looked her daddy and I straight in the eyes and told us we would do well to simply “hold her and love her and keep her comfortable”.

It was 5 months later when she finally woke up. She started smiling more and sleeping less and she was beautiful. Every couple of months would bring some new and incredible things we weren’t prepared for and it was crazy. She was smart and aware and not blind or deaf as we’d all imagined.. She would likely never walk or talk or feed herself, but she was a miracle.

I do apologize for being so long winded, Pastor, but I had to tell you that to tell you this..
Last month we went to an orthopedic surgeon. (She has a bursa cyst on one knee and I want it gone).. So, off to orthopedics we went. Always the skeptic, I regarded this new doctor like the quack I had so quickly assumed he would be and prepared myself to comfort my child in the wake of his obvious shortcomings.

Boy, was I wrong..

It would seem as though Dr Ortho is the answer to our prayers. With an incredible 90% success rate in regards to the surgery left dangling like a carrot, I couldn’t be more excited or more afraid for what’s to come. I mean, 90%.. I am utterly blown to pieces every time I hear myself say it out loud..

Sounds crazy, doesn’t it?

Well we’re scheduled for November and I couldn’t be more terrified and thrilled and leery if I tried..

Essentially, they’re going to put her to sleep and reconstruct her legs from about mid-thigh down to the arches of her feet. Crazy isn’t it.. Try imagining that through my eyes. This is a BIG deal. Big enough to stand before Him (and as proxy, before You) in hopes that you might take some time out for my girl.

And so I ask you, as a mother, as somebody who has not been blessed with faith enough to move this mountain on my own, would it be possible for us to come and lean on you? On your voice? On your strength? On your unfaltering relationship with our Lord in this mess…?

If you can find time you between now and Halloween, I will be more than blessed to afford my child the opportunity to hold your hand and even possibly to hear you speak her name in prayer. All you need to do is tell me when..
I sincerely appreciate the time that has been taken here today. We’ll need all the prayers we can get, and somehow Grace thinks your prayers are special..

Many blessings,
Amber and Gracie Howell ♥️

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A Rare Moment..

This is Dratton, wearing Mickey Mouse gloves and a smile July 11, 2014 in Kissimmee, FL during our Make•A•Wish trip to Disney and Give Kids The World. 
My husband isn’t generally the most smiley faced man. Strong and hard working with a serious, somber personality, it is truly a rare and beautiful gift to watch him laugh and play with our children like he did on this vacation. 
https://dailypost.wordpress.com/photo-challenges/rare/

Is This Really It??

I’m having something of a day today. Not that it was really very different from most other days.. You’d think that by now I’d be used to my life, and I guess for the most part I am. But sometimes it gets me, and I feel alone and it sucks. 

Being a mom is just about the only thing I’ve ever done right, and I’m proud of the job that I’ve done. I’ve made a LOT of mistakes and I’ve fallen more times than I thought I’d come back from, but I never gave up on myself or my kids and I’d do it again if I could. 

Then there are days like today, when nothing feels right, and I wish I could go back to bed.. But I can’t, of course, not when there’s still so much stuff left to do and without me it wouldn’t get done. 

And I’m tired. 

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?