Still lots of unanswered questions

June 5th, 2009

I was just thinking, as life continues to plow ahead with maddening speed w/o very much change to be noted, at what point does Sophie Kate get to be accepted for who she is?  At what point  does she get to be who she is instead of constantly being molded into some kind of dream that I have for her?  I’m not sure what I mean by that, it’s so hard to put into words, I certainly don’t want things to come out the wrong way.  It seems there is definitely a fine line between doing everything we can for her and then turning that around to “Are we trying to make her into something she’s not?”  I want to give her every chance possible to do whatever she can, but I don’t feel as though I am enjoying her as my daughter.  She is work to me, a lot of work and I am afraid I am only viewing her in that way. 

I’m tired, I’m tired of therapy.  I want one of SK’s therapists to tell me that it’s ok to take a break, but see, none of them will b/c it’s not ok for SK to take a break.  How am I supposed to manage an entire summer with therapy with all the boys being out of school?  When do they get the attention that Sophie Kate demands of me almost all the time?  When is it their turn?   The guilt I feel over her therapy and how to manage it along with our family life is unbelievable.  The guilt I feel over being tired of therapy whether it’s in our home or whether it’s outpatient is crushing and never-ending. 

Sophie Kate is happy most of the time and although she doesn’t talk to me, she does smile.  Shouldn’t that be enough for me?  Why isn’t it?  Is it b/c I let the pressures and expectations of the world be placed on her?  Will she really not be a complete or whole person if she’s never able to crawl, walk or talk?  Do I judge her life based on what she is able to do?  Or do I see the impact she makes on the world around her? 

This is really more for myself than anyone else.  When do I stop trying to make her into someone else?  And I don’t mean stop trying to help her altogether, please don’t misunderstand what I am trying desparately to say.   When will I accept her for who she is?  I guess my real question is when will the pain and tears end?  When will my heart find joy in her instead of utter sadness and brokenness?  When will I see her as her Creator sees her?  The world will always see her as lacking or “broken,” but I refuse to look to this world for answers.  God give me the eyes and the tenderness of heart to see her like You see her.     

Love/Hate Relationships

June 2nd, 2009

I have a love/hate relationship with these….

This is the “Special Tomato” chair my daughter sits in to be fed, to play with toys on the tray that came with it and then just to hang out in the family room or outside with us.

This is the bath chair that goes in our tub.  This is where I bathe my daughter.

This is Sophie Kate’s stander.  This is where my daughter bears weight on her legs and feet.

I have a love/relationship with these things.  I hate the way they look and I hate that they have to be in my house.  I hate that I have to use them for my baby girl.  I love that they allow me a better way to care for her. 

The purple “Special Tomato” chair allows SK to sit properly, it is completely adjustable and has been adjusted to fit her by her therapists.  It’s on wheels so we can push it easily anywhere we want her to go, even outside with us.  It came with a tray and we put her toys and communication devices on it and try to get her to activate them.  We got this from another special needs child and we are so thankful to have it for Sophie.

The bath chair is on loan to us through our Early Intervention program, we will only be able to keep it until SK is 3, we will definitely have to get one of our own then, b/c this is something we can’t live without.  It has made bathing sooo much easier.  We use our hand held shower head and basically just give her a shower.  The bath chair sits too high for us to fill up the bath tub and actually put her in water that’s really the only thing I don’t like about it.  So I guess technically it’s a shower chair.

The stander is also on loan to us through our Early Intervention program and it too will have to be returned when SK is 3, that is when our Early Intervention services will end.  SK is strapped in to the thing with her arms leaning on the tray that is on top.  Again, there is a lot of adjusting and effort required to get her into it, but once in it the idea is that she is standing upright, bearing weight through her legs and feet.  Hopefully one day she will gain enough strength to be able to stand on her own, so much else has to happen before that though, we are a long way from any of that stuff right now.

Some days I just can’t believe that we are living this life and today is one of those days.  How has all this stuff come to be in our home?  Slowly and over time God has prepared our hearts and our lives.  He is the only reason we are able to bear this.  I still can’t take it all in, not at once and certainly not at all when I start to wonder and worry about Sophie Kate’s future.  He draws me back in though, back to today, back to the here and now.  Jesus, our Provider gives us what we need for today.  Oh, He will take care of our future too, but it will be in His time and in His way and that is where our trust and faith in our Creator come in.  God is taking care of SK, He been preparing for her since before she was born, it is not in the way that I so desperately want, but then His thoughts are higher than my thoughts and His ways are higher than my ways.  He is bringing us through an unbelievably difficult and heartbreaking situation, though, that I would have not thought survivable 2 years ago, but here we are almost 19 months later.  May we never take our eyes off our Creator God, the One and Only source of all our strength.     

Summer Vacation Begins

May 29th, 2009

It’s officially summer in my mind, weather (pun intended) James Spann (our local man with the weather plan) would agree with me or not b/c school is out here.  I would say no more early mornings but evidently my kids haven’t got the memo on that yet.  If the mornings are still going to be early then at least they can be lazy since we don’t have to be anywhere at any certain time.  Well, that is until Vacation Bible School starts and then there’s Cooper’s baseball camp, oh and then there’s some therapy days and doctor appointments scattered in and around our summer.  OK then, except for ALL those days then we really don’t have to be anywhere at any certain time.

So let the games begin….and every now and then scattered in and amongst the “That’s not fair,” “Give that back,”  “He hit me,” and the beloved “I’m telling,” I occasionally get “Thanks mom,” “love you, mama,” and “that was so fun” and that makes it all worth it.  I’ll leave you with one other sweet taste of summer that makes all I do worth it too. 


Have a great weekend!

Recap of the Weekend

May 26th, 2009

Finally, I get a chance to blog about our Memorial Day Weekend.  Oh, no not b/c I haven’t had a chance it’s b/c I forgot my camera and have been so bummed that I can’t post any pictures.  Well, problem solved, we were with Chad’s family this weekend, so I have confiscated my mother-in-law’s camera, maybe it will be a while before she notices it’s gone and I can keep it over here and pretend it’s mine.  I love it b/c it’s one of those digital cameras that actually takes the picture when you push the button as opposed to ALL the other ones where you get about a 2 second delay, are y’all feeling my pain, cause I hate when that happens. 

Anyway, I digress, back to our weekend.  We have had Daddy off work for so long (5 days) that tomorrow is going to be a painful dose of reality for me.  It’s been fun though.  We had friends over Friday night and all the boys (they have 3 as well) were outside until dark.  Gotta love it when the kids are so tired that they really don’t protest very much when it’s time to go to bed. 

Saturday morning we left for Atlanta, for a cookout with Chad’s family.  I’m pretty impressed with us we didn’t get up until after 7:00am and left at 9:30am and that included showers for all 6 of us and packing for an overnight stay and believe me Miss Sassy doesn’t travel lightly.  We figured we could do without a lot of things if we happened to forget them, but we knew we couldn’t leave out any of SK’s things, some of that stuff you know isn’t sold at your local drugstore, we would have just been coming home.  We did well though, we didn’t leave anything behind except my camera of course.

Saturday was spent with lots of family, lots of cousins playing and lots of good food.  The rain held off for the most part, only one or two passing showers and then all the kids were right back at it.  It was actually nice the clouds hung around so it never got too terribly hot. 

First they played in the sand…

Next, they raced around the backyard…

Look at those faces, I wish they knew how to have fun. 

As you can see Grey just likes to be driven around…

…or dragged around, whichever.

Oh, I’m sorry did y’all think baseball season was over?  Oh, no they play it everywhere they go…

Finally, our day ended with a 3 year old version of a battle-royal…

They just kept chasing each other and then piling on top of each other, it was hilarious.

What about my little sweetie, what was she doing while all of this craziness was going on around her?  Being adorable, of course.

SK did so good on our trip.  She had a bit of trouble going to sleep Saturday night, but overall she was an absolute angel, even in the car, she did great!

Monday was a bit dreary here so we spent most of it playing an intense game of Star Wars monopoly (or as Jacob calls it bonopoly).  Yes, I admit it we have Star Wars monopoly and I will not defend Chad by saying that we got it after we had kids, b/c we didn’t.  Also, I am not ashamed to say that I beat them all and am now the reigning champion for 2 games running, Queen Amidala and I rule the Galaxy!  Ok, I’ve gone to far now, haven’t I?

We are entering our last week of school and our last week of regularly scheduled therapy, I think I just heard SK cheering in the background.  Yep, it will officially be summer here for us, when the kids get out of school on Thursday.  Thanks for checking in on us.

The Multiple Title Post

May 21st, 2009

Hey y’all, this post is going to be free from medical updates, recent doctor visits and free from progress or lack thereof in therapy.  Nope you will not find any of that here in this post (and it’s not even a “Not Me Monday” for those of you who are avid blog readers like me), this post is just going to be FUN!

As you all know from the two previous posts, we have been having a rough couple of weeks with SK, so with Daddy being off work on Wednesday of this week, we made an executive decision…..we ditched school, therapy and work for some family time!  At the time we really didn’t know what we were going to do, we were just going to do something and boy did it turn into quite the adventure. 

Our morning started calmly enough we took the kids to a late breakfast at IHOP, which Cooper declared he liked better than Cracker Barrel breakfast, not really sure how I feel about that but it was super good.  We then headed out to Oak Mountain State Park to see what kind of adventure we could find. 

Our first stop was the petting farm and hence the first title that today’s post was going to be “When Farm Animals Attack.”  There are going to be several different titles today b/c I could not choose just one and they all spoke to a different part of our day, so indulge me on this. 

Do you notice someone conspicuously absent from this picture?

No, it’s not SK and no farm animals did not attack SK, contrary to what it looks like in this picture.

It’s Grey, no farm animals didn’t attack him either, but he acted like they might at any moment and kept at a self imposed “safe distance” from them at all times.

This probably didn’t help Grey’s firmly held belief that all the “cows” were going to eat him.  We’ve really got to work on farm animal recognition with him, don’t we?  P.S. Grey, there weren’t any cows there at all….goats, sheep, horses, yes….cows, no. 

Sophie Kate’s first pony ride, awwww!

Cooper loved petting the baby goats, I’m sorry Grey I mean “cows.”

I had to throw this one in there just b/c it’s so funny to me.  He has no clue how small he is, I love it!

So sorry, this is going to be a long post, I’m just going to lay it out there for ya, but we had quite a day.  Title #2 courtesy of Jacob is “This is just like Survivor.”  Yes folks, next we were off to “hike” to the waterfalls and by hike I was thinking leisurely walk.  Wow was I sorely mistaken and I mean “sorely” in every sense of the word.  Y’all seriously it was only .4 miles.  I know you are all laughing so was I until I found out that .3 of the miles were down steep ravines in which we were literally scooting down on our bottomers.  Now, I have to pause here b/c this is eerily reminiscent of another questionable judgement call Chad and I made in this post

Alright, back on track here, props definitely go to Chad, who carried SK on his back in the baby backpack.

It was sooo worth it though once we got to the bottom and absolutely made our kids day. 

One of my very favorites of the day….

Our picture of the day b/c it goes perfectly with our word of the day…FUN!

It’s called brooding, not mad, right?

Daddy and his baby girl

What I hold most dear on this earth….

SK post “hike” and by hike I mean the toughest .4 miles (.8 round trip) one can possibly do in one day, ha ha!

Y’all I am seriously not exaggerating until we got back on the nice wide path that led us back to our car, we were literally going straight down on the way to the bottom of the falls or straight up (which I actually found easier) like bear crawling on our way out of the falls.  I have never in my life and Chad did it all with (grandparents this is where you all must stop reading) SK on his back, SK and I think he’s the man!  The boys had the time of their life despite let’s see…one bloody nose for Grey, not Jacob, I know y’all are surprised at that one.  Jacob did get in on the injury action though with an unfortunate reinjury to an already torn up knee.  Oh, yeah that thing’s going to be looking pretty bad by the weekend.

The third and final title for today’s post also came from my son Jacob, “Take it like a man.”  Can y’all believe he said that to me on the way up the ravine on the trip back?  To which I promptly responded, “I’m not one,” to which he said, “Then take it like a woman,” to which I quickly quipped back (and ladies don’t be offended by this, please know it was in a moment of weakness) “I AM and now we are all going to sit here and rest on these benches until your daddy figures out how to get the minivan down here to rescue us”—–that really happened and do y’all know that I did the whole thing in my yellow box black w/white polka dots flip flops?  Cut me some slack, I had no idea that was going to be on the agenda when we left that morning, but boy do those little babies have a story to tell now.  P.S. Chad, I’m getting me some new yellow boxes out of this. 

It was a great day, so good for us, it totally hit the spot and the boys are already begging to go back, that’s the true sign of a good time.  Priorities guys, we can’t take any of our “stuff” with us, God, family and friends are what we need to hold close to and these 5 are my blue sky.

I posted more pictures from our day in the photo album, there were just too many for this one post and also on my Facebook page if you are on Facebook.

Thanks for checking in on us, have a great Memorial Day weekend!   

Old Wounds, New Wounds

May 18th, 2009

Wow, it has rained here all weekend long.  It was weird not to have any baseball games this weekend.  We are officially in the home stretch, it’s tournament time, win or go home, or in the case of Cooper’s league, win or lose twice and then go home (yeah for the double elimination tournament).

I seem to be clinging to baseball this season b/c it really feels like the only normal thing in my life.  We have gone through quite a bit with Sophie Kate this week and I feel like scabs have been pulled off of old wounds and they are hurting afresh once again.  I find myself looking at her and thinking to myself how unbelievably beautiful she is and about all that she could have been instead of just loving her for who she is, I hate when I do that to her.

I keep having these “this can’t be real” moments and we ended up with 2 of them last week.  The first one was the results of the swallow study that was done last Wednesday.  Sophie Kate is silently aspirating her food.  Really?  I can’t feed her anything by mouth?  Is this really happening??  Is she really going to be fed by a tube for the rest of her life??

The second “this can’t be real” moment was Friday with SK’s physical therapists, it  involved something I have been dreading for a while now.  The wheelchair talk, I can’t even type it much less say it w/o crying.  Pushing my own child around in her very own wheelchair is overwhelming, I cannot even picture it my mind’s eye.  Oh, but I get to pick out the style, the color and can even get her name embroidered on it, yippee!!!!  Can you feel the “I can’t wait” in my voice??  Maybe I am being too sarcastic and vague here, let me be clear….I HATE THIS!!!

Is all of this really real?  God, are you really going to let her be just like “they” said she was going to be??  It’s too much….

Don’t tell me it’s going to be OK

May 14th, 2009

Just going to warn you guys, it hasn’t been a good week here, proceed at your own risk.  You want the bad news first or the “that really sucks” bad news. 

Ok, we’ll start with the bad news first.  SK and I went to see our favorite urologist (doesn’t everyone have one) on Tuesday (May 12).  Sk still has the same kidney stone that she has had in her left kidney for going on 8 months now.  It is still in the exact same spot that it was 4 months ago and then 4 months ago from that.  Her urologist feels that it needs to come out b/c it can cause other stones to form the longer it remains in there and he also feels that if she can get rid of this one there may be a chance that she can remain kidney stone free, which would be great, if this weren’t the bad news post.  The problem is the location of this one, it is in the worst spot possible, of course it is, it’s Sophie and he cannot get to it w/o great risk to SK’s plumbing if you will.  So we are waiting another 3-4 months to get this checked out again in hopes it may be in a different location, unless she becomes symptomatic (unexplained fever and vomiting, can’t wait) which would mean it’s on the move.  Bad news for Sophie is that he thinks this is a pretty decent size stone for her to pass and he thinks she will be symptomatic with it but at least then he said it would definitely be in a position at that point where he could remove it easily.  That now concludes the very boring kidney stone update that I thought y’all couldn’t live without.

Onto the “that really sucks” bad news.  Sophie Kate went to feeding clinic this past Monday, which actually went fine.  They wanted her scheduled for a modified barium swallow study (mdss), it determines what kind of things are safe for SK to eat and swallow from liquids to thick consistencies like pudding and honey.  SK had her swallow study done on Wednesday and the results were not good to say the least.  She failed the swallow study and is not cleared to have anything by mouth for 6 months when they will do another swallow study in hopes of I’m not sure what.  I don’t have the energy to go into all the details about this right now.  Everyone was shocked and by everyone I mean her therapists and me, no one saw this coming.  Even the Occupational Therapist that was doing the study told me just before we started that she could tell by looking at her that she wasn’t going to fail.  I am so sad, I have worked so hard on her oral feeding and now what…..I can’t believe this, see I told you it really sucks!!    

When we were finally leaving Children’s we got stuck behind the most darling little girl toddling along after her daddy who was walking slowly and patiently waiting on her to catch up.  As much as I tried to get around them, the hallways were too busy and I couldn’t, so there I was forced to watch this precious little girl toddle all the way to the parking deck.  That is supposed to be my baby girl toddling.  Toddling as far away from Children’s Hospital as possible, toddling at the park and in our backyard.  Toddling to the little play kitchen and fixin’ me some pretend food and then toddling to get her babies so that I can help her change their clothes and then toddling to kiss and hug me goodnight before she toddles to her perfectly normal bed in her perfectly normal room.  Toddling everywhere she goes….just know that things are not ok over here and they’re not going to be ok.  God may give us the strength to accept and deal with all this crap, but just know it will NEVER be ok with me!!!!! 

Happy Mother’s Day

May 10th, 2009

Hey everyone, we had a very fun weekend here.  We kicked off the weekend with a backyard water gun fight on Friday evening…

Water guns $20.00…

Water shoes $10.00…

Little brother squirting big brother in the face…priceless…

He’s sneaky, but little does he know he’s fixin’ to be on the wrong end of this fight…

Boys + water = hours of fun

Of course it’s not over until someone starts crying….ok now it’s over

After the two middle ones were put to bed, Cooper kept going and going….he was soaked

The next day brought the last of the regular season baseball games, the tournament starts next week.  Jacob got to play pitcher for his team and got an out a home plate.  He has now played second base, center field and pitcher this year, Great Job Jacob!

This is what happens to SK when we are the baseball fields for too long.  Can anyone sympathize with her? 

Cooper went 3 for 3 Saturday, with great hits to the outfield.

Next year big guy, you can be just like them…

 The Dodgers ended their season with a win, way to go boys!

We ended Saturday with a pool party for Jacob’s baseball team.  They were being so silly…

and so darling…

Jacob, with his coach and his trophy.  We are so proud of you!

It was a great weekend here and it is only getting better.  I have already had breakfast in bed this morning, made for me by my sweet family before we went to church and now I get to indulge in one of my very favorite things….the Sunday afternoon nap.  It’s been gone from me for 18 months now and boy have we missed each other.  Let me just set the stage for ya, it’s dark and it’s raining here and I have a tiny red head beside me that has already beat me to the sleeping part and I can’t wait to join him, shhh….Happy Mother’s Day!

I Wasn’t Asked

May 7th, 2009

We survived the double header doctor appointments on Tuesday (March 4).  We found out that Grey is as wide as he is tall, 40 pounds and 40 inches.  Seriously, y’all we are going to be cooking 3 pounds of bacon for breakfast for these guys when they are teenagers, if not sooner than that. 

Miss Sassy is up to 24 pounds 8 ounces and is 33 inches long or tall, which ever you prefer.  For those of you who are interested in percentages, SK is 50th percentile in weight and 95th percentile in height, so she’s taller than 95% of children her age, no big surprise there.  By the way, Grey is 95% across the board. 

Yes, they did measure Sophie Kate’s head circumference, but I opted out of that one.  I told them I did not want to know what it was.  SK’s nurses are so precious and so good to us and they know how much that measurement has been upsetting me over the past months.  I decided that it is just a number and as much as I want that number to be in the normal range it isn’t.  SK is not defined by a number or by the size of her head for that matter.  She is who she is…..and some days that is absolutely heartbreaking and devastating to me and then some days I am able to find joy in the small things she can do. 

Sophie Kate is a daughter of the Most High King and her worth is defined by His love for her and to Him she is a big deal.  To her God she is not a diagnosis, she is not a number and she is certainly not a sad, tragic story of how things went wrong.  She is wonderfully made in His eyes.  I am saying this more for my ownself than for anyone else, I wish I could see her through God’s eyes.  I wish I could see the big picture.  Who knows even if I did it probably wouldn’t matter, I would still want her to be healed, to be able to sit up and to walk and to be able to hear her sweet voice call my name, but guess what, God didn’t ask me.  He didn’t say to me, hey this is going to happen but just watch the way I am going to work this out.  Satan intended this to harm you and your family but watch and see how I am going to turn this around for good.  No, I wasn’t asked about this b/c I am human and I would have said “No” to this proposal.  “No” God use someone else’s baby, “No” God bring good out of a tragic situation in someone else’s life, not mine. 

No, I wasn’t asked, but now I pray….Father, let your Glory shine through these circumstances, out of what Satan intended for bad, God, only you can bring forth good.  Father, please continue to work in and around and through and all up and over Sophie’s life, give us the strength to face each day, keep our eyes focused on You and allow us to be keenly aware of Your very real and active presence in our lives everyday.  

Our Girl is 18 Months Old!

May 3rd, 2009

 This is what has been going on with SK since she turned one.

Happy Birthday Sophie Kate!


Sophie Kate is 18 months old today, Sunday, May 3, 2009