Randomness of Summer

I love the freedom that comes with summer. No alarm clocks, no getting up and getting dressed and having to be 4 different places by 9:00. I guess it's just the slower pace we all crave this time of year.

Time for playing in the backyard...






Time for naps...



WAY too much time spent doing this...yes he's been put in a trance by the TV.



Time for therapy...

Some of our best time is spent poolside...

Don't know, just liked this one...

Time for the debut of Sophie's Swimwear 2009...

You all know that SK loves the perfectly heated therapy pool at Wet Tots, well I am also happy to report that she is also loving the outdoor pool at her Grandparent’s house this year. She’s having a ball swimming with her brothers, although she doesn’t appreciate getting splashed, that doesn't really happen to her at Wet Tots, you know.

We are taking some family time next week, we need to unplug, decompress and rejuvenate ourselves. Thanks for praying for our girl, love y'all.

A Week of Firsts

It was a great week of Vacation Bible School at First Baptist Church Trussville, I think the adults may have had as much fun as the kids. Being a part of 1, 060 kids singing, laughing and praising Jesus was indescribable, but I’m gonna try. I love watching them worship Jesus in their own way, with their own music played loud and with lots of jumping around. Y’all hearing all of these children singing the words ”We belong to Jesus” sent goosebumps up and down my arms and caused huge tears to well up in my eyes. Kindergartners through Sixth graders singing “And in this world we will shine” made my heart so full. I know it blessed our Lord to hear those sweet voices of praise and absolute genuineness (if that’s a word) of heart, it sure did bless mine.

All my kids got to experience VBS, yes ALL of them. My boys (even little Grey) are seasoned pros, they look forward to this week every summer. For Sophie Kate however, this was her first experience with the loud fun chaos know as Vacation Bible School. She had her own class to go to and what a blessing that was. I was totally conflicted on whether or not to take her out of therapy and let her go to VBS and I am so glad that I did b/c she got to experience a lot of firsts this week. Of course without question I know that our family and friends want so much for SK and will do pretty much anything for her and will help her achieve any goal that is set before her, but when people you don’t even know feel the same way about your child it is an equally precious thing. SK’s teachers were fabulous and did sooo much with her, they weren’t about to let her sit around and watch and I just loved that!!

SK each morning before VBS…



SK and Mrs. Cindy coloring…

SK making a bookmark…

SK painting during crafts…

SK in music…

SK and Mrs. Melanie made an angel…

Oh my goodness how is it that SK has never petted a dog. I can’t believe I have denied her such things, look how happy she is…

SK each afternoon after VBS…

Praise God for a wonderful week, most importantly for the lives that were changed and turned toward Him. Oh that we could all experience that child-like faith in God, it is real, full-on, exciting and genuine just like they are. Thank you Jesus for blessing my heart this week through your people!!

Another First for SK

Seems like this week is going to be just as busy as last week. It’s Vacation Bible School time at our church. Some of you may be wondering why this is news worthy, well I’ll tell you…it’s Miss Sassy’s first VBS. Last year we were in Atlanta for the month of June for Hyperbaric Oxygen treatments, which I am so grateful that we were able to do, but we sure did miss Bible School week.

Sophie Kate is in the ”special needs” class this year. I am going to start by saying that that pill was a little difficult for me to swallow, but it was far outshone by the love and care born out of that class. We have an unbelievable support system through our church here in Trussville (First Baptist). I have thought though, since SK has been born what it would mean to me as a visitor in any church for someone to welcome us there and have a special class for our girl. It would mean the world to me as her mother to have someone take her to her own class and for her to be cared for there and for her to be able to interact with other children, she loves that. Well, our church has made that happen this year for VBS, isn’t that so cool? I don’t know all the details at this point, SK has only been one day so far, but what I do know is that she has been a very smiley girl today.

I’ll definitely get some pictures and post them later and let you all know how the week turned out, but for now I will leave you with these pictures from a friend’s birthday party this weekend where Miss Sassy and her daddy went down the big slide at Pump It Up.

Did SK like the big slide? Let’s put it this way, she didn’t cry but she didn’t really want to keep doing it either, so you decide. Thanks for checking in on us.

So far this summer...

So far this summer, this is what we have been up to...

Slip n' sliding...

Grey served as the slip n' slid "monitor."

Enjoying popsicles with cousins...

Cannonballs...

just all around cuteness...

and buzz cuts...

SK sleeping in her new "Mac Daddy" of all strollers, more to come on that later...

Our oldest has spent the week at UAB baseball camp and consequently I have spent more time downtown at UAB than I probably should have.  As a side note to all our local baseball buddies, this is a great camp and I highly recommend it.  Cooper has had a great time.  I am so proud of him for doing this, it was totally out of his comfort zone.  He knew none of the coaches and had no friends doing this with him.  Now take Jacob and put him in a situation where he knows no one and he will totally thrive and come out with lots of new "best friends,"  Cooper on the other hand, not so much.  I am so proud of him and what he has accomplished this week.

They were teaching the kids sliding techniques here, great idea to combine that with water, thanks a lot coaches.  The boys loved it!!

Coaches hosing the boys down after practice one day, it's really been a fun week for Cooper.

On the last day of camp Cooper had his picture made with some of the coaches...

Coach Walker-Cooper was in his group each day for the morning session of the camp

Coach Polk, probably didn't mean as much to Cooper as it did to me, but he is a "hero" on the campus of Mississippi State University a former Bulldog baseball coach.

Coach Shoop-head coach of the UAB baseball team, also former head coach at Mississippi State, can't say enough good things about him.  He is all about forming character in these boys along with teaching them the game of baseball.  He speaks openly about his relationship with Christ, what and great role model he is for lots of boys and young men I am sure.

Hope you all are enjoying your summer, thanks for checking in on us.

This is the reason why...

This is the reason we set up a fund for her...

This is one of the reasons I get up so early and go to bed so exhausted...

This is one of the reasons my committed husband and devoted father to our four children gets up and goes to work everyday...

This is the reason we all smile today...

Still lots of unanswered questions

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

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.