Friday, November 7, 2014

The 5/5's Scoop

Two months? Seriously? It's been two months since I've treated myself to some writing therapy. My mind is a constant blog, I assure you, but the schedule I am keeping these days... doesn't have a lot of wiggle room for the extras.

Between home-schooling my kiddos, running my at-home business, twice daily treatments for Kambree, therapies all over town for Kenton, children's activities, and keeping up with laundry, messes, and dishes for a family of five, I pretty much feel like I'm barely keeping my head above water most days.

But you didn't click on this link to watch me wallow...so wallow, I will not!  I will share some updates on our world.... our WHOLE world... all of us!

Kres- Wow... the last few months she has taken on a whole new personality... and though a little diva sneaks in here and there.... she is altogether a true delight. Hilarious. So expressive. Independent. We kind of just want to bottle her up... keep her this age FOREVER.... savor all the cute little things she does...so we can forever remember this stage....our last with our BABY! She absolutely adores her older siblings, and I am often very thankful that our decision to homeschool has given her so much quality time with them.


KD- Where to begin. This boy steals our hearts, over and over and over again. He has to work so hard...so very hard...for pretty much EVERY thing he does in life. Memorizing letters and numbers, making friends, physical activities, even little things we take for granted... dealing with transitions in daily life, adapting to change, self-control in loud environments. He has SO much to manage and cope with...but he's doing it! He is making leaps and bounds every day. He played soccer this year...and although I was very apprehensive... he didn't do too bad. He was engaged-ish, enjoyed being on a team, and of course loved the post-game snacks. He would beam when he noticed a family member had come to cheer him on... which is a victory in it's own. Seems like just yesterday, we were yearning for him to want to connect with us..... to want to hear us say "way to go".... and I'd say we arrived at that!  He never scored a legitimate goal...although in his mind he may have, he was far from the star of the team, but was always one of the first to help a player up after a fall. A few times this season, as he "ran" by us on the sidelines, we could hear him mutter, "they're just too fast", as he would try to catch up.... it was both heartbreaking and heartwarming at the same time...but we were so very proud to see him out their trying. Not letting his lack of giftedness in some areas hold him back. We are so thankful for his amazing coaches, the incredible Upwards program, and a wonderful church that seeks ways to minister to our amazing community!


Kam-  Whew! Where to start. Second grade is treating her well. She is pretty stinkin' smart...and loves school, especially when she gets to be a student in Aunt Nell's classroom! If she isn't doing school.... you can find her at our kitchen table doing something artsy. She loves creating things on her rainbow loom.... coloring, drawing, singing, and most recently writing songs--- songs about our AWESOME God!! She is also counting down the days until basketball begins. Let's see, all of that.... and oh yea.. fighting Cystic Fibrosis like a champ! As you probably saw, her last culture in October revealed that her pseudomonas had returned.... we weren't at all happy to hear this news, but we are happy to have a plan of attack to combat it....and keep this nasty disease at bay as long as we can. Since that makes twice in 6 months that she has tested positive for it, she will now be on an extra step with her twice daily treatments for the next 6  months making them nearly twice as long.... our hopes of getting her down to one treatment a day have been dashed.... instead they've doubled..... but it is what it is. We try to make the most of her time spent doing treatments... we play games as a family... we do mother daughter manicures (this gets tricky with the shaking), we read books, we watch tv REALLY loudly to hear over the machine, we do creative things.... AND most recently, Kambree has had an idea she is working on. One she is VERY excited about... and will be sharing soon! :)


Hubs- Sorry babe... this isn't 4/5s of the White World, it's the WHOLE! (Is this starting to seem like a Christmas letter? May as well, because my guess this is as close as it gets this year. ;)) Let's see. My husband works so hard and is one of the lucky few who can honestly tell you he LOVES his job. They are in the process of opening a new Ashley Homestore in East Wichita, and he's pretty giddy about it! More work....but more fun! He is so amazing to balance it all. The kids and I are so very blessed to have such a hard working provider for our family.... but one that still makes each of us feel so very loved and important. He doesn't really have any hobbies..... as his schedule doesn't allow for it... so we are his hobbies. Truly.  It's tough work being the strong one all the time.... I don't know how he does it. We have a few different body parts ;)...but we both have hearts... and the road we've been on the last year has been hard for both of us, we just deal in different ways. I blog. I cry. I have amazing girlfriends and sisters I get to lean on because that's what we women do. He just has to be tough.... and every once in a while, when I see a twinge of pain starting to show itself in him... I reminded how hard it must be to him. So I force him to talk... remind him that rocks break sometimes too, and I pray for him, all the time. I am just so darn lucky to have him.

As for me, let's see I'm a work in progress. Some days I feel like I've got it all together... emotionally strong, focused on the day at hand.... and other days, I feel like I'm on the edge of a mental breakdown. Those days are because I struggle with staying in the here and now.... I let my mind wander to what the future looks like for us... for our sweet babies...on those days I may be feeling a bit sorry for myself about the way things have played out for us.  It doesn't last long though! I cling to what I know is true. God's got this! We've already seen his glory revealed in many ways through this journey.... through the diagnosis process with both Kenton and Kambree, and the way the pieces all fit together.... through financial provision for our family... in unexpected ways, through providing inexplicably expensive medication for our daughter.... and so much more! We KNOW he is in control.... and this verse is one I have hidden in my  heart for THOSE days.

Give thanks in all circumstances, for this is God's will for you in Christ Jesus. 1 Thessalonians 5:18

And who the HECK am I to argue with that?!? It doesn't say give thanks when life is peachy. Give thanks when you get what you want. Give thanks when your kids are healthy. It says give thanks in ALL CIRCUMSTANCES.....so that's just what we'll do!

I thank God for the people Autism and Cystic Fibrosis has brought in our paths. I thank God for the new found patience it has taught us in dealing with our children. I thank God for the lesson in judgment it has taught in regards to awareness in this world of OTHER people's struggles.  I thank God for reasons to lean on him. I thank God for using us, to help show his glory. I thank God for the reminder that we have to continue to share his Good News with this hurting world.. because there are other families out there, that are dealing with similar things, or far worse... without the saving knowledge of Him.... and I can't comprehend how you put one foot in front of the other without Him.
And mostly, I thank God for this...


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