Yesterday was just a CRAPPY Cystic Fibrosis day.. that's all there is to it.
The phone rang about 10:00.. and it was a prescription manufacturer, letting me know they'd explored our new insurance policy and we'd need to pay $5500 (which would equate to 1.5 months of this particular drug) before our price on the drug would drop to $48. Whaaaaaaaaaaaaaaaat?!?
De ja vu... here we go again! I told them there was some mistake, as I had specifically checked on coverage for every drug she could need PRIOR to selecting the policy... and luckily... I was right! After about a 4 hour rat chase of calls to insurance companies, the doctor, and the script company.. it was agreed, that they were mistakenly trying to send it to an out of network pharmacy....and so we SHOULD be receiving this drug soon.... which is good, because she needs it!
Literally..as I was winding down the conversation with our insurance company, and the knot in my stomach was subsiding... Children's Mercy was beeping in... so I clicked over expecting to fill the pharmacist in on what BCBS had just told me.... instead, they were calling with Kambree's results from last week's culture.
They weren't good. Despite being on a very strong inhaled antibiotic, twice daily since November... she is still culturing pseudomonas. So since April, when we first learned that she had Cysitc Fibrosis, we've only had one culture that didn't show it.... and that's just pretty darn discouraging.
The doctor said they don't believe it's colonized or in mucoid form.... so that is good. I've googled enough to know that we definitely don't want it to do either of those things... and so, we desperately need to kick this. But how???
Apparently endless hours of treatments and thousands upon thousands of dollars in prescriptions, isn't cutting it....and that's pretty frustrating.
I really don't know what all of this means for her long term health. I know I cling to phrases that the doctor says, like.... "every day spent with pseudomonas, is a day that lung disease is worsening...", and they resonate over and over again in my mind... but in some ways, I'm too scared to ask the big questions. What does this REALLY mean for my daughter? What if we CAN'T get rid of it? What if the 7 years of her life that she was untreated, has left us unable to get control of this bacteria?
And maybe there aren't answers anyway. Maybe it's such a case by case scenario, that you just face the facts you have each day... and don't spend time dwelling on the "what ifs". Ahhhh, if it were only that easy!
So for now... we finish the current round of antibiotics she is on...we are adding in another inhaled step to her evening treatment... making that one now, about 2 hours (ugh)... then we head back to Children's Mercy on the 11th of Feb. At that time, they will x-ray her lungs, see if there is any cause for further concern... compare it to last April's x-ray... and see where we go from here.
Luckily, yesterday, as I was having a wallowing kind of day... .Kambree was with a dear friend all day... having the time of her life. It was so nice to know she was out doing normal kid stuff, and to not have to mask how I was feeling.... the younger two are pretty well oblivious.
I wasn't sure whether or not we should tell her that it's still not gone... but ultimately decided that we should.... and then as soon as we did, I wished we hadn't. She was heartbroken... and cried, and cried, and cried.... throughout the majority of her treatment.
We had talked at her appointment last week, about trading out a few things morning/night as it pertains to her treatment... and it was going to decrease the length of time of her evening treatment... which she was so excited about... instead.... it is now getting any longer.
I am thankful that we have medications and treatments to slow this disease... I'll start by saying that... but if you'd allow me to have a pity party... just for a few lines of this blog... I think I'd like to throw one.... and at the risk of sounding negative... I'm going to be brutally honest.
Every single morning... and every single night... those treatments affect our lives... nothing is simple any more.... you can't be spontaneous..... your mind is constantly analyzing when it's time to do the next one. Most of us can't even find the time to commit to daily exercise... or a daily quiet time... those are 30-45 minute activities you are trying to fit into an already busy life.... and these treatments are more than 3 hours a day now. Can you even imagine?
Dad gets home from work.... we eat... they wrestle... and the entire time... I'm watching the clock... thinking... it's 8... if we start RIGHT NOW... she'll be done around 9:45-10---but wait... she hasn't taken her bath yet... now it's 10:30... and just like that, our night is gone. Add any other normal evening activity for a family, and again... imagine where that 2 hour treatment leaves you.
I hate it. I absolutely hate it. I hate how much of her childhood is spent wearing that pink vest... I hate how many times I have to interrupt whatever normal childhood activity she is doing.. and tell her it's time for a treatment. I hate it when she asks me questions about her future... and she tries to wrap her head around the fact... that this is FOREVER... unless a cure is found... this is her life.... these are the cards she was dealt.
Ok. Done. Felt good while I was typing it to get it out... and as soon as I post, I'll probably regret tipping my cards and letting everyone know how I really feel.... or maybe just how I feel at this moment... because the worst part of feeling that way... is that the very thing that is so time consuming and frustrating.... is the very thing that is prolonging her life.... so how can I hate it??? So maybe it's more of a love/hate.
Either which way... it's our new reality. I guess I thought we'd be used to it by now.. and unphased, but it seems like it's the opposite.... as time goes on... I'm realizing that this is not going away.
I need to move on with my evening... so I'll just ask for prayers.
Prayers for VANISHING pseudomonas on Feb. 11!
Prayers for the most beautiful set of lungs ever seen on a 7 year old when they take a peek!
Pray for Kambree's spirits... she is going through a lot of the emotional side of this... and sometimes we find ourselves at a loss for what to say!
Thanks for following us! We are so blessed by the support system our AMAZING GOD has blessed us with. As always, we NEVER doubt that he will carry us through the valleys, just as he's led us through many peaks! Our circumstances, do not change who HE is.... we will praise him in the good... and we will praise him in the bad!
Much love to you all!
A blog. Far cheaper than therapy. My chance to turn my overthinking sleepless nights into productivity...and maybe help someone along the way.
Tuesday, January 20, 2015
Wednesday, November 19, 2014
Our Song
About 11 years ago, I was sitting in my boyfriend's garage... a total man-cave, complete with a couch and pool table....he was having a party. I was keeping my spot on the couch nice and warm, as I typically do in those environments, watching him mingle and have a good time. The next thing I knew, his pool stick had become his microphone, and he was signing a song. As silly as it sounds, I can pinpoint THAT exact moment as being when I fell in love with him.
Fast forward to today, that boyfriend of mine and I are celebrating 9 incredible years of marriage. The song he sang that night... is "our song"... and ironically enough, it's actually a song about separation... but that doesn't matter.... because EVERY time we hear that song, he grabs my hand, and I am taken right back to that moment....that we fell in love (or at least I did--pretty sure I had HIM at hello!)
I don't claim to have the perfect marriage, not sure those even exist.... but I can tell you the last 9 years have had a lot of highs, and life has thrown a lot of lows at us too.
Today, as he is working his day off in preparation for the opening of a new store he is so excited about, and I'm homebound with the kiddos, one of which isn't feeling well... I'm going to reflect on the highs and lows.
This date, November 19th, wasn't just our anniversary.... but it was actually the due date of our very first child.... yes, we waited a whopping 3 months to start a family. I remember seeing those two pink lines....and running out to buy every infant OU (he's a BIG fan) outfit I could find, for both genders. Then I went home and spread them all over our bed....so that when he came home from work that day, he would have the surprise of his life. I will never forget the look on his face... the tears in his eyes... and the smile that didn't leave...for several months anyway.
The name game was well under way, it's all we could talk about.... we'd had our first initial appointments.... saw the heartbeat for the first time, and were just thrilled as can be. And then... when I was around 13-14 weeks along... we went to what we thought would be another joyous appointment... but instead got our first dose of devastation in our marriage.... because this time, there was no heartbeat. Our first baby, "Baby K" went straight to heaven.... I cried for days, off an on, for weeks really.... and he was like a stone. I knew he was grieving, but in such a different way.
There is joy after every suffering.. and several months later, there were two more pink lines... our innocence for the pure joy that was there previously, was now tarnished with nerves and anxiousness, but this time was different. This time those two pink lines led to the most beautiful little girl, Kambree, who was safely in our arms on March 22, 2007.
We had more heartache in the form of one more loss before having our second child.... our son, his BOY.... and we were so excited to name him, Kenton.... after Jason's late father. Jason was no stranger to heartache... he had to bury his father, his hero, at the age of 21.... and I know that has shaped him in to the man that he is.... and let me tell you, it's an amazing one.
Kenton's entrance into this world.... was a little too early, and his lungs weren't developed. We got to love on him for a little over an hour, observing concerned "looks" between nurses and doctors, and eventually, they carted him off to the NICU where his lungs collapsed... it was there he stayed for the longest 9 days of my life.
My husband was back and forth, all night long.. trying to be there for me, and trying to be by our son's side. After about 24 hours I was finally able to see Kenton again, and after 48 hours, I was able to hold him. One of the most beautiful moments of my life... that painful few days, opened itself into such a beautiful moment forever etched in my mind. After 5 days, they finally kicked me out of my room... and we spent the next 4 days, by his side each day...but every night ended the same way....Jason dragging his sobbing wife away from their baby's side, and holding her all the way through the hospital halls and to the car..... leaving their son to the care of doctors and nurses...so we could go home and get some sleep, and spend a precious few moments with our daughter. It was certainly not an ideal entrance in to this world, but where there is great pain, there is often great joy... and I will NEVER forget the three of us, riding in the elevator to exit the hospital.... on our way home. There are no words to describe the elation we had, to be finally bringing him home!
Our family wasn't quite complete.... Kreslee came on the scene like clockwork, 2 years later....it was uneventful, and she was perfect..... and alas we were done.
Two daughters, one son... each of them perfectly created by the one who knit them together in my womb....
So, the first 5 years of our marriage, can be pretty much summed up like this.... pregnancy, life with an infant, pregnancy, life with an infant and 2 year old, pregnancy, life with an infant, 2 year old, and a four year old. Oy!
Days upon days, years upon years of bottles, diapers, rocking, searching for binkies, so many firsts.... baths, steps, birthdays.... and then one day, all of those things were gone. At the time, it was so exhausting..... parenting in the early years is manual labor.... no doubt about it.....there were many moments when every kid was crying and both parents were trying not to, days where we wondered if we were screwing them all up.... and then one day, we woke up.... and there were no more diapers in the house... the bottles were gone. There was no longer a need for a glider in the nursery and so that was hauled off... the crib taken down... that time in our marriage was gone. We were moving on to another phase. There are moments when I'd give just about anything to go back to those days... to GET to be pregnant one more time, (yes, I LOVED being pregnant), to have another baby to rock and feed... but instead, what we have are the most amazing memories we made in those early years of our marriage.... they are many, and they are sweet.
The last 4 years have had just as many highs.... and of course some lows too, because that is this thing called LIFE. It's not always good... it's not always bad. We have been through devastating diagnosis' for our children, burials of loved ones, and high stress times... but there have also been amazing vacations, our daughter's baptism, new and exciting job ventures, new nieces and nephews... and so many moments where are cups, are truly running over.
As far as it goes for marriage (this is the anniversary edition, right?), I've determined this. It is oh so easy to love each other in the good times, in the health, in the wealth... but when hard times come knocking, THAT is when you find out what your marriage is made of. In high stress times... you want to blame someone... you want to lash out, and often a spouse seems like an easy target. They have to love you, right? What happens to the love if you tear down, and pick at each other, and tear down, and pick at each other...you make each other your punching bag so to speak.... and you never take time to re-focus, and remind yourself of how much you love about that person.
We don't do everything right.... and I can very honestly tell you, the past year of stress in our lives, has forced us to work harder on our marriage than ever before... but that's just what we are doing... working harder. We know what stress does to a marriage... we've seen the statistics... and we won't be one.
For us, here is what working harder looks like....
We've identified that we grieve differently. I vent. I research. I blog. He holds it in. In essence, he's the thinker, I'm the spewer (bad choice of word, did I mention I'm home with a sick one?). I need to let him talk things through in his time... and he needs to be a listening ear even when he doesn't feel like discussing things.
We are quick to apologize when we feel like we have lashed out. We don't let stressful moments, or a slight bicker turn into a day of bickering. We work it out quickly...and move on. You know, kiss and make up?
We remind ourselves that no one has to be "right" or "wrong".
We give each other a "pass" on tone of voice once... it's amazing how many fights can be triggered by the tone of voice... or how one of us perceived it. We remind ourselves, that the person we LOVE is just stressed... and CHOOSE to not make an issue of it. Not to let it turn into a wasted evening of bickering. (I'll admit, Jason has had to do more of this forgiving than me-- but hey, I'm quicker to apologize.)
We are MAKING time to connect with each other, in a quality way, despite the chaos of our schedules filled with therapies and treatments. We are still going on dates, even though it may mean some creativity on getting Kambree's treatment done...even though some times, it just seems easier to stay home.
We pray together. We pray for each other.
We try to make each other laugh and smile....daily. When we were engaged, Jason told me his most important job in life, would be to make me smile every day.... one day I got flowers at work, and the card simply said..... "Did I make you smile?" He did then.... and he still does. In fact.... I just got the most beautiful roses delivered a few minutes ago... nine years later, he is STILL making me smile.
And you know what else we do...
In those crazy hectic moments, where we've been barking at each other... and letting stress mode get the best of us...we will stop and play OUR SONG! We don't just play it, we playfully serenade each other, find the closest thing we can to a pool stick for a makeshift mic, and take ourselves back to that moment in time when we very first fell in love. We take ourselves back to the time where it was just he and I....and all we had was the love that started this whole White world!
Happy anniversary to the most amazing man, I get to call mine. I love you, Jason. You bought me flowers. I blogged about you.... even? It'll have to be, because I've been home taking care of our puking babies for 3 days...no time for a gift.... and so it goes....in the good....in the bad.....I will always love you!
For you inquiring minds on what our song is.... here you go.... take a listen... I assure you we will be!
https://www.youtube.com/watch?v=kPBzTxZQG5Q
Fast forward to today, that boyfriend of mine and I are celebrating 9 incredible years of marriage. The song he sang that night... is "our song"... and ironically enough, it's actually a song about separation... but that doesn't matter.... because EVERY time we hear that song, he grabs my hand, and I am taken right back to that moment....that we fell in love (or at least I did--pretty sure I had HIM at hello!)
I don't claim to have the perfect marriage, not sure those even exist.... but I can tell you the last 9 years have had a lot of highs, and life has thrown a lot of lows at us too.
Today, as he is working his day off in preparation for the opening of a new store he is so excited about, and I'm homebound with the kiddos, one of which isn't feeling well... I'm going to reflect on the highs and lows.
This date, November 19th, wasn't just our anniversary.... but it was actually the due date of our very first child.... yes, we waited a whopping 3 months to start a family. I remember seeing those two pink lines....and running out to buy every infant OU (he's a BIG fan) outfit I could find, for both genders. Then I went home and spread them all over our bed....so that when he came home from work that day, he would have the surprise of his life. I will never forget the look on his face... the tears in his eyes... and the smile that didn't leave...for several months anyway.
The name game was well under way, it's all we could talk about.... we'd had our first initial appointments.... saw the heartbeat for the first time, and were just thrilled as can be. And then... when I was around 13-14 weeks along... we went to what we thought would be another joyous appointment... but instead got our first dose of devastation in our marriage.... because this time, there was no heartbeat. Our first baby, "Baby K" went straight to heaven.... I cried for days, off an on, for weeks really.... and he was like a stone. I knew he was grieving, but in such a different way.
There is joy after every suffering.. and several months later, there were two more pink lines... our innocence for the pure joy that was there previously, was now tarnished with nerves and anxiousness, but this time was different. This time those two pink lines led to the most beautiful little girl, Kambree, who was safely in our arms on March 22, 2007.
We had more heartache in the form of one more loss before having our second child.... our son, his BOY.... and we were so excited to name him, Kenton.... after Jason's late father. Jason was no stranger to heartache... he had to bury his father, his hero, at the age of 21.... and I know that has shaped him in to the man that he is.... and let me tell you, it's an amazing one.
Kenton's entrance into this world.... was a little too early, and his lungs weren't developed. We got to love on him for a little over an hour, observing concerned "looks" between nurses and doctors, and eventually, they carted him off to the NICU where his lungs collapsed... it was there he stayed for the longest 9 days of my life.
My husband was back and forth, all night long.. trying to be there for me, and trying to be by our son's side. After about 24 hours I was finally able to see Kenton again, and after 48 hours, I was able to hold him. One of the most beautiful moments of my life... that painful few days, opened itself into such a beautiful moment forever etched in my mind. After 5 days, they finally kicked me out of my room... and we spent the next 4 days, by his side each day...but every night ended the same way....Jason dragging his sobbing wife away from their baby's side, and holding her all the way through the hospital halls and to the car..... leaving their son to the care of doctors and nurses...so we could go home and get some sleep, and spend a precious few moments with our daughter. It was certainly not an ideal entrance in to this world, but where there is great pain, there is often great joy... and I will NEVER forget the three of us, riding in the elevator to exit the hospital.... on our way home. There are no words to describe the elation we had, to be finally bringing him home!
Our family wasn't quite complete.... Kreslee came on the scene like clockwork, 2 years later....it was uneventful, and she was perfect..... and alas we were done.
Two daughters, one son... each of them perfectly created by the one who knit them together in my womb....
So, the first 5 years of our marriage, can be pretty much summed up like this.... pregnancy, life with an infant, pregnancy, life with an infant and 2 year old, pregnancy, life with an infant, 2 year old, and a four year old. Oy!
Days upon days, years upon years of bottles, diapers, rocking, searching for binkies, so many firsts.... baths, steps, birthdays.... and then one day, all of those things were gone. At the time, it was so exhausting..... parenting in the early years is manual labor.... no doubt about it.....there were many moments when every kid was crying and both parents were trying not to, days where we wondered if we were screwing them all up.... and then one day, we woke up.... and there were no more diapers in the house... the bottles were gone. There was no longer a need for a glider in the nursery and so that was hauled off... the crib taken down... that time in our marriage was gone. We were moving on to another phase. There are moments when I'd give just about anything to go back to those days... to GET to be pregnant one more time, (yes, I LOVED being pregnant), to have another baby to rock and feed... but instead, what we have are the most amazing memories we made in those early years of our marriage.... they are many, and they are sweet.
The last 4 years have had just as many highs.... and of course some lows too, because that is this thing called LIFE. It's not always good... it's not always bad. We have been through devastating diagnosis' for our children, burials of loved ones, and high stress times... but there have also been amazing vacations, our daughter's baptism, new and exciting job ventures, new nieces and nephews... and so many moments where are cups, are truly running over.
As far as it goes for marriage (this is the anniversary edition, right?), I've determined this. It is oh so easy to love each other in the good times, in the health, in the wealth... but when hard times come knocking, THAT is when you find out what your marriage is made of. In high stress times... you want to blame someone... you want to lash out, and often a spouse seems like an easy target. They have to love you, right? What happens to the love if you tear down, and pick at each other, and tear down, and pick at each other...you make each other your punching bag so to speak.... and you never take time to re-focus, and remind yourself of how much you love about that person.
We don't do everything right.... and I can very honestly tell you, the past year of stress in our lives, has forced us to work harder on our marriage than ever before... but that's just what we are doing... working harder. We know what stress does to a marriage... we've seen the statistics... and we won't be one.
For us, here is what working harder looks like....
We've identified that we grieve differently. I vent. I research. I blog. He holds it in. In essence, he's the thinker, I'm the spewer (bad choice of word, did I mention I'm home with a sick one?). I need to let him talk things through in his time... and he needs to be a listening ear even when he doesn't feel like discussing things.
We are quick to apologize when we feel like we have lashed out. We don't let stressful moments, or a slight bicker turn into a day of bickering. We work it out quickly...and move on. You know, kiss and make up?
We remind ourselves that no one has to be "right" or "wrong".
We give each other a "pass" on tone of voice once... it's amazing how many fights can be triggered by the tone of voice... or how one of us perceived it. We remind ourselves, that the person we LOVE is just stressed... and CHOOSE to not make an issue of it. Not to let it turn into a wasted evening of bickering. (I'll admit, Jason has had to do more of this forgiving than me-- but hey, I'm quicker to apologize.)
We are MAKING time to connect with each other, in a quality way, despite the chaos of our schedules filled with therapies and treatments. We are still going on dates, even though it may mean some creativity on getting Kambree's treatment done...even though some times, it just seems easier to stay home.
We pray together. We pray for each other.
We try to make each other laugh and smile....daily. When we were engaged, Jason told me his most important job in life, would be to make me smile every day.... one day I got flowers at work, and the card simply said..... "Did I make you smile?" He did then.... and he still does. In fact.... I just got the most beautiful roses delivered a few minutes ago... nine years later, he is STILL making me smile.
And you know what else we do...
In those crazy hectic moments, where we've been barking at each other... and letting stress mode get the best of us...we will stop and play OUR SONG! We don't just play it, we playfully serenade each other, find the closest thing we can to a pool stick for a makeshift mic, and take ourselves back to that moment in time when we very first fell in love. We take ourselves back to the time where it was just he and I....and all we had was the love that started this whole White world!
Happy anniversary to the most amazing man, I get to call mine. I love you, Jason. You bought me flowers. I blogged about you.... even? It'll have to be, because I've been home taking care of our puking babies for 3 days...no time for a gift.... and so it goes....in the good....in the bad.....I will always love you!
For you inquiring minds on what our song is.... here you go.... take a listen... I assure you we will be!
https://www.youtube.com/watch?v=kPBzTxZQG5Q
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.
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...
Tuesday, September 2, 2014
You Make Me Brave
I love to sing. I love music. I have a twin sister that loves both as well, and from time to time, we stumble on a really good song. We simply text the other the title of the song with the words....You're Welcome! :)
I got one of those texts from her the other day.. and boy was she right! It was a GORGEOUS song, that has spoken to me on a deep, deep level. It's been on repeat an embarrassing amount of times...and my kids are already requesting it and singing along!
So the song...."You Make Me Brave" by Bethel Music and Amanda Cook...happens to be playing, as I blog.
Why did THIS song mean so much!? The words are powerful. They speak right in to me!
Here are some specifics:
"You are for us, not against us!"
I've been asked many times how am I holding up. Where my strength comes from, etc. Simply put, my entire life, I've had an unwavering FAITH in God. At the very core of me, I truly believe that HE is for us! HE is FOR Kambree (& Kenton). HE is for us as parents. He is not against us. I take a deep, deep comfort in this knowledge. I never question it.... I accept it.... and there is nothing greater to have for us....than Him!
"As your love in wave after wave, crashes over me"
I've said it before and I'll say it again. I could list blessing after blessing that has been showered on me and my family in the 36 years I've been on this Earth. Countless blessings. These blessings have crashed over me time and time again.... and even in some of our darkest periods the last few months, the goodness from HIM is till crashing over us, over and over again---through friendships, church family, our careers, on and on! God is surely good to us!
"You called me out beyond the shore into the waves."
That's exactly what has happened to me. I've been on the shore for most of my life. It's easy to praise God from the shores. When things are going smooth. When life is "perfect". When you can look down and see your footprints and look in front of you and know exactly where you are headed. It's easy. But when those waves start crashing on you..... even worse.... when they are crashing on to your BABIES.... and you can't see in front of you.... you don't know what wave is crashing next..... that is when your faith is put to the fire. That is when you have to rely on HIM to make you brave. You have to remind yourself every day that he is the ultimate HEALER....and that if it's his will to do so, he could reach down and take this away from my baby... or he could put the cure in the hands of the ones who are working relentlessly to find one. But you also have to remind yourself every day...that sometimes that is not his will....and that we can wonder all day long why bad things happen to good and faithful people..... but we'll never know. HE doesn't promise easy.... HE just promises to be there!
"You make me brave."
I've been putting something off for about 4 months now. My husband has been gently nudging the last few weeks.... and now, I've played this song enough times... I'm finally brave enough to do it. I called today to schedule the appointment to have Kreslee tested for Cystic Fibrosis. They are supposed to call me in the morning and let me know when we are to take her in...should be this week. We will start with the sweat test... just like how Kenton's saga started and then ended happily..... and how Kambree's diagnosis was determined, and flipped our worlds upside down. We are praying for LOW NUMBERS. Nothing in the medium zone... and NOTHING 60 or higher! I can't even wrap my head around two of my children having this horrible disease, and the time and costs affiliated with it....but we are prepared to face the reality.....good or bad. We've been on both sides of the coin.... the celebrating...and the devastation... and in a few short days.... we will be going through one of those emotions again. Ack!!!
(For those curious about the "genetic odds"... I'll give you the Cliff's Notes (as I understand them).... Jason is a carrier of a CF mutation, Deanna is a carrier as well. Approx. 1 in 30 Caucasians are carriers, we just don't know it, because carriers are supposed to be without symptoms. When two carriers have a child....there is a 50% chance that child will be a carrier.... and a 25% chance that child will have Cystic Fibrosis--meaning they inherited the CF mutation from both parents. 1 mutation = carrier, 2 mutations = Cystic Fibrosis. We want 1...or better yet...NONE!
That day will be a long one of waiting.... we typically have gotten the results within 6-8 hours of the test... and I can't even imagine how hard that waiting will be, knowing what we do now. (The last two waiting games, we didn't know that Jason and I were both carriers.) I know we will get through it, I'm just absolutely dreading taking her to the hospital... watching them hook her up to the machine.... staring at her sweet, innocent face.... this sweet, innocent face...
I got one of those texts from her the other day.. and boy was she right! It was a GORGEOUS song, that has spoken to me on a deep, deep level. It's been on repeat an embarrassing amount of times...and my kids are already requesting it and singing along!
So the song...."You Make Me Brave" by Bethel Music and Amanda Cook...happens to be playing, as I blog.
Why did THIS song mean so much!? The words are powerful. They speak right in to me!
Here are some specifics:
"You are for us, not against us!"
I've been asked many times how am I holding up. Where my strength comes from, etc. Simply put, my entire life, I've had an unwavering FAITH in God. At the very core of me, I truly believe that HE is for us! HE is FOR Kambree (& Kenton). HE is for us as parents. He is not against us. I take a deep, deep comfort in this knowledge. I never question it.... I accept it.... and there is nothing greater to have for us....than Him!
"As your love in wave after wave, crashes over me"
I've said it before and I'll say it again. I could list blessing after blessing that has been showered on me and my family in the 36 years I've been on this Earth. Countless blessings. These blessings have crashed over me time and time again.... and even in some of our darkest periods the last few months, the goodness from HIM is till crashing over us, over and over again---through friendships, church family, our careers, on and on! God is surely good to us!
"You called me out beyond the shore into the waves."
That's exactly what has happened to me. I've been on the shore for most of my life. It's easy to praise God from the shores. When things are going smooth. When life is "perfect". When you can look down and see your footprints and look in front of you and know exactly where you are headed. It's easy. But when those waves start crashing on you..... even worse.... when they are crashing on to your BABIES.... and you can't see in front of you.... you don't know what wave is crashing next..... that is when your faith is put to the fire. That is when you have to rely on HIM to make you brave. You have to remind yourself every day that he is the ultimate HEALER....and that if it's his will to do so, he could reach down and take this away from my baby... or he could put the cure in the hands of the ones who are working relentlessly to find one. But you also have to remind yourself every day...that sometimes that is not his will....and that we can wonder all day long why bad things happen to good and faithful people..... but we'll never know. HE doesn't promise easy.... HE just promises to be there!
"You make me brave."
I've been putting something off for about 4 months now. My husband has been gently nudging the last few weeks.... and now, I've played this song enough times... I'm finally brave enough to do it. I called today to schedule the appointment to have Kreslee tested for Cystic Fibrosis. They are supposed to call me in the morning and let me know when we are to take her in...should be this week. We will start with the sweat test... just like how Kenton's saga started and then ended happily..... and how Kambree's diagnosis was determined, and flipped our worlds upside down. We are praying for LOW NUMBERS. Nothing in the medium zone... and NOTHING 60 or higher! I can't even wrap my head around two of my children having this horrible disease, and the time and costs affiliated with it....but we are prepared to face the reality.....good or bad. We've been on both sides of the coin.... the celebrating...and the devastation... and in a few short days.... we will be going through one of those emotions again. Ack!!!
(For those curious about the "genetic odds"... I'll give you the Cliff's Notes (as I understand them).... Jason is a carrier of a CF mutation, Deanna is a carrier as well. Approx. 1 in 30 Caucasians are carriers, we just don't know it, because carriers are supposed to be without symptoms. When two carriers have a child....there is a 50% chance that child will be a carrier.... and a 25% chance that child will have Cystic Fibrosis--meaning they inherited the CF mutation from both parents. 1 mutation = carrier, 2 mutations = Cystic Fibrosis. We want 1...or better yet...NONE!
That day will be a long one of waiting.... we typically have gotten the results within 6-8 hours of the test... and I can't even imagine how hard that waiting will be, knowing what we do now. (The last two waiting games, we didn't know that Jason and I were both carriers.) I know we will get through it, I'm just absolutely dreading taking her to the hospital... watching them hook her up to the machine.... staring at her sweet, innocent face.... this sweet, innocent face...
and waiting for hours and hours for my phone to ring. I have a feeling a certain song may be on repeat that day... and I know regardless of the outcome HE will continue to make me brave!
Here's the link to the song... maybe you'd rather add it your playlist! You're welcome! ;)
Sunday, August 10, 2014
Wonderfully Made
If you follow my sister on Facebook, this blog is probably coming as no surprise to you.
A quick recap....for those that aren't sure what I'm taking about.
Today, what should have been a fun lunch out after church with friends and family, took an abrupt turn, when my son got a little too loud for some fellow patrons in the restaurant.
It wasn't a meltdown. It was a loud, and awkward exclamation of excitement about an idea he had.... one that we were in the process of trying to control when a couple of adults, not with our party.... decided to yell, "That's enough!" and "Knock it off!"
Since my husband was already on his way over to help my son get control, he stopped at their table, leaned in and quietly (I couldn't even hear what he said) told them, that our son has Autism and we are doing the best that we can.
Then he took, a now crying, Kenton out to the car.... neither finished their lunch. My sister, after some quiet negotiating with me, decided she wanted to make sure the table really understood, to hopefully prevent similar situations in the future (how blessed am I to have her?!)..... so she nicely went over, and said "I wanted to make sure that you understood what my brother-in-law was trying to tell you. My nephew isn't unruly, he has parents that love him and are working very hard with him... but he has Autism, and from time to time, has outbursts like that."
His response.... "How were we supposed to know that? They should put up a sign or something... or alert the people sitting by them in restaurants."
Really? This still leaves me speechless. But more than speechless, it just makes me sad. Honest to goodness.... that was my emotion after today. Not angry. Not ready to go "Mama-Bear" (though other days that may have been the case---today's sermon was on self-control.... no coincidence).. today I was just sad.
This man, is probably a wonderful person... with grandchildren that he loves---and I betcha they love him a whole lot too. I will happily give him the benefit of the doubt that he is a whole-lotta good.... but made a bad decision... and then had too much pride to admit it. Honestly, I'm sure there have been times in my life, where I may have been wrong and too prideful to back down. I can't think of one.. haha, but surely it's happened! Perhaps Jason could help with a few examples...but he's asleep, so we'll move on! ;)
I wished that they would have had grace for my son, and given us the benefit of the doubt (my guess is moving forward they will).... but regardless, I am willing to give them grace.... and I am willing to give them the benefit of the doubt.
We can all use the reminder to extend grace to people. To not make assumptions when we really don't know the facts. When we see an "unruly" child, we can pray for the parents, maybe shoot them a smile, instead of a glare.... and give them the benefit of the doubt that they are doing the best that they can. If they aren't... I'm pretty sure a disapproving look, groan, or eye roll, won't change that anyway.
The folks involved today aren't the first (likely good people) to try to make a point with huffs and puffs...or outbursts of their own... and unfortunately, I know it won't be the last.
So why am I so sad?
I'm sad because when some people look at my son.. they see an unruly, disobedient child, not fit for public outings. What I see, is a little boy that gets so excited in some environments that he sometimes loses control. I see a child, who is easily over-stimulated.... and restaurants, stores, and certain environments bring out certain self-control issues.
I'm sad because when some people are around my son.... all they hear, is an annoying child, with an often times high pitched voice... that repeats himself frequently.
What I hear.... is amazing progress in his communication skills. I hear a little boy, trying to get his thoughts from his brain to his mouth.... and repeating himself until the next phrase comes to him. It's music to my ears....and I will patiently listen to him as long as I need to, soaking in the communication.
I'm sad because often times, children don't know what to make of my son. So he watches them play together, and he is by himself. When he tries to involve himself, it often doesn't go well...so his father and I have to be on constant standby, ready to intervene when needed. We literally take turns being "on duty". He has his own ideas about how things should be done... and in his world, this is very rigid. He is blessed with a handful of dear friends that "get him".... and those friends mean more to us than they will ever know.
I'm sad, because I truly feel sorry for people that don't take the time to get know him. I've said it before...and I'll say it again, and again. This boy, melts my heart.... literally. I'd squeeze him all day long if I could. He has the BIGGEST heart. He is always thinking of his sisters before himself. If he gets to pick a lollipop after the doctors office, or after getting a haircut, he always requests 3....and tells them all about his sisters. If Jason wants to take him for some daddy/son time... we have to make sure he knows the girls will be having fun too.... or he will insist they come along. He is so very smart. He may struggle expressing all that he knows, but if you spend time with him, working with him, you see quickly, just how smart he is! He may struggle to look in your eyes when you talk to him.... but in those moments when he does.... you see just how sweet and innocent he is. He has a sense of humor that we are seeing more and more glimpses of! He is witty. He's clever. He gives the best hugs. He loves his FAMILY. He squeals with delight when we tell him he will be seeing his cousins, aunts/uncles, or grandparents. He is connecting with people....and those that connect back... know exactly what I mean... he steals your heart!
No way around it, it just plain stinks to watch your child have to work so hard in life....to overcome so many things, not the least of which are people that don't understand him.... but here is what I keep coming back to.
Psalm 139:13-14
For You formed my inward parts; You wove me in my mother's womb. I will give thanks to You, for I am fearfully and WONDERFULLY MADE; Wonderful are Your works.
This is true for everyone on this planet.
It's certainly true for my son. He is exactly the child he was created to be...and it was my womb he was grown in..... and I consider myself the LUCKIEST momma in the world to call him mine.
It's a lot of work. There are many hard days. There are shopping trips that leave me pulling out my hair.... there are reports from school that rip my heart out. Things that should be simple tasks can take hours. There are unwanted glares and stares, and huffs and puffs..... but when it's all said and done... it's THEM that I feel sorry for..... not me, not my son! He is wonderfully made. He is a blessing. He is a gift. He is going to keep on making progress. He is going to thrive in life. He's going to make some lucky lady an amazing husband someday.... and end up being a father that will do anything for his kids.
He's taught me so much about life, in just the short 5 years that I've been his mommy.... and I look forward to many, many more lessons from him!
A quick recap....for those that aren't sure what I'm taking about.
Today, what should have been a fun lunch out after church with friends and family, took an abrupt turn, when my son got a little too loud for some fellow patrons in the restaurant.
It wasn't a meltdown. It was a loud, and awkward exclamation of excitement about an idea he had.... one that we were in the process of trying to control when a couple of adults, not with our party.... decided to yell, "That's enough!" and "Knock it off!"
Since my husband was already on his way over to help my son get control, he stopped at their table, leaned in and quietly (I couldn't even hear what he said) told them, that our son has Autism and we are doing the best that we can.
Then he took, a now crying, Kenton out to the car.... neither finished their lunch. My sister, after some quiet negotiating with me, decided she wanted to make sure the table really understood, to hopefully prevent similar situations in the future (how blessed am I to have her?!)..... so she nicely went over, and said "I wanted to make sure that you understood what my brother-in-law was trying to tell you. My nephew isn't unruly, he has parents that love him and are working very hard with him... but he has Autism, and from time to time, has outbursts like that."
His response.... "How were we supposed to know that? They should put up a sign or something... or alert the people sitting by them in restaurants."
Really? This still leaves me speechless. But more than speechless, it just makes me sad. Honest to goodness.... that was my emotion after today. Not angry. Not ready to go "Mama-Bear" (though other days that may have been the case---today's sermon was on self-control.... no coincidence).. today I was just sad.
This man, is probably a wonderful person... with grandchildren that he loves---and I betcha they love him a whole lot too. I will happily give him the benefit of the doubt that he is a whole-lotta good.... but made a bad decision... and then had too much pride to admit it. Honestly, I'm sure there have been times in my life, where I may have been wrong and too prideful to back down. I can't think of one.. haha, but surely it's happened! Perhaps Jason could help with a few examples...but he's asleep, so we'll move on! ;)
I wished that they would have had grace for my son, and given us the benefit of the doubt (my guess is moving forward they will).... but regardless, I am willing to give them grace.... and I am willing to give them the benefit of the doubt.
We can all use the reminder to extend grace to people. To not make assumptions when we really don't know the facts. When we see an "unruly" child, we can pray for the parents, maybe shoot them a smile, instead of a glare.... and give them the benefit of the doubt that they are doing the best that they can. If they aren't... I'm pretty sure a disapproving look, groan, or eye roll, won't change that anyway.
The folks involved today aren't the first (likely good people) to try to make a point with huffs and puffs...or outbursts of their own... and unfortunately, I know it won't be the last.
So why am I so sad?
I'm sad because when some people look at my son.. they see an unruly, disobedient child, not fit for public outings. What I see, is a little boy that gets so excited in some environments that he sometimes loses control. I see a child, who is easily over-stimulated.... and restaurants, stores, and certain environments bring out certain self-control issues.
I'm sad because when some people are around my son.... all they hear, is an annoying child, with an often times high pitched voice... that repeats himself frequently.
What I hear.... is amazing progress in his communication skills. I hear a little boy, trying to get his thoughts from his brain to his mouth.... and repeating himself until the next phrase comes to him. It's music to my ears....and I will patiently listen to him as long as I need to, soaking in the communication.
I'm sad because often times, children don't know what to make of my son. So he watches them play together, and he is by himself. When he tries to involve himself, it often doesn't go well...so his father and I have to be on constant standby, ready to intervene when needed. We literally take turns being "on duty". He has his own ideas about how things should be done... and in his world, this is very rigid. He is blessed with a handful of dear friends that "get him".... and those friends mean more to us than they will ever know.
I'm sad, because I truly feel sorry for people that don't take the time to get know him. I've said it before...and I'll say it again, and again. This boy, melts my heart.... literally. I'd squeeze him all day long if I could. He has the BIGGEST heart. He is always thinking of his sisters before himself. If he gets to pick a lollipop after the doctors office, or after getting a haircut, he always requests 3....and tells them all about his sisters. If Jason wants to take him for some daddy/son time... we have to make sure he knows the girls will be having fun too.... or he will insist they come along. He is so very smart. He may struggle expressing all that he knows, but if you spend time with him, working with him, you see quickly, just how smart he is! He may struggle to look in your eyes when you talk to him.... but in those moments when he does.... you see just how sweet and innocent he is. He has a sense of humor that we are seeing more and more glimpses of! He is witty. He's clever. He gives the best hugs. He loves his FAMILY. He squeals with delight when we tell him he will be seeing his cousins, aunts/uncles, or grandparents. He is connecting with people....and those that connect back... know exactly what I mean... he steals your heart!
No way around it, it just plain stinks to watch your child have to work so hard in life....to overcome so many things, not the least of which are people that don't understand him.... but here is what I keep coming back to.
Psalm 139:13-14
For You formed my inward parts; You wove me in my mother's womb. I will give thanks to You, for I am fearfully and WONDERFULLY MADE; Wonderful are Your works.
(secret's out, not really a blonde)
This is true for everyone on this planet.
It's certainly true for my son. He is exactly the child he was created to be...and it was my womb he was grown in..... and I consider myself the LUCKIEST momma in the world to call him mine.
It's a lot of work. There are many hard days. There are shopping trips that leave me pulling out my hair.... there are reports from school that rip my heart out. Things that should be simple tasks can take hours. There are unwanted glares and stares, and huffs and puffs..... but when it's all said and done... it's THEM that I feel sorry for..... not me, not my son! He is wonderfully made. He is a blessing. He is a gift. He is going to keep on making progress. He is going to thrive in life. He's going to make some lucky lady an amazing husband someday.... and end up being a father that will do anything for his kids.
He's taught me so much about life, in just the short 5 years that I've been his mommy.... and I look forward to many, many more lessons from him!
This is what wonderfully made looks like!
This is what a blessed mama looks like!
This is just one captured squeeze of many, that take place every single day!
(For those hoping for an update on Kambree....she is doing well. She has had many struggles emotionally, but we are sorting through them. There is no happy update on our prescription issues.... and we are more than eager for the enrollment period to open, so we can get her additional insurance coverage. Pray for her spirits! Pray that she can live in the now... and not let her mind wander to the laters....pray that her mommy can do that too!)
Thank you for following The Whole White World!
XOXO
Wednesday, July 16, 2014
Big Numbers & Pink Stains
Has it really been a month since I've blogged? I've started to several times.... but my mind has been such a whirlwind of ups and downs, I've kind of been lost as to where to even start!
I'm generally a very positive person, so when those feelings that aren't so positive start creeping in, I don't like the me I see. Those moments when I hear other people's problems, and find myself longing for my life to return to a time, when my problems were similarly insignificant. Those fleeting moments when I let myself feel sorry for myself for what my daily grind looks like--and how much of our family time, is eaten up with treatments. Let me be specific. In the last 77 days, we've spent approximately 154 hours doing treatments. That is over 6 complete days of my daughter's life, that have been spent hooked up to machines---I don't even want to think about what this will equate to after a year, or 5 or 10. Ugh! Now I'm wallowing. Double Ugh!
The positive news.... no, the GREAT news... is that those treatments are working! Since I've last blogged, we had a return visit to Children's Mercy, and once again, they were thrilled with her progress. Her lung infections have continued to stay away, and her pulmonary function test was even higher! This was such great news..... and further confirmation to us, that our sweet baby is a strong girl, and in many ways, a healthy girl. Things could be much worse. Much, much worse. And so despite, the frustrations of adapting to our new routine, the rushed mornings, and evening fun cut short... we really are thankful for the treatments. They are something tangible we can do, twice a day, to fight this nasty disease. How can we not be thankful for that? We do our best to make the most of the time she is doing treatments.... sit and snuggle with a show...sometimes even with Papa D.
We make rainbow loom bracelets for friends and family. We've played some pretty mean games of tic tac toe.... and worked a few puzzles also. So MAYBE, the better outlook on these treatments is that they have helped us to chisel out time in our busy lives.... to love on her... to give her special attention...and to make memories! THAT outlook feels much better!
More happy news in our world. My son has made INCREDIBLE progress this summer! He is truly amazing us daily. Things we've watched him struggle to do for years now, are starting to come along. He is asking me to "do school" with him daily.... and he is soaking up so much! He is such a joy! All boy... a lot of work.... but such a joy!
Our 3 year old, Kreslee, hasn't gotten much love on here, but let me tell you... she is a HOOT! Keeps us laughing every single day....and you pretty much haven't lived if you have heard her say, "Dat's Wei-wd". From the second she wakes up, til the time she crashes, she is the life of the party. A big, big presence in this family. This pic pretty much sums her personality up! She'd wear those red boots 24/7 if she had her way!
This blog I'm going to talk about some big numbers.....the first one.. is 25,000. That's the number of views this blog has had. Mind blowing really. If even just a portion of those views, have come with prayers lifted up on our behalf, it comes as no surprise to me that Kambree's progress has been so remarkable thus far! With that....here I am again... asking for help with a BIG prayer need....involving some BIG NUMBERS. :/
As I've said before, at this time, we have no prescription coverage for Kambree. Great medical coverage otherwise (our insurance paid 100% of her $15,000 vest--praise GOD)..... just nothing for prescriptions. The costs for her needed prescriptions are over $3200.00 each month. If she ends up needing the TOBI again, our month total will be over $10,000.00. I have spent hours and hours on the phone with different "patient assistance" programs.... tried every number I can find or have been given, but the outcome is always the same. We make too much money for assistance. They have a flat dollar amount drawn, that you can't exceed.... and I have yet to find anyone that will make an exception, and factor in the COST of the prescription in to the equation. I received a call last week that left me very hopeful..... a gal who said it was her job to handle all of this for me.... and she was so sorry for the hoops I've been having to jump through to secure medicine for my daughter. I finally thought we were getting somewhere (could have kissed her through the phone), only to be greeted with an email the next day...that she was no longer legally able to help me, due to our income. She sent me a long list of links to try on my own, and unfortunately, all of them are the same. They are there to help low income families.... and since we are not classified as that.... they can't help. I can honestly say, I've never felt more defeated in my life. Frustrated. Sometimes angry. There's nothing "fair" about it.... but it is what it is. I have a few more leads, and am waiting on some return calls from several patient assistance programs. Will you pray for a miracle with me? My hope in myself being able to beg or plea our way in to some price reduction is dwindling.... BUT my hope in the ONE I know can fix this is as strong as ever. I have a true peace that Kambree will continue to have the medicine she needs each month, that God will continue to provide as he has so far.... and I'm literally counting down the days for the enrollment period to open on an additional insurance plan, so we can put the financial stresses of this disease behind us!
The Lord continues to drop little doses of perspective in our lives. :) The day after we received Kambree's diagnosis... our kids got in to some HOT PINK acrylic paint.... and spilled it on the carpet near our entry way, you know in a perfectly discreet place! ;) I had been running errands, and came home to the mess. I was quite surprised to find my husband, as cool as a cucumber... and he said... "It's carpet!" We actually stood there and chuckled for a moment. Our problems were far larger than any material things...how quickly our perspectives can change. That pink stain is still there. I'm sure there is some Pinterest trick out there, or an amazing carpet cleaning business in town that could remove it for us, but for now, it is serving as a great reminder to us about what the important things are in life. The important things aren't things..... certainly not carpet. It's the PEOPLE in our lives.... and we are filled with many amazing and supportive friends and family who reach out to us daily! It's the MOMENTS in our lives..... and we have many that are spent laughing, and loving, and making memories. It's the FAITH and HOPE in our lives, that helps us keep on going, keep on loving, keep on living. It's our HEAVENLY FATHER reminding us that he loves her more. That his plans are to prosper her.... and to give her a bright future....and it's the HOLY SPIRIT, living inside us, stirring up scripture I memorized as a child....to bring me comfort, many, many years later.
Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge him, and he will direct your path. Proverbs 3:5-6
I'm trusting... He's directing! :)
My sweet husband surprised me with a slideshow he put together. I'm a sucker for pictures....and pictures set to music.... is just kind of the ultimate! ;) If you have a few minutes.... check out "77 Days in 3 Minutes."
https://www.youtube.com/watch?v=bjYRroCBKcA
As always...thank you for following The Whole White World!
XOXO
I'm generally a very positive person, so when those feelings that aren't so positive start creeping in, I don't like the me I see. Those moments when I hear other people's problems, and find myself longing for my life to return to a time, when my problems were similarly insignificant. Those fleeting moments when I let myself feel sorry for myself for what my daily grind looks like--and how much of our family time, is eaten up with treatments. Let me be specific. In the last 77 days, we've spent approximately 154 hours doing treatments. That is over 6 complete days of my daughter's life, that have been spent hooked up to machines---I don't even want to think about what this will equate to after a year, or 5 or 10. Ugh! Now I'm wallowing. Double Ugh!
The positive news.... no, the GREAT news... is that those treatments are working! Since I've last blogged, we had a return visit to Children's Mercy, and once again, they were thrilled with her progress. Her lung infections have continued to stay away, and her pulmonary function test was even higher! This was such great news..... and further confirmation to us, that our sweet baby is a strong girl, and in many ways, a healthy girl. Things could be much worse. Much, much worse. And so despite, the frustrations of adapting to our new routine, the rushed mornings, and evening fun cut short... we really are thankful for the treatments. They are something tangible we can do, twice a day, to fight this nasty disease. How can we not be thankful for that? We do our best to make the most of the time she is doing treatments.... sit and snuggle with a show...sometimes even with Papa D.
We make rainbow loom bracelets for friends and family. We've played some pretty mean games of tic tac toe.... and worked a few puzzles also. So MAYBE, the better outlook on these treatments is that they have helped us to chisel out time in our busy lives.... to love on her... to give her special attention...and to make memories! THAT outlook feels much better!
More happy news in our world. My son has made INCREDIBLE progress this summer! He is truly amazing us daily. Things we've watched him struggle to do for years now, are starting to come along. He is asking me to "do school" with him daily.... and he is soaking up so much! He is such a joy! All boy... a lot of work.... but such a joy!
Our 3 year old, Kreslee, hasn't gotten much love on here, but let me tell you... she is a HOOT! Keeps us laughing every single day....and you pretty much haven't lived if you have heard her say, "Dat's Wei-wd". From the second she wakes up, til the time she crashes, she is the life of the party. A big, big presence in this family. This pic pretty much sums her personality up! She'd wear those red boots 24/7 if she had her way!
Really....we are truly, truly blessed. Our children bring us such joy.....and it is our prayer and desire as we raise them, that they will bring joy to other people all throughout their lives. That they will be respectful. Think of others first....and most of all LOVE others.... as Christ loves us--despite all of our imperfections!
This blog I'm going to talk about some big numbers.....the first one.. is 25,000. That's the number of views this blog has had. Mind blowing really. If even just a portion of those views, have come with prayers lifted up on our behalf, it comes as no surprise to me that Kambree's progress has been so remarkable thus far! With that....here I am again... asking for help with a BIG prayer need....involving some BIG NUMBERS. :/
As I've said before, at this time, we have no prescription coverage for Kambree. Great medical coverage otherwise (our insurance paid 100% of her $15,000 vest--praise GOD)..... just nothing for prescriptions. The costs for her needed prescriptions are over $3200.00 each month. If she ends up needing the TOBI again, our month total will be over $10,000.00. I have spent hours and hours on the phone with different "patient assistance" programs.... tried every number I can find or have been given, but the outcome is always the same. We make too much money for assistance. They have a flat dollar amount drawn, that you can't exceed.... and I have yet to find anyone that will make an exception, and factor in the COST of the prescription in to the equation. I received a call last week that left me very hopeful..... a gal who said it was her job to handle all of this for me.... and she was so sorry for the hoops I've been having to jump through to secure medicine for my daughter. I finally thought we were getting somewhere (could have kissed her through the phone), only to be greeted with an email the next day...that she was no longer legally able to help me, due to our income. She sent me a long list of links to try on my own, and unfortunately, all of them are the same. They are there to help low income families.... and since we are not classified as that.... they can't help. I can honestly say, I've never felt more defeated in my life. Frustrated. Sometimes angry. There's nothing "fair" about it.... but it is what it is. I have a few more leads, and am waiting on some return calls from several patient assistance programs. Will you pray for a miracle with me? My hope in myself being able to beg or plea our way in to some price reduction is dwindling.... BUT my hope in the ONE I know can fix this is as strong as ever. I have a true peace that Kambree will continue to have the medicine she needs each month, that God will continue to provide as he has so far.... and I'm literally counting down the days for the enrollment period to open on an additional insurance plan, so we can put the financial stresses of this disease behind us!
The Lord continues to drop little doses of perspective in our lives. :) The day after we received Kambree's diagnosis... our kids got in to some HOT PINK acrylic paint.... and spilled it on the carpet near our entry way, you know in a perfectly discreet place! ;) I had been running errands, and came home to the mess. I was quite surprised to find my husband, as cool as a cucumber... and he said... "It's carpet!" We actually stood there and chuckled for a moment. Our problems were far larger than any material things...how quickly our perspectives can change. That pink stain is still there. I'm sure there is some Pinterest trick out there, or an amazing carpet cleaning business in town that could remove it for us, but for now, it is serving as a great reminder to us about what the important things are in life. The important things aren't things..... certainly not carpet. It's the PEOPLE in our lives.... and we are filled with many amazing and supportive friends and family who reach out to us daily! It's the MOMENTS in our lives..... and we have many that are spent laughing, and loving, and making memories. It's the FAITH and HOPE in our lives, that helps us keep on going, keep on loving, keep on living. It's our HEAVENLY FATHER reminding us that he loves her more. That his plans are to prosper her.... and to give her a bright future....and it's the HOLY SPIRIT, living inside us, stirring up scripture I memorized as a child....to bring me comfort, many, many years later.
Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge him, and he will direct your path. Proverbs 3:5-6
I'm trusting... He's directing! :)
My sweet husband surprised me with a slideshow he put together. I'm a sucker for pictures....and pictures set to music.... is just kind of the ultimate! ;) If you have a few minutes.... check out "77 Days in 3 Minutes."
https://www.youtube.com/watch?v=bjYRroCBKcA
As always...thank you for following The Whole White World!
XOXO
Monday, June 16, 2014
New Perspective
One year ago, we went out to dinner to celebrate my mother-in-laws birthday. At that dinner, she had me read aloud a poem..... the poem was an invitation for us all to join her in the Bahamas for her following year's birthday. (she's pretty awesome)
It's amazing how quickly time can fly. When we first learned of our trip that night... we had no autism diagnosis for my son.... his asthma/CF worries had not yet begun..... and we would have told you our then 6 year old, was the healthiest child on the planet. That's a lot of changes... in ONE year.
It's been a whirlwind, to say the least..... but the week away was perfectly timed. We had some concerns about whether or not we would be able to go, but once the word came that Kambree's infections had cleared, and our family back home didn't bat an eye at taking over all of her care while we were away (they're pretty darn awesome too).... we decided we could really use the week away.
It was pretty wonderful. Waking up to this view.
I got some very good advice from an old friend shortly after her diagnosis....he warned us of how stressful a child's illness can be on a marriage....and urged us to really guard our marriage.....take time for each other.... don't let this disease define your lives...don't let it destroy other parts of your life.
We have certainly seen the time constraint.... and the pull in different directions. We laugh about our tag team efforts... but really, staying connected takes a lot of work. Making sure we aren't just two ships passing... who are meeting all of our children's needs.... all the while losing who we are as a couple. We are very mindful of this... and are as in love today as the day we said "I do", regardless of all life has thrown at us.... and for that, I am truly thankful!
Our children NEED us to be in love. The security that brings a child.... the peace of mind that brings a child...is priceless. When times are rushed and chaotic.... and we feel inclined to be barky.... or snarky...we have to remember that how we interact with each other, as parents, says so much to those little eyes and ears who are always watching and listening. We see them beam and giggle when we flirt with each other--or sneak a quick kiss (they're smiling through the ewwwwws).... and I know, our tense interactions with each other, crushes their spirits and adds stress on them as well. This parenting thing ain't easy... but few things that are great are!!
I didn't intend to go into all of that.... guess it was on my mind. I needed the reminder...maybe some of you did to?
So now, 6 weeks in to this journey.... I've got a lot on my mind...you're shocked, right? At this point, I feel like the nature of Cystic Fibrosis, has exasperated several qualities in me that I've never liked.
First.... my lack of organization. Mentally I do a great job of keeping myself organized... I don't miss appointments or lose things... BUT my life, in general lacks organization. CF is going to force me to be more organized. All of the equipment for therapies needed a "home"---and I am happy to report I have a cleaned out cabinet that is our CF hub. We are not tripping on chords, or living with counters covered in medicine. It gets put away twice a day...... except for the vest. That is so large, we have yet to determine exactly what we will do with that. For now, it's hanging out in the kitchen by the table.
Time management! Never been a strong point of mine.... and this has rocked our worlds in the biggest way. Since we replaced the "pickle" for airway clearance method, with the vest.... the treatments are taking right at an hour each morning.....and each night. I realize that may not sound like much.... but we STILL do not have this down. Mornings are crazy getting Kenton to therapies....or other various things.... so stopping for an hour to get her treatment done has made things interesting to say the least. Her second treatments are going late in to the night many nights....because dinner, down time with daddy, and baths will usually run us to 9:00.... and then we still have an hour long treatment to get in. If we have plans of any sort, it gets late very quickly. The fun doesn't stop there though... we need to wash the equipment after each use....and sterilize it each night. There is a constant "to-do" list running through my head.
So my FAITH isn't the only thing that will be improved through this journey. We will no doubt grow personally and improve our weaknesses. I'm sure someday soon, this will become completely second nature to us.... we will find routines that work....and hopefully see other areas in our lives improved as well.
So here's the BIGGIE that it has exposed. My incessant worrying. I'm the girl that can figure out any bizarre scenario of how life COULD go wrong... and then worry about it. I'm the girl that checks to see if her alarm clock is set for AM instead of PM-- 2 or 3 times.... A NIGHT. I'm the girl that won't let her 7 year old play in the front yard, unless I am standing outside with her. I know it's wrong. I know we are to worry about nothing, and pray about everything. I've tried to stop... and I think, over time, that this diagnosis is going to teach me to live in the moment.....because worry will destroy me if I don't control it.... I will be overtaken with fear if I allow myself to worry about how all of this ends. I will learn to focus on the present and relish our happy times...if I don't.... I will miss out on the happy times---her healthiest times. I will learn to live in the moment because I have a beautiful daughter that is going to HAVE to live life one day at a time.... one breath at a time. I absolutely dread the day, that she realizes that this disease will likely take her life--and that Cystic Fibrosis doesn't just mean she has "special lungs". I dread the day her questions progress from, "Will I always have Cystic Fibrosis?" to "Will I die from Cystic Fibrosis?"----worse yet, "How do you die from Cystic Fibrosis?" These are questions I WISH I didn't know the answer to. I am already praying now for the right words to come in those moments...and praying for her sweet spirit to have an amazing inner strength and a will to defy the odds..... and the sweetest appreciation for every day of life that she is granted. Shouldn't we all live that way?!
I want her to live life to the fullest and never be hindered by fear or worry. I want her to dream about being a teacher or recording artist.... a wife and some day a mommy.... without the black cloud of "what ifs" covering it all up.
We've been served quite a few lemons here lately... but darn it.... we are going to make lemonade...and it's going to taste as good a Mama D's!!
I had a revelation right before we left town....a nice positive dose of perspective---that I will be clinging to in every high-stress, hectic moment. Our daughter has a nasty disease. A nasty, time-consuming disease. A nasty, time-consuming, and costly disease.... BUT...she has a disease that comes with a plan of attack! Every expensive prescription, and hour long treatment, is improving her quality of life--it's helping to fight off sticky mucous that wants to destroy the organs in her body...we got a heartbreaking diagnosis.... but we get to FIGHT it. There are many, many, many diseases out there, that DON'T come with a plan of attack. There is no path to fight it....or delay it.... and you sit by and helplessly watch your loved ones suffer.
So tonight... I am thankful for never-ending treatments.... and monthly prescriptions that cost the same as a nice used car. I'm thankful for the hope that they bring to her future... to our family's future. I'm thankful for the opportunity to be a voice for Cystic Fibrosis...and to raise awareness for the cause. I'm thankful for the opportunity to raise funds to help find a cure....and mostly thankful to serve a God who hears our prayers......and he'll be getting many from me.... asking him to wow this world....and unveil a cure.
Pretty sure that Kambree has a Grandpa Kent and four Great-Grandparents up in heaven---whispering in Jesus' ear... petitioning for the same!
As always.... love you ALL! Thank you for following our journey.
It's amazing how quickly time can fly. When we first learned of our trip that night... we had no autism diagnosis for my son.... his asthma/CF worries had not yet begun..... and we would have told you our then 6 year old, was the healthiest child on the planet. That's a lot of changes... in ONE year.
It's been a whirlwind, to say the least..... but the week away was perfectly timed. We had some concerns about whether or not we would be able to go, but once the word came that Kambree's infections had cleared, and our family back home didn't bat an eye at taking over all of her care while we were away (they're pretty darn awesome too).... we decided we could really use the week away.
It was pretty wonderful. Waking up to this view.
Being silly on the beaches together.
And soaking in some of God's most amazing handiwork.
I got some very good advice from an old friend shortly after her diagnosis....he warned us of how stressful a child's illness can be on a marriage....and urged us to really guard our marriage.....take time for each other.... don't let this disease define your lives...don't let it destroy other parts of your life.
We have certainly seen the time constraint.... and the pull in different directions. We laugh about our tag team efforts... but really, staying connected takes a lot of work. Making sure we aren't just two ships passing... who are meeting all of our children's needs.... all the while losing who we are as a couple. We are very mindful of this... and are as in love today as the day we said "I do", regardless of all life has thrown at us.... and for that, I am truly thankful!
Our children NEED us to be in love. The security that brings a child.... the peace of mind that brings a child...is priceless. When times are rushed and chaotic.... and we feel inclined to be barky.... or snarky...we have to remember that how we interact with each other, as parents, says so much to those little eyes and ears who are always watching and listening. We see them beam and giggle when we flirt with each other--or sneak a quick kiss (they're smiling through the ewwwwws).... and I know, our tense interactions with each other, crushes their spirits and adds stress on them as well. This parenting thing ain't easy... but few things that are great are!!
I didn't intend to go into all of that.... guess it was on my mind. I needed the reminder...maybe some of you did to?
So now, 6 weeks in to this journey.... I've got a lot on my mind...you're shocked, right? At this point, I feel like the nature of Cystic Fibrosis, has exasperated several qualities in me that I've never liked.
First.... my lack of organization. Mentally I do a great job of keeping myself organized... I don't miss appointments or lose things... BUT my life, in general lacks organization. CF is going to force me to be more organized. All of the equipment for therapies needed a "home"---and I am happy to report I have a cleaned out cabinet that is our CF hub. We are not tripping on chords, or living with counters covered in medicine. It gets put away twice a day...... except for the vest. That is so large, we have yet to determine exactly what we will do with that. For now, it's hanging out in the kitchen by the table.
Time management! Never been a strong point of mine.... and this has rocked our worlds in the biggest way. Since we replaced the "pickle" for airway clearance method, with the vest.... the treatments are taking right at an hour each morning.....and each night. I realize that may not sound like much.... but we STILL do not have this down. Mornings are crazy getting Kenton to therapies....or other various things.... so stopping for an hour to get her treatment done has made things interesting to say the least. Her second treatments are going late in to the night many nights....because dinner, down time with daddy, and baths will usually run us to 9:00.... and then we still have an hour long treatment to get in. If we have plans of any sort, it gets late very quickly. The fun doesn't stop there though... we need to wash the equipment after each use....and sterilize it each night. There is a constant "to-do" list running through my head.
So my FAITH isn't the only thing that will be improved through this journey. We will no doubt grow personally and improve our weaknesses. I'm sure someday soon, this will become completely second nature to us.... we will find routines that work....and hopefully see other areas in our lives improved as well.
So here's the BIGGIE that it has exposed. My incessant worrying. I'm the girl that can figure out any bizarre scenario of how life COULD go wrong... and then worry about it. I'm the girl that checks to see if her alarm clock is set for AM instead of PM-- 2 or 3 times.... A NIGHT. I'm the girl that won't let her 7 year old play in the front yard, unless I am standing outside with her. I know it's wrong. I know we are to worry about nothing, and pray about everything. I've tried to stop... and I think, over time, that this diagnosis is going to teach me to live in the moment.....because worry will destroy me if I don't control it.... I will be overtaken with fear if I allow myself to worry about how all of this ends. I will learn to focus on the present and relish our happy times...if I don't.... I will miss out on the happy times---her healthiest times. I will learn to live in the moment because I have a beautiful daughter that is going to HAVE to live life one day at a time.... one breath at a time. I absolutely dread the day, that she realizes that this disease will likely take her life--and that Cystic Fibrosis doesn't just mean she has "special lungs". I dread the day her questions progress from, "Will I always have Cystic Fibrosis?" to "Will I die from Cystic Fibrosis?"----worse yet, "How do you die from Cystic Fibrosis?" These are questions I WISH I didn't know the answer to. I am already praying now for the right words to come in those moments...and praying for her sweet spirit to have an amazing inner strength and a will to defy the odds..... and the sweetest appreciation for every day of life that she is granted. Shouldn't we all live that way?!
I want her to live life to the fullest and never be hindered by fear or worry. I want her to dream about being a teacher or recording artist.... a wife and some day a mommy.... without the black cloud of "what ifs" covering it all up.
We've been served quite a few lemons here lately... but darn it.... we are going to make lemonade...and it's going to taste as good a Mama D's!!
I had a revelation right before we left town....a nice positive dose of perspective---that I will be clinging to in every high-stress, hectic moment. Our daughter has a nasty disease. A nasty, time-consuming disease. A nasty, time-consuming, and costly disease.... BUT...she has a disease that comes with a plan of attack! Every expensive prescription, and hour long treatment, is improving her quality of life--it's helping to fight off sticky mucous that wants to destroy the organs in her body...we got a heartbreaking diagnosis.... but we get to FIGHT it. There are many, many, many diseases out there, that DON'T come with a plan of attack. There is no path to fight it....or delay it.... and you sit by and helplessly watch your loved ones suffer.
So tonight... I am thankful for never-ending treatments.... and monthly prescriptions that cost the same as a nice used car. I'm thankful for the hope that they bring to her future... to our family's future. I'm thankful for the opportunity to be a voice for Cystic Fibrosis...and to raise awareness for the cause. I'm thankful for the opportunity to raise funds to help find a cure....and mostly thankful to serve a God who hears our prayers......and he'll be getting many from me.... asking him to wow this world....and unveil a cure.
Pretty sure that Kambree has a Grandpa Kent and four Great-Grandparents up in heaven---whispering in Jesus' ear... petitioning for the same!
As always.... love you ALL! Thank you for following our journey.
(Tic Tac Toe with mom, makes treatments so much better!)
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