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!)
Deanna,
ReplyDeleteYour blogs are awesome and so informative! Very appreciated!
Love you all, Aunt Nee