So once again, yes, I let a whole bunch of time go by without writing. Once again, the incredible chaos of this roller coaster ride of life filled my hours, days and weeks. But I'm thankful for that time. The past few weeks have been some of the most challenging, yet incredible weeks of seeing God's fingerprints. So buckle up and hang on as I fill you in on the ride...
So I left off last time filling you in on our California trip. We arrived home to jump right back in with both feet running to our schedules of doctors and specialists and loads of other commitments with our other 3 kids. I have to pause here (in my scattered thoughts... it'll make sense later. promise!) and tell you about this amazing constant I have in my life. Every week, Wednesday afternoon, I meet with this amazing group of girls to share life, pray, and dig into the Bible. It's time that's precious, and I've grown to love each of the girls with my whole heart. They are the most sacrificial, genuine, raw, real, loving, fun girls who love Jesus too, and we're all walking this journey called life together. One of my dear friends, who has listened to me vent and cry over this journey with Kai more than any one person should ever have to do, decided about 5 months ago that she was going to organize 1 meal a month for our family from our circle of girls. Can I just tell you how AMAZING it is to have one meal every month brought piping hot and SO yummy to your door?! Honestly, it's an incredible blessing to have just one night that I don't have to stress making my kids dinner after our wild day of work, school, therapies, doctor visits, mom duties, and everything else in between. They have also challenged me in some incredible ways. We've been studying the death and resurrection of Jesus, and all the incredible suffering He went thru the past few weeks leading up to Easter. I know the story of the cross. I've heard it a million times. But this time, it hit me hard. I ask a lot of "why" questions right now. There's just some things I don't understand. And I don't think for a minute that those "why" questions are wrong. But I've come to see just a tiny glimpse of Jesus' sufferings, and how He went thru it all so that He could 110% say with total and complete accuracy that He understood and He'd been there. I'll never be able to fully understand, but I do know He felt alone. He felt abandoned. He felt rejected. He felt the pain, both physical and emotional, of losing ones He loved. He felt betrayed. There wasn't a feeling He didn't personally experience. So He gets it. He knows my pain, and it hurts Him too.
Those were significant truths I needed to see these past few weeks, because quite honestly, I was at the end of my rope and beyond exhausted and burned out. I am a pretty raw person, and I hold nothing back in saying that I was really struggling to believe that a good God would allow a mother to feel such pain as she watched her child suffer, with no known treatments, and no known cure to a disease that there's hardly anything known about at all. And then we followed up the study of Easter with a new study we're working thru now... it's called "One Thousand Gifts... a dare to live fully right where you are" by Ann Voskamp. I read the book a while ago, but honestly it was pretty deep for me and hard for me to grasp (I'm not a very deep reader... not enough attention span for reading!). But this time we're doing the study. And I know it's what God had in mind just for me to help to change my attitude of discouragement. It's on grace, thanksgiving, and joy... Eucharisteo. So I said this would make sense... all my garble... and here's why I open with this. I'm working to change my focus to looking at the incredible gifts I already have and being thankful for them in the moment, not fearing the future. That's much easier said than done, and no, I haven't come close to mastering it, but days like today, I have to hold on to things I'm thankful for, so I'll start this post with some incredible thanksgivings of God's fingerprints the past few weeks...
I mentioned the meals. Seriously, and fellow moms can appreciate this, they are SUCH a blessing. Due to a commitment I made a year ago to help coach what has grown to be an incredible program to help women complete their very first triathlon, my work schedule suddenly quadrupled, not to mention the client load I already had (for those who don't know, I work at the Y as a personal trainer, swim coach, and USA certified triathlon coach... my passion!). I'm incredibly thankful for the extra income it's provided for our family and for the medical bills, but it definitely added a big stress to my already wild schedule, so meals have been HUGE! Kevin works incredibly hard to make ends meet, but because of the nature of his job, he also travels most weeks for work, so evenings are overwhelmingly tough sometimes. Oh yeah, even pizza delivered to us after a WILD week by a dear friend who knew I was struggling!
Then there have been these INCREDIBLE blessings of encouragement letters, text messages, Facebook messages, phone calls, and handwritten notes arriving on just the toughest days I've needed them. Some have even included incredible sacrifices of generosity that I couldn't have in my wildest imaginations asked God to provide... gift certificates for meals, gift cards for iTunes to get Kai something new to do while he's visiting so many doctors, and AMAZING monetary gifts to help with our ever growing medical bills! Even things like my kids getting "gifted" the season of soccer so that they could all play something they love but that we just didn't have the money to be able to do this season if it weren't for a dear friend who's walked a tough road of her own and understands first hand the stress of growing medical bills so provided the season to my 3 more than thrilled little soccer junkies! And Hope Reigns, a free horseback riding therapy that has been an incredible blessing to Kai! Wow... speechless. And honestly, each one arrived on some of THE toughest emotional days for me, so such a little whisper of my Father letting me know that He knows and He cares.
Then there has been incredible friends who have helped research and contact agencies and foundations to try to help me figure out what things are worth chasing and what's not to try to best facilitate the needs that Kai has both now, and will have in the future, especially with expenses looming of moving (finding a more accessible home for Kai's growing needs), supplies he will eventually most likely need (walkers, wheelchairs, ramps, etc), and even friends helping me with creative ways to do therapies with Kai at home since I get burnt out with it on a daily basis. Again... His fingerprints... that precious time I didn't have to research was sacrificed and gifted to me thru someone else's help.
And then there's the INCREDIBLE honor given to Kai as he was spotlighted by our Wake County school board, and was presented with the Wake County Spotlight on Student Award for 2012-2013. "This award is only given to individuals who go the extra mile and expend that extra energy to achieve success..." (written by the school superintendent). Kai was honored at the Board of Education meeting right after we got to celebrate his 9th birthday! His teacher had nominated him without us even knowing, and he was chosen by the school board out of kids 3rd - 12th grade to be honored for his hard work. It was an emotional evening, full of proud tears as my boy was recognized with a speech given about his situation, and how he had been nothing short of an over-comer and a fighter with an incredible attitude and determined spirit. Things like this make a mama proud, and overflowing with thanks that people DO indeed recognize the struggle and the fight my little man goes thru daily. Fingerprints...
(above- Kai with the superintendent... below- his award!)
(above- Kai with his amazing principal and assistant principal... below- Kai with his INCREDIBLE teacher)
So I know, I know ... you're tired of my list and my pictures :) And yes, I intentionally left today's doctors visit to the end because I'm still working on processing it all and finding the joy in today. So today was a visit that has been scheduled since January 4, the date of Kai's initial diagnosis. It was a BIG one. We met with THE head of the MDA (Muscular Dystrophy Association) clinic. I know, you're already asking why the MDA when he doesn't have Muscular Dystrophy. The nutshell is that the MDA was names ages ago when all they saw, treated and helped was MD patients. But they've broadened their umbrella now, and now they see a few other diseases, including a handful of types of Ataxia. (remember, Kai has Ataxia with Oculomotor Apraxia Type 2... aka AOA2). We knew going into this appointment that the MDA didn't recognize AOA2 as one of their diseases under their umbrella of coverage, but our prayer was, and still is, that they would accept Kai as an "exception" to the rule since his disease is so incredibly rare. IF they were to accept Kai as a patient on the MDA approved list, then as Kai needed "supplies" (walker, ramps. wheelchairs, etc), the MDA would provide those to Kai to "borrow" at no charge. HUGE. Those things aren't cheap in case you were wondering! :) So... today Kai and I went and met with Dr. Smith, THE head of the MDA clinic at Duke. He was wonderful. He had obviously done his homework and researched a lot about Kai, his history, his tests, his other doctors... everything. You name it, he had researched it. He was incredibly personable too, which if you've visited any specialists, you know this is an incredibly rare gift as most of them have all brains and zero bedside manner. He was genuine and cared and listened and answered in terms I could understand. Amazing. But he couldn't approve adding Kai to the MDA approved list. Apparently the MDA has had a significant cut in their budget and grant money available, so they've had to crack down hard, and right now, he has no power to add Kai to their approved list. Ugh. So yes, this is incredible frustrating and discouraging, as it leaves an overwhelming future of needs ahead, but I also know that God is bigger than this. He's provided up until now, so I know somehow and in some way He will continue to provide. I'm also incredibly thankful for Dr. Smith and his heart, as he's agreed to keep Kai on as one of his patients, even though he's not an MDA approved one. This is HUGE! Dr. Smith is a highly specialized Neuro-muscular specialist, so being one of his patients will help us be able to eliminate at least 3 of Kai's other doctors as we can get all 3 of them in just 1 Dr. Smith!
So... tonight I'm working hard to focus on the gifts I have. I won't pretend I'm good at it, but I will say I'm trying, and some days are better than others, and some moments better than others... for tonight, I'm thankful for His fingerprints.
Kai celebrated his 9th birthday with some awesome friends... then an overnight beach trip with his siblings (thanks to some freebie nights earned bc of Kevin's constant travel)!