God Kisses (for a warrior son and worn out mama)

July 16, 2015

So yes, I do know it's been a long time since I last blogged.  Not because life slowed, but more that it's been INSANE busy and my mind hit what I guess you could call a "writers block".  I struggled to put into words the thoughts and emotions racing thru my head every minute of every day.  A lot has happened since April... I have primary physical custody of my 4 kiddos, I'm working 3 jobs, I now have 2 preteens (Kai turned 11!), and my kids have finished one school year and started up another!  Yep... gotta love year round schools with their 4 day break between grades!  Kalia is now at the top of her school... grade 8 (terrifying thought to think I have a high schooler next year!).  Kai moved from the top of his school, to the beginning of a new chapter... grade 6!  Yep... 2 middle schoolers in the same house, and I'll be lucky to finish this school year without a full head of platinum hair ;)  Peyton is now in grade 4, and Thayne moved right on up to 1st grade.  Talk about wild after-school adventures of homework!  And me... well yes, along with being a full-time mom of 4 incredible monkeys, I've also now started a new job coaching and working for a local triathlon store.  I LOVE it!  I'm still working my other 2 jobs as well, so life is definitely lacking many quiet moments, but I'm learning to find joy in the chaos.  And as those of you who follow me on Facebook may already know... I've applied to nursing school!!!  I can't wait!  This is a lifelong dream of mine that I've finally stepped up to begin to fulfill.  I'll be cutting back on work and doing a mix of classes online and at school, so it'll be a juggling act, but I'm excited to finally have a career path I can use to also help Kai as his challenges progress.
 

So speaking of Kai... As many of you know by now, his disease has continued to present increasing challenges for his ability to get thru each day without extreme fatigue.  Although there's still minimal research about his disease, there IS 2 doctors in the United States who research and have a fairly decent knowledge of his disease and what I can expect as I help him function as best as possible thru each day.  One of those specialists is out at UCLA in California, and I took him out there a few years ago shortly after he was first diagnosed.  The other of those doctors is at Johns Hopkins, and I took him there as well.  So this past weekend, I made the trek up to Baltimore, Maryland, to see Dr. Crawford again and try to gain a bit more wisdom and understanding of his ever progressing disease.  Dr. Crawford is one of the leading Ataxia specialists in the world!  After waiting 3 hours, we were finally greeted by a warm smile and sincere apology by Dr. Crawford himself.  In a nutshell, he spent the next hour and a half talking with both Kai and myself, listening, answering questions, doing functional tests, and sharing his knowledge and wisdom.  He was a wealth of knowledge that I cannot even begin to put into words!  I wish I could explain how comforting it is to talk with someone who understands the struggles Kai faces because he knows the depths of his disease, and the struggles and challenges it presents.  I must admit, I drove there wrestling with whether or not traveling 6+ hours to see a doctor was really worth it, considering every other doctor I take my little fighter to looks at him, writes notes, and never has any form of advice because they know less than I do about my precious Kai's disease.  To finally sit one on one with a specialist has spent his life researching and documenting other patients who struggle with various forms of Ataxia as well... it was almost as though it was comforting.  Rabbit trail here... but I've often said walking thru the past 3 years of a hellacious (is that even a word?!) divorce, it's incredibly comforting to just spend an hour in the presence of someone who's walked a parallel road to mine and fully understands the pain and agony of the betrayal and abuse I walked thru.  They just get it in a totally different way that you can't put into words, and I'm SO thankful for my precious friend God has put in my life for that role.  It's a place where I've often said God uses the pain they walked thru for His glory, to reach out and hold a broken girl like me walking thru the nightmare they've already lived.  So back to the doctor... it's like that with this specialist.  I didn't have to start from scratch with him.  He got it.  He watched and listened and answered my hundreds of questions.  He talked to Kai.  He asked Kai for his thoughts and opinions.  I LOVED that!  Kai felt valued as a patient rather than a science experiment that everyone usually examines and takes notes on, but then talks to me as if he's not even in the room.

The visit was an answer to prayers.  A God kiss.  Dr Crawford affirmed me like no other doctor has done. See, as a mom, there's days I ask a lot of questions to God.   "Why did You choose my son for this battle?  Why me as his mom?  And walking this alone without the support of a spouse like You intended it to be?  Why, God?  Why don't You just heal my boy?  How much longer do You think I can stay strong?  How am I supposed to work multiple jobs in order to make ends meet as a single mom of 4 precious monkeys who depend on me daily for their every need, yet I have this son who requires more of me than I even have for 1 child, let alone 4?  Do You really care God?  Am I really fit to be the mom of this little dude who depends on me daily for everything... doctors, therapies, school advocate, meals, specialists, cook, laundry, chauffeur, comforter, and his constant stability right now?  I'm broken and beat down God.  Don't you see that?  Don't you get the pain of betrayal and hurt that I'm already trying to process, let alone watching my child struggle with the simple tasks of every day living that I take for granted?  Do you hear me God?  Are you really listening?"

I've learned, and am still learning, that God often answers in unexpected ways.  He provides in miraculous ways for my needs and the daily needs of my babies.  He encourages me thru the precious time spent with friends loving enough to understand my exhaustion and inability to get out because of my responsibility to be with my monkeys every day and night, so they give up their evening to come sit with me and love me right in my own home.  He provides cards, letters, texts, phone calls, and e-mails from just the right family and/or friends at just the right time to encourage my weary heart.  He provides unexpected meals from friends who listen to His gentle whisper to her heart to "throw His girl a bone" (yep... that was her words! lol) and provide bags of groceries and a pizza treat for my kids on a night when this mama had just sat at the table with her kids that very morning and shed tears and prayed that God would provide dinner that night before their swim meet because this mama didn't have a single dollar to put it on the table.  (talk about a miracle that my children will never forget!  God provides!)  And in this doctor visit, God provided again.  Dr. Crawford looked at this weary and beat down mama, as my kids did somersaults off his exam table and blew up his gloves into balloons which they then proceeded to make fart noises with as they let out the air, and said a few sentences that meant more to me than anything else... "Heather, you as his mom know more than any doctor or specialist or therapist out there.  This is YOUR child and only you get to see him day in and day out.  YOU have a voice.  He's confined by his disease, but he's given freedom by you as his mom helping find modalities that can allow him to be "normal" in spite of his struggles and minimize his fatigue."  He then looked at Kai and said "You are confined by your disease, but not defined by it.  Your wheelchair will give you freedom!  You can use it and save your energy to run and play like you want to with your siblings and friends."  Then he got to the best part... "Kai, you do not have to wear your AFO or SMO braces, or your DMO body suit for the entire next year!  You don't have to take your meds for the next year!  We're going to see how you do, and if it progresses quickly, I reserve the right to change my mind on that, but for now, I want you to be free using your chair.  I want you to keep swimming, because it's the best thing for you.  And I want you to keep playing soccer and jumping on the trampoline and riding your bike and doing  your rock climbing.  Those are the best therapies you can do!"

I'm pretty sure Kai was fighting back the tears of joy, just like his mama... although he did a much better job of fighting them back, because they rolled down my cheeks. :)  No, he hasn't improved.  In fact his disease has progressed significantly.  I'm working to figure out a way to buy him the motorized chair (saying electric chair doesn't sound very good!  lol) that he wants... it looks just like a motorcycle, but is a pimped out wheelchair!  But something only an Ataxia specialist would recognize, is that a patient with Ataxia like Kai's (he has Ataxia with Oculomotor Apraxia Type 2 for those new to my blog... and although there's hardly any research or info available on his AOA2, it very closely resembles Friedreich's Ataxia, which there is loads of info on)... these patients need to allow their body to be unstable and unbalanced and they need to be able to figure out ways to accommodate, because otherwise they lose muscle tone in those very muscles used to stabilize them, causing their disease to progress even quicker.

So Kai is on cloud 9 right now!  No braces, no suit, no meds!  Only God knows for how long, but for the first time in 6 years now, I don't have to help him get ready in the morning before school.  You have no idea how "new" this feels to me!  Again... a little God kiss as this mama was feeling worn thin getting 4 kids up and ready and out the door to school 5 days a week every single week on my own!

So the journey continues... and the challenges continue... but so does HIS faithfulness.
And so do His kisses.