As I sit down to write this, I feel I should probably warn you again that I don't believe in living behind blinders anymore, so I'm honest. I'm doing my best to just be real. To let you in behind the scenes in our journey. So if that offends you and you prefer to just see what you see on the outside, please feel free to close this tab and not read further. Trust me, no judgement from me!
Have you ever looked at a piece of pottery and been awe struck at it's beauty? The intricate ways the piece flows. The uniqueness of each and every piece and how no two hand crafted pieces are ever exactly alike. Back in my younger days, I fell in love with pottery. I had this amazing teacher in high school, Mr. Fender, who had a passion for pottery, and was incredibly talented. He taught me to throw cups, vases, teapots, plates... you name it, he could do it and had a skill like none other. I was never an expert by any means, but I sure loved it. It would fascinate me how this dirty, messy, lump of clay that I would grab from my clay bag, would be thrown on the wheel and then pressed and pulled, smashed and drawn up, over and over again as the wheel spun around and around at a constant speed, making sure to get all the air bubbles out.
So in all that pottery garble... I wish I could just show you the masterpiece. The work of art. The finished piece. But unfortunately, I can't. I'm in that wet and slimy lump of clay phase. So that's what you'll see... the dirty, messy me today. And I'm holding on to the promise that HE makes beauty from our ashes (or in my case, my lump of clay!).
So if you haven't totally checked out yet, and you still want an update on this lump of clay :) here's the latest...
Last week was a whirlwind. It started with a doctor's appt where I was handed a GIANT stack of papers, and told to research doctors, contact a list of at least a dozen fountations, apply for grants and medical assistance for the medical expenses we already have as well as the ones coming, add Kai's name to at least a half a dozen "ataxia registries", and then oh, by the way, read these articles and mark your calendar for these additional half a dozen appointments with new specialists (which also means filling out a novel of paperwork for each additional new specialist, not to mention the gigantic piles of paperwork needed to file for the financial assistance parts!). Throw in there 2 appointments with 2 different teams from the school system here to request (yet again... the 3rd year in a row now! but this time armed with an actual diagnosis!) an IEP for my little fighter. So my deepest apologies to those of you who messaged or texted me or called me and I didn't respond! I have fantastic intentions of getting caught up... one day :) I had an inbox flooded with questions about our IEP meeting though, so I wanted to give a quick update (and again... here's a warning that I keep it real so please don't be offended, and I'll go ahead an apologize in advance if you are offended). Last Thursday, I met with a team from Kai's school to add on an "addendum" to his current 504 plan. For those of you who aren't familiar, a 504 plan basically allows for a few modifications in the classroom, but you have to re-apply for this each year and hope that the next teacher you get is as on-board as the current one in helping get your child the things they need. It's also very limited in what it can allow for modifications, so with this plan, Kai couldn't get any sort of therapy (physical, occupational, or speech) at school. If you've read my last few blogs, you know that we've been asked to have these three times per week EACH. That's a lot for an only child, not to mention that fact I have 3 other children as well. So having this help at school would be HUGE. I'll spare you the details, but the team Thursday was fantastic, and made all the adjustments we needed to at this time for Kai. Then, Friday came, and that was an even bigger meeting with more higher ups from the school to file the request for the IEP. IF he were given the IEP, it would stay with him until he graduates from high school, no matter what school he's in. That would take one big fight off my platter. So I'm fighting HARD for it now, again. The meeting went about an hour and a half, then the school power went out and somehow, ALL the information they had just entered over the past hour and a half was erased, so we had to start over. Awesomeness. That was the lump of clay being drawn up, getting the air out of the clay, and then smashing it back down. So we started back at the top, re-entering it all. Thankfully, one of the higher ups had a fantastic memory and could remember almost verbatim everything we had entered. The meeting ended with me having to fill out waivers and sign over permissions for the school to contact a handful of Kai's leading specialists to discuss his case and whether or not they felt there was really a need for the IEP. Then, I was given forms I have to take to his doctors and have them fill out and send back to the school regarding his condition. And I was told I have to wait... 90 days to be exact. Yep. 90 days is what they have to read, call doctors, do their own evaluations of my poor child who has been examined by more doctors than you and I have probably seen in our entire life put together. That part just burns me up. I fully understand there's just "procedures" that have to be done, and checklists that have to be marked on their part. But I also have plenty of friends who have kids with their own struggles that are just WAY more common so the school has granted IEP's in 3 weeks or less. So my struggle is not with my friend's kids, but more with "the system" that is going to waste yet another 3 months of my child's time. But again... I will just wait. You'd think I'd be used to that part by now.
Ok, so I'm going to backtrack a tiny bit, to earlier last week. Remember all that paperwork and registries and all... well, I got right to work on that. I spent over 5 hours Monday night reading, researching, e-mailing specialists, etc. One of the registries I was asked to join was one for an organization called the NAF... National Ataxia Foundation. I e-mailed the head coordinator and told her a 3 sentence version of Kai's story and asked what I should do next to get on the registry. She immediately messaged me back with the contact info of a lady in California who she said I should contact. She said the woman had a child with AOA2 (Kai's form of ataxia). I'm not a very good phone person most of the time, so I e-mailed the lady right away, explained who I was and why I had her info, and asked her if she had any time to send me some of the wisdom she had learned in dealing with her child with AOA2. Within 2 hours, my phone rang and it was this sweet mom in California, who spent the next hour telling me her story of her 3, yes THREE, boys with AOA2 (she has 1 daughter who is not a carrier), and how she did it, the lessons she'd learned, doctors names who I should contact... and as you can imagine, I was a sponge. I was SO full of questions, but I didn't know where to even start so I just listened. And after I hung up that phone, I just cried. More like melted down. It's incredibly overwhelming to hear that your child has an incredibly rare disease, that is made even MORE rare by the fact that he's only 8 years old and other documented cases begin as a teenage or early adult onset, not to mention the fact that there's only 15 documented cases of families with this diagnosis so nobody really knows much of anything about it. Add to that hearing what we can expect life to become (wheelchair bound within a few years), as well as the reality that there is a 60-75% chance that at least 1 if not all 3 of our other kids also have this disease and just haven't shown signs yet... it's a bittersweet thing to know. Overwhelmed doesn't begin to describe it. Yes, I know, I have a God on my side who loves my child more than I could ever even dream of loving him. Yes, I know, HE can heal if He so chooses. Trust me, I've read all of those verses of healing and peace more in the past few weeks than ever before in my life. Call me weak in faith, but right now, I don't know how to hold on. I just know I have to hold on. I'm desperately hanging on by a last finger nail, hoping and praying that soon, VERY soon, I can see the beautiful piece of pottery that was sculpted and put into the kiln by The Master Artist. Because right now I'm in the fire. I find myself watching my sweet boy (we are in year-round schools, and right now my kids are all tracked out for 3 weeks, so I get to spend 24-7 with them!) day in and day out fight just to stay standing. And I find the tears falling yet again... both with pride and admiration at the incredible fight and determination that he has to adapt and modify just to keep upright, and also with pain as my heart breaks for my sweet little boy who was handed a pretty shitty hand if I do say so myself. I would give anything to take the hand he was dealt and face it myself.
Yet he never complains about it. He just keeps fighting. He falls, but he gets back up and tries again.
And I have to hold on to the fact that God doesn't make mistakes. He is making and molding Kai's story into a beautiful piece of art too. Somehow and in some way, God is going to use my precious son's story to touch lives.
And the kiln will be worth it. It has to be.
So until then... I will hang on in the fire.
What's next? I don't know. We are waiting on a call back from Johns Hopkins to let us know when we will be going there to see the head of the neuro-muscular dept, as well as the head of the ataxia clinic there. We have also been contacted by UCLA who is very interested in Kai's case and is working to figure out how they can also be a help and whether it would be beneficial for Kai to be seen by their ataxia researchers (who are the ones we got connected to thru the mom I got to speak with out in Cali!). But again... it's a "hurry up and wait". And until then, we have our schedule full of new specialists here at Duke and the MD clinic here. So thru the fire we will walk...
My pastor gave us these verses on Sunday, and I've been holding on to them since:
"Fear not, stand firm, and see the salvation of the Lord, which he will work for you today... the Lord will fight for you, and you have only to be silent." Exodus 14:13-14
I'm thankful He says to be silent... because right now, in the fire, I don't know how to pray. I just know I have to hang on.
Kalia's (10) been singing this song a lot lately. I don't think she really understands all of what we're facing right now, but oh that I could grasp the faith of my beautiful daughter as she sings this...
http://www.youtube.com/watch?v=zlA5IDnpGhc
"Our God is greater
Our God is stronger
God you are higher than any other
Our God is healer
Awesome in power
Our God.."
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