It has been one year since I started this blog and it has been fun for me to write in it. It started as an output for me, in trying to navigate just my daily obligations which were getting overwhelming. It was also an outlet I could use during the week, being able to see blogspot from work and also voice my opinions without my former manager nit-picking my every life decision (think...bringing a lunch versus buying it...or even from shopping at Aldi to what shoes I was wearing).
Reflecting on this year, I've moved from figuring out how to get to the train, go shopping, pack a lunch to bigger tasks seemingly to only focusing on my eldest and his special needs. I think I hardly mention my other two children. By no means do the twins not take any part of me (in good ways), like the fact that my daughter said she wanted to play 'Higengo Seek' this weekend, which still makes me laugh as I type it.
Right now my heart is very heavy, but at the same time it's light and hopeful. How can it even be both? My awesome cousin said to me today 'Every Shadow is made by a Light'...so I think this feeling has to be like that.
For the past six years we have been trying to 'figure out' what is making my eldest special. Every person we put him in front of thinks that 'there is something there.' The thing about genetics is that you'd think with science you can figure out everything...but it's really only a small portion of cases that are figured out, like Down Syndrome. The majority of genetic specialist patients are in the same limbo state like we are. Not that diagnosing anything will help with the approach of care, especially if it's something unique or rare since any kind of documentation probably wouldn't exist, but it's hard to be stuck in the unknown.
It was my mom who said that she wished she could know the future, but it was best she didn't. I agree with her. Being in the unknown makes you wish you knew what lies ahead, but if I knew what was ahead...I don't think I'd be brave enough to face it, or I'd be too scared that I wouldn't be able to handle it. Amazingly enough, for someone who doesn't like to have things unplanned...I do prefer this 'deal with it when it arrives' approach.
With all that reflecton, I'll share with you an update from the specialized dentist this weekend. First...he was WONDERFUL! He has credentials like none I've ever seen. He is so smart and truly good at what he does, in being a pediatric dentist and a thought leader. But, you can realize you are a rare and special case when you get face time with a person with such high accolades in only 4 business days. He even personally met us in the lobby (no nurse first), he took about 15 pictures of the eldest's teeth (actual pictures...not xrays), he is going to work with our doctors to get the proper work-ups done (he's calling them all). He's also going to send the pictures to his colleagues across the country for collaboration. Hmm...rare and special for sure...I'm going to see if in time I can recognize the eldest's smile in medical journals. He did state that this isn't the first time he's seen this, but our case is different. There are syndromes that cause the teeth to fall out, but not all of the characteristics fit us. He said most likely we'll often find ourselves in a grey area...he's right - how long has he known us?
What is happening though? He's driving! Holy cow, for once, I feel like this man actually wants to help us drive to resolution. I'm not the one having to do it all, but I'm not taking my eyes off the road for one second. He told us his job to help us figure out what is making our son's teeth fall out and what to do about it. He is also getting everyone together and making them do it. He actually told me he'd be treating the eldest like his own son. I've heard that before, but this time I really believe it. He gave us a timeframe and told me to call and yell at him if he's not adhering to it. He even mentioned that in time we'd probably be in front of the head of the children's hospital genetics. Okay - I'll take it. Give us only the best, but of course...rare and special cases get extra attention. I know we are special, but why do we have to be rare and special?
This is the light, this new wonderful doctor listening, paying attention, and working on our case. The shadow is that my son's teeth are all falling out. Yes, they are all falling out prematurely. Something in his body is making them fall out. Now, it is that doctor's job to figure out why and what do to about it. I'm happy he has entered our lives.
On a side-bar, I'm regretting sharing one medical report with the school. My son is small in stature, he has always been. The report I mentioned to them and they asked to copy for their records, notes he has a small pituitary gland. I'm confident their intentions are pure, but for some reason his teacher and the school nurse are honing in on this as if it's the core problem of all his problems. The thing is, it may be small, but it may not be small for him.
Just 2 school days ago, his teacher was trying to correlate his small pituitary gland as the cause of his loose tooth thinking it was calcium retention. Why she is trying to research this stuff boggles me and it's not helping me, or her, or my son. If I'm letting the research of the cause fall off my balance bar, I'd wish they would too...I don't want to own the responsibility of figuring out the cause of his problems. I only want to own the responsibility of getting him in front of the right professionals who can do it. And it seems like we are getting there.
I'm 6 years into this quest...and I'm pretty far. I've accomplished a lot in these 6 years, and even in this 1 year since the start of my blog.
I wonder how far we will be in 1 year from now, or 6 years from now...if only I had a crystal ball. Thank goodness I don't...time to focus on only today and getting to the end of today's tightrope feat.
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