Summer’s End…

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It’s been a busy summer. We’re still in the process of going to specialist appointments for the Philosopher, and then things became even more complicated when the Professor hit his head over a month ago. He just stood up underneath the corner of a cabinet (proprioception is a common problem in autism), and initially we were told it was only a “mild” concussion. Unfortunately, he developed “Post Concussive Syndrome,” which means if he exerts himself at all he ends up with severe pain in his head and nausea, while he’s dealing with variable rates of head pain pretty much constantly. “Exertion” can mean anything from sitting up too long to just thinking too hard — something that is really hard for an autistic to avoid. His OCD has been a lot worse as well which, ironically enough, also leads to “exertion”. Needless to say, it has been a very difficult month, and we really have no way of knowing how much longer it will last – 3 to 6 months is common, and even longer than that is not unheard of… Our poor Professor is bored out of his mind, and I’ll admit I’m afraid he’s pushing his current boundaries too hard, which might be slowing down his healing process. I just can’t figure out how to keep an 18-year-old autistic young man “calm” for weeks on end!  He’s miserable! They think the reason that his brain isn’t healing “properly” is simply because his autistic brain isn’t handling the trauma like a neurotypical brain would… whatever the reason, it has made day to day life decidedly “unfun” for him. Even translating his thoughts from pictures into words has become much harder – so communication hasn’t been easy – and his memory which he’s used to having work perfectly, is unreliable. He repeats himself and loses thoughts in the middle of speaking them, which frustrates him. He misses playing music, programming, and learning languages… just to name a few things. Thanks to our genetic collagen disorder, all the laying down he’s having to do is causing him to have a lot of muscle and joint pain as well, on top of everything else. Please keep the Professor in prayer — this is just so hard.

On a happy note, the Philosopher worked so intensely in physical therapy that he’s managed to avoid surgery for now. :)  We have to monitor his tethered spinal cord and keep an eye on his symptoms… hopefully we can avoid the surgery indefinitely. We’ll see. For now he’s on a strict physical therapy regimen and we’re taking things one day at a time.  His pain levels aren’t great, and he’s struggling every once in awhile with depression a bit, but he’s hanging in there. The kid is definitely keeping himself busy! Not only is he staying on top of all his “lessons” – he’s begun a youtube channel, and keeping up with his friends from around the world. I’m proud of the way he’s managed to develop friendships with others, despite his autism and health limitations. Thanks to the internet the Philosopher is probably one of the most socially active autistic kids around. :)

I finished the web design class that I was initially so excited about. Thank goodness. I’m done with college for now. I just can’t force myself to do something that makes me miserable (no matter how much I want to like it), and costs sooooo much money!!! The financial hit is crazy, and while I might be able to excuse the money for the hope of a long term benefit, I just can’t force myself to do something that takes up so much time and bores me to death when it’s costing me so much. Even the classes that I really find interesting lose their appeal after the first 4 weeks or so. I need to be able to move on when I’ve finished learning a topic or I just end up miserable.

The reality is, I might be the only 4.0 student who hates “school,” but I do. I love to learn — but I hate the way “school” is set up as an institution. I hated it as a kid despite how “good” I was at it (which is why I loved finally being homeschooled), and I still hate it — there’s just no getting around it. I’m officially a sophomore now, but barring a miracle, I’m not wasting any more of my money on “college”. I’m going to focus on my birth doula and death doula studies, and enjoy my life. If there’s one thing my hospice work has taught me, it’s the reality of how brief our lives really are — I don’t want to waste my time here being miserable when it isn’t necessary. The ability to learn is a blessing that I want to take advantage of without the boundaries of  professors and boring assignments. Only school can make something like web design boring! It’s not the teacher’s fault either – it’s just the system – it’s set up with a power structure that drives me crazy. I’m done.

One of the big pluses of being able to focus on my doula work now is that I’ll be done with my birth doula studies by the time my new nephew’s birth comes around. I’m already feeling much more prepared to offer practical support to my sister than I felt at her last birth, and I didn’t do too shabby of a job then! :) I’m actually really impressed with how well this particular program has been put together. It’s the first birth doula certification I’ve found that emphasizes the influence of every aspect of a woman’s life on her birth — including her spiritual life. When I began, I was hopeful that it would be what I was looking for, but it has surpassed my expectations — and being able to go at my own pace, despite what life throws at me, has been really helpful lately.

There is the possibility that we will have more going on this Fall as well, but it’s a bit “up-in-the-air” – we’ll see what the next few months bring. Life is definitely an adventure around here, and I’m learning not to take any of it for granted. So much drives me to my knees…

but that’s Grace too.

It’s all Grace…

 

 

Life Goes On…

IMG_20160330_141008830       It’s been quite awhile since my last post – despite my best intentions I just haven’t had time to sit down and chronicle my thoughts and experiences. Life is busy – but blessed. Our little family  has moved to a home in one of the little villages near Mt. Hood, which is as beautiful as you’d imagine. (There’s quite a bit more traffic up here than I was expecting though!) There are still plenty of boxes that need to be unpacked, but I’m hoping to have more time for this little corner of the internet now that we’re settling into our new place.

There’s a lot going on in life right now. I’m still heavily involved in hospice volunteer and NODA work, and I’ve also begun a birthing doula program (the skills for birth and death doulas are very similar and I’m really enjoying adding this other “dimension” of “being present” [with women specifically] to my skillset). I’ve dropped my course load down to half-time for my BA in Religion so that I have time for everything that I want to be doing right now. I absolutely love my world religion and philosophy classes (the information is very useful in my “work”), but I’m not keen on the classes that I don’t feel connected to — especially when I know how much money they’re costing me!! Yes, I have a 4.0 GPA right now, but it means very little to me when I think about the financial hit this degree is giving me. I try not to think about the fact that in order to be a Catholic Chaplain I’ll need a Master’s degree — which is even more money! (But at least I’ll find all the classes in an MA applicable to my life and interesting.)  I am looking forward to my next class though — web design!! It’s been about a decade since I took a web design class, and I know things have changed a lot — it’s going to be fun. :)

Truthfully, I toy with the idea of just getting my birth and death doula credentials, making myself available for whatever donation people feel they can afford, and not worrying about the chaplain idea. I get to spend a lot more “hands on” time with people as a doula than I would as a chaplain. Hospice chaplains end up with heavy patient loads that seriously limit how much time they can actually spend with each patient, which means less time for making the heart-connections that I love so much. As a hospice volunteer I get to spend as much time with patients as I want — really I’m only limited by my own family and life schedule. I love this work, and I understand my initial pull toward chaplain work, but I’m in no hurry to spend the crazy amounts of money that the degrees will cost me. I’m already 37 — and we’ll be paying off my husband’s student loans for years… adding mine to the mix, and then whatever loans the boys end up needing… the financial implications are insane. (Why the heck can’t our education system be like the rest of the developed world! Ugh!)

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Speaking of my amazing boys. :) We’ve finally managed to get useable insurance – we qualified for state insurance for the next year – so we’re trying to catch up on health concerns that we haven’t been able to afford dealing with until now. I’ll admit to having some trauma and a bit of ptsd when it comes to seeing doctors myself – which apparently makes me a bit unstable even when my kids are the ones being checked out. I just feel like I’m on trial the entire time, my heart races, I’m nauseated… it’s awful. Thankfully, the boys haven’t had the negative experiences I have, so they handle the presence of doctors fine.

In all the recent flurry of evaluations we’ve discovered that the Philosopher has a tethered spinal cord, as well as some other things going on, so we’re in the process of tests, imaging, and the like to see if surgery is going to be necessary or not. In the meantime, he’s in physical therapy with a special therapist to help limit the degeneration that’s been happening. Thankfully it’s been helping, so while he still needs a cane, he’s now able to sit up for a longer period of time. In the next few weeks he’ll be seeing a geneticist, neurologist, cardiologist, and rheumatologist. It’s going to be a whirlwind of tests, but we’re hoping for some good answers.

The Professor had his first doctor visit in many years this past week and did a great job. He has a really hard time with touch, but the doc was very understanding and I think she’s going to be a good fit for all of us — hopefully for a long time. (Of course, so much depends on how long we have insurance!) He handled the bloodwork like a champ (I think the urine test was more disturbing) :), and we’re hoping to get answers to his blood sugar issues soon. We’ll brainstorm with the doc more at his follow-up appointment in a couple weeks. Struggling with digestive issues of all kinds has been such a normal part of his life, I don’t know what it would be like to get to the bottom of it all. With our weird genetics I don’t know if there will be a solid answer though! :)

Okay, so I managed to get through a primary care provider visit for myself  yesterday. She was really understanding with my crazy physical response just to being in the room with her. :) We did an EKG to get a baseline and lined up a variety of specialists to try to get on top of my healthcare. Without usable health insurance, I haven’t been able to be responsible about any of my ongoing issues – things like echocardiograms to keep an eye on my prolapsed mitral valve and EEGs to stay on top of my weird seizures – and I was feeling really embarrassed about it. Thank goodness the doc was understanding and didn’t make me feel any worse, she just got down to business and started lining up specialists to send me to —  an echo, cardiologist, neurologist, gynecologist and I think rheumatologist — or maybe we decided to do that last one later. Anyway, our family schedule is going to be really busy for awhile as we get all these specialist visits done. I’m tired just thinking about it all… I’d much rather stay home and ignore the issues, but that’s irresponsible when I actually have the ability to do something about them!

So, life goes on… Hopefully I’ll be by here every once in awhile to try to catch some of the moments as they fly by and store them here. Every time I turn around things are changing… and yet so much stays the same.

…It’s all Grace.

 

 

 

 

 

Life and Love…

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I was sitting vigil with someone for a brief period the other day, which is always such a privilege – the last hours of a person’s life journey are so private, it is an honor to be part of them in whatever way I’m needed – and as I sat there I was struck again with the speed of the passage of time.  This dear stranger had photos all over her nightstand portraying the various precious people in her life, and as I listened to her breathing I thought about the uniqueness, the sacredness, of her irreplaceable life. I thought about the love she must have known, and the people her life must have touched. I thought about her own joys and sorrows – those she shared with others, and those that she must have secreted away in heart… like we all do. Our lives are such precious gifts… and the moments just fly by.

Our lives begin so small. Every life starts out as a tiny spark – a union of precious, one-of-a-kind DNA – never seen before, and never to be repeated again throughout the history of the human species. And as we grow, we shape and are shaped by the many lives around us. For good or ill, our lives leave their imprint on each other – no matter how insignificant we may seem – or how short they may be… The length of time we live, whether long or short, still qualifies as a lifetime – because it is a lifetime…  Some of us circle this sun many, many times – and we touch many other lives before our time here is over. Others know only the warmth of a womb, and leave behind only pieces of DNA, where they remain within their mother’s lifeblood for the rest of her life. All of my miscarriages have been very early, just long enough to let me know a new life was there – but I take comfort in knowing that pieces of each little one’s distinct DNA remain within me… They are forever a part of me – not just in my heart, but physically within my veins. The biology behind life paints a beautiful picture – philosophically and metaphysically. There is a very real unity between a mother and her child – no matter how long she’s been a mother.

I was talking with the hospice patient I volunteer with this past week, and mentioned how busy life was, how I was looking forward to things slowing down at some point. She assured me, “They don’t – that’s what life is – you just keep going.” That’s wisdom from a woman who has circled our sun 95 times… When you have the privilege of hearing the words of the wise, it is a good idea to listen. :) The moments of our lives are here and gone, and it’s the relationships – the love we share – that carries on from one moment to the next. It’s the reality of love that lasts – from conception throughout eternity. When we love and are loved the weight of time has meaning. When we are in the last hours of our lives – when our journey here is ending – it is love that we need… it is kindness, compassion – the presence of a gentle touch and a caring heart.

There’s a reason why small things done with great love can change lives…

 

(For anyone who wants to see more artwork like the one at the top of this post, Nellie’s website is www.PaintedFaith.Net.)