I have been slowly working on a blog post of more substance, but for now this post will be a quick read and some nice pictures. I have not been feeling well and viral illness has run through our family, so I have not been able to post a blog recently. Our lives have been filled with the stark contrast of painful difficulty and promising beauty.
We are in a waiting spot with L's medical issues, and although he continues to quit breathing and aspirating, just knowing that we on track and there is an effort being made is enough to make the waiting space a comfortable one. We have a teeny bit more information about his aspirating. It is more dangerous than we were under the impression. Signs are starting to point toward a neurological disease. I hope we get answers, but I do hope it is not something serious. The therapist also noticed his breathing is more difficult after drinking. We are not thickening his fluids, because the therapist believes he may just aspirate the thicker fluid, which would be much worse. So for now, there is not a whole lot to do and his sensory issues are working against us. We are supposed to try cold drinks and strongly flavored drinks for now. We need to figure out the root of the problem.
Aside from that though, he is growing into the most beautiful little boy. My goodness is he bright. This kid, that couldn't talk this time last year, is able to convey all kinds of grand ideas, and you can see in his pale eyes that there ideas so much more grand being made in there just waiting to find the right words. He knows more about cars than I do and can name probably more than 50 models. The other day, he picked up a spare computer part (all of which look the same to me frankly) and told his Dad, “Here, a hard drive”, which it was. For his third birthday, he has requested a penguin party, in honor of March of the Penguins. He loves to read with us and, just like Mom, The Lorax is his favorite and is to be read every night, of which makes my heart glow with pride. When we go outside, he has to hug and kiss a significant portion of the tree population. He already seems to have a sort of inner knowledge about what is important in life, love and family, beauty and intellectual ideas, freedom and connectedness.
Unfortunately, amidst all of the growth and beauty that is our son and the early spring sunshine we have had, there have been some significant difficulties in our life too. It seems I have been resigned to using a cane. I have been in quite a bit of pain, which I have not been able to track down the beginning of. It is not clear whether it is connective tissue or nervous tissue or muscle tissue. Any of those could be true. The pain clinic seems to think it is a nerve issue and that my autoimmune diseases are attacking the nerves. No one else seems to have come to a conclusion, and although no one really agrees on one cause, there is concern that my central nervous system could be being attacked. Regardless, I'm not able to really walk. I can hobble with a cane for a short period of time, but anyone who knows me knows that not walking is a big blow. Just simple things like walking to the pharmacy (well, okay, it's like the Oregon Trail to get from the car to the Walmart pharmacy) or making dinner or changing the boy have become quite difficult. And forget about hiking, which is a big part of my life. This has been an eye opener for us. About a year ago, when I started chemotherapy, I made a bucket list. It was a things-I-want-to-make-an-effort-toward-and-be-semi-serious-about list. Well, okay, someday is great, but someday has come and gone for many of those things. Can I hike to the top of Desolation Peak to the fire lookout that Jack Kerouac stayed in? No, it's not likely I will ever be able to do that. What about my number one on the list? Mesa Verde cliff dwellings. Yeah, I can drive there, but at my current state that is the farthest I will get. I can stare at them from the parking lot, I guess. They are not all out of reach, but a great deal of them are. And some I hope to get back someday, like Mesa Verde. But I do not believe in dwelling in things you can't fix and spending your energy in things that you can. So where does that leave us? That leaves us in the fact that someday needs to be now. All of those wonderful things I want to do? Someday may not happen, so I need to do those things now. I want everyone to think about that today, because someday may not come for many of us, it just happened to me earlier than most. When you talk to God that first day in Heaven, will you be able to look at Him with a grin plastered across your face and say “I used my life well”? Will He say He was proud of how you spent your days? So admire the beauty given to you in each day, like the way the light looks just perfect as the puddle reflects those spring flowers just in bloom, don't miss those moments, please. But in addition to those beautiful moments where and when you are, make more than just a vague effort to make the grand ideas you have come true. Don't just travel through life floating through the days passively, make your days purposeful, even if that purpose is just to drink lemonade at the beach.
Regarding our house, it has been difficult to wade through the legalities. It appears that the current laws do not allow us to live in our tiny house on its own property. I cannot find a way to make it legal for us. Most people seem to live in theirs illegally, but we can't take that risk with L's health problems. Here is a breakdown of the laws. You can either call it an RV or a mobile home. If it is an RV, it cannot legally be a primary residence, and you can't live in it more than 120 days in one place. If it is a mobile home, it has to meet the building codes, which it cannot due to size and the systems (plumbing, electricity, etc.) This is a huge bummer. Some people have asked, why not just use it as an RV and travel? Well, that would be a great choice for someone, but the point for us was to have less "stuff" and live with less, and this has just become more stuff. Plus, it would take a lot more gas to travel, being even less environmentally friendly.
These are pictures from a trip out to Northern State Hospital. It used to be a mental hospital, but is now in ruins.
|Northern State Hospital Ruins|
|Northern State Hospital Ruins- some kind of barn stalls|
|Northern State Hospital ruins- the dairy farm|
|Northern State Hospital ruins- looking up the silo|
|Northern State Hospital ruins|
|Our dog- old and happy|