In 2011when we began to realize we needed help understanding what we now know to be high functioning autism, we were put in touch with the most amazing Family Therapist. She helped us sort out some of Lucy's symptoms and helped us know which experts to seek out for help. So when I realized I had emotional work to do, I knew right where to go. It was like starting on the fifth counseling session -- I knew I loved Lisa and trusted her, and we were able to dive right in.
Lisa helped me figure out what worked for me, and long story short, I learned that I needed to write. She encouraged me to block out time to write when I could really dedicate some time to it. She encouraged me to remember the little details — how the room smelled or sounded or what someone was wearing, but only as they came to me or felt necessary. What came after that was the opportunity to go back through our experience and name some of the feelings I had. Things came out on the page that I had no idea was in there. What surprised me most was the deep gratitude I had for how well cared for we were during that time. People were practically tripping over themselves to bring us meals, care for our kids, do our dishes, mow the lawn, clean our pool, send toys to our kids. There is a reason that people are encouraged to count their blessings—it is a strong balm for deep wounds.
When we were still in the hospital, the (WONDERFUL) social worker came to see how we were doing. We had both had the strange experience of wanting to revisit the accident in our thoughts. I felt almost desperate to remember it sometimes, like it was important for me to remember the details before I forgot them. “Is this normal? Is this healthy?” we asked. She said something to me that served as a sort of mile-marker, and that I have passed on to many, many people. She said, your mind knows that you need to process what happened to you both. You are both able to see that you don’t need to be afraid to remember it. If you choose to repress it and pretend everything is fine, it WILL come out, one way or another, and most likely when you don’t want it to. So let those thoughts come, acknowledge them, and then you can start to move on little by little.
I share this with you, because I am hoping that someone will benefit from hearing about our experiences. There was such deep healing for me in going back and acknowledging everything that happened, taking the time to let those things come out, making time to understand what I went through. Every single time I sat down to write I thought, “It doesn’t hurt to think about this anymore, this shouldn’t be that emotional.” Every single time, I finished writing with tears streaming down my face, but feeling totally refreshed. I had worried about how to “place” my experience. I always put the people who had something tragic happen to them in a special, sort of saintly category, like ,”Oh, I will never be able to manage hard things like those people. They have it way worse off than we do.” But it was also worse than a broken ankle or something. What was this thing that happened to us? Was it over? Was it ongoing? How do I categorize and understand our family as a result of all this? Am I pretending it’s not that hard? Am I placing MYSELF in some special category as Varsity Sufferers? Wallowing and even proud of having had suffering that set ME apart as “saintly?”
I’m not really sure how to explain it, but I absolutely found rest and peace, and I was ready to keep moving with my life. Steve’s condition isn’t going to change. We know that now. He may make small improvements, but he is paralyzed. We worry about things like ulcers in his feet or infections in his body that he can’t detect in time. We struggle with not having the medical support that makes sense for him. That’s our life. Those are other kinds of things to deal with. But taking that time, making healing an activity that happened on a Tuesday at 10 am, that I got a babysitter for and turned off my phone for, well, it closed that chapter for me in the very best way. God is so, so good.
Wednesday, May 9, 2018
From there to here (Part One)
This is a pretty old blog post that I never posted — who knows why, I just got busy or something. With the 4th year mark after Steve’s bike accident about to pass in June I went back to look at this and decided this is something I need to share. It’s about my own experience that first year.
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Steve and I often comment that our experiences of June 2014 are so vastly different from each others'. I have a solid week of vivid memories, poignant moments, sharp-focus. Steve has a very fuzzy blur of severe pain, exhaustion, people coming in and out, worry, grief, loneliness, thankfulness. Almost 16 months later, I have a very personal story to tell about my own trauma and recovery. I'd like to tell this story because I think it is an important story to tell, and perhaps for some of you to hear. And because for the first time, I feel like a renewed woman.
When Steve had his accident, I found that my mind could only take in so much. I could get from one day, one hour to the next without losing it, but no further. I allowed myself to experience things as they came without denial of my feelings, and truly trying to soak up what I needed to learn. But I think I knew even then that I would have work to do later. I knew that it was a deep wound that would need very particular care at some point. I remember telling Søren the day after Steve's surgery that Dad would be coming home tomorrow. Somehow I wasn't able to fully take in that this was going to be a very long haul. Even after Steve had gone to rehab and come home, I remember feeling sheepish for accepting help and even sympathy. It was like, well, we're doing okay, I don't want to intrude on your life. The return to just a bit of normal can be a dangerous place. It gives you a security in something familiar and an assumption that you can continue everything you have always done.
What this looked like for me was not allowing as much help as was offered. And not shedding responsibilities when I had the opportunity. I focused more on the tasks of caring for Steve and my home and my family and didn't recognize the importance of prioritizing rest and down time and space. I had a vague understanding that those things were important and I must be intentional about them, but still allowed myself to believe the lie that self-sufficiency and productivity are more important.
As the year went by, because of the the combination of my allowing this pattern to develop and the strange plateau-land Steve was living in, I continued to put off the work I knew I needed to do for myself. By May, I had depleted my reserves so fully that the thought of packing one more lunch for the kids seemed daunting. I wanted to just crawl in a hole and not have to talk to anyone again. I knew some time was coming up for me to sort things out and I started to make plans to disengage myself so I could do the work I needed to do.
Then the anniversary of Steve's accident arrived. Seeing it coming was just... sad. We both realized we'd been expecting him to recover fully by then. And he hadn't. We wanted to acknowledge the day and originally wanted to plan a party for so many that had loved us well during that time. But somehow we just couldn't seem to manage it. In the end, we went to lunch with the Geringers, with whom we'd most closely experienced that day. Both of them read things they'd prepared for us, which touched me deeply. We shed some tears but were mostly so grateful for how God had cared for us this last year. We visited the accident site. I thought this would have been traumatic or emotional for me, but it wasn't at all because it didn't look like I'd pictured it in my head. (Strange--I just this minute realized I can no longer see my original "head picture" of the place. Can't even conjure it up.)
And then I was off to a baby shower. And that was the day. Some appropriate tears, but not really that hard a day. But toward the end of the baby shower, I felt myself sinking into a strange fatigue. I saw my friends helping clean up the tables and put away leftovers, which I would normally jump to help with. But I felt melted into a chair like a blob of goo and found that I didn't want to talk to anyone. I headed home and went to bed.
Suddenly as I lay there, I discovered that tears were coursing down my cheeks and I had no idea they'd even started. I thought, perhaps I just need a short cry and then I'll get to sleep. But the tears wouldn't go away. I got out of bed so I wouldn't disturb Steve, and I wept. And wept. This heaviness descended over me and I couldn't shake it. I knew then that the time had come. It was time to find out what I needed to deal with and get to the work of dealing with it.
_________________________________________________________________________________
Steve and I often comment that our experiences of June 2014 are so vastly different from each others'. I have a solid week of vivid memories, poignant moments, sharp-focus. Steve has a very fuzzy blur of severe pain, exhaustion, people coming in and out, worry, grief, loneliness, thankfulness. Almost 16 months later, I have a very personal story to tell about my own trauma and recovery. I'd like to tell this story because I think it is an important story to tell, and perhaps for some of you to hear. And because for the first time, I feel like a renewed woman.
When Steve had his accident, I found that my mind could only take in so much. I could get from one day, one hour to the next without losing it, but no further. I allowed myself to experience things as they came without denial of my feelings, and truly trying to soak up what I needed to learn. But I think I knew even then that I would have work to do later. I knew that it was a deep wound that would need very particular care at some point. I remember telling Søren the day after Steve's surgery that Dad would be coming home tomorrow. Somehow I wasn't able to fully take in that this was going to be a very long haul. Even after Steve had gone to rehab and come home, I remember feeling sheepish for accepting help and even sympathy. It was like, well, we're doing okay, I don't want to intrude on your life. The return to just a bit of normal can be a dangerous place. It gives you a security in something familiar and an assumption that you can continue everything you have always done.
What this looked like for me was not allowing as much help as was offered. And not shedding responsibilities when I had the opportunity. I focused more on the tasks of caring for Steve and my home and my family and didn't recognize the importance of prioritizing rest and down time and space. I had a vague understanding that those things were important and I must be intentional about them, but still allowed myself to believe the lie that self-sufficiency and productivity are more important.
As the year went by, because of the the combination of my allowing this pattern to develop and the strange plateau-land Steve was living in, I continued to put off the work I knew I needed to do for myself. By May, I had depleted my reserves so fully that the thought of packing one more lunch for the kids seemed daunting. I wanted to just crawl in a hole and not have to talk to anyone again. I knew some time was coming up for me to sort things out and I started to make plans to disengage myself so I could do the work I needed to do.
Then the anniversary of Steve's accident arrived. Seeing it coming was just... sad. We both realized we'd been expecting him to recover fully by then. And he hadn't. We wanted to acknowledge the day and originally wanted to plan a party for so many that had loved us well during that time. But somehow we just couldn't seem to manage it. In the end, we went to lunch with the Geringers, with whom we'd most closely experienced that day. Both of them read things they'd prepared for us, which touched me deeply. We shed some tears but were mostly so grateful for how God had cared for us this last year. We visited the accident site. I thought this would have been traumatic or emotional for me, but it wasn't at all because it didn't look like I'd pictured it in my head. (Strange--I just this minute realized I can no longer see my original "head picture" of the place. Can't even conjure it up.)
And then I was off to a baby shower. And that was the day. Some appropriate tears, but not really that hard a day. But toward the end of the baby shower, I felt myself sinking into a strange fatigue. I saw my friends helping clean up the tables and put away leftovers, which I would normally jump to help with. But I felt melted into a chair like a blob of goo and found that I didn't want to talk to anyone. I headed home and went to bed.
Suddenly as I lay there, I discovered that tears were coursing down my cheeks and I had no idea they'd even started. I thought, perhaps I just need a short cry and then I'll get to sleep. But the tears wouldn't go away. I got out of bed so I wouldn't disturb Steve, and I wept. And wept. This heaviness descended over me and I couldn't shake it. I knew then that the time had come. It was time to find out what I needed to deal with and get to the work of dealing with it.
Wednesday, April 27, 2016
Nectarines and Mirrors: Neuro-Pruning and Neuro-Mirroring
In a recent post about some of the (many) little known reasons why autism diagnoses are increasing, I dangled a bit of bait for another topic about autism. I said, "What do nectarine farming and mirrors have to do with autism?"
If you've ever owned a deciduous fruit tree like a peach or apple or plum, you may know that in order to allow the tree to put its energy toward good fruit, you have to thin the set on the branches. I've watched my dad, a nectarine farmer, time and time again spend hours pulling off the tiny beginnings of fruit so that the tree's resources would go into a couple of really fat, juicy pieces of fruit instead of a dozen weenie, sour, blah pieces. Just last week I saw one of our family aprium trees with thousands of tiny green apriums littering the ground, and my dad was just about to burst with the promise of what remained on the tree.
Before I get into the science of the brain here, may I remind you that I was a liberal arts major? Like, I think I had one science class in college. So my knowledge here is sketchy at best, and based on several articles I've read on the subject.
After the brain has formed, it develops a network of neurons that have little branches--some that send and some that receive communication. They work together to understand what's going on, what the body needs, and communicating that to the brain. Basically. That connection between the senders and receivers is called a synapse. Now, when Baby Brain is making all these synapses, it generally makes way more than it needs. The ones that don't get used gradually get pruned over time--they aren't used, they stop working, they die off before they become permanent.
What happens in an autistic child's brain is that not enough pruning goes on, and the child's brain retains way too many synapses. So the child is taking in far more neurological information than necessary, causing different kinds of chaos in the child's brain function and behavior. You know how one of the hallmarks of an autistic child is that they can't look you in the eyes? Imagine that Jack Nicholson suddenly walks up to you and grabs the back of your head and locks eyes with you. WHOA. Intense doesn't really even cover it. Guess what? This is what looking someone in the eyes feels like to an autistic child ALL THE TIME. Every single time. Yeah, I wouldn't want to have that kind of intensity all day long, either, whether it's Jack Nicholson or Chris Pratt or Mickey Mouse.
And that's just ONE example of how intense it is to have too many synapses. It's one reason autistic kids are rigid--it's so much more comforting to create something you don't have to constantly process. You know that thing, and it feels SOO good to just experience and BE in that one thing. It's why autistic kids have meltdowns. They're totally overwhelmed. It's why they cover their ears--it's like listening to Count Bassie and Nirvana and Wagner all at once. It's why they have texture issues. Etcetera.
It's also one of the reasons autistic kids are so intelligent. They have the capacity for so much smart. The problem is they are overwhelmed with just keeping their world organized enough to function, so we often don't get to really see what their intelligence looks like.
Does that make sense?
On to mirrors. All of us are equipped with what are called mirror neurons. When we see other people smile, frown, grimace in pain, etc., a very small part of our brain says, "I recognize that" and responds with a teeny-tiny dose of that same reaction. It "mirrors" what others experience. Empathy. It's how we get along in society. Go back to Psych 101. When someone ahead of you about 20 feet is walking toward you, without even realizing it, you each pick which side of the sidewalk you're going to walk on so that you don't collide with each other. You notice that someone seems bored with your conversation, so you wrap up the topic and change the subject. It's how we navigate each other. But autistic kids have malfunctioning mirror neurons. They are literally blind to these social cues. They don't know you're bored, that you are offended by their bluntness, that you are sad or angry. What I've found amazing is that when I tell my girl, "What you said really hurt my feelings." She is often immediately responsive to me, and the whole pitch of our conversation changes. Over time, she has learned to connect things like my tone of voice or posture to my saying, "that hurt my feelings," and her neurons are learning to compensate and send signals to her brain. She's no expert, but she is learning!
So that, my friends, is what nectarines and mirrors have to do with autism!
If you've ever owned a deciduous fruit tree like a peach or apple or plum, you may know that in order to allow the tree to put its energy toward good fruit, you have to thin the set on the branches. I've watched my dad, a nectarine farmer, time and time again spend hours pulling off the tiny beginnings of fruit so that the tree's resources would go into a couple of really fat, juicy pieces of fruit instead of a dozen weenie, sour, blah pieces. Just last week I saw one of our family aprium trees with thousands of tiny green apriums littering the ground, and my dad was just about to burst with the promise of what remained on the tree.
Before I get into the science of the brain here, may I remind you that I was a liberal arts major? Like, I think I had one science class in college. So my knowledge here is sketchy at best, and based on several articles I've read on the subject.
After the brain has formed, it develops a network of neurons that have little branches--some that send and some that receive communication. They work together to understand what's going on, what the body needs, and communicating that to the brain. Basically. That connection between the senders and receivers is called a synapse. Now, when Baby Brain is making all these synapses, it generally makes way more than it needs. The ones that don't get used gradually get pruned over time--they aren't used, they stop working, they die off before they become permanent.
What happens in an autistic child's brain is that not enough pruning goes on, and the child's brain retains way too many synapses. So the child is taking in far more neurological information than necessary, causing different kinds of chaos in the child's brain function and behavior. You know how one of the hallmarks of an autistic child is that they can't look you in the eyes? Imagine that Jack Nicholson suddenly walks up to you and grabs the back of your head and locks eyes with you. WHOA. Intense doesn't really even cover it. Guess what? This is what looking someone in the eyes feels like to an autistic child ALL THE TIME. Every single time. Yeah, I wouldn't want to have that kind of intensity all day long, either, whether it's Jack Nicholson or Chris Pratt or Mickey Mouse.
And that's just ONE example of how intense it is to have too many synapses. It's one reason autistic kids are rigid--it's so much more comforting to create something you don't have to constantly process. You know that thing, and it feels SOO good to just experience and BE in that one thing. It's why autistic kids have meltdowns. They're totally overwhelmed. It's why they cover their ears--it's like listening to Count Bassie and Nirvana and Wagner all at once. It's why they have texture issues. Etcetera.
It's also one of the reasons autistic kids are so intelligent. They have the capacity for so much smart. The problem is they are overwhelmed with just keeping their world organized enough to function, so we often don't get to really see what their intelligence looks like.
Does that make sense?
On to mirrors. All of us are equipped with what are called mirror neurons. When we see other people smile, frown, grimace in pain, etc., a very small part of our brain says, "I recognize that" and responds with a teeny-tiny dose of that same reaction. It "mirrors" what others experience. Empathy. It's how we get along in society. Go back to Psych 101. When someone ahead of you about 20 feet is walking toward you, without even realizing it, you each pick which side of the sidewalk you're going to walk on so that you don't collide with each other. You notice that someone seems bored with your conversation, so you wrap up the topic and change the subject. It's how we navigate each other. But autistic kids have malfunctioning mirror neurons. They are literally blind to these social cues. They don't know you're bored, that you are offended by their bluntness, that you are sad or angry. What I've found amazing is that when I tell my girl, "What you said really hurt my feelings." She is often immediately responsive to me, and the whole pitch of our conversation changes. Over time, she has learned to connect things like my tone of voice or posture to my saying, "that hurt my feelings," and her neurons are learning to compensate and send signals to her brain. She's no expert, but she is learning!
So that, my friends, is what nectarines and mirrors have to do with autism!
Wednesday, April 6, 2016
Hitler, Austria, the 80's and Autism
My post on Facebook on April 3.
* * * * *
Okay, by request, a bit more on the story of what impact Hitler, Austria and the 80's had on the more recent increase in autism diagnoses.
This is a summary of a summary of part of Steve Silberman's book, Neurotribes. In the early part of the 20th century, Hans Asperger (recognize that name?) of the University of Vienna was pioneering modern research in autism, which included identifying it as a spectrum. He also identified links to high intelligence and that it is not a rare condition.
Enter Hitler. Remember how Hitler wasn't really pro-disability people? When he took over the University of Vienna, he cleaned house and appointed his own leaders. Focus was shifted to eugenics. Even Asperger's research before the takeover had begun to go "light" in order not to point the finger at a new category of people with disabilities. The impact of this shake-down lasted until the 1980's.
Oh, and did someone say something about the 80's? Remember in the 70's and 80's particularly how the tension of working moms played out? Well, with research deficit post-war on the origins of autism, people believed that autism was the result of bad parenting, especially mothers. Because mothers needed more stuff to feel guilty about.
In many ways, I think we are still in the infancy of understanding autism, knowing how to teach, parent and care for those with autism, and I think it's important to realize that we have a lot of learning to do still. There are factors involved that we really may not understand yet. In fact, today's cliff hanger is this: What does farming nectarines have to do with the brain of an autistic child? And what do mirrors tell us about how autistic kids think?
Tuesday, April 5, 2016
Autism Awareness Day
I actually had no idea that Saturday (April 2) was Autism Awareness Day, but happened to see someone else posting on it. I actually hate Awareness days, because most of the time it essentially says, "Be Aware," and I'm like, "Aware of what exactly?" Then I feel guilty because I didn't do extensive research on whatever it is I'm supposed to be Aware of. Or I (erroneously) get this weird feeling that the people asking for awareness want me to either feel sorry for them or maybe somehow elevate them to some superior level because of their suffering. Regardless, I just haven't felt like Awareness Days have given me a lot of useful things to be aware of as Average Joe(sephine) Populous.
So I spent a lot of time over the last year thinking, What exactly would I want someone to be Aware of when it comes to Autism? How can I be helpful to people who feel helpless and weird around autism? So I put together a list of what came to mind, and posted it on Facebook. The response took me by surprise--incredibly supportive, and even asking for more. Here is the list I posted:
* * * * *
So I spent a lot of time over the last year thinking, What exactly would I want someone to be Aware of when it comes to Autism? How can I be helpful to people who feel helpless and weird around autism? So I put together a list of what came to mind, and posted it on Facebook. The response took me by surprise--incredibly supportive, and even asking for more. Here is the list I posted:
* * * * *
1.) "If you've met one autistic kid, you've met one autistic kid." Kids on the spectrum look vastly different, so it's okay to feel like you don't know what autism actually is, and no one expects you to know everything about it. Most of the time, you're going to notice that someone is quirky, sometimes awkward, different.
2.) If you think your kid might fall on the spectrum (or have a similar disorder), don't be afraid to go find out. A diagnosis is not a stigma in my experience. It's the gateway to answers and the kind of help you didn't even know you needed. And it's not a death sentence. I've found more joy than I ever expected because of the things we've had to work through. Also, early intervention is the key to progressive awesomeness.
3.) If you don't know what to say to parents about their kid, say, "tell me more about your experience sometime." It's tempting to say, "Oh, all kids go through x (insert here: tantrum, low filter, awkwardness, struggle)," to try to make them not feel so different, but understand that it actually minimizes their struggle and makes a parent feel like they are just whining.
4.) Speaking of tantrums, understand that a typical tantrum and a meltdown look the same, but are as different as mud and chocolate. An autistic meltdown is very complicated in origin and resolution. I'll tell you more about it if you're interested.
5.) If you don't know how to contrast an autistic kid from other kids, use the word "typical" kid. I know you feel bad when you say "normal." I say it too and I feel bad too.
6.) Causes of autism are still being studied and could be a combination of genetics, gestation and other factors. But it's really, really clear now that vaccines do not cause autism.
7.) The rise in autism diagnoses in more recent years has way more to do with Austria, Hitler and the 80's than any other factor. That's also another great story for another time.
8.) Because autism is a neurological disorder, not a disease, there is not a "cure," but rather a multi-faceted approach to help an autistic child learn healthy coping and compensating strategies.
9.) Sometimes it is just HARD to be a parent of a kid on the spectrum. It's super hard to explain why sometimes, too, but it is mentally taxing, emotionally straining, and you don't know how to help your kid without losing your mind. Sometimes, for really long stretches, it seems like you're going backward and every single option is the wrong decision. And it feels like everyone thinks you are just a really sucky parent.
10.) Because of the incredible amount of work you have to put in to understand your kid, you have the opportunity to be come close to your child in a way you may never have had otherwise, and you find a person so beautifully and wonderfully made that it continues to astonish you.
So. I'll be straight with you. Autism sucks. It's a neurological disorder, or rather several disorders working together. It makes life very difficult to navigate. But everyone has something difficult in their life, and this is our difficult thing. We have seen God work in and through it in ways we could never have expected or known to ask for, and seen his goodness in sharp focus. So there you go, friends, now you are Aware! Have a great April 2!
Monday, April 4, 2016
The Earles on April 4th
The story most of you have been visiting our blog for is Steve's accident on June 14th and his subsequent recovery. I'll give you a little update on that below. But I'm sensing that our family has some other stories to tell. Most of you know that our daughter has High-Functioning Autism, which includes Sensory Processing Disorder, Sleep Onset Disorder, and either true ADHD or ADHD-like symptoms. She really is an incredible kid, though she may drive me nuts much of the time! So for her sake, I won't talk a lot about her--she has her own story to tell one day and I'd love for her to tell it in her own way. Or not tell it. That's her right. What I'm finding is that some of my own stories are burning to be told, some of the learning that I've experienced could be so very helpful to others. So going forward, I will be adding that aspect of our lives to the mix of blog posts. You know... when I get a flurry of creative energy and actually feel like I can write once every 6-8 months!
The update on Steve is very similar to the update in August. He continues to make micro-improvements. This is really, really good. I see his balance improving, his ability to turn, step over things, lift things, avoid fast-moving objects (i.e. Søren). His feet are still terribly curled up, he has crazy-looking marks on his legs because of circulation issues. He has some other functions that are still impaired. But we see improvement. It's a really long story, but we have finally located THE ONLY neuro-PT in all of Kaiser's So-Cal network, and he has an appointment with her on Friday. He has not been assessed by a medical professional in a really long time, and we have a lot of questions. Things like, how worried should we be about his circulation? Should we be doing more for his toes? Is his compensatory walking style going to affect other joints and muscles negatively? And most importantly, will Kaiser PLEASE invent a cooler-looking cane??
He has recently stopped going to Rancho Los Amigos for FES bike therapy because again, we really don't have an avenue to consult with someone about how effective it is, how often he should go, etc. It's also a 9 hour a week commitment (driving, working out, driving), and it's just super restrictive on his schedule without knowing how effective it is. We have, through a generous donation, received a small, home FES machine, (basically could stimulate his muscles while he sits and works, etc.), but we really need the neuro-PT to talk through a plan on how to use it. So instead, he spends a half hour on the treadmill in our garage every day and half an hour on his kirte-kinetic (stationary) bike. I really believe the consistent blood-flow to those areas is making a difference. He's continuing to stimulate muscle memory, and while I'm no doctor, I can't help but think the blood flow is helpful for nerve re-growth.
We still have moments where we are just sad about what has been lost. But that's definitely not the prevailing feeling. We are accepting things that may never return, and we're thankful for so many things that have returned. Last week during Spring Break, we went hiking in Yosemite National Park. He uses hiking sticks (they look a lot like ski poles) and basically uses his arms to get him up steep hills because his glutes, hamstrings and calves are still ineffective for that kind of work. We hiked to the bridge below Vernal Falls, which I believe was the most strenuous hike he's done to date. And he is regularly getting on his bike to ride around with Søren and Lucy. We've decided we will bring all our bikes back to Yosemite sometime this Fall. And yes, we all wear helmets. You should too.
Thank you for those of you who continue to pray for us. God has been so very faithful. This post is already too long, but at some point I really want to share with you how God walked me through my own recovery from what I now know is mild PTSD (post-traumatic stress disorder). Many care-givers experience this and have no idea this is what is happening to them. They are focused on keeping it all together. But you can't do that forever--your body and mind won't allow you to push it beyond capacity. The short story is that a couple of months of therapy with a trusted Family Therapist was nothing short of restorative and life-giving for me. The long story--that's two posts at least!
Wishing I could hug you all.
The update on Steve is very similar to the update in August. He continues to make micro-improvements. This is really, really good. I see his balance improving, his ability to turn, step over things, lift things, avoid fast-moving objects (i.e. Søren). His feet are still terribly curled up, he has crazy-looking marks on his legs because of circulation issues. He has some other functions that are still impaired. But we see improvement. It's a really long story, but we have finally located THE ONLY neuro-PT in all of Kaiser's So-Cal network, and he has an appointment with her on Friday. He has not been assessed by a medical professional in a really long time, and we have a lot of questions. Things like, how worried should we be about his circulation? Should we be doing more for his toes? Is his compensatory walking style going to affect other joints and muscles negatively? And most importantly, will Kaiser PLEASE invent a cooler-looking cane??
He has recently stopped going to Rancho Los Amigos for FES bike therapy because again, we really don't have an avenue to consult with someone about how effective it is, how often he should go, etc. It's also a 9 hour a week commitment (driving, working out, driving), and it's just super restrictive on his schedule without knowing how effective it is. We have, through a generous donation, received a small, home FES machine, (basically could stimulate his muscles while he sits and works, etc.), but we really need the neuro-PT to talk through a plan on how to use it. So instead, he spends a half hour on the treadmill in our garage every day and half an hour on his kirte-kinetic (stationary) bike. I really believe the consistent blood-flow to those areas is making a difference. He's continuing to stimulate muscle memory, and while I'm no doctor, I can't help but think the blood flow is helpful for nerve re-growth.
We still have moments where we are just sad about what has been lost. But that's definitely not the prevailing feeling. We are accepting things that may never return, and we're thankful for so many things that have returned. Last week during Spring Break, we went hiking in Yosemite National Park. He uses hiking sticks (they look a lot like ski poles) and basically uses his arms to get him up steep hills because his glutes, hamstrings and calves are still ineffective for that kind of work. We hiked to the bridge below Vernal Falls, which I believe was the most strenuous hike he's done to date. And he is regularly getting on his bike to ride around with Søren and Lucy. We've decided we will bring all our bikes back to Yosemite sometime this Fall. And yes, we all wear helmets. You should too.
Thank you for those of you who continue to pray for us. God has been so very faithful. This post is already too long, but at some point I really want to share with you how God walked me through my own recovery from what I now know is mild PTSD (post-traumatic stress disorder). Many care-givers experience this and have no idea this is what is happening to them. They are focused on keeping it all together. But you can't do that forever--your body and mind won't allow you to push it beyond capacity. The short story is that a couple of months of therapy with a trusted Family Therapist was nothing short of restorative and life-giving for me. The long story--that's two posts at least!
Wishing I could hug you all.
Wednesday, August 12, 2015
Long time, no see
Hello, long lost, faithful friends! It's been a very,very long time since I've been here. There are some good reasons why it's been a long time, and some good reasons I may be back for a little bit. Let me fill you in.
The last I reported, Steve had made some big jumps in his functionality, the biggest of which was his ability to drive again in December. Our lives changed enormously at that point and returned to the closest thing to normal we'd known since June 12, 2014. And then Christmas ate us up, as you all can relate to. Then the joyful anticipation of my baby brother giving me a new sister-in-law in March (YAY!). Then Lots of Things, too many to unpack here. All this time, while we were barreling back into something resembling normal, Steve started to plateau. I didn't feel I had anything to say. I wasn't sure what to blog or exactly why I would blog at all, and I couldn't come up with the energy to even think about it.
Soon we found ourselves staring down The One Year Mark. We began to realize we'd both sort of expected something magical to happen by June 13, 2015. Steve's initial progress had been so rapid and astounding that we'd been led to believe he could be fully recovered by the time a year rolled around. As it got closer, we had to face the fact that this road is going to continue to be long.
I've struggled this entire year (and two months) to know how to answer the question, "How is Steve doing?" What are they hoping to hear? How much do they want to know? How exactly IS he doing? I'm touched by everyone that asks and still knows that there is a reason to ask, even a year (and two months) after Steve's accident.
So, I've been doing some thinking about the answer(s) to that question. Here's the short answer. Mostly very good. We are so thankful that he's progressed over time, and especially for some recent improvement in July. But Steve's body is still significantly impaired and has great deal of healing left to do. Would you please pray that God would continue to heal Steve's body?
Here's the long answer. Our metrics for Steve's improvement have been: from a month ago, two months ago, 6 months ago, and by those markers we see improvement. He uses a cane to get most places, but almost never around the house, and his very slow speed has improved to slow. Increased mobility, some increased sensation. One of my great joys this summer has been watching him get back in the pool. He uses a cane to get into the pool, but he has great freedom of movement in the water. We believe that has been a partial cause for the small jump in his healing. The kids get to play with him. And perhaps most beautiful to me is watching him pick up the kids and throw them. He can't pick anything heavy up outside the water, and there is something so normal and right about him tossing the kids.
Here's the hard stuff. Steve is not fully recovered, as we had been led by some to believe he might be by this time. He is still partially paralyzed. His legs hurt all the time. His balance is poor, even a little scary. He can't get on a ladder or pick up anything heavy. He can't feel when he's cut his foot (which happened... he discovered it when he saw blood all over the back patio where he'd been walking!). I won't even tell you about his toenails and kicking things without knowing about it (because, ew.) In the middle of the night his legs spasm. Every morning he wakes up and has to remind himself that he's impaired. He has a routine that is required for him to start his day that brings this reality into sharp focus. Every morning, he preaches the Gospel to himself.
We've recently been told by his recovery physician that we should be happy with this and not expect more. That he's 1 in 1,000. But both of us listening to our gut and asking the hard questions are not satisfied with this answer yet. Kaiser has cut their contract with Rancho, and Steve can no longer go there. There are no spinal cord injury specialists in the Kaiser network. He's been assigned an orthopedic physical therapist. In other words, we are at a dead end with what Kaiser is able and willing to provide. Steve's recovery is "good enough."
Don't get me wrong. If this is God's final word for us on this, we're listening. We've been asking God what we do with this information, and both of us agree that we don't seem to be done yet. There may be hard days ahead where we learn that we are indeed done, and need to accept the loss as permanent. But our soul-searching has prodded us to keep investigating.
So now what? We are plumbing our resources to find out what may be available for his recovery. We both feel we need some wisdom and guidance from a spinal expert that we can trust. We're not really sure how to find this person yet. We know it will be out-of-pocket, which we are willing to do, but I certainly fight bitterness with Kaiser for this failure. Please pray with us that we will be discerning about what to do next.
One comment we frequently get is, "You should be so thankful." We really are. When I remember getting that phone call and when I think of what life would look like now had a fragment of bone gone a millimeter to the right or if he hadn't had his surgery delayed to enable 23 hours of aggressive steroid treatment... he could so easily still be in a wheelchair. He could have broken his neck. Had brain damage. I think of his horrid walker he was using a year ago, the wheelchair we used on long treks. I think of the miracle of God creating our bodies to repair themselves. I'm so thankful, and I have very great joy when I think of this. But please know that we are also grieving losses at the same time, even a year later. It's not constant. Most of the time we are wrapped up with making sure the kids get to swim lessons and researching which tires to put on the van and work and church and family and life. But because this process has been so unknown, we haven't known what exactly to grieve and how temporary this all would be, so it catches up to us unexpectedly.
So the answer is, mostly good. So thankful--God is near, God is good, God is merciful. God comforts, God understands grief. God heals our bodies and our hearts, and his timing is perfect.
The last I reported, Steve had made some big jumps in his functionality, the biggest of which was his ability to drive again in December. Our lives changed enormously at that point and returned to the closest thing to normal we'd known since June 12, 2014. And then Christmas ate us up, as you all can relate to. Then the joyful anticipation of my baby brother giving me a new sister-in-law in March (YAY!). Then Lots of Things, too many to unpack here. All this time, while we were barreling back into something resembling normal, Steve started to plateau. I didn't feel I had anything to say. I wasn't sure what to blog or exactly why I would blog at all, and I couldn't come up with the energy to even think about it.
Soon we found ourselves staring down The One Year Mark. We began to realize we'd both sort of expected something magical to happen by June 13, 2015. Steve's initial progress had been so rapid and astounding that we'd been led to believe he could be fully recovered by the time a year rolled around. As it got closer, we had to face the fact that this road is going to continue to be long.
I've struggled this entire year (and two months) to know how to answer the question, "How is Steve doing?" What are they hoping to hear? How much do they want to know? How exactly IS he doing? I'm touched by everyone that asks and still knows that there is a reason to ask, even a year (and two months) after Steve's accident.
So, I've been doing some thinking about the answer(s) to that question. Here's the short answer. Mostly very good. We are so thankful that he's progressed over time, and especially for some recent improvement in July. But Steve's body is still significantly impaired and has great deal of healing left to do. Would you please pray that God would continue to heal Steve's body?
Here's the long answer. Our metrics for Steve's improvement have been: from a month ago, two months ago, 6 months ago, and by those markers we see improvement. He uses a cane to get most places, but almost never around the house, and his very slow speed has improved to slow. Increased mobility, some increased sensation. One of my great joys this summer has been watching him get back in the pool. He uses a cane to get into the pool, but he has great freedom of movement in the water. We believe that has been a partial cause for the small jump in his healing. The kids get to play with him. And perhaps most beautiful to me is watching him pick up the kids and throw them. He can't pick anything heavy up outside the water, and there is something so normal and right about him tossing the kids.
Here's the hard stuff. Steve is not fully recovered, as we had been led by some to believe he might be by this time. He is still partially paralyzed. His legs hurt all the time. His balance is poor, even a little scary. He can't get on a ladder or pick up anything heavy. He can't feel when he's cut his foot (which happened... he discovered it when he saw blood all over the back patio where he'd been walking!). I won't even tell you about his toenails and kicking things without knowing about it (because, ew.) In the middle of the night his legs spasm. Every morning he wakes up and has to remind himself that he's impaired. He has a routine that is required for him to start his day that brings this reality into sharp focus. Every morning, he preaches the Gospel to himself.
We've recently been told by his recovery physician that we should be happy with this and not expect more. That he's 1 in 1,000. But both of us listening to our gut and asking the hard questions are not satisfied with this answer yet. Kaiser has cut their contract with Rancho, and Steve can no longer go there. There are no spinal cord injury specialists in the Kaiser network. He's been assigned an orthopedic physical therapist. In other words, we are at a dead end with what Kaiser is able and willing to provide. Steve's recovery is "good enough."
Don't get me wrong. If this is God's final word for us on this, we're listening. We've been asking God what we do with this information, and both of us agree that we don't seem to be done yet. There may be hard days ahead where we learn that we are indeed done, and need to accept the loss as permanent. But our soul-searching has prodded us to keep investigating.
So now what? We are plumbing our resources to find out what may be available for his recovery. We both feel we need some wisdom and guidance from a spinal expert that we can trust. We're not really sure how to find this person yet. We know it will be out-of-pocket, which we are willing to do, but I certainly fight bitterness with Kaiser for this failure. Please pray with us that we will be discerning about what to do next.
One comment we frequently get is, "You should be so thankful." We really are. When I remember getting that phone call and when I think of what life would look like now had a fragment of bone gone a millimeter to the right or if he hadn't had his surgery delayed to enable 23 hours of aggressive steroid treatment... he could so easily still be in a wheelchair. He could have broken his neck. Had brain damage. I think of his horrid walker he was using a year ago, the wheelchair we used on long treks. I think of the miracle of God creating our bodies to repair themselves. I'm so thankful, and I have very great joy when I think of this. But please know that we are also grieving losses at the same time, even a year later. It's not constant. Most of the time we are wrapped up with making sure the kids get to swim lessons and researching which tires to put on the van and work and church and family and life. But because this process has been so unknown, we haven't known what exactly to grieve and how temporary this all would be, so it catches up to us unexpectedly.
So the answer is, mostly good. So thankful--God is near, God is good, God is merciful. God comforts, God understands grief. God heals our bodies and our hearts, and his timing is perfect.
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| August, 2014 |
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| July 2015 |
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