Occasionally folks will ask me, "Do you ever miss your foot?" My response is usually something like, "Definitely not my post-accident one....but my pre-accident foot, yes. That one was lost at the time of my accident." In companioning patients in end-stage / end-of-life situations these days, I am reminded of how difficult and arduous the soul-searching can be... to know what to do when a part of you....your loved one, is not coming back in the way they once were. No matter how we look at it, loss is hard. It seems we do all that we can to avoid thinking about it.
My post-accident ankle brought a lot of pain, heartbreak, and longing for a life I had once loved. Thankfully, amputation provided a better "quality of life" alternative to walking around in this metaphorical middle-world of wishing for the past yet wanting to move on, (and life is different as an amputee, for sure). However, there is an energy that gets all clogged up in a person's psyche when feeling stuck, powerless, and in pain. We forget the emotional toll this can take on a person and their support system. Without realizing it, the "suffering person" often feels guilty for not being their "former self" and for "bringing people down", despite all efforts for folks to assure them that this is not the case.
I know a family right now who is going through the arduous process of learning how to let go. Pam has been battling end-stage cancer for six months, and has undergone four hellish years of exhausting all options to treat her progressing disease, which has now invaded her entire body. Like me and like many of us, Pam is tough. She has, as they say, fought the good fight....but she is tired. The family is tired. Everyone is tired. But the energy is stuck in trying to hold on to the physical life she has left rather than celebrating and embracing the amazing spirit she is and offering it back to the universe.
One thing I have come to know without question is the fact that all of us have a terminal condition. Short of cryogenics becoming a reality (as in the sci-fi thrillers), none of us is making it out of this world alive. It might sound morbid and pessimistic, but there is a freedom in acknowledging this reality earlier rather than later. We have no crystal ball to know when it will be our time to exit this dynamic and beautiful giant green and blue earth marble that we inhabit. Remaining in denial about our eventual demise only serves to stifle the life-energy that we all embody. It's an energy and a spirit that dances and communes with a place beyond the walls of our skin.
Two years ago while in Florida (getting my first prosthetic leg) I received a phone call from my mother informing me that my dad had suffered a pulmonary embolism. My mom found him non-breathing and unresponsive on the floor and immediately gave him rescue breathing (yay, mom!). Luckily, the clot became dislodged, my dad got to the hospital and was treated promptly. It was truly a "best case scenario." However, as luck would have it, the proverbial genetic canon on my dad's side is fully loaded with cardiac problems. Whether you aspire to the understanding that "life is a crapshoot", the belief that we are part of something greater, that we are all inherently doomed to the underworld, or that aliens will inhabit our bodies at the moment of death, it does behoove each of us to have a discussion about what we would like our final days to look like while we are in our most sane minds, and earlier rather than later.
Way too often, we have all seen families torn apart by unforeseen challenges which present themselves at the end of life. In these circumstances, people can become literally and figuratively out of their minds, because it can be too tough to handle hard choices when we are still reeling from the trauma of finding out horrible news.
To begin the discussion....to start talking about these things is enormously important.
While medical technology has progressed by leaps and bounds over the past twenty years, so have medical complexities, and thus, our choices. We do ourselves a disservice by giving away our power to make choices if we don't discuss these issues while we are still able.
Before my accident, I never would have thought about these kinds of things. "It's depressing," as some of us say. But is doesn't have to be.
Talk about what you value. Talk about what are the non-negotiables of your life, and what, if projecting forward, you think you could or couldn't handle. Also, know that these things could change... because life is constantly evolving. Be sure to have these things in writing, and have them on-file with your medical professionals.
Denial can be a horrible thing. But not engaging our brains and our hearts in this very human experience is what makes it horrible. Having a plan in place can be an emotional life-saver.
If I would have given all of my power over to the medical folks to keep salvaging my leg, I would probably be depressed and drooling all over myself by now. Thankfully, there are medical folks out there who embrace the idea of partnering together in medical care for what is best for us and our loved ones. Embracing the complexity in our lives is a part of the human adventure. Talking about advance planning and decision making for healthcare is a part of that adventure.
Just DO IT. Then get busy living!
Advance Care Planning resources to begin the conversation can be found here:
US Living Will Registry
Advance Planning, 5 Wishes
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289
"Talking Death" Discussion Cards
Monday, May 23, 2016
Friday, May 6, 2016
REVISIONING STRENGTH. When Life Does Not Go as Planned...
One of the advantages of living through a difficult experience is that it sharpens one's awareness of "bigger life issues", and helps one to hone in on relationships, priorities, and things that we consider of a more important value. For a while after my accident, I would regularly think to myself, "hey, I've just earned my 'escape the rat-race' free pass", as matters which once seemed a big deal no longer packed the same punch as they had previously. The other side of that token, I've learned, involves a necessary deep probing into the depths of this life-experience, and discovering that often life does not offer neatly packed reassurances, comfort, or explanations in the midst of our challenges. The life-stories we write for ourselves seldom include acquiring disability, early death of those we love, pain or suffering of any type....and they certainly avoid admitting any type of defeat. Whatever the struggle, we rise This is the stuff heroes are made of.
But what does happen when life doesn't unfold as planned? When we are hit full-force by overwhelming difficulty or suffering which reminds us that we are not as in control as we once thought we were? THIS, we tell ourselves, is the stuff reserved for prophets, sages and shamans. We maintain that we are here to rise. To embrace victory...
The natural world is thankfully a great humbler, as anyone who has had their vacation plans thwarted can attest. Yet we hold on to optimism because it keeps us going. Hope keeps our spirit a-flutter and imbues our life with passion and purpose. It was this same optimism and hope which drove us to book a trip out West this March with the dual plan to backpack the West Rim of Zion National Park (my first such experience as an amputee), and visit with our good friend Dan, who had been courageously battling an aggressive, terminal brain tumor since the previous May.
Dan and my husband had become friends in the mid 90's, when he worked for the school district of Las Vegas. Scott found a kindred soul in Dan, as a fellow outdoor / nature junkie who had one of the kindest hearts of anyone I knew. He was a gifted artist who loved working with troubled kids. Dan also introduced Scott to the rock climbing community out there, and shared this passion which I grew to embrace as well. Every few years we would make a trip out for a visit,
and a rag-tag bunch of near-middle age active junkies would meet up at some crag in Red Rock Canyon. Inevitably, we'd have a blast.....an awesome energy abounded.
This trip would be different for sure. We didn't know how different exactly, until Scott received a text from Dan's wife, Judy, the evening before we left for vacation, informing him that Dan had taken a turn for the worst and was now in hospice care. While waiting to board the plane at Chicago O'Hare, he received a second text from Judy: "Scott, he's gone..."
We sat in silence, looking at those words and feeling such heavy, heavy loss. We tried to muster up the ambition to get psyched up for a trip on the West Rim at Zion, but neither of us slept well...and by the time we arrived, the road at the trailhead was closed due to snow. Reports for an evening on the rim included slogging through snow and mud, below-freezing temps, and a guaranteed-to-be-miserable trek. Feeling disappointed and down, we opted to camp in the valley and gear down a bit.
Weather for the following day included strong winds and rain, but we made the best of our time there, with a plan to secure a campsite around Red Rock Canyon outside of Vegas. Driving into the park felt strange, as we realized that the last time we had been there we had taken a fun photo while Dan was healthy and carefree. Our hearts were heavy, and my husband needed to find some kind of
way to say his final farewell to his good friend. He got a white helium balloon, climbed atop the Red Rock Canyon entrance sign (the same sign we had posed at the previous year), and let the balloon fly into the sky with his sentiments and shared memories.
Truthfully, it was a tough trip. Emotionally, it felt empty and surreal. We were very grateful to have met up with climbing friends, and to do a little climbing and hiking while in Red Rock Canyon. The weather finally began to cooperate by the last day of our trip. Still, the looming shadow of Dan's death was there, and there was no escaping the feeling of loss.
Yet knowing Dan, the ever-embracing adventurer that he was, we pressed on. We talked about Dan. We talked about death. Struggle. Disability. Pain. Loss. We tossed around gratitude through these experiences, mixed in with a fair amount cursing for the seeming injustice of it all. We hiked and grumbled, and talked a fair amount about risk. The risk of climbing, of venturing, of loving, and of letting go.....
And I began to understand strength from a different perspective.
For the years following my accident, I had embraced my inner warrior with a vengeance. I was going to climb back and take life by the horns. This was my duty, I felt....having been given a second chance.
However, life has a way of putting things in perspective, and losing the life you had planned for yourself has an interesting way of tossing you into a humble tailspin. It's gut wrenching, soul-consuming, heartbreaking and messy. There is no guidebook for helping to climb your way back and finding your life direction. As I companion patients and families through these difficulties through my CPE experience at Meriter Hospital, I share these struggles with nearly everyone I meet. It occurs to me every day that what matters most is not what we achieve, how much money
we make, how physically strong we are, how many letters we have after our names, races we have won, etc. What matters is the depth of relationships we have with one another, and our willingness to take on this life-adventure....with all of its beauty, messiness and pain.. It also embraces the risk of opening ourselves up to deep, heartbreaking loss. This is where my heart hurts. There is nothing more difficult than loss. There are no helpful platitudes to apply as balm to the soul....our hearts break open and ooze pain, and no emotional bandage can take away that suffering.
Yet.....This IS THE ESSENCE of the life-adventure. It is risky to love someone so much and to lose them. The more we open ourselves up to joy, wonder and deep connection, the more we subject ourselves to loss and suffering. The greater the summit, the greater the risk. Ask any adventurer though....and they will tell you that the summit and the JOURNEY are ALWAYS worth the risk.
I am thankful for our friend Dan's presence in our lives. His kind, humble, compassionate heart, youthful vigor, lust for life and amazing friendship will be truly missed. Our hearts continue to hold Dan's family and his wife, Judy close, as we learn more about this new kind of strength required in the adventure which lies ahead. The strength of letting go, and climbing on....
But what does happen when life doesn't unfold as planned? When we are hit full-force by overwhelming difficulty or suffering which reminds us that we are not as in control as we once thought we were? THIS, we tell ourselves, is the stuff reserved for prophets, sages and shamans. We maintain that we are here to rise. To embrace victory...
The natural world is thankfully a great humbler, as anyone who has had their vacation plans thwarted can attest. Yet we hold on to optimism because it keeps us going. Hope keeps our spirit a-flutter and imbues our life with passion and purpose. It was this same optimism and hope which drove us to book a trip out West this March with the dual plan to backpack the West Rim of Zion National Park (my first such experience as an amputee), and visit with our good friend Dan, who had been courageously battling an aggressive, terminal brain tumor since the previous May.
Dan and my husband had become friends in the mid 90's, when he worked for the school district of Las Vegas. Scott found a kindred soul in Dan, as a fellow outdoor / nature junkie who had one of the kindest hearts of anyone I knew. He was a gifted artist who loved working with troubled kids. Dan also introduced Scott to the rock climbing community out there, and shared this passion which I grew to embrace as well. Every few years we would make a trip out for a visit,
and a rag-tag bunch of near-middle age active junkies would meet up at some crag in Red Rock Canyon. Inevitably, we'd have a blast.....an awesome energy abounded.
This trip would be different for sure. We didn't know how different exactly, until Scott received a text from Dan's wife, Judy, the evening before we left for vacation, informing him that Dan had taken a turn for the worst and was now in hospice care. While waiting to board the plane at Chicago O'Hare, he received a second text from Judy: "Scott, he's gone..."
We sat in silence, looking at those words and feeling such heavy, heavy loss. We tried to muster up the ambition to get psyched up for a trip on the West Rim at Zion, but neither of us slept well...and by the time we arrived, the road at the trailhead was closed due to snow. Reports for an evening on the rim included slogging through snow and mud, below-freezing temps, and a guaranteed-to-be-miserable trek. Feeling disappointed and down, we opted to camp in the valley and gear down a bit.
Weather for the following day included strong winds and rain, but we made the best of our time there, with a plan to secure a campsite around Red Rock Canyon outside of Vegas. Driving into the park felt strange, as we realized that the last time we had been there we had taken a fun photo while Dan was healthy and carefree. Our hearts were heavy, and my husband needed to find some kind of
Truthfully, it was a tough trip. Emotionally, it felt empty and surreal. We were very grateful to have met up with climbing friends, and to do a little climbing and hiking while in Red Rock Canyon. The weather finally began to cooperate by the last day of our trip. Still, the looming shadow of Dan's death was there, and there was no escaping the feeling of loss.
Yet knowing Dan, the ever-embracing adventurer that he was, we pressed on. We talked about Dan. We talked about death. Struggle. Disability. Pain. Loss. We tossed around gratitude through these experiences, mixed in with a fair amount cursing for the seeming injustice of it all. We hiked and grumbled, and talked a fair amount about risk. The risk of climbing, of venturing, of loving, and of letting go.....
And I began to understand strength from a different perspective.
For the years following my accident, I had embraced my inner warrior with a vengeance. I was going to climb back and take life by the horns. This was my duty, I felt....having been given a second chance.
However, life has a way of putting things in perspective, and losing the life you had planned for yourself has an interesting way of tossing you into a humble tailspin. It's gut wrenching, soul-consuming, heartbreaking and messy. There is no guidebook for helping to climb your way back and finding your life direction. As I companion patients and families through these difficulties through my CPE experience at Meriter Hospital, I share these struggles with nearly everyone I meet. It occurs to me every day that what matters most is not what we achieve, how much money
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Climb on, Dan-o! |
Yet.....This IS THE ESSENCE of the life-adventure. It is risky to love someone so much and to lose them. The more we open ourselves up to joy, wonder and deep connection, the more we subject ourselves to loss and suffering. The greater the summit, the greater the risk. Ask any adventurer though....and they will tell you that the summit and the JOURNEY are ALWAYS worth the risk.
I am thankful for our friend Dan's presence in our lives. His kind, humble, compassionate heart, youthful vigor, lust for life and amazing friendship will be truly missed. Our hearts continue to hold Dan's family and his wife, Judy close, as we learn more about this new kind of strength required in the adventure which lies ahead. The strength of letting go, and climbing on....
Monday, November 30, 2015
Four Years...
I guess you could call this an obligatory post, as it comes on the four-year "trauma-versary" of my climbing fall. I have not posted regularly for a while....but given today's significance, I figured I should.
It has been a whirlwind, for sure. I have learned so many things and discovered many corners within myself which have made me a stronger, much more stubborn, compassionate, and resilient person. I have met so many amazing people as a result of this journey....and I am grateful for so many things.
Yet rebuilding with a "new normal" is not without its challenges. We keep on, keeping on. Climbing is a great metaphor, because this is what we do. We forge ahead....climb back onboard, and embrace the struggle. I'm proud of being part of this subset of the population....the survivors. There are a lot of us, for sure. If there is anything I can offer after rising from the ashes, so-to-speak, it is a sense of hope. I'm not talking about the Pollyanna sort of hope, and I'm not talking about achieving anything. The hope I'm referring to resides in our day-to-day relationships with one another and the courage to continue despite the struggle. As Brene' Brown states in her book Daring Greatly, to be "out in the arena" and unashamed of our vulnerability.
So....I figured, why not embrace the significance of today by climbing? Truthfully, it was a hard day. I got on a 5.10+ route I had done before and as I neared the top (and the crux) I just sorta shut down. No warning.....the "four year" mark just hit me. Life is different. I'm still adjusting. Yes, I'm still climbing! If there is any way I can throw out there the tenacity to not give up......I'm hurling that into the universe. For everyone embracing challenges in their life right now, I offer the encouragement to breathe, connect, and just....KEEP CLIMBING!
Thursday, October 29, 2015
Stella!!! Proof of the Healing Power of the Outdoors....
I haven't posted in a while, but I felt this story was compelling enough to share. It has been a mini-confirmation of knowing first hand, the healing power of the outdoors.
So....Meet Stella.
So....Meet Stella.
We call Stella our "old girl". She is 17 years old, missing all but three teeth, is completely declawed (which we hate), and a cranky old lady. She's got a little tumor / cyst on her leg, is very inquisitive,and is quite the talker. In fact, she has been known to say such words as "Mama" and "Elmo", and will actually answer us when we speak to her in conversation.
A couple of months ago, we thought Stella was dying. She showed all the signs: accidents around the house, not eating or drinking, lacking in energy, lethargy.... all the telltale signs we have seen before with our previous lovely feline, Dylan. We took Stella to the vet (who basically told us she was very old and arthritic, and to have a litter box on every floor), and brought her home. I commented to the family, "I think it might be time for kitty hospice."
Stella had been an outdoor cat in her toddler years, so she always had a longing to get back into her lifestyle of catting around (pun totally intended). However, for her safety we had kept her indoors, since we live in an area where there are coyotes, raccoons, fox, hawks, and other wildlife who would tear her apart in a heartbeat if given the chance. Since we felt she was nearing the end, we decided we would bring her outside with supervision....to enjoy whatever time she had left.
Stella loved basking in the sun, with her eyes half-closed and sniffing the breezes. She was totally in her feline geriatric element. We felt we could put Stella on a leash and keep an eye on her, allowing her to soak in the joy of being outside once again. It totally took us by surprise when our toothless, clawless girl caught a bird! (Gasp!) Luckily, the little swallow was only very stunned and shaken up. Scott took the little feathered friend away from the deck and placed him safely into an abandoned nest in a tree at the edge of the yard. He flew away later, thank god. But Stella? She was quite happy with herself and was now prancing around like a furry little queen.
And.....Stella has returned to her vocal, inquisitive, vital (albeit geriatric) feline self. Coincidental? I don't think so. I have seen again and again how folks are imbued by a new sense of purpose and vitality just by getting outdoors. Since my accident, I personally have felt depression lift and pain lessen when I'm doing my thing.....hiking, climbing, kayaking, or just being outdoors. As always, the greater the scenery, the better. But the sun, the breeze, the elements...they're healing. Our Stella has proven it.
We don't know how long our old girl will be with us...but we are glad she can enjoy the life-giving power of nature. Now it will just be our job to protect the birds.
(This post has been brought to you by the "Black Cats Aren't Scary" Society in preparation for the Halloween Holiday.)
Wednesday, April 22, 2015
It's about the JOURNEY
Sometimes it's hard to remember that life is a JOURNEY, not a destination, especially in our goal-focused and results-driven world. This year Scott and I celebrated our 10th wedding anniversary. So much has happened in 10 years! This year we celebrated by climbing our first multi-pitch (as an amputee) at Red Rock Canyon in NV. It was such a memorable experience.......
Looking back over the past 10 years...... and celebrating!
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8 Year Wedding Anniversary |
10th Wedding Anniversary....Celebration of Survival and
ADVENTURE
CLIMB ON!
Friday, April 17, 2015
Genetics, Prosthetics and Prozac, Oh My!
One of the things my mom used to say to me whenever I complained about difficult situations or encountered adversity was "Hey, it builds character!" I used to think....yeah right. Character. That is the consolation prize for falling flat on your butt over and over again, while you watch folks
around you go about their smiling lives and brag about their achievements (Okay....I'm adding drama here.) Truthfully though....It is times such as this past Monday, as I limped in to see my hairstylist and her saying to me: "My Gosh Chris, it seems like you're living a nightmare that just doesn't end..." that I think, "Oh, wow....things are really pretty stressful in our lives, I guess. Hmmm."
We just keep on, keeping on.....don't we?
I've been working on getting a new leg for the past five months, and it has been frustrating. Why....you ask, has it taken this long? Well....I have these little beings called children. And they have some special needs. Especially my son. He is constantly a challenge. And, I am trying to carve out some kind of career / employment. Kind of.....because it is hard to earn money when you don't know from one day to the next what your walking situation will be, if you'll get a call from school about your son's behavior, or.....the list goes on. Appointments are kind of like a job, actually.....for me, and my kids. Every. week. And they don't stop.
So I'll say it.....Parenting is hard, and being an amputee is hard...at least right now. Having any kind of uniquely challenging situation can be tough because it can tend to be all consuming. I miss having a "typical life" and doing stuff I see other folks doing. But.... at least I'm building character!!! And I'm trying to etch some positive on the situation.....trying to make my contribution by taking on projects that sort of of help people because, well....it keeps me from navel-gazing. Or getting depressed. Those things can wind you up in a bad way (like curled up in the fetal position or staring into space for long periods of time....or worse.). There's nothing heroic or special about it.....it's called self-preservation. We grit our teeth and do what we do to keep forging on.
On the Saturday before Easter, this happened:
Yes, my hubby was a stressed-out, distracted driver (thought the woman in front of him was yielding, not stopping.) The situation in our house prior to hitting the road was as follows: Our son was melting down and heel-dragging in a major way. I was having leg issues and wanted to chuck the dang leg across the room. Earlier in the day I read a story about a woman who has been an amputee for four months, and she was running. That's good, I know....but I was feeling sorry for myself because of how a neuroma is keeping me from getting a good socket fit and doing things I love, like running. I was a crabby mess and just wanted things to be easy again....like they used to be (before my accident, before kids). And I took it out on my husband (collective....aw, poor guy.) I yelled and swore about my f '-ing leg, and carried on about my son's behavior sucking us in like a "black hole." As usual, we were running late.....
Interestingly, the woman who we rear-ended was crying about her stressed out life....how she didn't need this right now, as she has a son at home with special needs (the counselor in me read between the lines....thinking, probably financial struggles, child care issues, that fried feeling that I also knew very well). I wanted to say "I know honey....I know...", but since we hit her, I wasn't in an appropriate space to offer psychotherapy. I simply thought to myself, Wow....this is kind of like the movie "Crash" in real life. We were all okay. The Jeep, not-so-much. It was a good wake-up call reminding us to take it easy, slow down, and be more "present" in the moment.
These "issues"....well, they simply morph. In the old days (eg. my early parenting days) I had a belief that we would turn a corner with my kiddo's issues. He would see the light, we would find the perfect medication, teacher, or therapy. The same temptation holds true for being a survivor of trauma... The belief that some healing magic bullet is right around the corner. Nope. Not the case.
So, we had our annual appointment with the Craniofacial Team at Children's Hospital. Luckily, the folks on the team know us well, and can eyeball our kiddos from a clinical perspective every year. Jade is your typical, happy-go-lucky kid who happens to have a bilateral cleft. Kai....well, he is a can of worms. There is some reason to think that further genetic testing will reveal what is going on with him....why he has so many quirks, odd physical characteristics, delays and behavioral challenges. We will be repeating some neuro-psych testing as well, since the last report was done when Kai was four. AND...we will gear up for a bone-graft surgery in August, continued orthodontic treatment, and behavioral interventions at school. These are times where it really does take a village.....
We have an IEP in place and are looking forward to a better leg soon. Hopefully. Who ever coined the phrase: When momma ain't happy, ain't nobody happy? Unfortunately that does seem to apply. My husband, bless his heart, does his best.....and we are lucky in that way. We embrace our family oddities and treasure them, believe it or not. Our sense of humor remains intact the majority of the time. (Except the times when I'm throwing my leg across the room.)
Other parents of kids w/ special needs struggle, and other amputees struggle, and well....everyone has their hard time now and again. Truly, we ALL need a village!
So that character thing. I guess I've got some equity in the character department. I wish there was a barter system though...... because I'd love to trade character for contentment and peace one of these days. I think I would even settle for boredom.
around you go about their smiling lives and brag about their achievements (Okay....I'm adding drama here.) Truthfully though....It is times such as this past Monday, as I limped in to see my hairstylist and her saying to me: "My Gosh Chris, it seems like you're living a nightmare that just doesn't end..." that I think, "Oh, wow....things are really pretty stressful in our lives, I guess. Hmmm."
We just keep on, keeping on.....don't we?
I've been working on getting a new leg for the past five months, and it has been frustrating. Why....you ask, has it taken this long? Well....I have these little beings called children. And they have some special needs. Especially my son. He is constantly a challenge. And, I am trying to carve out some kind of career / employment. Kind of.....because it is hard to earn money when you don't know from one day to the next what your walking situation will be, if you'll get a call from school about your son's behavior, or.....the list goes on. Appointments are kind of like a job, actually.....for me, and my kids. Every. week. And they don't stop.
So I'll say it.....Parenting is hard, and being an amputee is hard...at least right now. Having any kind of uniquely challenging situation can be tough because it can tend to be all consuming. I miss having a "typical life" and doing stuff I see other folks doing. But.... at least I'm building character!!! And I'm trying to etch some positive on the situation.....trying to make my contribution by taking on projects that sort of of help people because, well....it keeps me from navel-gazing. Or getting depressed. Those things can wind you up in a bad way (like curled up in the fetal position or staring into space for long periods of time....or worse.). There's nothing heroic or special about it.....it's called self-preservation. We grit our teeth and do what we do to keep forging on.
On the Saturday before Easter, this happened:
Yes, my hubby was a stressed-out, distracted driver (thought the woman in front of him was yielding, not stopping.) The situation in our house prior to hitting the road was as follows: Our son was melting down and heel-dragging in a major way. I was having leg issues and wanted to chuck the dang leg across the room. Earlier in the day I read a story about a woman who has been an amputee for four months, and she was running. That's good, I know....but I was feeling sorry for myself because of how a neuroma is keeping me from getting a good socket fit and doing things I love, like running. I was a crabby mess and just wanted things to be easy again....like they used to be (before my accident, before kids). And I took it out on my husband (collective....aw, poor guy.) I yelled and swore about my f '-ing leg, and carried on about my son's behavior sucking us in like a "black hole." As usual, we were running late.....
Interestingly, the woman who we rear-ended was crying about her stressed out life....how she didn't need this right now, as she has a son at home with special needs (the counselor in me read between the lines....thinking, probably financial struggles, child care issues, that fried feeling that I also knew very well). I wanted to say "I know honey....I know...", but since we hit her, I wasn't in an appropriate space to offer psychotherapy. I simply thought to myself, Wow....this is kind of like the movie "Crash" in real life. We were all okay. The Jeep, not-so-much. It was a good wake-up call reminding us to take it easy, slow down, and be more "present" in the moment.
These "issues"....well, they simply morph. In the old days (eg. my early parenting days) I had a belief that we would turn a corner with my kiddo's issues. He would see the light, we would find the perfect medication, teacher, or therapy. The same temptation holds true for being a survivor of trauma... The belief that some healing magic bullet is right around the corner. Nope. Not the case.
So, we had our annual appointment with the Craniofacial Team at Children's Hospital. Luckily, the folks on the team know us well, and can eyeball our kiddos from a clinical perspective every year. Jade is your typical, happy-go-lucky kid who happens to have a bilateral cleft. Kai....well, he is a can of worms. There is some reason to think that further genetic testing will reveal what is going on with him....why he has so many quirks, odd physical characteristics, delays and behavioral challenges. We will be repeating some neuro-psych testing as well, since the last report was done when Kai was four. AND...we will gear up for a bone-graft surgery in August, continued orthodontic treatment, and behavioral interventions at school. These are times where it really does take a village.....
We have an IEP in place and are looking forward to a better leg soon. Hopefully. Who ever coined the phrase: When momma ain't happy, ain't nobody happy? Unfortunately that does seem to apply. My husband, bless his heart, does his best.....and we are lucky in that way. We embrace our family oddities and treasure them, believe it or not. Our sense of humor remains intact the majority of the time. (Except the times when I'm throwing my leg across the room.)
Other parents of kids w/ special needs struggle, and other amputees struggle, and well....everyone has their hard time now and again. Truly, we ALL need a village!
So that character thing. I guess I've got some equity in the character department. I wish there was a barter system though...... because I'd love to trade character for contentment and peace one of these days. I think I would even settle for boredom.
Saturday, April 4, 2015
Telling Our Stories
Part of what prompted this blog post is the publishing of an article in Milwaukee Magazine this month about my accident, and how we began an adaptive climbing program with Adaptive
Adventures in the Milwaukee area. Overall, the article is great....but I struggled to see in print, a comment I made in reference to how my accident happened: “I was really wound up from taking him to medical appointments, you know, signing over my life to take care of [my son], who had some behavioral challenges as well,” Even prior to doing an interview about my experience, I struggled as to how to broach the subject of my parenting challenges and how the reality of the intense stress I felt [parenting a challenging child] led to the judgment error I made almost 3 1/2 years ago. I struggled with the perception that I might have some resentment toward my child, or that my comments might be viewed as blaming, somehow. Nonetheless, I kept coming to the same place understanding in my heart....thinking, things happened as they did. This is my truth.
And thus, over the past 3 1/2 years I have shared some variation of how parenting stress played into my accident, but I have never written about it. At this point I feel I have earned some degree of respect as someone who has weathered struggle....mostly as a survivor of [physical] trauma (and if you can't believe a one-legged mom trying her best, who can you believe, right? ). What continues to occur to me most at this point is how I continue to be a parent of a CHILD who is a survivor of trauma. A child who brought a profound degree of trauma into our home when he joined our family. While I have struggled to make my way back to health from injuries, the scars imprinted on my son's psyche after suffering over two years of horrible orphanage neglect are less easy to recover from. We continue to deal with them every. day. still. I cannot begin to tell you in a single post, how mind-wrackingly, soul-wretchingly difficult it has been to parent our son, who suffers from a laundry-list of issues (Developmental Trauma / Reactive Attachment Disorder (RAD), PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) , ADHD, Speech and Language Disorder, and others). It is tempting to think, "Why wouldn't we be the perfect parents to parent a challenging child? We have backgrounds in mental health / counseling, psychology and education....you'd think the match would be perfect, right?" Um.... Realistically, the daily grind of parenting a child whose life-goal has been to keep from attaching, to prove how unlovable he is, and whose brain is still stuck in survival mode 75 percent of the time is very taxing on a mother and a family. All sugar-coating aside....every day is a struggle. I am at the stage (call it maturity) where I don't care about impressing others with a Susie-Homemaker mommy image or a need to prove something. I was and am a struggling mom...with a child with special needs....in a family trying to do our best. I am also parenting with a disability, which makes life quite interesting. One of the good things that comes out of surviving something tough is that it helps keep things in perspective while peppering one with a good dose of grit.
"That" day...
People will often ask what came into my mind at the moment of my fall. Truthfully, after the initial "oh shit" moment and self-berating over the "stupid" mistake of not clipping in, as I laid on the floor I lamented over and over to the gym manager how stressed out I had been to the point of being completely fried. Over and over again, I said "you have no idea how stressed out I have been. Oh my god...I can't believe I did this. I have been so, so stressed in parenting this kid." The day had been packed with appointments, my kiddo had just had his three-hour long in-home ABA (autism) therapy that morning, and I thought I'd squeeze in an hour or so of climbing before another appointment with the developmental specialist. Yes, I had been horribly injured, but my mind immediately raced to all of the all of the responsibilities I needed to reschedule. I never lost consciousness....in fact, I could give the phone numbers of places needing to be called to the gym staff, while still in shock. It wasn't until I was safely strapped into the ambulance on an IV drip of dilaudid that I could take a deep breath and tell myself: "Okay....this is your wake-up call. Now you're gonna NEED to take care of YOU."
After all of the ugly stuff that went on in the ER and I was wheeled up to my hospital room, I verbalized to the nursing staff that it felt good to finally, finally have some peace. Obviously, because I had these bad injuries I did not even feel guilty this time. (guilt is another bad habit we moms of kids with special needs pick up). While I had been on perennial auto-pilot and constant worry-mode about my son (in trauma-language this state would be called hypervigilance [Here is a good article on that: Autism Moms Have Stress Similar to Combat Soldiers. ), I realized that I had now been forced into a situation where I needed to confront this reality. Luckily (yes, luckily) I would be going home to a hospital bed in the living room, and a competent group of therapists from Easter Seals would continue to work with my son. In addition, family would be needing to step up to the plate and help out as well, which gave everyone a taste of what it was like to deal with the challenging behaviors of my kiddo on a first-hand basis.
Present-Day
Perspective is a good thing, and sometimes the enduring of a life-changing experience gives a person a kind of permission, or authority, if you will, to be taken with a bit of seriousness. My hope is that by sharing my story, folks will begin to understand just how difficult it can be for parents who take care of children with special needs, and how our lives are affected. As a parent who sits on an advisory committee at Children's Hospital of WI, one of my main goals has been to champion the need for more emotional parent support. (Emotional support, peer support, or anything which is not "medical" per-se, does not receive nearly enough funding or attention. Apparently, specialists can medicate and treat our children and the parents will magically patch themselves together somehow.) It has taken a horrible accident to be able to speak honestly about this, and to be at a point where I can truthfully admit these struggles. (Parenting a child with attachment challenges and a history of trauma / neglect is a topic worthy of its own post, for sure.)
There have been several learnings over the past few years.....
Adventures in the Milwaukee area. Overall, the article is great....but I struggled to see in print, a comment I made in reference to how my accident happened: “I was really wound up from taking him to medical appointments, you know, signing over my life to take care of [my son], who had some behavioral challenges as well,” Even prior to doing an interview about my experience, I struggled as to how to broach the subject of my parenting challenges and how the reality of the intense stress I felt [parenting a challenging child] led to the judgment error I made almost 3 1/2 years ago. I struggled with the perception that I might have some resentment toward my child, or that my comments might be viewed as blaming, somehow. Nonetheless, I kept coming to the same place understanding in my heart....thinking, things happened as they did. This is my truth.
And thus, over the past 3 1/2 years I have shared some variation of how parenting stress played into my accident, but I have never written about it. At this point I feel I have earned some degree of respect as someone who has weathered struggle....mostly as a survivor of [physical] trauma (and if you can't believe a one-legged mom trying her best, who can you believe, right? ). What continues to occur to me most at this point is how I continue to be a parent of a CHILD who is a survivor of trauma. A child who brought a profound degree of trauma into our home when he joined our family. While I have struggled to make my way back to health from injuries, the scars imprinted on my son's psyche after suffering over two years of horrible orphanage neglect are less easy to recover from. We continue to deal with them every. day. still. I cannot begin to tell you in a single post, how mind-wrackingly, soul-wretchingly difficult it has been to parent our son, who suffers from a laundry-list of issues (Developmental Trauma / Reactive Attachment Disorder (RAD), PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) , ADHD, Speech and Language Disorder, and others). It is tempting to think, "Why wouldn't we be the perfect parents to parent a challenging child? We have backgrounds in mental health / counseling, psychology and education....you'd think the match would be perfect, right?" Um.... Realistically, the daily grind of parenting a child whose life-goal has been to keep from attaching, to prove how unlovable he is, and whose brain is still stuck in survival mode 75 percent of the time is very taxing on a mother and a family. All sugar-coating aside....every day is a struggle. I am at the stage (call it maturity) where I don't care about impressing others with a Susie-Homemaker mommy image or a need to prove something. I was and am a struggling mom...with a child with special needs....in a family trying to do our best. I am also parenting with a disability, which makes life quite interesting. One of the good things that comes out of surviving something tough is that it helps keep things in perspective while peppering one with a good dose of grit.
"That" day...
People will often ask what came into my mind at the moment of my fall. Truthfully, after the initial "oh shit" moment and self-berating over the "stupid" mistake of not clipping in, as I laid on the floor I lamented over and over to the gym manager how stressed out I had been to the point of being completely fried. Over and over again, I said "you have no idea how stressed out I have been. Oh my god...I can't believe I did this. I have been so, so stressed in parenting this kid." The day had been packed with appointments, my kiddo had just had his three-hour long in-home ABA (autism) therapy that morning, and I thought I'd squeeze in an hour or so of climbing before another appointment with the developmental specialist. Yes, I had been horribly injured, but my mind immediately raced to all of the all of the responsibilities I needed to reschedule. I never lost consciousness....in fact, I could give the phone numbers of places needing to be called to the gym staff, while still in shock. It wasn't until I was safely strapped into the ambulance on an IV drip of dilaudid that I could take a deep breath and tell myself: "Okay....this is your wake-up call. Now you're gonna NEED to take care of YOU."
After all of the ugly stuff that went on in the ER and I was wheeled up to my hospital room, I verbalized to the nursing staff that it felt good to finally, finally have some peace. Obviously, because I had these bad injuries I did not even feel guilty this time. (guilt is another bad habit we moms of kids with special needs pick up). While I had been on perennial auto-pilot and constant worry-mode about my son (in trauma-language this state would be called hypervigilance [Here is a good article on that: Autism Moms Have Stress Similar to Combat Soldiers. ), I realized that I had now been forced into a situation where I needed to confront this reality. Luckily (yes, luckily) I would be going home to a hospital bed in the living room, and a competent group of therapists from Easter Seals would continue to work with my son. In addition, family would be needing to step up to the plate and help out as well, which gave everyone a taste of what it was like to deal with the challenging behaviors of my kiddo on a first-hand basis.
Present-Day
Perspective is a good thing, and sometimes the enduring of a life-changing experience gives a person a kind of permission, or authority, if you will, to be taken with a bit of seriousness. My hope is that by sharing my story, folks will begin to understand just how difficult it can be for parents who take care of children with special needs, and how our lives are affected. As a parent who sits on an advisory committee at Children's Hospital of WI, one of my main goals has been to champion the need for more emotional parent support. (Emotional support, peer support, or anything which is not "medical" per-se, does not receive nearly enough funding or attention. Apparently, specialists can medicate and treat our children and the parents will magically patch themselves together somehow.) It has taken a horrible accident to be able to speak honestly about this, and to be at a point where I can truthfully admit these struggles. (Parenting a child with attachment challenges and a history of trauma / neglect is a topic worthy of its own post, for sure.)
There have been several learnings over the past few years.....
- Self-care is not an OPTION. It is a NECESSITY.
- Remaining ACTIVE is healing for the body and the soul.
- We NEED each other, and we need to stop pretending that we've got it all together...because let's face it, none of us do.
- I needed (and maybe WE need) to stop feeling as if I am / we are not doing enough....for our children, for our jobs, etc., and replace that feeling with self compassion.
- There is power in finding and embracing your truth and your passion.....which can be used to ignite new ideas..
- It is very important to refrain from judgment, and try to embrace the belief that we all do our best, given the circumstances within which we find ourselves. We need to be compassionate with others as well as ourselves.
- Our stories are powerful, and no one should be ashamed of their story / their truth.
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