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.....  

• 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.

One Year "Ampu-versary" and Looking Ahead...

It occurred to me earlier in the day (once I realized the date) that today marks exactly one year since my amputation.   What a year it has been!

Life as an amputee.....each day brings a new and 
different challenge! 

The year has had its ups and downs for sure, and while it has been filled with frustrations, excitement, learnings, grieving, and constantly morphing expectations, it has also been a rich year packed with some wonderful experiences.  While one year ago I had envisioned that I would be crushing life's obstacles along the way by forging ahead in this new "amputee" reality, it has really become more of a gradual embracing of what life really is......

As always, there is an ideal as well as the real.  There are things which we strive for and realities we learn to accept.....and sometimes, coming to terms with reconciling these can be challenging.   Keeping this in mind, these are my goals for the new year: 

To be Gentle.  I have strongly considered getting a tattoo under my collarbone reading the simple words:  Let It Be.   One thing I have learned from healing from trauma and adjusting to life as an amputee, is that the human body has a way of healing itself on its own timeline.   I tend to get stubborn and judge myself harshly if I'm not able to meet the goals I set for myself as quickly or easily as I had envisioned.  Having grown up a competitive athlete, this is a tough pill to choke down because I had always thought that hard work and dedication generally win out in the end.   While that IS often the case, there is no way I can force my leg to not change shape (affecting socket-fit and comfort...expected in the first year or two), or to deny that I've got some nerve damage that is permanent and long-lasting.   At this stage of the game, my driven nature sometimes does not serve me well.....I'm much better off listening to my body and laying off of the self-judgment (easier said than done.).   Of course, stubbornness is still my default-mode (probably always will be, dang it!)     

To Seek Deep, Abiding Joy.   When dealing with stuff that can get stressful quickly and easily (such as behavioral challenges with my kiddos, a socket that is fitting sub-optimally, or persistent back pain), finding deep, abiding joy is hugely important.   These moments can be found in shared heartfelt conversations, rich and meaningful experiences with friends and family, getting crazy and silly with my hubby and kids, connecting on a "soul" level with those who really "get" you, or laughing with someone so hard that you pee in your pants.  For me, it has meant finding my tribe and embracing the understanding that life with a disability CAN really suck, but it can also be beautiful, rich and deep......and yes, extremely FUN too!

To bring hope.   I know it sounds moralistic and simple, but the concept of hope is delicate and powerful at the same time.   I remember clinging to stories shared with me by others who had gone through very difficult circumstances, and these stories were like manna from heaven.   They stayed with me even during really painful, challenging times, or days when I wanted to give up. 

The most therapeutic experiences for me the past few years have been getting to know other "survivors," through the adaptive climbing program we've started, and the trauma survivor peer support program we are creating at Froedtert Hospital.    It is POWERFUL to be with people who you know KNOW struggle.....To share in the experience of their getting up on the rock / wall, climbing....perhaps doing something they never believed they would ever be able to do.   To give folks an experience of embracing life fully and doing something that feels amazing....THAT to me, is sharing hope.   Every night we have a climbing program, I leave feeling exhilirated and empowered from hearing the stories of others.

When people are newly injured and grasping for any last shred of reassurance (as I remember all too well), to be able to say, "Look, I know this is reeeally hard.  It will be hard.  But you WILL get through this....I know you will, and it will be worth it." is a place of great honor and priviledge.    When I'm having a tough day emotionally or am dragging, connecting with newly injured survivors helps me to remember how far I have come, which is pretty important (it is easy to forget!).  It is helpful to know that we are not alone, as we look around and are hit smack-in-the-face with how our lives have changed.      

To keep moving.   While this is probably an easy goal to list, the temptation to inactivity is constantly there.   I am intimately aware of the propensity toward inertia and depression that is always right around the corner, lurking behind every excuse: "I'm too tired, I'm too sore, my leg isn't fitting well, it is too cold to go out, etc.).   It is true that exercise boosts our levels of endorphins, which are our body's natural pain killers.   It is also true that movement is one of the best ways to keep arthritis at-bay (one of the natural by-products of lots of orthopedic injuries unfortunately.)   So oh yeah, doing whatever I can to keep my mind and body active will continue to be important.

As 2015 begins, I am thankful for all of the amazing people I have met, the cool experiences I have had, and I look forward to what lies ahead.  

  

Three Years

Earlier in the day I had to write a check, and when I asked what the date was, it dawned on me.....Wow, today is the third year anniversary of my accident.   I think it is a good thing that this particular date did not loom

Red Rock Canyon with friends, Nov 30, 2012

over me as it had the first year (I had to plan a trip to NV for that one to keep occupied...and it was great.)   Still, November 30th marks an important life change, and I am honoring that today.

What. a. whirlwind.   Seriously.   I think I have only come to realize recently that I no longer feel like a "patient" (as I had for over two years).   Planning for and recovering from multiple surgeries can really wear on a person and a family.  Not that prosthetic adjustments aren't a drag, but the experience is much different....with the added perks of decreased pain when walking, and support from the amputee community.

Scott and I frequently comment on the increased amount of gray in his hair and sense of tiredness we both feel.  Some of that has to do with having kids as "middle-agers", but a great deal of the fatigue also has to do with lingering issues from my accident.  It can be tempting to long for the pre- accident body (okay, I do every day), but I try to focus more on what I have gained. 

A great sense of community.   Nothing quite brings people together like sharing struggles and triumphs.    And just as I curse a bad leg day or high back pain day, I am reminded of the others who I have met throughout the past three years who are also great warriors in the physical healing journey.   We are a tattered bunch, but I've met so many folks who really rock!

A better handle on priorities.   I used to sweat the small stuff.  A lot.   The things that used to drag me down don't have the grip that they used to.  That is an awesome thing.   Life is too short to worry about stupid shit.

A different focus.   Kind of like savoring a good meal, I'm trying to savor life experiences.   It is a focus on enjoying the journey, with less emphasis on the destination than the rich experience of getting there.    This pertains to parenting as well as all kinds of goals, and is a major shift in thinking.    (It also feels pretty counter-cultural.)

Appreciation.  For my family, friends, and the health of my loved ones.   For new relationships gained.  For the seasons and nature.   For my pets (yes, snuggling with a purring kitty is so therapeutic!).  For the fact that I live in a place where I don't need to worry about war or where my next meal will come from.  For the kindness of people.

Cool Opportunities.   Because being active, for me, is like breathing, it has been super cool to bring my passion for adventure and climbing to others with physical disabilities.   I am enjoying the relationships I am making, and watching the possibilities unfold!

I saw this a while ago, and it seems pretty simple, but it is very true......

 

 

Keepin' it Real

I've been doing a lot of thinking lately about how tempting it can be to view folks with disabilities or physical challenges as victorious, or having somehow "arrived" at a great place despite their struggles and challenges.   While I soooo understand this tendency from a personal perspective, I have come to understand that truly, there is another reality that most of us do not see or fully comprehend, which is understandable.  We don't want to see pain.  We don't want to see struggle.  We want the Hollywood version which makes us feel better......... So, the main intention of this post is to stress the importance of keeping it real.  

Let me start by sharing what an incredible summer we had.  It was active, and full....and challenging.   In many ways I look at how it felt "victorious", but know that it was also very hard.   Dealing with a new reality IS hard  .....and it is something that I know I am not alone in.  

Behind the smiles, great scenery, and hands in the air, here's what you need to see:   I'm tired and sore.  I miss the old body.  Wearing a prosthetic liner in the summer sucks (I had to literally pour the sweat out more times than I can count.), Crabby kids and hurtin' mommy is not an optimal combination.   A "good leg day" is not always guaranteed, and neither is a day without back pain (on a typical day).   Trying to enjoy the process of finding the "new normal" is easier said than done.......but we try.  We keep plugging on, and try to grab a strong hold of the moments of gratitude we find along the way.

 It is a PRACTICE....cultivating gratitude.   The love and kindness of people and the beauty of nature are great strongholds.   They help to pull us through and give us fuel to keep going, thank god.  

I was asked to write about my experience in the Trauma Survivor's Network, Fall Newsletter, and you can read that here.   I've had the pleasure of helping to create a peer-support program at Froedtert Hospital and am delighted that it is going well.  We have some great volunteers...other survivors who understand what it is like to keep going, despite difficulty.   Recently we've received some great feedback from staff and patients there!  This always helps to validate the importance of sharing how it is.....and keeping on, keeping on.     

As is usually the case at this time of the year (when the weather starts to turn, and I begin to become more reflective), I found that it would be a good time to put together a gratitude collage.   This is by no means, exhaustive.....and it will be growing.    There are times when I think about how awesome it would be to return to the "old" (pre-accident) me.   Then I think about all of the great relationships that have resulted, the amazing people I have met, and the profound experiences I have had....AS A RESULT of my accident.   I would not take those back.   

High-five my warrior-friends...and as always......CLIMB ON! 

Chris  

The Cool Folks You Meet...

A few weeks ago, my daughter asked:  "Mommy, is it fun being an amputee?"   After chuckling for a moment with a raised eyebrow in utter disbelief that she'd ask such a question, I gathered my thoughts and replied:  "Um...I wouldn't exactly call it fun.  But I guess there are parts that are:  You get to pick out the kind of foot you want, you can pick out cool patterns to laminate into your socket, and oh....we get to meet so many really interesting people."    "Yeah....that's what I mean."  Jade said... "It's neat to meet all kinds of cool people who do such amazing things."   

So I have pondered that comment frequently......and, when I'm in a space where I'm frustrated for some reason (which happens a lot, believe me)  I think about all of the awesome relationships and experiences I am collecting.   Pretty damn cool.  

DWTS' and snowboarding paralympian, Amy Purdy,
Accomplished para- climber, Ronnie Dickson, and moi.at
Prosthetic and Orthotic Associates

I am down at Prosthetic and Orthotic Associates this week for a new socket (I am the "incredible shrinking woman"....at least in my prosthetic socket.).  It just so-happened that Amy Purdy (from Dancing With the Stars) was also here yesterday and today having some adjustments done.   We ended up having some cool discussions about keeping a positive attitude, how to walk around on the toes of a swim-foot, and expectations with limb-shrinkage as a BK amputee.   She really is quite the lady, with lots of interesting developments on the horizon....one of them, writing a book.   The casual atmosphere at POA is great for just sitting around and chatting about all kinds of things, which is really important.

 

Ronnie Dickson works at POA as a prosthetist, and is also an awesome climber.   He's an AK (above-knee) amputee who I had connected with initially when looking for information about climbing in a prosthesis.  As I began to share my various prosthetic frustrations with him, he encouraged me to come to POA because of the incredible work they do in an expedited fashion, as well as their great track-record with highly active and tough-to-fit amputees.    When I got to POA and began to meet all of the people, the energy was palpable.    Dozens of amputees, all with amazing stories.....some with prosthetics, some crutching or wheeling around, hanging out in the same space just getting to know each other.   A "bonus" is the fact that a lot of the prosthetists at POA are themselves, amputees....so they get it.  A healthy, good-natured banter abounds, and folks are constantly sharing about how they love their jobs.    It's the atmosphere their CEO, Stan has created and fostered....and really works.

 

It has been very neat to see a lot of the researching and efforts I put time into while recovering, finally coming to fruition (I was the research-demon on the net while on bedrest!  I guess while my body was laid-up, the brain worked overtime).   The Trauma Survivor's Network has partnered with Froedtert Hospital, and a peer support visitation / support program is being implemented.  We currently have four very cool survivors of trauma on-board (me being one of them) who will finish up training this summer and launch the program within the month.   Pretty exciting!   We are starting up a climbing program in partnership with Adventure Rock and Adaptive Adventures, and will have a climbing wall at the Milwaukee Adaptive Sports and Recreation Expo on July 26th.  I've connected up with the folks at Paradox Sports in CO for some good advice on starting a climbing program in our area as well.   We are lucky to have the support of the Director of Clinical Services in the Physical Therapy Dept. at Carroll University, who has decided to weave-in the idea of educating her students in the power of using adaptive sports and recreation as part of the rehabilitation process (I had the pleasure of sharing [through the lens of understanding recovery to be a "mind/body/spirit" experience] with her graduate class last month, and will again in the fall.)  Luckily, these students will learn first-hand the power of connecting through physical activity and adventure sports. 

 

In all of these experiences I have met the most interesting, colorful, fascinating people, and the experience has been so enriching.   

 

So, when I grumble about how frustrating it is to have undergone 2+ years of atrophy and various levels of deconditioning, how I miss the ease at which I used to get out of bed in the morning, or how I hate to pour sweat out of my liner (which happens in the summer....pretty gross), I pause to remember that I'm part of an awesome group of soulful survivors, which is pretty cool.     



 



Kinda like....another kid

We had reason to recall recently, the scared shitless slightly comical situation whereby I had a positive pregnancy test result on the morning of my amputation surgery (pregnancy testing is routine / mandatory for women of child-bearing age prior to surgeries).   Thankfully, the test turned out to be a false-positive, but for about an hour....while waiting for confirmation of the blood test....we spoke of mother nature's sick sense of humor.    Frequently when asked how we'd feel to be "blessed" with another child, my standard response has been "Our two are kind of a handful...more than enough work for a gimpy mom and two ADHD-inclined parents.  So, no thank you.  We're good."

Oddly, over the last couple of weeks  it has occurred to me just how much my leg situation IS very

much like having another child.  Yes....a very consuming, energy-draining, high-maintenance and often colicky little turd that acts up at the most inopportune times.   

Take for example, schlepping around the eternal diaper bag.   Yup....carrying what I call my leg stash (a bag containing: prosthetic ointment [eg. Desitin], spray bottle of water/alcohol [for donning / doffing the liner], allen wrench [on-the-go foot adjustments], an array of various ply's of socks [volume fluctuations throughout the day...socks are necessary], pieces of moleskin to help with occasional socket trouble-spots, a cloth, and rubber gloves [ointment gets slimy and messy at times, and hand-washing facilities are not always nearby.].)  What do we do when our colicky little one needs a changing?   Find a bathroom, inconspicuous corner, or out-of-the-way place to take care of business....preferably with the least amount of attention possible.    Let's face it, no one likes to witness a foul-smelling diaper change or a leg-ointment application. 

Every morning....the dreaded routines (bottles, formula, diaper changes, etc.) take some time.....and it is time where you wish you could be doing something else, right?   The whole leg thing is similar....and while the leg does "mature" (relatively speaking), it will never outgrow this morning / evening ritual or become fully self-sufficient.  

We like to look back on our "pre-children" days, and will frequently comment that we used to be the kind of folks who were punctual.   Either we would be a couple minutes early, right on-time, or "fashionably late."  Everyone knows that children throw a monkey wrench into the deal, but a colicky stump is something most folks would have no idea about.   (....things like sweat, dietary and temperature changes will do it, as well as over-doing it, which I am prone to doing.  Guess I'm stubborn.).   It is not uncommon for the fam to wait because "mommy has to sock-up" or adjust a fit. 

The oldest child is typically the one to help out with the responsibilities of the new baby in the family, right?   Well, I guess Jade has lived up to that one too, as she'll often yell to me from another room, "Mommy, do you want me to bring you your leg?"  Luckily we laugh about these oddities.  I mean, what kind of parent asks their kids to fetch their body parts anyway?  

While all of these issues amount to being a pain-in-the-arsh at worst,   At best, I'm able to walk around, hike, swim, climb and enjoy a much better quality of life.  (Running is a longer-term goal)  I

knew that there would be frustrations at the outset and that I should expect a 6-month to one year adjustment period.   Thankfully, I think I'm ahead of the curve on this one....which is great.   It is nice to know I'm done with medical stuff and moving on with a new normal.  

 

Yes, I'm nursing this infant-limb which is going through all kids of changes, but life is good.   We're moving ahead! 

The AIT (Amputee in Training) Experience

We are entering our second week in Florida as part of our dual purpose trip:  Family vacation, and expedited custom leg fitting.   It has been an odd balancing act for sure.  

In regard to my prosthetic fitting, I knew that I would be in for a frustrating six months to one year, as all of the amputees I have talked with warned me that it would be an adjustment with fits and starts, peppered with a whole lot of adjustment and increasing doses of patience.   I'm not quite sure why I've got this tendency to always believe that through my sheer force of will I will be the exception to those expectations.   I can work my butt off, find the right resources, or gut through the difficult transitions more quickly and somehow be spared the ugly realities of the amputee experience.   

Don't get me wrong, for the most part my leg / ankle is pain-free. I have no problems with phantom pain, which can be bothersome and disabling.   I have every reason to believe that eventually I will be back to enjoying the active life I love.   However honestly, all sugar-coating aside.....the experience has been tough at times.

 It is Amputee Awareness Month, so I figured why not air some of the dirt that we as amputees experience.    Here goes: 

• Insurance hassles.   It's pretty obvious that folks need working limbs, right?   Well, unfortunately prosthetic coverage is one of the areas which falls through the cracks in terms of medical coverage.    The Amputee Coalition of America has initiated the Prosthetic Parity Bill, which aims to require fair health insurance access for amputees and provide a standard of care for prosthetic coverage.  It would be way cool to sign the petition asking senators and government reps to support this legislation.  Click HERE to support this effort, and if you do sign it, I'm sending a cyber-hug from the bottom of my heart on behalf amputees everywhere. This issue is huge.)  If you're interested in more advocacy, here's another petition:   Insurance Fairness Act for Amputees.
• Socket-fitting issues.   Probably one of the most challenging issues for a new amputee, if not THE biggest frustration.  I've learned that there is both an art and a science to prosthetic design, and it is critical to have a prosthetic provider which embodies the best practice possible in that regard.  The "right touch" combined with dedication and passion are critical in the relationship between patient and prosthetist, and folks are known to travel wherever necessary for that combination of attributes.   
• Shrinkage.  (No Seinfeld references here!) Within the first year all amputees undergo volume changes to their residual limb, which makes the fitting process a challenge (as well as continued documentation to insurance companies for those changes....see above.)
• Skin issues.   Like today.  I've got itchy red bumps on the back of my knee, likely due to a combination of having shaven earlier in the week and sweating under my liner.   They suck.  And its best to air out the leg to avoid aggravating the problem for a day or two, lest we complicate the problem.  Usually we hope to figure out the source of the problem (like shaving probably, in my case) and hope that this is part of the "leg adjustment" phase.
• Hairy Legs, baby!   Yup.... even in best-case scenarios, the little hair follicles scream "help me....I'm suffocating" under the silicone prosthetic liner.   So obviously, taking a razor to emerging hairs becomes even more problematic.   At some point I may attempt laser hair removal, but for now I get to be part Sasquatsch.  Oooo...sexy, hey?
• Sweat happens....and under the prosthetic liner, sweat becomes trapped.  Now consider that I am a 45 year old woman who is on the brink of menopause.....you get the idea.   After doing eight miles on the stationary bike a few weeks ago, I was able to gross out my entire family by pouring what appeared to be at least a tablespoon of sweat from my liner.  There are some solutions to consider (prescription deodorant, botox, and a specialized absorbent prosthetic sock), but for now I'm trying to see if my limb will just get used to it.
• The need to carry a stash of supplies (allen-wrench for the necessary emergency foot adjustments, extra prosthetic socks, prosthetic ointment and alcohol wipes, rag and other sundries)  at all times.  Ah....and don't forget the crutches for "bad leg days."  
• A subtle, creeping guilt complex about all that I'm not able to do, the excess crabbiness which comes from pent up ongoing frustration AND the inability to parent my kids in a more active fashion.  We're coming up on 2 1/2 years of  "wait and see", so this feeling is not unfamiliar.   I just want to feel like a fun, not-so-crabby mom again.  I would imagine that these are common feelings among parents who are caught in a similar situation.

Luckily, this AIT experience is not without its positive aspects!  Truthfully, it has been said over and over again that becoming an "amp" is like becoming part of a family.  Folks with limb loss obviously "get" one another, and share the experience on a deep level.  They can also offer support, guidance, practical tips, and understanding.....often with a twist of good natured humor.  (the only problem with the amputee family is that it is expensive....it'll cost an arm and a leg to get in.)  



Ali, Rebecca and I had a great time entertaining folks at Jimmy Johns,

obviously blending in with the crowd.  We drew no attention whatsoever!  ;)

It was awesome to connect with these gals to share laughs as well as

helpful advice.  While Ali and Rebecca are both AK (above-knee) amputees,

I learned a lot tips from them as the "new amp on the block."



I met Rebecca through a mutual friend in the blogosphere over a year

ago, and was totally surprised to meet her at Prosthetic and Orthotic Associates

in Orlando.  A very cool chance meeting!   Rebecca lives in Philadelphia

and blogs at:: A Thousand Miles .  Check it out...she's got an amazing story!

 The experience of peer-support and sharing is really important.   I found that it was incredibly uplifting to be able to share experiences, questions, challenges, and concerns....as well as our stories.  I am continually amazed by the people I meet with the most amazing stories.  (I plan to do another post on this later....so stay tuned!)  

All of the folks at Prosthetic and Orthotic Associates have a passion for their work, as well as helping amputees regain an active lifestyle.   Folks from all over the world come to POA because of their custom fabrication and incredible team approach to solving prosthetic challenges, which many of us face.   The family-like atmosphere and team approach works really well, because "many eyes" looking at a prosthetic fitting issue are better than only one set.   What is also very cool is that a lot of folks working at POA are amputees themselves, which have an intimate understanding of the experience. .



I first learned about POA from Ronnie Dickson (pictured here working on my leg.)

Ronnie is an amazing climber, prosthetist, and above-knee amputee who shares

a passion for adaptive climbing.   He's also an awesome, caring guy with a very cool dog.

You can learn more about Ronnie here:  http://xt-9.com/ronnie_dickson.html.  Ronnie is

also heading up the National Paraclimbing Competition coming up in July in Atlanta, GA,
which sounds very exciting.

  

Part of my rehab includes gait training on the Alter-G...

an anti-gravity treadmill.  It felt great to be walking with a pretty normal gait

at 75 percent of my body-weight, and it was cool to be able to watch

my stride on the monitor.



POA works with lots of kiddos.  Here, Jade and Kai pose for a pic with

Bella (second from right) and her family.  Bella was adopted from the same

province Kai is from.....and as you can see, she's super-cute!

We are hoping to move ahead to create my definitive socket within the next couple of days.  I have been wearing a series of check-sockets (see-through plastic sockets which are modified through the fitting process to ensure the best fit), and am looking forward to receiving my lighter, carbon-fiber permanent socket once the proper fit has been achieved.   I anticipate continued changes throughout the months ahead as my limb matures, but we are definitely off to a great start.