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!

8 Year Wedding Anniversary


10th Wedding Anniversary....Celebration of Survival and


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. 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 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, 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'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 they used to be (before my accident, before kids).  And I took it out on my husband (, 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 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'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 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 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.   


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.