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.  

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