Barriers

I'm sure many of you have experiences barriers to the life you would like to live.  If you are a missionary, you probably don't have your dream house or the food you're used to.  There are huge cultural differences and language barriers.  In all reality, none of us have the perfect life where everything goes exactly as planned.  The kids don't behave, the spouse isn't living up to your expectations.  Then there's brain injury.

This post isn't meant to make people feel bad for us or me complaining.  I think people need to be educated about what life is like for a severely handicapped young family and to hopefully gain a better understanding so you know how to help people around you better.  Before I started this journey with David, I had no clue what it took to be living a disabled life.  I worked with disabled people all the time for 10 years and had no idea what they went through every day just to get to an appointment on time.

I have the husband, the babies, a comfortable home, adequate finances and wonderful family, of which I am so grateful.  But it's like having a car without wheels.

I never know what a day will bring forth.  In some ways, our life is so scheduled, so repetitive.  Every day, David starts getting ready for the day at 7am.  I go unlock the door for the caregiver and go back to bed for a few more winks unless there is no caregiver or Jocelyn wakes up early.  8am: I start making breakfast for everyone, wash last night's dishes, and clean up.  8:30am:  Caregiver reports to me how morning cares are going and advise accordingly.  8:45am: David comes out for breakfast and usually has a million things on his mind to say.  9:30am:  Either get David on the bed for exercises or off to an appointment with therapy, doctors, psychologist or whoever. 11:45am: Start preparing for lunch and eat lunch at 12pm.  1pm: Nap time for David and Jocelyn, time for me to do paperwork, housecleaning, laundry, prepare food for the week, make phone calls or write emails (ie. catch-up time).  2:30pm: David up from nap and goes to more appointments, walks or rides bike.  5pm: Start making dinner and eat by 6pm.  7pm: Watch a movie. 8pm: Bible time. 8:30pm: Jocelyn bedtime. 9pm: Get David ready for bed.  11pm: Night time meds for David and bedtime for me.  Sleep. Repeat.

And then there's the unexpected that happens more frequently than I'd like: ER or emergency chiropractor visits for severe intractable headaches, bladder infections, incontinence at inopportune times, caregivers quitting or no-showing, new caregivers to train in before important early appointments, unexpected appointments, unexpected social activities or cancellations that nobody bothered to let me know in advance about... It goes on and on.  

I'm constantly having to flex to something new with David; learn a new technique, remember how he reacts to all treatments and medications for the last 3 years,  notice any changes and accurately report them to doctors, ask all the right questions,  advance activities and exercises as David progresses,  make David wear splints and braces and come up with inventive new ideas to keep him from ripping them off.  The newest thing is a neuro stretch technique and then a brace applied to stretch out his calf.  This technique takes at least 20 minutes to do properly and is impossible to do properly with a two-year old crawling all over you and him, pulling on your hair, elbowing your belly, poking your eyeballs and other orifices, etc... And the PT wonders why I haven't been super compliant with this technique?  All the therapists want us to do home programs, which is fine if you don't have a million other therapies to do home programs for too.

Always climbing mountains.  It never ends.  Always coming up with strategies to help me cope/David retrain with behavioral/cognitive problems.  The mundane and unexpected combined with this new (relatively) environment (for me) make it so challenging to "fit" anywhere.  We can't go to most people's homes because they aren't accessible.  I have a hard time relating to women in my stage of life except for having a toddler.  TBI has left me grateful for the smallest things my husband can do for me.  A few days ago, he helped me clean the bathroom sink.  It was so hard for him to even scrub or get his fingers around the sponge.  It took about 5x as long but he was so proud of himself and I was so proud of him trying.  I change light bulbs, unclog drains and toilets, garden, clean gutters, get the cars maintained, build things, take out the trash, change every poopy diaper, clean up vomit, handle finances, squish spiders, shovel snow... I can't be scared of or wimp out on anything or not know how to handle almost everything. I can call my daddy but he's 2,000 miles away.  Women that are married to men who work and are able-bodied take so much for granted.  They may seem like couch potatoes but at least you can have a conversation with them without having to talk about 5 other meaningless topics 10x before the conversation is over (or did it really even begin?).  They can take out the trash or run to the store for a jug of milk, take the colicky baby outside for a few minutes.  They feed themselves and get themselves out of bed and dressed.  It takes over 2 hours to get David up, dressed and fed in the morning.  2-1/2 hours GONE! I spend about 2 hours with David almost every single day doing therapy-related "homework" and the caregivers spend about an hour.  It takes David about 45 minutes to eat a meal.  When he was in the hospital, it took him 1-1/2 to 2 hours to eat a meal so he's made progress in this area!  Disability takes so much time!  People wonder why I don't have time to "take time for myself", why I can't make new friends.  We try really hard to live a "normal" life but our "normal life" takes about 10 times as long to live in the same 24-hour day.