"Sorry....what was that you were just saying?"

Inside my head, on the average day....

Calcium contracts; magnesium relaxes.  Botox injected into the adductors/abductors, pectorals  hamstrings, biceps, triceps, hamstrings, should do the muscle over the shoulder blade....what is called?  Trapezius maybe....but that could puncture a lung....no thanks, we'll cope with one less barvery bead; not quite that brave.......ankle flexors, finger flexors........14 bravery beads; 14 times seven bravery beads.

Where is the darn ACSD statement for this month?  I need it for the appointment tomorrow.....why  can I always find every statement from the last four years except the one I need!?????

Baclofen, dopamine, feeding tubes, laxatives, side effects, seizures, dyskenesia, tremors, involuntary movement.  Moro reflex, persistent ATNR....asymmetric tonic neck reflex....asymmetric muscle tone, high tone, low tone, spacticity, dystonia.  

Scoliosis, hip sublux, contractures, contractures, contractures.  

Wheelchairs, standers, commodes, bath chair, shower chair AFO'S, HKFO's, hand/wrist/finger splints, neck collars.  Elbow gaitors, leg gaitors.  Abduction pillows, wedges, strollers, car seats, accessible vans.  Elevators, ramps, wide doorways, empty spaces, higher tables, higher beds, lifting slings, two person lift now that she's big.....can't believe she's already that big.

Physio therapy, occupational therapy, speech therapy, audiology, hearing aids, voice amplification, head switches for the computer, software for writing, art....all her school work.  Hand over hand.

IEP's IPRC's, ignorant teachers, impatient caregivers. Amazing teachers and angelic caregivers.  Transition meetings....I hope I don't cry!  Will the other kids make fun of her, will the invite her to the birthday parties?  Will someone play with her at recess; sit with her at lunch?  Will someone inevitably call her the R word?  Will she have an accident at school?  Will she feel alone during gym class?  Can she go on all the school trips?  What if someone snags her arm in the hall; it's always sticking out.  What if she has to use the washroom?  What if her leg gets stuck like it often does?  What if she's too scared to ask for help?  Who will be there?  Who will be there when I'm not?

Doctor appointments, surgery assessments, x-rays, driving, driving , driving.....nice doctors, not so nice doctors....nurses, strabismus surgery, sedated eye exams.

Anger, overwhelming, grief, fear, physical pain, emotional pain, giving up, starting over.....and over

Joy, acceptance, celebration, calm, love, perseverance, love, stumbling, love

She can't decide what she wants for her birthday, it's hard to choose a toy you can't play with.  Toy store excitement.....toy store disappointment.....6 yr old leaving angry and hurt

Challenges everywhere, accessing an inaccessible world
House is too small, chair is too big, which chairs do we take to which house
Lifting, lifting, lifting.....

Broken back, broken shoulders, broken hearts.

Strong back, strong shoulders, strong heart.

Fear for the future, hope for the future

Challenges everywhere, accessing an inaccessible world

Everything she needs costs a million dollars

Fundraising, overwhelming generosity

Fundraising - a full-time, no time, not enough time; for time, we are at a loss

Parental guilt, three kids, all feeling neglected, not enough time to play and just be

Appointments, coordinating, lugging....bags and kids and strollers

Thank God for coffee....and ipads.

Are my choices right?  Such big decisions.....this medication, that medication.....none researched in kids.....are they safe?  She needs something....can't let that hip get any worse  - HUGE surgery.

Physiatrist, Pediatrician, other Pediatrician, Neurologist, Orthopedic Surgeon, other Ortohopedic Surgeon, Naturopathic Doctor, Opthalmolagist, Gastroenterologist, Feeding clinic, Dietitian, Nutritionist,

Stem cells, Homeopathy, Naturopathy, ABM.....travelling....how will she sit in plane?  Million dollar plane car seat...no choice.  We can use it in the van after anyway....she would eventually need it so OK then, not so bad. 

Treatments up to $600 an hour, plus plane tickets, plus van rental.....the years I am losing off my life due to the stress of travelling.  How on earth can she go to washroom on the plane?  Please don't let her need to go to the washroom on the plane!  Seriously, do the washrooms on planes need to be that small?

So many things to bring with us everywhere we go....what if I forget the pills?  She could have a seizure.....straws in every pocket of every bag, extra hearing aid batteries.  Random socks and towels - you may be surprised at the uses there are for socks and towels.  I must be ready to pad or modify anything, anytime, anywhere.  

How am I going to fit in all the errands and appointments this week/month and get the house cleaned up and be home in time to make dinner....I have to make dinner before she gets home from school......but I have 17 other things I have to do....laundry still sitting in washer from last night....I haven't even played with the boys today yet.....GUILT!!!! So much guilt.  I want them to think I am a fun mommy too :(

OK, have to stop thinking.....these thoughts are taking up too much time.  Back on autopilot now.  

But if I could just get the house/basement/her room/my closet organized then maybe I could maintain it and I wouldn't have so much tidying to do all the time.  Maybe I could remember where anything is!!!  I need to start doing those brain puzzles...I have no short term memory anymore.

OK, OK....enough thinking....look at all the time I just wasted!  Frustrated. Sigh...........