I am a mother.

 am a mother.  My jobI is grossly under-rated.  My education never ends.  I'm currently perusing several masters degrees at one time and I may never "graduate".  I'm under paid and under-appreciated.  No one notices all the things I do, but they always notice the things I don't.  I work all shifts; over-time every day and all night too.
I have several "bosses", the cutest bosses in the world:)  I have boogers on my shoulder most days.  I own a lot of yoga pants.  I know more about all the story lines on Dora and Sesame Street than any other show on TV.   My job is not glamorous at all, but it's wonderful and a privilege that I don't take for granted.  

I am a mother and one of my children has special needs.  There are different challenges that come with raising a special child.  It requires an entire skill set of its own and sometimes.... OK, most of the time; I feel completely inadequate, but I'm doing the best that I can learning with every step on this journey. 

I am an engineer.  I can pad anything, anytime anywhere.  I have extra socks an towels in my bags and you would be amazed the uses for socks and towels..  Stick me on a desert island with little more than socks and towels and I'll survive....maybe throw some duck tape in too.  I have made bath chairs out of yoga mats and plastic lawn chairs.  I have made bolsters and laterals out of anything.  I have a drawer full of old bathrobe belts and ties of all sorts; those are like gold in my house.  Need a foot strap or a way to fasten padding to arm rests to prevent bruising?  I'm your gal.  I have modified walkers, standers and wheelchairs with socks and ties....seriously, these are life essentials.

I am a hair stylist, an expert in home hair cuts with no training; massive tangle disaster relief like you have never experienced.  I have tried every hair product and type of brush there is. 

I am a body builder and stunt woman, I can lift things that I can't really lift several times a day every day.....even when I'm 9 months pregnant with a toddler on my hip.

I am a functional insomniac, functioning on little to no sleep most of the time.  

I am a wiper of tears, a cleaner up of messes.  A catcher of vomit (hey it's true), a wiper of noses and bottoms.  A personal chef, a catcher of falls and a mender of cuts and bruises.  I am the one they take out their frustrations on and the one they cuddle up to after they are done being frustrated.  I have to dish out some tough love and feel guilty about it; and spoil them and not feel guilty about it.

I am a teacher, songwriter, completely non-artistic artist, statistician, researcher, neurologist, lawyer, physio therapist, occupational therapist, speech therapist  nutritionist, advocate.....

I can always find a way for my child.  I do not accept that there is no way.  I will make a way, I am a builder of roads.  

I am a mother. I am the mother of a child with special needs.  That's right; a child WITH special needs; not a special needs child.  She is a child first, a person first.  I will modify the world for her as long as I live.   I will travel anywhere, do anything.  I am a finder of ways.

I am a mother.  This is what I do.  This is the hardest job in the world and I wouldn't trade a single second.  Being a mother is the hardest job you'll always have.  It's wearing your heart on the outside of your body forever and taking many punches to that heart.  It's sleepless nights and thankless days.  It's being under-appreciated and over-extended.  It seems almost impossible at times to do what mothers do, but we manage somehow.  We pick ourselves up and dust ourselves off and we must acknowledge that we will stumble and we will make mistakes. It's ok not to be perfect as long as we keep trying.

We are mothers and we know that when we cannot find another answer, then the answer is just to love them and roads will come from that love.  

I am a mother of a child with special needs and I BELIEVE and I don't care if someone says it's impossible because I know impossible is spelled I'M POSSIBLE.  

I am a mother and I am stronger than I even realize, but my Daughter is stronger.

I am a mother and my Daughter is my hero.

"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...........