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...........

This is us...

"Thanks Mom", that's what I hear 37 times a day from my all too knowingly aware, almost six year old daughter Sumayyah.  She has spastic quadriplegia, the most severe form of cerebral palsy.  She is, however, totally verbal (although not entirely clear) and has excellent head and neck control and can eat normally....and a LOT at times.  I'm told that these traits are more on the rare side for her type of CP, and so I am eternally grateful and don't take them for granted.

There was a time when she could barely speak and barely eat and we didn't know if she ever would, so I can say I am loosely acquainted with the emotions that go along with those challenges, but by the grace of God, around the age of 3 things started looking up in those areas.  We struggled, we did our time in the GI clinic, hovering around the possibility of a feeding tube and in the augmentative communication meetings, discussing the software and systems that are available for non-verbal communicators.  We thought that's where we would be, but, Mercifully, we came through it.

Her spacticity, on the other hand, is something else altogether.  It's just bad.  Minimally responsive to botox...yes I said the "B word", but that requires a post all on it's own so I won't go there except to say that just because we do it doesn't mean we are all for it.  We've started, stopped and started again and recently after much "B word" ping pong, I'm about ready to stop it again.  Measurements say that it helps and I can feel in her body the help that it does a litte, but is it worth it? Are there other options?  I believe there are....I'll save the rest for later.

It's taking me forever and a day to get this post done.  I am itching to start posting about our most recent adventure into the "so very different than what we are used to" world of ABM.  This post is supposed to be an intro to us, but all that my brain can think about these days is ABM.  Nope!  I'm going to do this intro right, ABM later.....I'm just taking a few breaths, as if I have the capability of utilizing any effective calming techniques (I'm immune).

Sumayyah was born at 24 weeks and 5 days.  She was big, they said, for her gestational age.  She was 828grams, which actually isn't a bad size.  I has chorionamnionitis so they say.  I was having contractions for a week, back and forth to the doctor and different emergency rooms trying to get someone to do something but no one took me seriously.....even the contraction monitoring machine didn't believe me.  They hooked me up and it said NO contractions, even though I was in so much pain I had to sit down as I walked through the hospital on my way home again.  They suspected a bad bladder infection and loaded me up on antibiotics and eventually she was born in an ambulance, with paramedics who also didn't really believe me.  I couldn't look at her in the ambulance, I was terrified about how she would look.  I saw her about 2 hours later after they told us she had a 60% chance of brain damage.  They didn't think she would live.  Born with bacterial meningitis and pneumonia....when I saw her for the first time she was lying open on a table and they let me touch her without washing my hands (which as all of us NICU parents know is not a hopeful sign).  I'm sure they thought it may be the only time I touched her alive.  They took her to the nearest children's hospital and I joined her the next day.

I could write volumes on the NICU experience.  Other babies that didn't make it, her purple, translucent skin, heart surgery, osteopenia, broken femur and ribs....holding your breath every week or so when a new infection was suspected and antibiotics strong enough for a horse were started yet again.  Five months of NICU life is like nothing else.  Thank God for the bonds formed in the breast pumping room.  I actually came to dislike the private breast pumping rooms at other hospitals because I think we all needed each other and it was one of the high points of the day....imagine that.

Coming home was something strange.  We had never heard the words cerebral palsy and I can understand why they may not tell you some things while you are in the midst of all that.  At 9 months old, (5 months corrected), the doctor told us as if we should already have known....I didn't have a clue what it was!  It didn't phase us too much, we just lived our life as it came and learned along the way.  We were told she wouldn't talk or walk....probably not roll over or sit up.  We also found out that she had significant hearing loss in both ears and was "blind" in one eye.

Now she is almost 6...in May....and she doesn't walk or sit up or have use of her arms/hands, but she talks quite well and that is HUGE and we are so grateful.  She was very delayed in speech because of her hearing loss and breath support/CP issues, but every year she has improved.

And so, in a very tiny nutshell, that is us. I hate it when I let the CP be our identity.....we are so much more, but for the purpose of this post.....in this blog about our lives with CP.....you will get to know the real us as the CP is just one trait.  I say us a lot.  I feel like she and I come as a duo; sort of a package deal.  When you have a child with special needs, I think you become so ingrained in each other.  Ok, that could be a bad thing sometimes, but for us it's about closeness and a special bond.  We are hand in hand on this journey (sometimes I think she is the stronger one!!!) and this is us.