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When you are a parent of disability you waffle between shameless optimism of what your child can or could do, and utter despair for what they are unable to do. And at some point in your journey, you hit the brick wall of reality.

I have definitely hit that brick wall of reality and am finding it painful. Sophia is eleven and in grade six. There are moments when she seems like a ‘typical’ eleven year old girl. Sophia knows all the words to any Selena Gomez song, she wants to wear ‘big’ girl clothes, paint her toe nails. She wears deodorant, has her first bra and definitely has eleven year old girl emotional break downs!

Sophia loves to help out in the kitchen and goes shopping with me, following the grocery list with determination. We have real conversations about what kind of vegetables we need for dinner and what apples are our favourite. She can choose between cheddar or mozzarella, cold ham or turkey. Sophia loves to read the ingredients in the food we pick out and fervently announces to anyone walking by the percentage of sugar indicated on the side package.

In these moments walking up and down the aisles, I have shameless optimism that my daughter will grow up and develop into an independent, self reliant woman. That she will have completed her education, have a good job, a social life, and share her home with close friends/roommates. That she will manage her own bank account and perhaps, fall in love, have children of her own.

Slam! There is that damn brick wall. OUCH! It hurts…

Sophia is estimated to be about the developmental age of a four year old. I would say it rings true in that her favorite show is still Barney, and she laughs uncontrollably watching Sesame Street on her iPad. We still have to cut up her food, bath her, and there are moments like tonight at dinner, when she really does not understand the context of the conversation. This typically leads to her brothers laughing and Sophia sitting there with indignation, thinking she knows the answer and is right; a blend of the eleven year old girl and a developmentally four year old child.

Sophia is still so very much infantile. Her emotional maturity is that of a two year old and she still requires so much assistance, twenty four hours a day. This is an aside to the comprehensive medical care she requires; the injections every three hours, the round the clock medications, the skin care, the assistance she needs physically to complete so many basic tasks like bathing, dressing, going to bed, even needing assistance walking up and down stairs. *Note, Sophia ended up in emergency the other day when she fell down a flight of stairs and suffered a major concussion when in the care of someone else who didn’t hold her hand.

The worry, the angst, the fear of her every day never mind her future, hangs over my head like an anvil.

No one can look into your eyes and assure you everything is going to be ok, be alright. Because the reality, that friggen brick wall is right there in front of you. You try to blast your way through, ram it over and over, try to climb it even. And time and time again, you are met with the cold hard truth that when you have a child, are a parent of disability, that there just may be a line in the sand…that the wall isn’t going to move. It is there to stay.

That isn’t to say you can’t make a wonderful garden around it, that you can’t create beautiful graffiti on it’s cold grey. That others can’t come to the wall and sit and enjoy it with you, your child. Because you can…and for your own emotional well being, and for the quality of life of your child, you need to.

Helen Keller said, “I seldom think of my limitations, and they never make me sad. Perhaps there is a touch of yearning at times; but it is vague, like the breeze among flowers.”

It is something I have yet to learn as a parent of disability; to only yearn for what Sophia can do, will do. And not think of limitations, not feel sad. For me, that breeze comes in wind storms, still.

Yet, at the end of the day when I am getting Sophia ready for bed and she tells me exactly how many days are left before a special occasion, or in the morning when she proclaims as usual, that it is going to be a sunny day because she can see that one tiny crack in the clouds…that storm settles into a breeze and I know I am among a flower. It feeds my shameless optimism.

As a parent of a child with special needs, ok, in my case, two children with special needs, a lot of people ask me ‘how do I do it?’  Or, ‘I don’t know how you do it’ on a regular basis.  It is such a hard question to answer and my response comes back in the form of another question…’Why do I do what I do?’

There is no doubt ‘how’ I do it, is because of ‘why’ I do it…for my children.  As a mom, we love unconditionally.  Well, other than keep your room clean, set the table, take the garbage out and don’t hit your brother.  We DO love unconditionally.

When our children are young, we don’t mind wiping their bums, their snotty noses, letting them eat off our plates, sitting up all night when they have the flu.  It is that instinct to care for, to nurture that bubbles its way to the surface even more when you have a child who has special needs.

My eldest turned twenty yesterday, so I have been a mom of someone ‘special’ for a long time. Along the way, I have learned some simple survival tips.

• Take time for you - this could mean a bath and a good book, a weekend away with girlfriends, a routine coffee night, a run, a walk or simply tucking yourself away in your room to talk to your best friend on the phone


• It is ok to be ‘off’ - we all have bad days, parenting a child with special needs means our bad days can be really bad.  And it is ok to have bad days.  We don’t need to put on a brave face all the time, we are allowed to curl up in the corner and cry.  We are allowed to admit we feel defeated or helpless.  Let those around you know when you are ‘off’ and try to balance it out with taking time for you


• Be an advocate - there is nothing better than taking your experience and making a positive impact on your community.  Volunteer for an organization that aligns with your child’s needs or your family values, join a local board, speak to your local or national politicians on the kinds of services we, as families, need.  Some of the best changes that have been made at a political level have been because of committed grassroots advocacy.  It can provide you with a sense of purpose in what may otherwise be a sense of loss or helplessness


• Seek Support - the best thing we can do as parents of children who are ‘special’ is seek the support from those around us.  It can be family, friends, other parents who have similar children or circumstances.  Maybe a professional organization that supports your child’s needs.  Surrounding ourselves with like minded people who understand can some times, get us through our darkest moments

Not very often does something stop me in my tracks, I mean STOP me in my tracks, and question the concept of hope.  Working with so many nonprofit organizations, hope is bountiful, is rich, is in the water supply more often than not.  Why else would individuals and groups of volunteers endure mountain peaks at sub zero temperatures, or long arduous runs, countless hours collecting bottles or living in third world countries for months on end?

For the sublimity of hope.

I went to a routine six month appointment with my daughter today expecting well, a routine appointment.  It was anything BUT routine.  We expect Sophia’s disease process to be unusual and expect the unexpected. However, I was not expecting the hour long conversation that would ensue.

Most of you know Sophia has been waiting for an MRI and a month ago we had the good fortune to have that MRI done at BC Children’s Hospital.  We were treated exceptionally well, all the staff were amazing and Sophia was well taken care of before, during and after her sedated MRI and CT scan.  We did spend a day or so in ICU after wards, but again, had a good experience.

Today we received the results of Sophia’s scans, along with some other testing she has been going through the last month for her kidneys.  Needless to say, the results were unexpected; her kidney function significantly impaired, and the MRI /CT scans showing a severe abnormality with Sophia’s upper spine, spinal cord.  Her entire spinal skeletal system is fused, even her little lungs show collapse, more than likely due to the condition of her spine fusion and her severe kyphosis.

We don’t know what all this ‘means’, and who knows if even our medical professionals really know what it all ‘means’.  But we do know Sophia is at risk within her spinal cord, in the same area Christopher Reed was injured.  And we do know Sophia’s kidney function is low, really really low and because of her complicated little self, is not a candidate for transplant.

On the drive home my mind wondered to all the issues discussed and brought me around to hope.  For ten years, Sophia has fought against the odds, our whole family has fought against the odds.  We have held on to ‘hope’, hope that Sophia would be ok, hope that the medical community would catch up, hope that our family would remain intact emotionally through this process…hope, hope, hope.

Alexandra Dumas said “All human wisdom is summed up in two words - wait and hope”

And today, walking into my home, Sophia singing to Barney I am met with the sublimity of hope…and if nothing else we have the sublimity of hope, that Sophia will be happy, our family will be together and each and every day, we appreciate ALL we have and that we have hope, for one more day…one more moment, as sublime as that may be in the midst of today.

Sleep last night was elusive; Sophia’s feeding pump is on the fritz again so we had to get up every hour to bolus feed Sophia.  ‘Bolus feed’ means we have to draw up her formula in syringes and manually feed her each hour to maintain her sugars.

The irony is ten years ago today, I was doing the exact same thing but in Special Care Nursery the day Sophia was born.  Today is my gorgeous girl’s birthday…

Ten years later, it is hard not to reflect on a decade of ‘Sophia’.  As I sit here typing this, Sophia sits next to me all bundled up in her blanket, wearing her Hello Kitty pajamas watching her morning show.  She is cuddly, her arm wrapped around mine making it a little difficult to type.  For those of you who have seen my five finger typing, you can appreciate the added difficulty.

My best friend has shared a quote with me over the years “Whenever we experience substantial disappointment, we are attached to expectations of a specific outcome. Indeed we must plan for the future. We must see our objectives clearly and aim for them carefully, but we open ourselves to suffering when we make our happiness dependent on expected outcomes.”

For the first few years of Sophia’s life, I had no expectations.  Well, I expected her to die, to be candid and pragmatic.  And that caused a tremendous amount of suffering.  Each time I found myself in the back of an ambulance, or on the floor doing CPR, in a room full of medical staff having to make decisions on the fly, my expected outcome was Sophia’s death.

Life was bitter sweet, milestones became a measurement of imminent death, my heart was saturated with melancholy as each Christmas came and went, each first day ‘of’ and birthdays, birthdays would find me curled up in my bed crying for another one.

As the years have gone, and despite the progression of Sophia’s disease, of added symptoms to manage, ever increasing rounds of meds and treatments, endless days spent at Children’s for appointments with no answers…something has changed, my melancholy has ebbed.

I find myself more and more embracing the simplicity in life.  And yes, I have expected outcomes…I expect to wake up kissing my children, I expect Sophia to have fun in school and learn to read.   I expect to find support in our community of friends and family.  I expect Sophia will want to spend her birthday swimming in the lake…

And I expect to suffer, like any parent with a child who has a life limiting illness or not…we ALL suffer in our own way.  Some suffer with supporting a child with addiction, some suffer with a child who is brilliant, some suffer with a child who has an intellectual disability, a gift for sport, or dance, or music.

There is a quote I’d like to share…

“The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.” Ben Okri

Sophia has taught me in her decade of suffering, in her resilience for life…to be greater than our suffering.

And I love her with all my being and wish her a wonderful tenth birthday, swimming in the lake…

[caption id=”attachment_148” align=”alignnone” width=”300” caption=”My angel…”][/caption]