Monday, May 27, 2013

3000

Although final numbers still need to be tabulated we are close to, if not over, $3000 in pledges collected for our team, which participated on Sunday in the Halifax MS Walk!!

I want to thank everyone who supported our team in our effort to raise awareness for MS education and research and ultimately, a cure.

Namely I'd like to thank Erin Trafford of Global Maritimes, Kool 96.5 in Halifax and Nadine Poirier of Natural Illusions for featuring me and Team Gracie's Mum, on their stations and in their work, in support of our quest to End MS!

I especially want to thank my family, friends and students for your daily support not only of me, but of Steve and Grace too because we know first hand that this is a disease that attacks more than the Central Nervous System, it is far reaching, it affects the family as well.Without the support we receive on a daily basis, we would never be able to manage. So, many, many thanks!

Much love!


©2011-2013 Gracie's Mum: A Story Of A Mum With MS

Monday, May 13, 2013

....and then it was May.


 It's been a while, I know.

I'm taking an unofficial hiatus from writing to sort out my priorities.

Between, work, school and home life, volunteering, and choosing a grad school or a second degree program, writing has taken a semi permanent position on the back burner.

I've realized a few things over these past few months and have drafted up some soon to be stellar posts and will share as soon as things slow down.

In the mean time, we are gearing up for the 2013 Halifax MS Walk and Team Gracie's Mum is in fine form to do well in our fundraising efforts! This year our team is an eclectic mix of family, work friends, former students and current students. I am honored to be leading this amazing team and my heart is warmed at the fact that they are all in it for me and my cause.

This past weekend was Mother's Day and I was spoiled as usual (in the form of a brand new boogie board) but was under the weather with a laryngitis inducing wicked cold so I slept most of the raining Sunday away.

Thankfully all that sleeping brought back my voice in time for an interview with Global Halifax, yes the TV station, promoting MS Awareness month, this blog and Team Gracie's Mum.

If you are in the Halifax area tune in tomorrow at 6, 7 or 8am to watch me and Grace or find us on the website after the broadcast is uploaded.

In the meantime, love each other and the beautiful sunny days ahead!



©2011-2013 Gracie's Mum: A Story Of A Mum With MS

Monday, February 25, 2013

Only Child, Lonely Child

 
I don’t write about her much anymore. I don’t think I can be her voice in the way that I had thought this blog would be. Her voice is much stronger. Her little voice is much more powerful. Her voice is much softer. She sometimes thinks more than she speaks. Her words often make much more sense.

Transitions were never her strong suit. She approaches life never by cannon-balling it into the deep end. Sometimes it takes her  multiple attempts to stick a toe in, only to pull it back, over and over until perfect is the only acceptable answer.

Trust has always been a task. Mostly, she doesn’t trust herself enough to take the risk needed to complete the task.

I worry that transitions or the ineptitude to accept transitions as a normal part of life will be what will impede a certain form of greatness.  I worry she won’t allow herself to accept the fact that she is great, that she is worthy, that she is awesome and that she will do great and awesome things.

Lately, as she parlays herself through Grade One she has struggled with new and challenging math problems, a really bad flu bug and her very own “mean girls”.

She hesitates often to tell us how her day has gone. She struggles to get the details just right and when she can see that we can see right through her story she then breaks down and we get the true gist of it all. The pressure of it all. The ‘I’m just not good enough’ of it all. And I can feel my heart rip out of my chest cavity and splatter all over the floor because my baby is hurting and I haven’t a band-aid big enough.

She is six years old.

The biggest problem I thought she’d ever have was having to explain why her mother walks with a limp or one day having to explain why her mother is the only mother in a wheelchair or having to explain what MS is in the first place. I was so wrong. She is a champion for MS bragging to her friends that she will one day walk across the country like Terry Fox did so she can raise money so other mum’s don’t have to be sick.

I was so naive.

She’s accepted me and she’s accepted the fact that her mother lives with an illness that has no cure. She has not accepted the fact that she is special, awesome and unique. Or she has, but is struggling with the means to portray her acceptance with confidence. I’m still not sure.

I have started to think that had she grown up with other children, she may have had more of a means to garner confidence only because siblings and the rivalries within would reinforce team work, goal setting and competition. Without other siblings she has no one to compete with but herself. The times in school when she has tried to be leader she has come across as bossy or aggressive, which happens when one is an only child without the practice of older or younger siblings putting her in her place. Without siblings to help her find her way she often is lost and on her own.

It’s too late to have the “should we have another child conversation” and even if it wasn’t too late for more children, to have one just so one won’t be lonely doesn’t sound like the healthiest of decisions. 

Only child does not need to equate to lonely child.

In Grace’s case, I’m afraid it does.

Which has us thinking of and missing home.

It’s becoming increasingly apparent that to stay in Nova Scotia for the rest of our lives would be unreasonable.  Financially it is not a good idea. It is much more cost effective to live in Ontario with lower taxes, lower utility costs, lower food costs and lower fuel costs and higher wages and more career opportunities. The big con of course is that housing is more expensive but not much more. 

In the event that I fall ill again and I am unable to return to work we would need to be able to live on one income, something that would not be possible in our current home and location resulting in an inevitable move.

If I were to become ill again and require family support whether it be babysitters or drives to the doctor or whatever, it is impossible to expect my parents who are in their 70’s to step in to the same extent they did 3 years ago, which was unrealistic even at that time. I have no other family in Nova Scotia. Everyone on Steve’s side and the rest of my family, other than my sister who lives in PEI, are in Ontario and although the expectation wouldn’t be 24-7 care, someone would be there if we needed them in a pinch, a luxury we just don’ t have here now let alone if things progress to worse. Eventually it will all fall on Steve and right now he plays too many roles. Husband, dad, caregiver. He’s tired. He’s lonely too.

Aside from the support we’d receive during bad times, it’s the good times we are missing out on that have us eager to get back the most.

Grace has 12 cousins in Ontario, 8 who are in her age group, 2 that are older, and 2 who are younger.  In Ontario, or at least the city that we would move to, the houses are close and subdivisions are plentiful and full of kids. Here, we don’t have neighbors and because the particular neighborhood we live in is a mix of older families, retirees and a few younger families without kids, there are no neighborhood play opportunities for Grace. We live off a busy road that is close to a highway so even to bike to the nearest friend would be a stretch.

That is, if she had a friend that was near. Any attempts to arrange play dates with her classmates have been dead ends as the parents haven’t returned calls or notes. Grace’s closest and best friends live 40 minutes away.

Being the only child is being a lonely child in Grace’s case.

And that’s just not good enough. Something has to change. Something has to change soon because a little girl this awesome, this great, this amazing should not be flailing. She should be prospering.  She should not be breaking down when she tells us how her day went. She should be busting to tell us how great it was.

We’ve let her down. We must pick her up. We must move on. 

The conversation isn’t ‘if we move to Ontario’ the conversation is ‘when we move to Ontario’.

For now, we just don’t know when ‘when’ will be.

And for now, we’ll keep asking about days, we’ll keep encouraging awesome and we’ll embrace through the transitions.

Love each other.  Be thankful for each other. Keep each other close.



©2011-2013 Gracie's Mum: A Story Of A Mum With MS