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My one and only religious rant

Since so many people feel entitled to tell me what to believe and what I “should” be doing for my children this is my quick quip on that.

I will believe in what I want to believe.
I respect your decision to believe in what you want.  I won’t and don’t criticize or put anyone down for having faith in God or anything/anyone else.  Everyone is entitled to believe in what they want.
I appreciate your prayers and every single kind hearted thought I.. and my family have ever received from anyone, ever.

I DON’T appreciate and will no longer TOLERATE ANYONE telling me that I am harming my children by not believing.  Please don’t tell me that things will be better with “God on my side” – if he’s on your side and you love me, then he’s on my team and that’s good enough for me.  I will no longer accept people justifying Ben’s condition on the basis of “God only gives what we can handle”.

Ben deserves more than that.  

I personally choose not to believe in God.  I don’t need to justify my choices in faith, religion or spirituality.  To anyone.  

I BELIEVE in power and energy and positive thoughts. 

I believe that the only way out of our situations are by being accountable and through changing them ourselves. 

I believe that effort and patience and endurance is rewarded.  

I believe that LOVE CONQUERS ALL.  

I believe that Depeche Mode said it best when they wrote these lyrics:
“Now I’m not looking for absolution Forgiveness for the things I do But before you come to any conclusions Try walking in my shoes”

Please respect and allow me to live and believe in what I want.  Just as I respect yours.

If you can’t stand by my side as the person I am (and I will not be changing anytime soon) then feel free to “un-friend” me in whichever way you feel necessary.  You’ll be doing us both a favor.

END RANT.

Parent Power

Last night, Francois and I attend the first Parent 2 Parent meeting of the year; Ben’s program offers an evening option monthly.  While we were met with some of the “regulars” who we’ve grown acquainted with over the past year, there were also some new faces which is exciting!

One parent, while in discussion kept calling our little group “Parent Power” and while that’s not its official name, I feel it should be.  Parent Power is exactly what Parent 2 Parent is.  It offers us, a collective group of parents with at least one thing in common the opportunity to discuss, cry, vent, and redeem our experiences as parents with a special needs child.

We shared last night our hopes for what we would like to learn about and accomplish over the next few months; it was inspiring to witness what ideas were shared.  Even for parents searching for help in specific areas, the knowledge that they will likely leave one night feeling they got something from our group is awesome.  I know I always leave GRIT feeling like I learned something, shared something or was a part of something positive.

As parents with children like ours, we are often looked down upon – our social worker uses the comparison of SYMPATHY vs EMPATHY.  I don’t need your “poor you” looks and “It must be so hard” comments.  I don’t feel that way.  Our days can be harder, but I never feel like “poor me” for having Ben.  I love Benjamin just as you love your children and I do for him no different than what I would for my two girls.  These parents feel the same way.  BUT your empathy is welcomed.  A simple conversation or encouraging word can change my day and the relieve the worst of stress (I appreciated all the positive feedback I received from my post about Ben’s first day of school).   Conversations, words, and notes are offered to one another from within this group without having to say you  need it.

Parent Power is an opportunity for us to openly express ourselves in a comfortable environment, in front of parents who will not judge us (not even on our worst of days, regardless of how many times I use the word “fuck”) and who will be there when I need them to be.  I recommend the experience whole-heartedly to any parent considering joining a parent group for children with special needs.

We need to use each other; we are each other’s best resource when no else knows what the “fuck” I’m talking about.  😉

The Sickness Cycle

Ben, like many children facing similar challenges, has a sickness cycle.  He’s healthy for a month or two, then sick for a month.  Then healthy, then sick.

In February, we had our first unplanned Stollery stay and ended up there for a week.  Benjamin wasn’t tolerating feeds – orally nor bolus feeds and it quickly became a scary situation.  As everyone associated with him knows, weight loss/gain is our biggest obstacle and ensuring that he remains healthy within such great limitations is something we face daily.  I made an appointment with Dr. Chatur to get him checked and knew that the chances of being admitted were about a million percent (yes, that exists.  You can be that sure something is wrong with your child that is not fixable within your own means at home); I brought packed bag for the both of us.  By that afternoon, we were nestled into an emergency room bed.. then a few hours into the trach room (adorable little ones pulling out their tracheotomy tubes!) and then into our isolation room.  It was determined that Benjamin had caught some sort of viral thing and would need to be isolated to make certain he didn’t infect others.

The main concern while there was his hydration levels and for six days straight, he received a saline line into his foot – we’ve never seen him so puffy before!  We continually tried adding formula to his feeds but it took him up until day four to begin tolerating them and even then, at a slow slow slow pace.  Finally, an entire week later we were able to leave the hospital even though Bug still wasn’t quite back to normal.  Still, a few weeks later he was showing signs of a new virus and sure enough, he caught Bronchiolitis (infection in the lower lung).  We ended back at the Stollery on a Saturday night but fortunately the doctors did some testing and sent us home with the same plan we left with last time.  BUT with the exception of us having to follow up with Dr. McGonigle/Dr. Chatur during the week.

By far, those few weeks have been the most trying for us a family.  It’s a difficult situation to live in daily, unsure of exactly how Benjamin is being effected by these constant colds and need for medication.  We know he has troubles identifying pain so everything remains a guessing game.  Most children, when they get sick will “sleep it off” for a few days.  When Ben starts sleeping too much in a day, that’s a clear sign that we need to take him in.  He rarely holds a fever for than a few hours at a time because his body doesn’t regulate itself so even though the thermometer may not indicate it, he could be feeling awful.

Since the stay though, we have discovered one new, amazing trick.  In hopes of keeping him hydrated under any circumstance, we were only giving him water at night instead of his formula.  The water seems to be benefiting him in more than just that way – it’s created an increase hunger during the day and he’s now taking up to three bottles a day instead of fighting to get him through one.  Huh!  Who would have thought!

The above being said, we are extremely grateful for our family, friends, doctors and nurses who managed to keep us sane that week. You are all incredibly lovely and so much appreciated.