Tag Archives: CDG

True Strength

3 Feb

This morning I  found out that a sweet little boy we’ve come to love from our CDG family passed away in his mothers arms. I sat staring at my computer screen for what felt like an eternity trying to find the right words to say to this amazing family who had just lost their son. I’m sorry had been said so many times but what else is there to say. My heart feels like it has been broken into a million pieces and even though I’ve never met this sweet little boy in person he is family and I can’t stop crying and thinking about how hard this must be for them.

I went into ladybugs room early this morning and picked her up and held her so tight trying to muffle my tears so I wouldn’t wake her.

Each time a child from our CDG family passes away it unlocks that box that I keep trying to hide deep inside me. It makes the horrible things that this disorder is capable of seem to move from a possible prognosis on our children’s medical files to reality. I feel like I’m in an after school special waiting for the heartwarming music to begin when I just keep saying it isn’t fair! It just isn’t fair! There is no treatment for CDG, there is no cure for CDG it just isn’t fair!

My heart goes out to the family – I really wish I had the words to say to take away the pain that they must be feeling. I wish there was more I could do.

Ladybug is cozy in my arms now, chatting and soaking up every ounce of the continuous snuggles she’s received so far today.

I must be strong for my daughter.

It’s okay for us to fall apart every now and again – we’re human. It’s the strength we find deep within ourselves even when it looks impossible that helps us get through those times.

I  came across this on one of the groups for parents of special needs children I belong to – it is so true.

Tags: , , ,

Mensch

8 Feb

With my most recent post being about a horrible experience we had with a doctor – I thought it was only fitting to brighten things up and write about an amazing doctor and person.

When ladybug was first admitted to the hospital this past summer, the ER doctor was kind, very thorough and was open to talking about the tests he wanted to run and the results as soon as they came in.  Little did I  know that this doctor would be  looking after my princess during the first couple weeks of her stay at McMaster Children’s Hospital.

Like I mentioned in Watching and Waiting everything started with ladybug having a very fast and irregular heartbeat, and the thought was that it was caused by an infection of some sort.  Then fast forward a bit and the GI bleed began.

Throughout these couple of weeks one thing remained constant and continuously gave me peace of mind; it was a doctor, the same doctor who had admitted my daughter when we were first seen in the ER.

He was always checking in on us even if he wasn’t on rounds, he pushed to have tests done that other doctors didn’t really see a need for, but quite possibly saved my daughter’s life. I often gave a little sigh of relief when I would see him walking down the hall first thing in the morning, because I knew my ladybug would be in the best hands.  One thing really stood out, and that was every morning the first words out of his mouth were always “how are you?”, it may seem like a common question but rarely got asked by the doctors during our stay. Those three words helped me feel at ease with everything else that was going on. He never seemed like he was in a rush when talking to me, always took the time to see how I was, and as soon as any x-ray or ultrasound result came back he would take me over to the computer and show me the results whether they were normal or not.

His name is Dr. Brian Levy.

I held and hold him in such a high reverence that I cried when I found out he was moving on to Labour and Delivery.  Here I was  holding everything together and keeping strong for my baby up until that point, and now crying over a doctor leaving? Maybe it was that last little straw that caused all the marbles to fly everywhere, maybe it was exhaustion, hormones, or maybe just maybe I had become so accustomed to having a caring doctor I really was upset that he was leaving us.  I even asked if he would be willing to switch from being an ER doc to being a pediatrician, sadly for us it was not his calling.

When Dr. Levy or Dr. Brian as our fav nurse and I use to call him moved on to L&D he still popped in a couple of times to see how we were, then we never saw him again.

I always wondered if he had moved on to another hospital, and if maybe one day I’d run into him on one of our regular hospital visits. All the while knowing that I wanted to somehow let him know what an incredible doctor he is.

What better way than to write this post to honor him.  The hardest part was trying to come up with a title. I decided on the word Mensch.  Mensch comes from the Yiddish and literally means “man.”  The real meaning is deeper, because, to be a Mensch means to be a “Good Man.”  The Oxford English Dictionary has an excellent definition:
In Jewish usage: a person of integrity or rectitude; a person who is morally just, honest, or honourable.  [OED]

I couldn’t think of a better title for a post about a man who to us represents what every doctor should be.  A person of integrity, honest, and honourable.

Thank you so much, Dr. Levy.

Tags: , , , ,

Hope

18 Jan

When I began to write this  post I initially had this huge explanation of what hope was to me.  After reading it over the next day I realised that I really didn’t need to go into great detail. After all everyone at some point has hope for something, whether it be well wishes for another, to be healthy, to love and be loved,  I could go on and on.

The inspiration for this post came from a quote I came across the day my daughter was diagnosed with Congenital Disorders of Glycosylation – CDG.  It was hope for her survival that helped me through my pregnancy, hope for her recovery that got me through her most recent hospital visit, and it is that same hope that helps me to envision her walking, and talking and eating, and growing into a beautiful healthy woman. The very things that most parents automatically take for granted.   My hopes are even appearing in my dreams where I see my ladybug crawling and walking along side me holding my hand with a huge smile on her face.

I carry a little card with this quote on it, and if at any time I’m beginning to feel doubt about anything I pull it out, close my eyes and recite the words in my mind. It reminds me how much we have already overcome, and inspires me to keep dreaming and always have hope.

“Hope sees the invisible, feels the intangible, and achieves the impossible.” Anonymous

My beautiful ladybug gives me hope – I’d love to hear what gives you hope or what you might hope for.

Tags: , , ,

Newer Entries →