Tag Archives: Hope

World CDG Day

16 May

Today, May 16th 2017, marks the 1st official World CDG Day.  Ladybug was diagnosed with Congenital Disorders of Glycosylation in October 2010. I remember every single detail of the moment the doctor told me. There wasn’t really much information out there when we received her diagnosis. I had come across a website before hand that had several pictures of other children who had CDG, and I found one little boy who resembled Ladybug down to the same pudgy little hands. Fast forward nearly 7 years and there are Facebook pages, charity organizations, and now an official World CDG Day. I can only imagine how far we will go in the next 7 years.

This is an incredibly important day for our CDG family. We need to build awareness in order to increase the interest of academia, and the development of research. There is currently no cure or treatment for CDG. We need to be able to inform more physicians and every other healthcare professional out there, knowledge is power. Most importantly building CDG awareness will empower families and patients alike.

CDG Logo_HCH_TextCentered_RGB


A couple of years ago the CDG family worked together to develop a logo that would represent all of us.



It was recently announced that to go along with our logo, the CDG awareness colour will be green.

So today Ladybug is wearing a green dress complete with green ribbons in her hair.






What Not To Say

31 Jan

Today was the long-awaited GI (gastrointestinal) appointment for Ladybug. Without going into graphic details there hasn’t been a stinky tushy to change in 5 days, and she has started to spit up again. With the CDG, her “short gut” from the bowel resection, and the past GI bleed,  it’s so hard not to think that it’s something more than a case of constipation.

Upon our arrival at the GI clinic ladybug was weighed, measured, meds were increased to correspond with her recent weight gain, and her little round buggy belly was pushed and poked.

I knew that she may have poor bowel sounds (the lack of a hollow drum when you tap you finger on her tummy), but really didn’t expect to hear that there was something amiss with her liver.

Here is an appropriate thing to tell a mum after you find something in an examination: “her liver feels a bit large and hard. It’s difficult to tell for sure as her torso is so short. Let’s run some tests just to put my mind at ease.”

The following is what he the doctor actually said: “her liver feels really hard – you should have waited until after the appointment to get her blood work done – so I could have added some things.” Then he proceeded to sit down and when I finished dressing my daughter he began to explain that “she is at risk for liver problems and if she were to have liver failure, because of the CDG she most likely would not qualify for a liver transplant.”

I felt like I was going to be sick, I could feel all the blood rush out of my head and actually had to support myself on the desk next to me. Why on earth would he ever say something like this without knowing for sure if my princess does indeed need a transplant. The rest of the appointment was just a bunch of babbling. The best way to describe the doc talking afterwards was like the teacher in Charlie Brown.

It didn’t matter what he said all I kept hearing over and over was “would not qualify for a liver transplant.”

I’ve said many times that I’m not a doctor or a health care professional, BUT I am a mum – and common sense tells me that one should NOT talk about transplants or not qualifying for them unless one has substantial proof that it’s needed.

So now here I am thinking all these horrible thoughts that no mother should ever have to think because a doctor didn’t think about what not to say.

I ended up stopping in at my family doctors office on the way home, came into the office which had just closed with blood-shot eyes from crying the whole way and tear stains on my cheeks to try to get a second opinion.

All I can say is thank heavens that there are wonderful doctors out there that have the common sense and bed side manner to put my mind at ease. She actually said it’s hard to tell because ladybugs torso is so short, and suggested we get an ultrasound and next time we’re at the hospital to get her port-o-cath flushed add some extra blood work. There was no talk of transplants, or not qualifying. There wasn’t even any hint of panic in her voice.

The aching pain in my chest had subsided and I took a deep breath and began to wonder why anyone let alone a doctor would ever mention this without knowing for sure that was the only plan of action left. Don’t get me wrong I’m a huge fan of doctors who plan ahead and prepare me for what could happen in the future but never to this extent.

Just makes me wonder if he has ever had to worry about what not to say.


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.