From the moment my little ladybug was born she was a frequent patient at McMaster Children’s Hospital. During our most recent stay at MCH my wee ladybug was diagnosed with a rare metabolic disorder known as CDG – Congenital Disorders of Glycosylation. Basically her body can’t transfer the sugars needed, which means that she is unable to absorb protein. CDG causes many different disorders that effect several systems in the body. There are approximately 500-700 cases of CDG worldwide, most of which are type I, only a very tiny handful have type II. The latter is where my princess falls.
Anyone who has ever received a life changing diagnosis for the ones you love – whether it be a child, spouse, parent, or friend, know that as soon as the doctor tells you those words your entire world flips upside down in an instant. Any hopes or dreams for them just seem to float up in the air and hover, because even though you may finally have a diagnosis there is no way of knowing how things will play out.
Even the most seasoned parent will tell you that any trip to the hospital can be daunting, however, somehow knowing that we were at one of the top paediatric academic hospitals in the Canada seemed to alleviate some of my anxiety. Our last visit to McMaster lasted nearly 2 ½ months. It may seem like a long time, but after a while it just became our home away from home. The Ronald McDonald room for families of children in the hospital was a life saver, especially when you needed somewhere homey and close by to escape - if only for a few minutes. The nurses on the children’s ward were fantastic; they became my extended family and love my ladybug as much as any other family member would. There were even a few nurses who had gone above and beyond their duties and have become close confidants since. The child life staff was always checking in to see if we needed anything, and started my ladybug on the Beanstalk Program. This program was created to communicate the developmental needs and goals of young children receiving extended acute care on wards 3B and 3C, to the staff, families and volunteers at MCH. It was great to know that if I were to step out for lunch, the volunteers would know exactly which book my daughter liked to look at, that she enjoyed hearing music or singing, or how if you twirled her hair she would relax and fall asleep.
One of my favourite quotes is “Struggles only make triumphs that much sweeter”. Because of the wonderful staff at McMaster Children’s Hospital we were able to make it through our first bout of struggles in my ladybugs life, and can begin to relax and enjoy the many triumphs yet to come.