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Calum's Story

I have recommended the Home to other families because of the great staff, beautiful facilities, and home-like atmosphere, in the hopes that they will seek the much-needed respite they deserve.

by Leslie, Calum's Mom

My son Calum was born on January 26, 2007, and he was a healthy, beautiful brother for his two year old sister, Abby.  Four weeks after he was born, he stopped breathing.  Using CPR we were able to resuscitate him and he was brought to the hospital where many tests were performed.  He seemed completely healthy.  This was a very frustrating and frightening time for everyone in my family.  As the weeks progressed I noticed he wasn’t eating as much and seemed to be struggling to breathe.  I finally returned to the hospital when he was almost two months old and he was brought to the ICU where he stayed for over 5 months.  It was a very isolating and stressful time.  I hoped they would find what the problem was, but at the same time I hoped he would just get better.  Deep down I knew something was terribly wrong.  It took many months to get an answer as to why my son could no longer breath on his own, but it was finally determined that he had a rare neuromuscular disorder that we are still trying to  diagnose.  His condition is referred to as Congenital Hypomyelination Syndrome, which causes extremely low muscle tone.  Because of this, Calum can barely move - a slight shoulder shrug or some facial expression.  He has a tracheostomy and needs to be on life support because he is unable to breathe unassisted.

I am a single mother, and because of my son’s conditions, I am unable to leave him unattended by anyone except nurses who has been specifically trained in dealing with his life support machines and medical conditions.  My son is also unable to communicate very well, so someone needs to be close enough to see him or hear his machines in order to keep him safe.  I work full-time and have nurses who help me do this, however I get very little time to myself.  Even finding time for grocery shopping can be a struggle.  I have embraced my situation and have found hobbies I can do at home -- I am slowly becoming a pretty good knitter and am learning to cook a bit better!

The biggest change in my life was allowing so many people to be in my house to help me take care of my son.  The help is appreciated and very much needed, but sometimes it feels like I have no personal space.  My home has also required a lot of renovations and financially my life has become very difficult.  I have to ensure my daughter feels special and continues to receive the attention she deserves, but I have also needed to help her understand some very grown up things.  She is an amazing kid, who understands my son better than anyone and always includes him, and knows how to include him even when I sometimes forget.  She is Calum’s best friend and it is obvious how much they love each other.

His condition is extremely fragile and the complication of so many machines makes his condition very difficult to support.  However, he seems to be cognitively fine - healthy and happy - even with such great burdens on his body.  He is unable to communicate, since the tracheostomy doesn’t allow him to speak in conjunction with weak muscle tone.  He is also unable to use sign language, so we are working on using eye-gaze computers and pictures that he can look at to communicate.

Calum started school this year, where he has many friends in the community and has been invited to birthday parties and play dates.  He is a very social little guy, who has a great sense of humour and loves to smile. 

The Darling Home for Kids has been a place where both of my children love to visit.  My daughter, Abby, feels comfortable at the Home, she loves to interact with the other children while I get Calum checked in.  She also loves to have a weekend for Mommy time, having a quiet night’s sleep and the ability to sleep in - something neither of us are able to do regularly.  We love just staying home and playing in the yard or popping out for ice cream if we want.  In my daughter’s prayers she has thanked The Darling Home for Kids for being a super cool place for Calum, but also allows her to have Mom all to herself. 

I was extremely nervous leaving Calum for the first time to stay overnight at The Darling Home for Kids, but at the same time I was confident he would be well taken care of.  I have recommended the Home to other families because of the great staff, beautiful facilities, and home-like atmosphere, in the hopes that they will seek the much-needed respite they deserve.  I have learned to be grateful and accepting of my family situation and never to be burdened by things I can’t change.  Having a place like The Darling Home for Kids helps me get moments of respite which allow me to stay peaceful and joyful.

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