Helping Us Enjoy the Good Life Has to Offer

Helping Us Enjoy the Good Life Has to Offer Our Darius, Our RMH

I am going to be honest. I had no clue what RMH really was…Darius was born with Down Syndrome and another rare disease called NF2. It’s so rare that he is the only known case of having both. At 2 months old he became severely ill with pneumonia and was fighting for his life.

Leaving my husband and oldest son back home in Thunder Bay, Darius and I were airlifted to London with nothing but the clothes I was wearing, my purse, and Darius in his diaper hooked up to every wire imaginable in the incubator.

I was numb and had so many thoughts running through my head. The last thing I needed to worry about was myself. I think the moment that thought came to my mind was the same moment my RMH started caring for me. 

When we landed in London, the nurse suggested I get settled at “the House”. As I made my way out of the hospital doors, I soon found myself in front of Ronald McDonald House. I walked through the red door and was greeted with open arms and the most welcoming hug I think I have ever felt. How did they know I needed that hug? They asked me a few questions and then gave me a bag full of everything. How did they know I only had my purse? They also gave me a beautiful quilt, but how did they know that Darius only had the diaper he was wearing? I was shown to my room, closed the door behind me and broke down. It was Darius’ first Christmas and I had just left my family back home, over 1,200 KM away, on Christmas Eve.

As I stayed bedside with Darius I would be encouraged to go “home” and get some rest. Go home I thought? I didn’t understand why they used that term, but I soon found myself saying it as well. When I got back to my room Christmas Eve night there was a large sack outside my bedroom door – Christmas gift for my whole family, just like at home.

Over the days, I would walk to the kitchen for meals, just like home. I slept in a cozy bed, ate homemade meals and was greeted daily by caring people, just like home.

For many stressful nights my RMH, my home, gave me the comfort of knowing, when the nurse called, I could get to Darius’ side quick enough to whisper in his ear, “You need to fight. You’ve got this”.

I lived at my RMH for 35 nights and our family has continued to so do every few months during Darius’ life-saving procedures. NF2 is a disease where your body doesn’t have the protein to keep painful tumours from growing on the Nerves. Darius has several aggressive NF2 tumours in his eyes, making him legally blind. Acoustic tumours in his brain affecting his balance and his ability to walk and might eventually take away his hearing. With no known cure or potential for remission, he will experience the repetition of surgery, chemo, surgery, chemo until he cannot do it anymore or they find a cure. RMH will be our home through it all.

Living with a critically ill child that requires medical travel puts so much stress on a family. Stress that can lead to negative situations that take away your joy for life. RMH takes most of that stress away and makes it easier to smile, laugh and enjoy all the good life has to offer. RMH is home because of the wonderful, amazing, supportive people that become your family - family you look forward to seeing.

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