As parents, everything we do for our children is out of love - every sacrifice, appointment, and late-night trip to the pharmacy is done without a second thought. We work tirelessly providing care and advocating for our children and often, as special needs parents, feel alone in this journey. While navigating our daughter's medical journey, RMHC has become a true home-way-from-home, so much so Helaina has affectionately renamed it the 'Super House!’
Helaina was born with AMER1 gene mutation, a diagnosis that is literally one in a million. We have a lifelong journey of learning and adapting to her condition, and one of those hurdles has been the obstructive sleep apnea she experiences nightly. For a long time now, Helaina has been wearing a Bipap machine to keep her safely breathing throughout the night. As wonderful as this machine is, IT. IS. LOUD! While Helaina has become used to the alarms, Jerard and I are frequently jolted out of bed into panic mode to readjust her mask before we can try to go back to sleep. Exhaustion can be a big challenge for us, so when we had our comfortable bed at the Super House away from the ringing and dinging of medical machines we could get as much sleep as we could, during the moments we could.
For Jerard and me, RMHC was truly our "home-away-from-home". Being surrounded by other families who understood our struggles made it feel as though we were part of a community and no longer alone. The House also alleviated a lot of our financial stress. Living in Goderich, booking hotel rooms for over a week while Helaina was in the hospital would not have been affordable. RMHC provided comfort, nourishment, activities for kids, and most importantly proximity - we were steps away and able to get to her in minutes when she needed us.
On the more difficult days, we could visit the Family Room located inside London Children's Hospital. A small quiet corner with all the comfort we needed, away from the hustle and bustle of the ICU. A comfortable space stocked with snacks, meals, coffee, books and toys to take back to Helaina.
RMHC, aka Super House, always provided the tools we needed to succeed in our medical journey. During our hospital stays, we made big decisions. Lifesaving, life-altering decisions. Having a place to decompress, break bread, and collect our thoughts helped us navigate through these decisions. Every time I think of all the things RMH has done for me, and my family, my heart swells with gratitude.
In 2018-2019, we spent every holiday in the hospital with Helaina with RMHC as our home base. Jerard received a haircut on Father’s Day and on Mother’s Day, I received the most beautiful card, and a massage from the Fanshawe Massage therapy program. During Christmas, we were able to visit ‘Holidayland’ set up at the House and chose a few gifts for each other and for Helaina. Stepping out of our room Christmas morning to see “Santa” had delivered gifts was such a joy. I still remember having to borrow a wagon to bring all Helaina’s presents back home.
To show our thanks we head to the RMHC-SWO, every year on my birthday we cook a meal for the families staying there. We've also ran the Cleft Strong Charity golf tournament since 2019, raising over $25,000 to date!
None of these comforts RMHC-SWO provides would be possible without the support of companies, community groups, and donors. Thank you for your unwavering support that gives families the strength and courage needed to keep going even when things get tough.
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