Sooner or later it hits you, as you watch other families, “our lives are soooo different.” The unmooring appointments and somber discussions with doctors and nurses, relationships with equipment providers, the notes that are necessary with every new diagnosis or medication change, the constant need for advocacy and explanations…it’s all part of raising a child with a chronic medical condition, a physical or intellectual disability or learning differences. And, as much as we hope, learn and pray, it’s abundantly clear that many of our family’s daily plans, expectations and interactions are unlike those of others and require remarkable bandwidth and tenacity.
Caregiving, illness and disability can be as isolating for parents as it can be for our youngsters. There’s the lack of eye contact in social situations, the missed birthday party invitations, the calls from teachers and coaches and the inherent awkwardness that sometimes requires nurturing in social situations.
Having a group of caring family and friends, attending support groups and on-line chats certainly helps. But, time and again, parents, particularly mums, agree that it’s the benefit of one-on-one support that’s the lifeline. As one mum confesses, “I see-saw between steely independence and a longing to lean on others… to stop pretending I was coping when I was ready to break”. Her story, has a softer ending, when she is introduced to a friend who ‘gets it.’ She’s another CP mum. They quickly became unfiltered and unashamed anchors for each other… sharing a safe place to unpack worries, “parade neuroses, relieve stress with gallows humour.” Together, at least in spirit, and by email, text and phone, the duo share lessons learned, struggles with adhering to rigid treatment regimens, and discussing difficult decisions. Aside from the medical, social and financial issues they encounter, their common goal, aside from figuring out how to cope, is trying to raise their children with as much normalcy as possible.
None of us are experts on friendships. They can be emotional minefields and a complicated mixture of joy and sadness but, most of us who’ve shared a common cause and could use a lighthouse in the storm will agree with C.S. Lewis, “Friendship is born at that moment when one person says to another, ‘What! You too?’ I thought I was the only one.”
Caroline Tapp-McDougall,
Publisher/Editor
caroline@bcsgroup.com
Image: CanStock
