“Home is not a place . . . it’s a feeling.”
Though my family moved into a new home six months ago, just last week I sent out announcements to folks who may not otherwise have our new address; more specifically, those cards were sent to the thoughtful friends from whom we received Christmas and holiday greetings forwarded from our old address. Of course the basic reasons for my lack of communication are simple and consist of common answers we all use daily: life, family, work, holidays, resolutions made . . . and those perhaps already discarded.
Change is often difficult to embrace, regardless of the positives of a new home, new year, new outlook, or new goal. There remains comfort in familiarity and routine. I think we can all agree change is exponentially harder when it is unwelcome, forced, or frightening. Cancer, or any health crisis, is never welcome and brings an upheaval of change. But what happens when the crisis ends; when good health is becomes a realistic goal; when the immediate crisis is over but health is deemed in remission, manageable, chronic, or controlled; or, in the worst case scenario, when the crisis ends with death?
From the moment a child is diagnosed with cancer, parents enter a state of frightening change that will never . . . let me repeat never. . . go away. During treatment, we long to simply be in our own homes, sleep in our own beds, and enjoy a cup of coffee or tea out of a favorite mug, not a paper hospital cup. What I have personally felt and certainly discussed with other parents, however, is that the once safe environment of home can also become a frightening and uncertain place as temperatures are monitored, ports and IV lines are carefully tended to, and the slightest complaint from your child brings about a fear so deep it physically hurts. Parents must be the advocates, nurses, psychologists, nutritionists, therapists, technicians, and medical experts while maintaining the normal duties of family, work, and home.
There are no guide books for parents during or after treatment. We make our ‘home’ with our child and make the best of the circumstances. The hospital is not an enjoyable location, but in those walls, the new home-away-from-home, camaraderie, support, and compassion for child and parent are abundantly found. The adjustment to ‘home’ is not always an easy one and the walls that were once a comfort can be reminders and triggers of deep-rooted fears realized. We fear for our now sick child, but I know I am not the only parent who has communicated with a compassionate oncologist about the complaint of a healthy sibling or loved one wondering if tests or scans should be ordered.
Home. Yes, my family has moved and continues to move forward. The walls of our home look different now both physically and mentally, but the same can be said for all families during and after the crisis of childhood cancer. Home is not a physical place, it is a warmth found indoors, a loving gesture of friendship, an acknowledgement of support; home is the family we hold in a loving embrace or those we hold in our hearts. Like the photos and art I am still trying to hang, the barrage of expectations and obligations following a welcome or unwelcome change must be carefully and thoughtfully curated.
Of all the resolutions we long to accomplish personally and professionally in a new year or any time of year, let us not forget the large and small changes we all face and strive to be change-agents of support, compassion, and thoughtfulness. Let us resolve to be the encouragement to remind each other that home is, in fact, where the heart is and that heartfelt support is not new, it is found within each of us.