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EB families endure a level of daily stress higher than most parents may ever have to undergo. To witness our children facing the pain, discomfort and uncertainty of epidermolysis bullosa is frightening. Out of necessity and sheer self-preservation, many of us assemble an informal support network, and these ‘EB Lifelines’ can be invaluable, not only in helping us manage the day-to-day care needs EB demands but for moral support and stress management.
November is a month characterized by the spirit of thankfulness, so when was the last time you showed these invaluable cheerleaders how much their support, friendship and care has meant to you and your family? We suggest taking the time this month to reach out and recognize those auxiliary caregivers in the family as well as friends and neighbors who help pitch in when the family is in need.
Maybe take a few moments to make an inexpensive but personalized, homemade card or crafted gift, or instead pick up a gift card to one of their favorite restaurants or stores as a gesture to say simply ‘thank you for being there for us.’ Does your lifeline like flowers or garden as a hobby? Even a flower delivery or purchase of a plant for them to add to their own garden can be a sweet way of saying thanks that will be welcomed warmly. As EB moms and dads, we know that a gift card, flowers or handmade craft cannot possibly convey the magnitude of the gratitude we feel for all they do but it will feel nurturing to the soul to express our sincere appreciation for their support in the various ways they look out for us. Being on the receiving end will certainly remind them of the important place they hold in our life.
The family and friend circles that surround us during the holidays and other joyous occasions are special, but it is their presence during our greatest times of need which comfort us most. When a family faces a life-threatening disease like EB, those connections become so important to the livelihood and spirit of the family. Use this time of gratitude and appreciation for what you have and let those important lifelines know just how critical they are to your family.
