Blog · April 17, 2018

10 Truths about being an EB Parent

  1. We hurt to depths that boggle the mind, but we know joy that others will never understand.
  2. At the beginning of our journey, we may not think we can do this, we may think we’re not good enough, not patient enough, not selfless enough, but we become the parent our child needs.
  3. Friends and family disappear, but those who choose to stay become part of our new world, and they are the most amazing, caring people we will ever know.
  4. We have realized that almost everyone has a tip, advice, or even chiche’ to share, and this never stops. Eventually we have learned how to smile, laugh (or cry) inside, or politely say “thank you”.
  5. We have learned that negativity feeds on itself and we can better take care of our child if we start thinking positive every chance we get and enjoy each day as it comes. In order to live each day to the fullest we practice gratitude, forgiveness and love all around.
  6. Medical professionals tell us things like “he will go to the hospital for infections often”… but our brain replies “… he surely will not. I will make sure of it”.
  7. We enjoy the little things more. Life is slower. Taking care of our children takes longer. We learn it’s not a bad thing, but it can be exhausting.
  8. We learn to put a brave face as we are juggling life. The additional needs of our child gives us feelings of worry, frustration, anger and even guilt. But we love our child with all we have and try everything in our power to make them happy. No matter what.
  9. Money becomes a dark cloud. We have to find extra cash to cover all sorts of equipment or endless copays that other parents never have to worry about.
  10. EB Parents are experts… on their own kids. I could never claim to be an expert on EB, but I do know my child, really, really well.

Love, Light & EB Awareness,