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  Parenting a child with a life-threatening condition teaches you that life is precious. Life needs to be lived one day at a time. If I learned to smile despite the yearning to cry, it’s because my new “normal” was to make him smile. I am done being told what to believe, what to be afraid of, who to trust, what to think and who to hate. Why is RDEB medically fragile? Mostly because of the open wounds and the consequencesRead More →
  Wednesday 18th of April 2018 11:58:27 AM
• 10 Truths about being an EB Parent
  We hurt to depths that boggle the mind, but we know joy that others will never understand. 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. 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.Read More →
  Tuesday 17th of April 2018 12:08:31 PM
• What I’m Into {April 2018 Edition}
  What I am watching I was looking for something to binge on Netflix last month and after watching the first 15 minutes of 3 different shows, I landed on Alias Grace and it immediately grabbed me. Alias Grace takes place in Canada in the 1840s and beyond, and tells the story of Grace Marks, a young, poor Irish immigrant and domestic servant who finds herself accused and convicted of a double murder. The actress that plays the role is riveting,Read More →
  Tuesday 10th of April 2018 11:59:06 AM
• While a Condition May Be Rare, Hope Should Never Be
  Having hope sometimes is a gigantic challenge. A challenge so unsourmantable that it leaves you in tears and gives you sleepless nights. You cry. You scream. You fall asleep in tears. But then you wake up, dust yourself off and move forward, one day at a time. One hour at a time. Focusing on the present becomes imperative. One of the reasons why I have a hard time being part of support groups in general is because there are oftenRead More →
  Sunday 8th of April 2018 12:21:05 PM

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