To the Edge and Back: A family's journey through rare disease

Rainbow After a Storm  The Grieving Process Of Having A Special Needs Child   “It is understood that the beauty of a rainbow does not negate the ravages of any storm. When a rainbow appears, it does not mean the storm never happened or that we are not still dealing with it’s aftermath. It means that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover, but the rainbow provides a counterbalance of color, energy, and hope.”  -Author Unknown  I’ve already outlined in detail the diagnosis process we went through with Sage, but those topics are missing a significant aspect that is still ongoing for us and many people with Special Needs children. A process that I am still personally going though, sometimes daily: The Grieving Process. The five stages of Greif are: Denial, Anger, Bargaining, Depression, and Acceptance.   Clover has always been a very bright, outgoing, and c...

Holidays with Specials Adjusting Expectations With Thanksgiving just behind us and Christmas and New Years right around the corner, I can’t help but think of how different our holidays can be compared to the “traditional” family. I have always loved this season with so many holidays back-to-back. We decorate early for Christmas and Clover loves to help with it all. When she was little, she would carry around the baby Jesus from one of our Nativities and she is always so excited to put out all our decorations. I cherish the feelings these holidays invoke, the spirit of giving, love, and selflessness. I have tried to make our home a festive place that encourages those feelings as well. But things are different when you have a special needs child. Our first winter/fall with Sage was harder than our previous years. After just a few months of our introduction into the Special Needs world, I thought I had started to come to terms with Sage’s multiple diagnoses, but the reality of what that ...