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

15 New Years Resolutions for Special Needs Parents With the new year truly underway, I have had a lot of thought on what kind of “New Years Resolutions” I want to focus on for this year, even though we are almost 2 months in. It is as most would expect, get healthier, declutter, read more, etc, etc. But as I was deciding what to put on my “list” I began thinking of what some productive goals would be to make in the realm of being a Special Needs Parent. It can be hard to make hard and fast goals with a special needs child (i.e. walk by X age, talk by X date ). Just last year really put my ambition for these types of goals for Sage to the test. Sage had a really hard 2023 with a lot of regression, disappointments, and struggles, so my idea of a goal for her is to be happy and continue to progress in whatever way that happens. With the struggles of 2023 still looming in my mind, I switched my focus onto what are some goals that I can make for me as a Special Needs P...

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 ...

                                       Epilepsy has been a very big part of our lives since we were blessed with Sage. Epilepsy affects each person and family differently. There are numerous disorders that encompass epilepsy that all come with their own unique struggles. For us, we noticed “strange movements” from the time Sage was 6 weeks old, but she wasn’t officially diagnosed with Epilepsy until the day after she turned 4 months old. (Writing that down right now, just feels crazy…She was so little!)  Sage’s first diagnosis, our first step into the world we are now all too familiar with, was Epilepsy. It was a term I understood, and it was terrifying. I have a cousin with a daughter who also had seizures at a young age, and I reached out to her about what she went through. It was encouraging to know that there are others going through something similar, but...

Diagnosis Journey: Part 3 Aicardi Syndrome, Lennox-Gastaut Syndrome, and Beyond This weekend, September 2nd in particular, has a pretty heavy significance for us. September 2, 2021 was the day Sage had her MRI that diagnosed her with PVNH. Then, exactly a year later, September 2, 2022 she was officially diagnosed with Aicardi Syndrome. The Aicardi Syndrome diagnosis actually started on April 1, 2022 (no kidding). ☺️ After getting the Infantile Spasms diagnosis for Sage, starting her on meds that were helping (Vigabatrin), starting her in therapies, and learning how to keep moving forward with life, things seemed to finally be looking up. We were figuring out how to deal with her seizures a bit better, they had slowed down and she finally started making strides in her development. I was also finally able to focus on Clover more because my debilitating fear for Sage had become a bit more manageable. (Clover was such a trooper through everything and has always been...