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 caring girl, even from a very

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 still very overwhelming to think of all that I now needed to worry about for my child. She did give me

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

  Periventricular Nodular Heterotopias & Infantile Spasms   After Sage was diagnosed with epilepsy and started on meds, everything became real. All our fears for the past 2 and a half months became a very real and scary thing, Sage was having seizures. We had about two days of few to no seizures after starting meds, but then they steadily came back. We then put her on two other medications that didn’t seem to help. A few weeks later she was having quite a few seizures still, and one day things just felt wrong, so with our neurologist’s help, we started her on yet another medication.   The medications she was on at this point were: Keppra, Topiramate, and Vitamin B6. For the new medication, Sage had to be monitored overnight because it could affect her breathing and heart rate. We went to the hospital late on August 28, 2021, and had to be “admitted” after they started her on Phenobarbital. (She has been on Pheno longer than any other medication now, coming up on

We have had a pretty heavy year so far. Our lives are pretty consumed with everything Sage goes through, and I hate to say it, but all other needs usually get a back seat to what she needs…even Clover more often than I’d like. 😥😔   This whole year has been a challenge, but just the past week has been a whole different struggle. I was told by a friend that I've become desensitized to Sage’s seizures, and to be honest, I have. If you were to see your baby struggle through seizures so often, multiple times a day, I'm sure you would become desensitized as well. It's definitely not that I don't care, I would not be able to emotionally or mentally handle it if I let myself “feel" It all every time she had a seizure. Most people won't truly understand what that means, only those who have been in a similar situation. So for those who have been lucky enough to not experience seeing your child have hundreds, (more realistically thousands for