Hello and welcome to my website and my first blog post. I want to take this opportunity to introduce you to my family. I am a storyteller who intends to use this website to share stories about the topics I hold most dear, my family and our special needs life.
Our family life is complicated and messy. I gave birth to two children who have special needs, one since birth and one due to a medical condition acquired in her preschool years. We added a child to our crew from the foster care system who also has a myriad of special needs conditions. It’s complicated. If you know you know, and you’re welcome here. If you don’t know, you’re still welcome here. I want this to become a space for us all to learn about love. Love is what makes families like ours work. And love is what we need when we venture out into the world around us.
I want to introduce you to my crew. First is my husband, Steve. He is the one who stands behind me, always having my back. He is gentle and quiet. Don’t mistake that for weakness. He is not weak, by any means, just quiet. He is the one who quietly moves things (sometimes even people) as our boys deal with big feelings and things spiral and spin while we navigate those big feelings. Steve is the one who sits with whomever is in need of that at the moment they need it, even if it’s 3 o’clock in the morning and he needs to be to work in a few hours. He’s the man who says he’ll be there and means it, even when his heart is breaking from more grief than one heart should ever have to handle. Without this man, I wouldn’t be able to get through this life. He moves through life at my side, helping our family the best he can.
Then there are our children. In total the three have at least 30 conditions, diagnoses, or problems/issues that need attention, treatment, or at least recognition. As their mother, I am responsible for keeping tract of all of those issues. Life is often overwhelming. It is also extremely rewarding. I am blessed to be their mother and guide for their incredible journey through life.
Our special needs journey started way back in 1995 when our first child, Taylor Quinten, who prefers to be called TQ, was born. Only we wouldn’t know we had entered the special needs world with him for 7 years. His autism was not diagnosed until he was in first grade and seven years old. Way back then, diagnoses like Asperger’s syndrome and high functioning autism were just beginning to be identified. There was no term like neurodivergent to describe brains that functioned differently. In other words, we were an autism family before autism was widely known as a spectrum disorder, and before professionals knew much about the higher functioning individuals on the spectrum. His early years were filled with me knowing something was very wrong, but no one being able to tell me what that thing was. So we did a lot of fumbling in the dark of an unknown condition that affected us all without it having an identity. The early years were lonely and filled with self-doubt for me as the mother of an infant and then small child I couldn’t figure out. I was made to feel like I was just a young, naive mom with a fussy baby. It was so much more than that.
The journey got more complicated and confusing when our Miranda was diagnosed in 1999 with Acute Lymphocytic Leukemia with Central Nervous Involvement, High Risk Protocol. All that to mean severe blood cancer that had spread to the fluid in her brain. We spent 3 years as a family fighting her cancer, right alongside dealing with the issues of her brother’s unidentified condition. Then we would spend the next two decades recovering from the entire ordeal and discovering what all of those treatments would do to a small child as she grew into a beautiful young woman. The treatments caused a great deal of damage to her body and brain, but never altered her beautiful spirit. Her bright happy spirit got us through the hardest of times and showed us how to truly live. Eventually she talked us into expanding our family and bringing her the other sibling she just knew she (we all) needed.
In 2013 we added another child to our family through adoption. Our Tommy is our unexpected source of both constant challenge and constant joy. Tommy’s challenges include sever ADHD, a rare genetic anomaly, autism, and a sleep disorder, just to name a few. Tommy also has the most infectious laugh you have ever heard. He can change the mood in the room by simply laughing. He is my gift of joy, despite all of the challenges that come with him.
In 2021, we said goodbye to our Miranda. Her story is one of beauty and heartache woven so tightly together that they cannot be separated. We lost our beautiful girl to Radiation Induced Glioma, or brain cancer caused by the treatment of a different brain cancer (her leukemia) on October 29, 2021. Her life was hard but full of rewards. We cherish the memories instead of wallowing in the hardships. I look forward to sharing many beautiful memories of my unique unicorn of a daughter with you.
We have ventured through this world often feeling ostracized by nearly everyone around us. Sometimes those feelings were mostly in our heads, but sometimes it was obvious that others were uncomfortable around us and unwilling to include us. I think helping other families feel less alone in the world is one of my primary reasons for opening our world here through this site. I know there are more families like ours out there. There are moms who know terminology they wish they didn’t and have skills no one should have to have. Often we long for someone who gets us, gets our lives and our choices. I am here for you and I get it. My hope is that by sharing our story, others will feel less alone.
Get to know us all as you come along on our journey through life, the special version. Sign up for notifications of new blog posts here every week as I tell stories of our life, both memory and present. My story will be different from yours, no doubt. But if you are also a special needs parent, you will relate. Our children may have different diagnoses, but out isolation will draw us to each other. May you see a little bit of you as I share moments of living our life as a special needs family.
